tag:blogger.com,1999:blog-84970389507044332992024-03-17T23:03:24.758-04:00Teeny and the BeeUnknownnoreply@blogger.comBlogger173125tag:blogger.com,1999:blog-8497038950704433299.post-86413030125626587002018-07-30T23:04:00.002-04:002018-07-30T23:15:54.998-04:00Because I Said So<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-QcH-XzTB6l1o-kKm4_G4miuUay7iB5nEnZWS9Ii1cWfRiLOqAKoQqGwwWUK-hsAJHcEu2pYaXs4a844nRN4TvUswT-WfD-2eZLduMOkj-0N6AC9dHtMWuMr4qMYrImjL6GcVMiKAjMg/s1600/IMG_0900.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="532" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-QcH-XzTB6l1o-kKm4_G4miuUay7iB5nEnZWS9Ii1cWfRiLOqAKoQqGwwWUK-hsAJHcEu2pYaXs4a844nRN4TvUswT-WfD-2eZLduMOkj-0N6AC9dHtMWuMr4qMYrImjL6GcVMiKAjMg/s320/IMG_0900.jpg" width="266" /></a></div>
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About two years ago, our neurologist warned us to start looking for seizures.
"You're very lucky she hasn't had any yet given her diagnosis," he
said, "but it's very common for seizures to begin in these kids around the
age of 6." And with seizures come many more issues that we do not want.<o:p></o:p></span></div>
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<span style="color: #222222; font-family: "calibri" , sans-serif; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">So
for me, Freyja turning six late last year was a little like Sally J. Freedman's
dad turning 42. (I suspect that no one remembers that Judy Blume book but me.)
For me, 42 came and went without incident. And now Freyja is nearly seven. She
has never had a seizure. She also has not yet lost a tooth -- and thank God for
that because when I explained to her upon noticing one loose tooth that all her
teeth would at some point soon fall out and be replaced by newer, bigger,
stronger teeth, her eyes got wide with surprise and she burst into terrified
hysterics. She is, believe it or not, starting piano lessons. She's also
learning to read. It's a true miracle that she has memorized a score or more of
sight words and can detect patterns and sounds well enough to painstakingly
decipher a level one reader with assistance. She struggles to maintain her
focus and when she's had it, she will manipulate you sweetly and subtly to
divert your attention too. ("I love your earrings!" or "Did you
get a haircut?" she will say, hoping the flattery will butter you up so
much that you'll forget all about the task at hand. Don't fall for it!) She is
a smart, silly, and sassy kiddo. She is moving on to first grade in the fall
and despite her many, many related services, pullouts and therapies, still
loves school more than anyone I have ever known. Things are mostly really,
really good. </span></div>
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<span style="color: #222222; font-family: "calibri" , sans-serif; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">Usually,
her sass is cute. Other times, it's infuriating. She can be wildly inflexible,
rigid, uncompromising. A hundred times a day (or maybe just once or twice, but
it feels like a hundred) she will dig her heels in, furrow her brow and
say <i>no</i>. I flush with anger and as I do, I remember that same
neurologist at that same visit telling me not only about seizures, but making
predictions about her behavior and how to deal with it. "You're going to
have to parent her differently than you do Thora," he advised offhandedly.
"You're going to have to give in when it doesn't make sense." I had
no idea what he meant until several visits later when some interesting
behaviors and traits started to emerge. It turns out that behavior
and emotion regulation are controlled by the cerebellum, so while she will
likely not develop behavioral issues worthy of additional diagnoses, we will
most certainly see bits and pieces of lots of disorders we'd rather have
nothing to do with. Her neurologist says we could see aspects of autism,
ADD, ADHD, OCD, ODD, even psychosis. An alphabet soup of letters, but none that
spell necessary treatment any of those issues. Just enough to be on the
lookout. "I would try to manage the behaviors as best as you can on your
own, and only consider medication if any of it disrupts her learning. Remember,
you will have to parent her differently. Take it as it comes."<o:p></o:p></span></div>
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<span style="color: #222222; font-family: "calibri" , sans-serif; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">I
don't like that. I want things to be equitable. It would be so much easier to
treat both of my children the same way, to hold them both accountable for their
behavior in the same way, to proclaim that I don't see disability. I love
making the rules and if I can't make them, I at least like understanding the
rules, discussing the rules, explaining the rules. I'm even okay with
questioning the rules and rewriting the rules, as long as it's reasonable and
we're all on the same page. But when it comes to raising humans with different
abilities and different needs and different stories, this goes out the window.
I think of myself as a (mostly) even-tempered mother, evenly distributing my
time between my kids, disciplining and rewarding in generally the same
way. But that's lazy parenting at best and flat out shitty parenting at
worst. <o:p></o:p></span></div>
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<br /></div>
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<span style="color: #222222; font-family: "calibri" , sans-serif; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">When
I was a child, my mother's automatic response to my questions was "because
I said so." I am a 45 year becauseIsaidso veteran and I can think of
no easier way to shut a child down and to shut a child out than saying
"because I said so." BecauseIsaidso-ing is more than lazy; it's
downright cruel. So when Thora complains that Freyja gets out of doing chores
that she then has to do for both of them, I glare at her and I <i>almost </i>think
"because I said so" at her but before I even complete that thought, I
sigh and sit her down and we talk about it. Again. I launch into how Freyja is
not able bodied enough to bus her dishes, to fold and put away her laundry. She
doesn't have the attention span to sit at the table for an entire meal most of
the time. She needs help feeding herself, dressing herself, going to the
bathroom. She requires assistance. She is underweight and small, so we offer
her seconds and even thirds of everything. At bedtime I read book after book to
Freyja while Thora sits on her bed across the room reading to herself, wearing
noise canceling headphones so she can concentrate. She complains that she has
to clear her sister's place, put away her sister's clothes, that her sister
gets to snuggle and read with me at night. But because I cannot bring myself to
"because I said so" my child, I explain again and again why.
You <i>know</i> why, I say, and then I explain it <i>again</i>.
It's better to be a broken record than to outright invalidate, isn't it? And Thora
gets it. She really does understand. She just wants me to acknowledge that it's
not fair and that as such, she is fully justified in waking me at dawn while
Johnny and Freyja are still dead asleep for a mama-Thora bike ride or some
other quality time activity that I protest loudly at 5:24 am but by 5:27 am I
am roused enough to be over the moon that my other kid has figured out a way to
get her need for attention met despite her sister's best efforts not to share
me with anyone.<o:p></o:p></span></div>
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<br /></div>
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<span style="color: #222222; font-family: "calibri" , sans-serif; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">When
Freyja complains that Thora gets to ride a bike or a skateboard or her
Rollerblades, when Freyja complains that Thora gets to be outside with her
friends, that she can climb trees, that she goes to nature camp, coding camp,
swimming camp, that she gets to have sleepovers, take art classes, go on hikes.
The reason for this one is much more straightforward but a lot harder to talk
about. Freyja knows she's different. Sometimes she likes it. But mostly, being
the disabled kid is really hard.<o:p></o:p></span><br />
<span style="color: #222222; font-family: "calibri" , sans-serif; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><br /></span></div>
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<span style="color: #222222; font-family: "calibri" , sans-serif; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">Some
of her disability is right out there for the world to see and to question and
to comment on. Usually, she is patient with people. She encourages questions.
She shows off her walker to anyone who looks at it. "It's my walker,"
she explains proudly most days. "I need it because my legs don't work like
yours. Do you want to try it?" or when we bump into the neighborhood kids
playing outside, she'll eye their pink bikes with tassels and lights and bells
and say, "I don't know how to ride a bike because my balance isn't good."
On those days, I am amazed at her resilience and understanding. Other days she
is less patient. "I was born this way," she snapped at a girl who
kept pointing at Freyja to her mother in Whole Foods a couple weeks ago. Freyja
was tired and hungry and I knew it but the other kid didn't, and she turned
away, ashamed of herself.<o:p></o:p></span></div>
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<span style="color: #222222; font-family: "calibri" , sans-serif; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><br /></span>
<span style="color: #222222; font-family: "calibri" , sans-serif; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">Other
aspects of her disability you can't see and she can't explain. She gets
frustrated easily and when she does, words fail her. Her sass can turn to anger
more quickly than you'd expect, and it catches us off guard because it seems to
come out of nowhere and catch her off guard as well. I remembered the
neurologist's warning, and how it made so little sense at the time. Little
behavioral contradictions pop up every day. She doesn't mind making (and
leaving) a huge mess, but she follows me around the kitchen obsessively
shutting drawers and slamming cabinet and pantry doors I've absently left ajar.
Out of nowhere she reminds me of something I'd offhandedly promised her weeks
ago (mama, remember when you said we'd go to the nail salon and then buy a new
pink lipstick) but she has no recollection of an entire book we read just last
night. She transitions fairly easily (I'm ready to go to bed now, so go sit in
your office and wait there for me to fall asleep and then check on me in ten
minutes, okay, mama?) but she struggles with sudden change. If she has her mind
set on something, she absolutely must see it through or all hell breaks
loose. <o:p></o:p></span></div>
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<br /></div>
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<span style="color: #222222; font-family: "calibri" , sans-serif; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">This
last one is especially challenging for the parent who runs out of patience all
at once. In other words, me. And Johnny. And probably every parent I know. This
is me in a nutshell: patient patient patient patient patient patient
gotosleeprightnowIsaidnow! And, to myself: whydidI havekidsagainIcan'tdothis.
All in one breath I go from absolute angel mama to my kids's worst nightmare.
It doesn't happen often but when it does, and Freyja has her mind set on
something. she is unwavering, undeterred, completely inflexible and
uncompromising. It's awful. <o:p></o:p></span></div>
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<br /></div>
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<span style="color: #222222; font-family: "calibri" , sans-serif; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">When
I'm not in it, it's easy for me to wax poetic about the role of the parent. We
are guides. We teach children resilience in the face of frustration. Life is
frustrating. We can't fix that. We can't protect them from it. We can only
prepare them. But at the same time kids need structure. They need discipline.
They need to be told no. They can't have everything they want. They have to
learn or they'll walk all over us. Right?<o:p></o:p></span></div>
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<br /></div>
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<span style="color: #222222; font-family: "calibri" , sans-serif; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">Every
six year old does this, right? (Except Thora never did.) But okay, it's normal
and age appropriate. Now add the part of Freyja's disability you can't see. The
sum is that telling Freyja she can't finish telling me about her rose-thorn-bud
for the day because it's 7:02 is becauseIsaidso. A rose by any other name is
still a rose, isn't it? I do not want to push my child down the ugly rabbit
hole that I spent so much time in as a child myself. Any child would feel
disenfranchised by my first drawing a random line in the sand and then
punishing her for stepping over it today when it wasn't there yesterday or the
day before. And Freyja simply does not have the resilience to say "Mama, I
do not understand this." Instead, because of her neurological makeup, she
freaks the fuck out. Which pushes my last nerve and then I freak the fuck out
too, only louder and with nastier words because while I don't like it when she
curses, who's going to stop me because I'm the adult that's why, and then she's
screaming and I'm screaming too and then Thora's screaming and everybody's
miserable. Nobody goes to sleep, nobody gets the doll or the cup of water,
nobody gets to go downstairs and read a novel. Nobody wins. And because of
her neurological mishegoss, once Freyja gets stuck it is very, very hard to get
her unstuck. Once she's pushed herself past a certain emotional point, she
just cannot regulate her emotions well enough to pull herself back. She can't
self-soothe. So what happens? Yep: that's when I give in. She gets the thing
she originally wanted so long ago. But I am resentful by this point, so I throw
the thing at her, refuse to be nice about it, tapping my foot and muttering
under my breath for her to hurry up already. And everybody's still
miserable. <o:p></o:p></span></div>
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<br /></div>
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<span style="color: #222222; font-family: "calibri" , sans-serif; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">A
rested, saner version of me knows that these moments are not battles. Or,
rather, they don't have to be. This is not the kind of situation that requires
me to be the disciplinarian, the louder voice, the powerful adult. Letting her
finish her book or get <i>that</i> doll not <i>this</i> doll
or have peanut butter and jelly when there's a full plate of mac and cheese in
front of her that no one else will eat is not being soft or spoiling my kid. At
worst it's me picking my battles. At best it's me seeing her, hearing her,
validating her as an equal part of the equation. When her requests, or, let's
be real, her demands, seem arbitrary and annoying to me, I have to take a look
at how my rules seem to her. Bedtime is generally at 7:00, but we routinely
break this rule when I end up working late, when my phone rings, when it's
Sunday Night Movie Night and the movie runs long, when Thora is so into her
chapter of Harry Potter that she begs to keep the light on for ten more
minutes. So why not break the rule again tonight so Freyja can rinse with her
bubble gum flavored mouthwash one more time or find the Groovy Girl with the
blue hair not the pink and purple hair? If I chase her around shoving as much
high-nutrient, high-calorie food in her as I possibly can, why indeed would I
say no to making a PB&J even if it means the chickens end up eating her
untouched mac and cheese because she changed her mind about what she wanted
after I started cooking? Don't we both win in all cases? So what if it takes
two more minutes for her to get in bed with cleaner teeth, the right doll, one
more cup of water? She goes to bed happily and I have my evening minutes two
minutes. So what if I have to make a PB&J when there's perfectly good
food right her? She'll get a good meal (and so will the chickens) and really
who the fuck cares anyway? Day in and day out, I beg her to eat, so why push
back when she wants something different than what I made? It's a peanut butter
sandwich, not a six course meal. My rules must seem as random and unimportant
to her as her requests to bend the rules I set seem to me. <o:p></o:p></span></div>
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<br /></div>
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<span style="color: #222222; font-family: "calibri" , sans-serif; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">Saying
because I said so, or living the because I said so way of life, just feels
wrong. Why strive to win a fight with a six year old? Why even engage in a
fight with a six year old? And a six year old with a disability we don't fully
understand? To prove a point? To not feel manipulated? To be right? To feel
powerful? As a young person, I always wanted to be right. I loved having the
last word, I loved correcting everyone around me. I did it without even
thinking. My mother's dyslexia and her Lawn-Guyland accent meant she misspelled
and mispronounced words time and time again. She added consonants to some words
where there were none and subtracted others where they were intended to be. My
friend Dina because Deen<i>er</i>, my Nana was always Nann<i>er</i>. She'd mispronounce something
for the eight hundredth time and for the eight hundredth time my father and I
would both automatically -- and somewhat gleefully, I have to admit -- correct
her. "Whatevah," she'd respond, not even listening. "Uccch.
Mom!" I'd shriek, every single time. "It's Nah-<i>nah</i>. Whatev-<i>errrr</i>.
Whatever. Why can't you get it right?!" I lived in a perpetual state of
exasperation. My mother might have becauseIsaidsoed me night and day, but I was
smarter than she was and I knew it and I wanted her to know it. Whatever she
mispronounced, mispelled, misremembered, whatever she couldn't get right, it
was my job to point it out. And to what end? My mother never listened. Or if
she did, it didn't change anything. It was frustrating for everyone,and for
nothing. But I did it anyway. <o:p></o:p></span></div>
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<span style="color: #222222; font-family: "calibri" , sans-serif; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">Until
recently. Mercifully, being right at any cost has finally lost its appeal.
Johnny got so sick of me correcting him that he finally said "Just stop
it. It's too easy for you. I know you're smart. You're always right and I'm an
easy target and it makes me feel like I shouldn't even open my mouth around you." Which made me feel like a bully and I regretted all the times I was
horrible to my mother because I was trying to take power back from her
unequivocal, unwavering becauseIsaidso mentality. What this looks like when I
am with my mother or my spouse is me biting my lip, holding my tongue, gritting
my teeth to stay quiet until the moment passes. Would I rather be right or have
peace? I'm going with peace. <o:p></o:p></span></div>
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<br /></div>
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<span style="color: #222222; font-family: "calibri" , sans-serif; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">So
when it's bedtime and I'm at my wits end and will absolutely lose my everloving
mind if I don't get out of their room righthtisinstant and Freyja wants to
finish telling me her shaggy dog story or get a drink of water or do the
mouthwash again because the first time she didn't remember to swish long
enough, and I talk over her protests and she howls and I howl and we're
suddenly both very, very unhappy, and I'm tempted to scream "because I
said so!" and flee, leaving her in a crumpled heap of tears and exhaustion,
feeling entitled to my evening and my peace and quiet, it's suddenly so easy to
see that Freyja's tenacity is just part of her neurology. When she narrows her
eyes and sets her jaw, she is not saying "I am going to win this
fight" or "it's my way or the highway." She needs help. She's
saying <i>help me, Mama. Help me.</i><o:p></o:p></span></div>
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<br /></div>
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<span style="color: #222222; font-family: "calibri" , sans-serif; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">I
have to remember that I am the grownup and that I can change my strategy.
Clearly what I am doing is benefiting no one, myself included. Saying yes to
minor things is not the same thing as abdicating all responsibility. It's not
the same thing as spoiling my children, giving them no structure. It's not the
same as letting Freyja get whatever she wants. It's recognizing a variety of
things: that I don't want to turn into my mother (sorry, mom), that I have
better communication skills than I was initially raised with, that my kid needs
more from me than I am prepared to give because her sister doesn't do this and
it is therefore unjust and unfair and wrong. That I have to be more thoughtful
and intentional than fair, that I have to actually pay attention to what might
be under someone's words. I have to be confident enough as a parent and a human
to recognize that raising Freyja is a dialogue, a give and take, an ongoing
opportunity to check myself. When I do this, there is more harmony. And
magically, when I say no for a real reason: that's not safe, we have to go to X
instead, we're out of mouthwash or peanut butter or whatever but I'll pick some
up tomorrow, we left the doll in the car, she seems to be able to hear it.
She's not constantly braced for a fight, and neither am I. <o:p></o:p></span></div>
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Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8497038950704433299.post-56680483756285613102017-10-18T21:40:00.003-04:002017-11-08T15:50:27.903-05:00Message In A Bottle<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
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<span style="font-family: Arial, sans-serif; font-size: 10pt;">If you were here right now, you
would be here. With me. I might have texted you earlier to tell you what a
total crap day today was, what a shit week it’s been and what a completely
challenging month I’ve had, and you would have dropped everything to come to
me. You would have acted like there was nothing in the world more important
than being with me, like there was nothing in the world at all other
than me. Never mind that it's your birthday, that you probably have a million
other people to see and things to do. For this moment, you let me feel that
it's all about me. That is just what you do.</span><span style="font-size: 10pt;"><o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Arial, sans-serif; font-size: 10pt;">You'd materialize, full of energy,
and tell me to grab a scarf and a jacket because we were going out. You'd take
me for a fancy massage or to buy a pair of shoes. We'd sit at one of our
favorite restaurants and order way too much and I'd talk and you'd listen and
you'd wince at my stories and mutter "oooh, that stupid fucker" or
"you tell 'em" or some such under your breath as I poured
my heart out to you, making me feel like you were my number one fan, my
cheerleader. To you, I was always right. Those stupid fuckers just didn't get
it, they just didn't understand us.</span><span style="font-size: 10pt;"><o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 10pt;">You'd hold my hand, insist I take
the leftover food home for lunch tomorrow, maybe slip me a check when I wasn't
looking, with a scribbled note not to spend it on bills but to buy myself
something completely frivolous. You'd pass along a book you just finished
reading because you knew I'd like it too, you'd put me in a cab and make sure I
got home safe. You would text me the next day, asking about that stupid fucker
so-and-so. A week later something might appear in my mailbox: a note, another
book, some tiny thing that only you would know I wanted or needed. You had a
way of making me feel so loved and so important. You didn't hold back. </span><span style="font-size: 10pt;"><o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 10pt;">Since you've been gone, I've grown
a lot. I have had to face so many new and scary things. I do things I never
thought I would be able to do, fight for things I never thought I would have to
fight for. I look at my babies -- not babies anymore -- and think of you, at
that restaurant on Cortelyou, that day when everything changed. Neither of us
eating, you holding my brand new firstborn, touching her nose, her cheeks. I
think about the text I sent you ten months later -- no words, just the picture
of the stick and the little plus sign. You were the first to know. I think of
how tragic it is that my girls don't know you. They're growing into beautiful,
strong, brave humans. I know you would be so proud of them. In my mind's eye I
see you reading to them, advocating for them, snuggling them. You'd be there
some afternoons to greet them as they come off the schoolbus. You'd read to
them often, give us date nights monthly, go apple picking with us every year.
You’d know better than the rest of us how to put Freyja’s braces on, how to get
her to swallow a pill, how to get both of them to try new foods. You’d brush
Thora’s hair and let Freyja try on all your jewelry, sit patiently through
puzzles and Legos and hours of coloring. I think you'd approve of the kind of
mom I am becoming, and this thought is more validating than any other
compliment or vote of confidence I've ever gotten. And then I remember the last
thing you ever said to me, six and a half years ago, wishing me a happy
mother's day. You told me you loved me and I believed I was going to hear you
say that again and again for the rest of my life.</span><span style="font-size: 10pt;"><o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 10pt;">So much about my life is different
now. I think you'd think I work hard at my job, my marriage, my
life. I remember you told me once early on that the one thing you wanted
to know all those long years was that I was happy. I wasn't then. But I am now,
and I think this would bring you great joy. You loved Johnny too -- just
because I loved him. You believed in him when many others didn't want to give
him a chance. I wish you could see what a wonderful father and partner he has
become, just like you knew he would. I think that would make you beam with
pride. </span><span style="font-size: 10pt;"><o:p></o:p></span></div>
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<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: Arial, sans-serif; font-size: 10pt;">In recent years I've made many big
decisions. I'm not sure you would like them all. Do you know I cut my hair off
-- never once thinking I might look like a poodle just like you did the last
time you cut yours? I have a picture of you with that 'do. You loathed it! I
wonder why on earth I thought it would be a good idea to do the same thing. I
imagine you laughing with me, maybe even a little at me, lending me one of your
Red Sox baseball caps or offering me box of bobby pins to get me through that
never-ending awkward stage. Do you know we now live 3 miles from your
house? I can't imagine living anywhere else now, and yet I wonder that if you
were here whether you'd think the town was big enough for the two of us. And do
you know that I met him? You were so reluctant, and while I had you, I
never felt the need. But then you were gone and he appeared, almost out of
nowhere. And it was wonderful and difficult and somehow totally natural, and
then before I knew what was happening, I lost him too. Do you know that he
never stopped loving you and me? The three of us had so much unfinished
business. Some days it's hard to muster up the ooomph to keep at it without you
both, but everything I do, I do for all of us. Do you know how much I miss you?
That my unique memory of you lives on in so much that we do and feel and are?</span><span style="font-size: 10pt;"><o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 10pt;">I try not to think about how unfair
it all is, how robbed I feel. Instead I think about how lucky I am to know you
loved me, that you wanted me. Both of you did. This is a warm and soft blanket
I carry around with me everywhere. It energizes me, emboldens me. It's a
private little hug I give myself when I need it most. You loved me. You
wanted me. My existence has value. </span><span style="font-size: 10pt;"><o:p></o:p></span></div>
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Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8497038950704433299.post-56162425833659793102017-09-22T23:09:00.000-04:002017-09-22T23:41:18.088-04:00On Six Years of Freyja-hood<div dir="auto" style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0); font-family: -apple-system, HelveticaNeue; font-size: 16px;">
Freyja turns six tomorrow. </div>
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Today was a rainy day of mini-vacation on Cape Cod. There were Mad Libs, there were board games, there was reading, there was the telling of stories. As she got in the bath tonight, I told her the story of her birth and she rolled her eyes and groaned and said "But I already <i>know</i>, Mama!"</div>
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Considering the complexity of this child, it's a pretty simple story. I will leave out the drama for the squeamish readers and summarize here: Early one morning, spouse says: I'm cancelling my plans for tonight. I feel like I should stay home just in case. Remembering the way my first birth went, I say, no, go ahead and keep your plans! This baby has another two weeks to go. Have a nice day! And off I go to work and about five hours later I go into labor at my desk. Since the last baby took five days of labor to make up her mind about coming out, I think nothing of the contractions and reassure people that everything's fine and there's no cause for alarm. Then I lose my mucus plug while interviewing a candidate for a position on my team (whom I immediately hire), think I am bleeding to death, go get an emergency ultrasound, am told that I am definitely in labor and that I should under no circumstances go back to the office or go anywhere but straight home. In the cab, I alternate between not wanting to scare the cabbie into thinking I will give birth in the backseat of his car and expressing extreme gratitude that my spouse's spidey sense was dead on. He was home to receive me. Figuring we have a long night ahead of us, I sit on the birthing ball, bouncing and screaming and watching a season and a half of <i>Breaking Bad</i>, try to take a nap as Ina May Gaskin advises, and then lie in the bathtub for so long that I don't realize I am transitioning until I am puking all over myself. Spouse calls midwife when my screams become continuous but for the retching. Midwife shows up in a flash and says "holy shit you're having this baby right here in the bathtub, right now" and seventeen minutes later it's 5:03 am and I have a baby on me and a plate full of Oreos that I cram into my mouth two at a time because my blood sugar is low and giving birth makes me hungry in the kind of way that only a gigantic bag of double-stuf Oreos and a newborn baby can satisfy. Midwife and doula clean up and clear out, other child wakes up, spouse passes out from exhaustion and I don't sleep well for the next five and a half years. The end. </div>
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So six years ago I was having the homebirth I always wanted, giving birth to a second daughter, completing my family and perfecting my life. </div>
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Five years ago I knew there was something terribly wrong with my baby and was trying desperately to convince everyone else that she needed evaluation and help.</div>
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Four years ago I was drowning in diagnoses and medical information, trying to navigate the Early Intervention system in New York City, knowing that if she lived, we would leave. If we stayed, she wouldn't stand a chance. </div>
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Three years ago she was placed in the wrong classroom. I knew it on the first day of school and it took the DOE an entire year to move her. So much precious time wasted.</div>
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Two years ago we made the decision to leave our hometown, the Big Apple, where were were both born and raised and where we'd always been sure we would also die. We knew it was the right thing to do to give both of our children what we felt they needed and deserved.</div>
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One year ago I felt hope as she started her last year of preschool in a truly integrated, inclusive setting.</div>
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And here we are today, getting ready to celebrate her birthday. It's a celebration of life. Her <i>life</i>. Of beating the odds, a day at a time. For the older she gets, the more victorious we feel. Her diagnosis is cruel and unforgiving, but she doesn't know it. It doesn't stop her and she doesn't let anything stop us. We are sleeping a little better now because we mostly believe she will be alive when we go upstairs to rouse her every morning. She is thriving and blossoming and she is just so busy <i>being</i>.</div>
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She has big plans for her birthday. She has a fancy dress to wear and wants cake and donuts and presents and family and friends. She tells everyone she sees that she is turning six on September 24th and that she is <i>really</i> excited. But her party is a week later, so she plans to celebrate all week long. And then it will be Halloween soon and she's going to be Princess Anna, who is from <i>Frozen</i>, in case you didn't know. She rattles this all off to the checkout person at the grocery store, the barista at the coffee shop, the bus driver, the lady who cleans the bathrooms in the town center. And they look down at her and I watch them take her in, their eyes running over the walker, the leg braces, and the sparkly eyes and big smile. I see her as they see her and I watch as they fall in love with her and I am proud that she is mine, this little being who spreads joy wherever she goes, warming the hearts of everyone she encounters. </div>
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In a way, Freyja is Milo, the main character in my favorite book of all time, <i>The Phantom Tollbooth</i>. Milo is sent on a journey, the truth of which the King of Dictionopolis and the Mathemagician both know but refuse to tell him until he has returned successful. Instead they wish him well, set him up with an entourage consisting of bugs and dogs to keep him safe, give him tools to fight the demons he will surely encounter, and send him on his way. </div>
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Remember that thing we told you we couldn't tell you until you were back? the kings say to Milo at the festival they hold in his honor upon his return, having rescued the princesses of Sweet Rhyme and Pure Reason and restored them to ruling the kingdom of Wisdom. Yes, he says eagerly. What was it? "It was impossible," one of them says, very seriously. "Completely impossible," says the other.<br />
<br />
If Freyja is Milo, then I am the King of Dictionopolis, powerless to fix the plight of my own child but with a head full of all the letters and words in the whole world, and Johnny is the Mathemagician, with a magic staff that rewrites all the formulas and creates solutions to unusual problems. We created this child. We unwittingly set her up for this journey, and now, just shy of six years in, we can look at her and marvel. What we knew would be completely impossible, she has done. </div>
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But I'm never going to tell her that. </div>
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At Back to School night a couple weeks ago, several parents came up to me, introduced themselves, and told me they hear about Freyja every single day from their kids. I smiled and made small talk and chatted about play dates that probably won't ever happen, and I wondered how they knew I was her mother. How did they know? I had no name tag on. I hadn't even opened my mouth. Do I just exude L'Air Du Special Needs Mama somehow? </div>
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I pondered this as I sat down in her tiny chair. We listened to her teacher as she talked about school rules, field trips they needed volunteer chaperones for, allergies in the classroom, ziploc bags full of extra underwear and socks I needed to send in. In seventeen little folders on the tables were seventeen green sheets of paper, upon which we were asked to write down some emergency contact information. Under this was a blank space, at the beginning of which read: "Tell us a little bit about what your hopes and dreams are for your child to achieve this year!" I chewed my pen cap, thinking. I peered over at the mom next to me to peek at what she was writing, but I couldn't see. I wondered what other parents said. I want Junior to be able to read chapter books this year. We hope that Molly continues to benefit from the socialization that preschool provided last year. Who knows? I closed my eyes for a moment and then I wrote: "Freyja is a hardworking, determined child who benefits from an inclusive environment with neurotypical peers as models. Of course we are concerned about her academics but even more important to us is this: We know that schoool, like life, is full of joys and frustrations. We want Freyja to be able to face both as she grows. She will never stop working toward her goals. If she knows you are working with her, she will never ever let you down, so please don't ever give up on her." And I folded the green sheet of paper and dropped it into the pile on the teacher's desk and walked out into the night, back toward home, to my sleeping girls, to the life that I never knew was possible until Freyja came along. </div>
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Unknownnoreply@blogger.com7tag:blogger.com,1999:blog-8497038950704433299.post-19230838485112405982017-09-08T19:34:00.001-04:002017-11-07T22:49:47.116-05:00(Tell Me What Inclusion Looks Like!) This Is What Inclusion Looks Like!
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A few weeks ago Freyja and I visited a friend who'd had
surgery on his jaw. In order to recover, he had to have his jaw wired shut.
Talking was understandably challenging; he spoke through gritted teeth with a
wet hiss and a mumble. She looked at him quizzically. "You talk
weird!" she said to him. "You talk weird too!" I reminded her.
She looked at me in shock. "No I don't, Mama!"<br />
She doesn't know, I realized. Or maybe she doesn't care. As she says over and
over, "I'm just Freyja!" In many ways, she's just a kid like your kid
and your kid and your kid, only her brain doesn't talk to her body
the way your kids' brains do. And she belongs in this classroom and in this
school and in this world just like everyone else and she has never been taught
anything different.<br />
Her new school is great. It's a public school. Her sister goes there too; they
are in the same school for the first time in their lives. The district has
wheelchair accessible yellow school buses so they are now riding together. She
has a lovely new 1:1 who meets her at our house in the morning and rides the
bus too. She works with Freyja all day long, providing individualized
instruction when she needs it. Freyja receives many services that she needs:
PT, OT, speech, adaptive PE and literacy sessions. And her school has been
supportive since we began the transition process last spring. They are doing
everything they can to ensure that she is safe and that she has all the tools
she needs to succeed. They've watched her walk, measured how well she can reach
the sink, the water fountain, the toilet. They've arranged for adaptive seating
and adaptive step stools. She's been evaluated for adaptive technology and will
be learning to keyboard as the other kiddos learn to write. She is learning to
navigate the school with the elevator and ramps, since stairs take her a very
long time. And now I have another reason why it's so awesome.<br />
Last Wednesday was her first day. I was a little distracted all day long
because I was worried about how she would do. So when my phone rang while I was
at a work lunch with five people from out of town, and it was the school's
number, I ran out of the restaurant in a panic. "Everything's fine,"
the voice said. It was the school psychologist. "She's doing great so far."
She was calling because some kids already had questions, she said, and she
wanted some advice for how to handle it.<br />
I told her that last winter we'd visited her preschool classroom. We talked
about her disability openly with the kiddos. We answered their questions, reassuring
them that the van she arrived in was not an ambulance, that she was not sick,
that she likes the same things as most kids do. She gave all the kids a turn in
her walker and they squealed with delight, zooming around the room with it,
hopping on one leg to try to get a sense of what it feels like to rely on your
arms to walk. It was a good visit, I told her, and we could do something like
that again if it's helpful. "Hmmm," she said, thinking. "I don't
know if having you come in is the right thing." She paused. "What do
you think?"<br />
Well, why don't you ask Freyja? I responded, and she said that was a great
idea. An hour later she called back and told me that Freyja was really excited
to have us come in with her. So that's what we did.<br />
It made me so happy that they asked Freyja her opinion. It made me so happy
that this came up on the first day of school and not halfway through the year.
It made me so happy that the school staff wanted to address the other kids'
curiosity and questions openly and with respect. This is the kind of thing that
encourages inclusivity. It normalizes difference.<br />
When we arrived, the kids were seated on the floor. There were lots of grownups
in the room, including the brand new principal. We sat right down on the
floor. I read a book I love called Susan Laughs. This book talks
about all the things that Susan does and likes and feels. She sings and swims
and gets angry and sad and laughs and dresses up and does all the things kids
do. It's not until the last page that you see that she uses a wheelchair. I
asked if any of the kids like to do ballet and go swimming and play dress up.
Hands flew up and many kids started telling us about their swim lessons, their
summer vacations, their dance classes, their Batman costume. And then we got to
say, well guess what? Freyja loves to dance and to swim and to play dress up
too! She's just like you!<br />
We showed the class her braces and her walker and asked them if they knew what
they were for. Freyja explained that they both help her walk because her
balance isn't good and her legs aren't that strong. A girl with a cast on her
arm talked about how long she has to wear it to keep her wrist straight, and I
told them that Freyja will likely wear braces on her legs for life to keep her
ankles straight. I explained that she isn't sick. Nothing she has is
contagious. That they can expect her to apologize if she bonks into them with
her walker. They took turns trying her walker and a few asked to try the
wheelchair too. Some of the grownups asked Freyja pointed questions about how
she gets around the school, what she needs, and how the other kiddos could help
her. She answered well and I was proud.<br />
On our way out, the principal caught up with me. "You used to be a
teacher, right?" he asked. I admitted that yes, I was. He smiled and said,
"it was obvious."<br />
But it wasn't. It doesn't matter that I was a teacher -- my teaching experience
is with kids way older than these. I know nothing about early childhood
education. What I do know is that we never pretend that Freyja is typical. It
shocks me that some families are "in the closet" about their kids'
disabilities. That doesn't help anyone! Why pretend that your kid is something
she really isn't? Why pretend that everything is a certain kind of normal when
being open and honest and visible makes being atypical normal too?
When I hear kids whispering about her walker or her braces or her limp, we
always stop and talk to them respectfully. We invite questions. We let kids
take a spin with the walker or in the wheelchair. I don't reprimand them for
talking about my kid or pretend I don't hear them. Kids are curious and Freyja
loves to tell them about herself. I mean, her walker is really cool -- it's
pink and shiny and looks like a weird sort of scooter. Her braces are
interesting. She herself is fascinating. So why not let them ask? Freyja knows
how to answer these questions by herself now. And she has no idea that she's
radically different from anyone else because when it comes down to it, she's
really not.</div>
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Can you tell which one is the atypical kid's?</div>
<!--EndFragment-->Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8497038950704433299.post-78371241881774529932017-09-08T13:54:00.001-04:002017-11-07T22:44:59.281-05:00Freyja started kindergarten!<div dir="auto">
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<br />
Freyja started kindergarten last Wednesday.</div>
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<br />
I don't think I will ever get tired of saying that.</div>
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<br />
Freyja. Started. KINDERGARTEN. In our local mainstream public school. She's in
school with her sister. She took the bus there with her sister. She is in
public school. In the same school as her sister. We are taking it a year at a
time, yes. But we are taking it! </div>
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<br /></div>
<div class="MsoNormal">
The night before the first day of school, I wrote my girls
letters. I read them out loud as they got ready that next morning. As I read
them, Johnny made barfing noises in the background because they were so cheesy.
All the same, I want to include them here.</div>
<div class="MsoNormal">
<br /></div>
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Here's Freyja's:</div>
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<br /></div>
<div class="MsoNormal">
Dear Freyja, </div>
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<br /></div>
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It's been such a joy to watch you prepare for kindergarten,
and here we are the night before your first day. You've worked so hard for this
moment and you've defied all the odds to get here. You are in a mainstream
public school! You have a small army of people to support you and ensure your
success. You are determined and tenacious and you don't know failure. You are
the you-est person I have ever met, so self aware and so unwavering in your
very Freyja-ness. </div>
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<br /></div>
<div class="MsoNormal">
My daring precious peanut, I wish you knew how many people
are in your corner and have been since your birth. I wish you knew how many
hearts you have touched and how many hands have supported you every step of the
way. You are so loved and we are proud beyond words of who you are and all you
have accomplished. </div>
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<br /></div>
<div class="MsoNormal">
We don't yet know where you will lead us in the future. We
don't know what you will need and how you will grow and change. But I do know
that tomorrow you will start kindergarten and at the end of the month you will
turn six. You will have already accomplished more in your short life so far
than many people much older than you. We are so excited to be along for your
adventure. I love being your mother with all my heart and soul. And I love you.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Love love love,</div>
<div class="MsoNormal">
Mama</div>
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<br /></div>
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And Thora's:</div>
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Dear Thora, </div>
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<br /></div>
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I'm writing to you the day before school starts. You are
about to start second grade. Your hair is getting long. You just got your first
skateboard, and you already ride it competently. You are an artist. You still
have not lost a tooth. You are seven and a half and you are beautiful, smart,
creative, brave, kind, silly, and wonderful. You are the center of my world and
I love you and am so proud of you.</div>
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<br /></div>
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In second grade you will learn so much. You will read more
and do more math. You are a Bay Stater now, and you'll learn more about your
adopted hometown and state. You will do more art, more music. We will ride our
bikes and you will skateboard with Daddy until it's too cold. Your hair will
grow longer if you promise to keep brushing it, and you will grow taller. You
might even lose a tooth or two.</div>
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<br /></div>
<div class="MsoNormal">
You will make more friends. You will work hard and play
hard. And I hope you continue to fall in love with life. You are precious to me
and to the whole universe. Enjoy school, enjoy life, enjoy being you!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I love you to infinity and beyond.</div>
<div class="MsoNormal">
Mama</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOk_zkfp15YsKBZ8mcpeIOK-7gBRiDfOJYfsgHDi705eGWSXL8Pxjfs7z3rGfHRJ4myQ-ZoD2kLctRUOQdFPsq2xqi2LVXvdY0dcc4qxGvcbrhhCtyZYIwjt_zVqkMBeLdfdDi5Zbc10Q/s1600/IMG_4207.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOk_zkfp15YsKBZ8mcpeIOK-7gBRiDfOJYfsgHDi705eGWSXL8Pxjfs7z3rGfHRJ4myQ-ZoD2kLctRUOQdFPsq2xqi2LVXvdY0dcc4qxGvcbrhhCtyZYIwjt_zVqkMBeLdfdDi5Zbc10Q/s320/IMG_4207.JPG" width="240" /></span></a></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8497038950704433299.post-30063016393118138032017-08-18T01:14:00.000-04:002017-11-07T22:47:09.208-05:00The Essence of Freyja<br />
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Yesterday I thought of something really clever to describe what life with Freyja is like nowadays, but when I sat down at the keyboard much later in the day, that clever thought had vanished. Man, it was good. But you will just have to trust me on that one because it's gone. Poof! My creative juices haven't been flowing much lately and my memory isn't what it used to be. I have aged a thousand years since you last heard from me and it's been a very long time since I have had the willingness to write a word. I have lost and re-gained twenty pounds. I have gone through early but permanent menopause. I have so much neck and shoulder pain that I can't sleep at night. My hair is greyer and greyer and my face is tired and wrinkled. I don't make time for friends and because I'm so bad at it, they don't make time for me either. And I can't say I blame them. To be the kind of parent I need to be, I am now a lousy friend. </div>
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Life is moving really quickly, and Freyja is growing up fast. I know I won't remember things if I don't write them down, and I worry so much that someday she will not be with us that I want to remember every minute. All the good stuff, and the bad too.</div>
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<br /></div>
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Freyja is almost six. She is about to start kindergarten in our local public elementary school. She is no longer <i>Teeny</i>. When I call her almost anything other than Freyja, she corrects me, saying "No! I'm just Freyja!" She loves her name and says it beautifully now. She used to call herself something like "Vaya" and no one understood her when they asked her name. Now she pauses and says proudly and clear as day: "My name is Frey-ah. <i>I am Frey-ah.</i>" </div>
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<br />
She does occasionally let me call her <i>peanut</i> now. She's still diminutive and adorable, so I insisted<br />
that she answer to something cutesy at least some of the time. I tried out all kinds of nicknames but she would have none of them. Until <i>peanut</i>. She tolerates it and responds to it and reminds me often that she is a <i>really big</i> peanut because she is a big kid, not a little kid anymore. She is. She's my really big delicious and precious peanut. She is a beloved little sister, a charming student, an impressive patient, and the biggest mystery I've ever encountered.</div>
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On the one hand, Freyja experiences growth and progress on a daily basis. In the year since we left New York City, we have seen tremendous improvements. She walks -- and runs! -- with her walker. She can somewhat painstakingly go up and down steps while holding on to the railing with both hands. She asks for help and a spotter when she doesn't feel safe or secure. She tells us when she needs assistance, when she wants to be carried, when she's tired and needs a break, when her braces hurt her legs so much they have to come off. But more often than not, she pushes our hands away. <i>I can do it by myself</i>, she says a hundred times a day. Stop it, Mama. I will do it. Don't help me. Under a furrowed brow and through narrowed eyes she makes a face at me and starts whatever she's doing all over again, this time without my interference. Her speech -- both the way she pronounces words and the way in which she expresses herself -- has improved by leaps and bounds. We have conversations. She can retell stories sometimes. She thinks aloud and shares abstract ideas. "Hmmm. Let me think about it," she will say in response to a question, tapping a finger to her chin. She is opinionated. She has favorites and second favorites. At dinner time with the family, she recounts her rose, thorn and bud -- what she liked best about her day, what the worst part of her day was, and what she's looking forward to about tomorrow. She memorizes song lyrics, tries to take turns "reading" aloud (repeating an entire book after me one sentence at a time) and plays <i>I Spy</i> with only the tiniest bit of assistance from her big sister. She lets me brush her hair and sometimes even put pigtails or barrettes in it. She wants to grow it long so she looks like a princess. She puts on lipstick a hundred times a day. She makes up stories all day long. She is the most social of the four of us, fully extroverted and always interested in playing with others. She pretends, she rationalizes, she supposes and dreams. She is witty, often silly, and can take a joke better than I can. All of this is really, really good stuff.</div>
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On the other hand, she cannot escape the damage to her brain. We cannot pretend or hope that her cerebellum will heal itself. PCH2A is a serious and usually fatal diagnosis and it will never ever go away. PCH keeps us hyper-aware that maybe it's not worth fighting about those last three pieces of broccoli or slapping her fingers away from her mouth so she doesn't bite her nails or making her walk when she wants to be carried. We hug her a little tighter and sneak in an extra kiss or two at night because we never quite catch our breath from the everpresent fear that one day she might not wake up. We watch our fellow PCH-families bury their babies one after the next, the number of commemorative dragonfly tattoos among my friends list growing almost daily. They don't see Freyja as one of them, but she is. Our friends and family don't see Freyja as one of them, but she is. I don't want to think of Freyja as one of them, but she is. I can't reconcile this happily if not typically developing child with her terminal diagnosis any better than anyone else can, but it doesn't leave my thoughts for a second. Not a single second.</div>
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Our now annual visits to the neurologist are like a skeptic going to a fortune teller who is eerily on point. He looks at her like he's gazing into a crystal ball. For the most part, he has no idea what to make of her because there are so few children like her. The diagnosis itself is incredibly rare. Now imagine <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4019562" target="_blank">a child with PCH2A</a> who strangely doesn't seem to fit this dramatic description. That's even rarer. He has no idea what he's looking at when he looks at her. But somehow he knows exactly what we are going to encounter, what she will be like, what her struggles are and aren't, where we should intervene medically and should not. He is always right. </div>
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He is amazed and delighted by her incredible ability. He always invites students, colleagues, visitors of all kinds to our appointments because he wants everyone to see that she exists. He has presented her at conferences and included her in rounds. He says he will write about her someday because she is such an anomaly. She should not be able to do the things she does. But she can and she does, so he tells us to treat her like a typically developing child to the best of our (and her) abilities. At the same time, he warns us to watch for seizures and other concerns. He knows the cerebellum probably better than anyone else on Earth and is always able to tell us what behavioral issues we will encounter, what learning challenges she will have, what in life in general will be difficult for her, because he knows where each of these skills, proficiencies, talents, etc., live in the cerebellum. "And to think the rest of the world thinks the cerebellum only controls motor function!" he scoffed under his breath last week when we reviewed a litany of behavioral and educational concerns. </div>
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In that conversation, he predicted that she will have three major challenges in school. One, her motor deficiencies will be extremely challenging. This we already know. She needs help with most activities of daily living that the average five or six year old can do independently. She is moving to keyboarding because writing is so difficult for her. She exhausts herself by insisting on walking everywhere; she has a pronounced limp and her legs hurt all the time. She can't keep up with others her age. Two, her brain will not be able to handle multi-tasking at all. He's correct. We already see that she can only focus on one thing at a time. When multiple things are happening around her at a time, she becomes overwhelmed and extremely frustrated and can do none of them. She falls apart easily. She needs quiet and a setting in which to concentrate. And three, language processing. This will be her biggest challenge, he says. We knew that from her neuropsychological evaluation already but didn't really understand what it meant. Basically it means no one knows how well she will learn in school. Or, looking at the combination of all three hurdles, <i>if</i> she will learn in school at all. And on top of that, she has twice now thrown herself into a neurological episode of some kind by tantruming so hard that she can't regulate her movements, her body temperature and even her conscious presence. She was so upset and so physically affected that she completely dissociated. Just flat out disappeared. And when I tried to explain this to people I thought might understand, they didn't believe me. </div>
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So, no pressure. After four years of preschool -- one private, two special ed and one integrated, she is finally starting mainstream kindergarten like we always wanted her to. But the deck is stacked against her. The director of special ed for our school district predicts that not only will she not last there and end up with an out of district placement sooner rather than later, but that the LD schools the neuropsychologist suggested we consider for her down the line will not take her. That she will need a school for the multiply disabled. But, she finally agreed, let's try her out in kindergarten. We will give her a chance. Maybe she will surprise us. Who knows really how she will do. So, yeah. No pressure. </div>
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What I want to know is this: How do I deal with special ed directors who think my child is intellectually disabled when her neurologist and neuropsychologist say she is not? How far do I push for her education when I know she may not make it to high school graduation anyway? How am I supposed to balance raising my child like a neuroypical kiddo and knowing that her life will likely not be long? How do I make monthly deposits in her 529 like I do for Thora and also establish a special needs trust as part of our estate plan just in case she outlives us and can't live independently and has no one to care for her? How do I couple teachable moments with the fuck-its I get when she wants more ice cream or another video? Do I prove a point or do I let her have the ice cream because she might die? How do I decide how much to push her in her therapies, how much to fight for her inclusive education, how much to plan for her future and also ensure that her days right now are good ones? How do I internalize that her disability could be a death sentence and also rejoice that she's not unwell enough to qualify for Make-A-Wish when she wants to go to Disneyworld and be a princess among princesses but we can't afford it because we have to save for her uncertain future? How do I feel gratitude for all the wonderfully supportive friends in social-media-land who pile "love" emojis on her cuteness when five minutes after I posted the latest <i>totes adorbs</i> video, she collapses into a seething, infuriated, hysterical heap over not getting to watch the clip of the Frozen characters doing the Thriller dance on YouTube for the eight hundredth time because I said no because I was just sick of hearing it and needed a break? When I hear the neurologist's voice in my head telling me to just give in because her inability to self-regulate and self-soothe make disciplining not worth it sometimes because the discipline is lost on her and she is completely unable to compromise? That I should raise her like a normal little girl -- whatever <i>that</i> means -- but oh yeah, the cerebellum is where fun stuff like autism, ADHD, OCD, ODD and psychosis all live and she will likely exhibit behaviors of all of the above but not really ever be diagnosed explicitly with any of them so the behaviors will be hard to treat, hard to medicate, hard to manage? And when I see that the doctor is right when she's following me around closing doors and drawers obesssively, unpredictably and randomly exhibiting extreme difficulty with change, transition and disruption, and not understanding the meaning of <i>no</i> some of the time, ending up half catatonic from overreacting to that no when ten minutes later I can say no to the same damn thing and she's fine with it. When my other child leaves me notes and letters on my desk for me to find when she's not watching that tell me how sad and frustrated she is that her sister gets so much more of our attention and that even though I get up at 6 am every morning to go bike riding with her and make every effort to ensure that she feels seen and heard and loved every day, I know deep down she's right, that her sister does get more attention? When I earn a decent salary and benefit from so much white middle class privilege but ask for financial aid because I have to put every cent toward her therapies and adaptive activities in the hope that they will make her healthier, stronger, smarter, more resilient, <i>alive</i>. When the world feels like it's unraveling around us because our president is a racist sexist homophobic transphobic disability-phobic piece of shit and I almost regret having children in the first place because I made the stupid assumption that our nation would vote for leaders who would want to leave the world in better shape than they found it and I feel pathetic for feeling the way I do because so many people have it worse? How can I take all of that into consideration and still treat her like a regular kid? I don't know how, but somehow, this is what we do every single day.</div>
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And you know what? We do it, but we can't talk about it. And I think that's why I haven't been writing about it. When we talk about Freyja, we talk about how cute she was today. How she's learned the moves to her latest favorite dance, or the lyrics to her latest favorite song. How she asked for a new book at bedtime instead of that goddam fucking ballet book she makes us read 99.9999999% of the time over and over and over. How many views her video got. How her babysitter took her swimming or how she dressed up like a princess or how she wanted to hug the chickens or how well she ate her dinner or swallowed her medicine or whatever. We don't talk about how much effort goes into balancing her future-no-future. When it comes up, we change the subject, we look away, we pick fights with each other over the overdue library book someone forgot to return. We act like it's easy to be her parents, because that is what you do when it's your child and that is what anyone would do, but it isn't easy. It eats away at our hearts and our savings and our self confidence, our relationship and our energy. It crumbles our trust in the world and that things will work out okay. We alternate being so grateful that this child is in our life and so bitterly angry at everyone else for not understanding what we go through. It makes me weary. And then it becomes easier to say nothing, to write nothing. I'm fine, thanks! Yes, she's so cute, isn't she? She's awesome! Never better. </div>
<div dir="auto" style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0); font-family: -apple-system, HelveticaNeue; font-size: 16px;">
<br /></div>
<div dir="auto" style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0); font-family: -apple-system, HelveticaNeue; font-size: 16px;">
Today at the end of the yoga class I went to, the instructor read something from a daily Buddhist reader. Initially I was annoyed that he interrupted my savasana, but then I heard something meaningful. "Anything that becomes rare becomes very dear to us. When things are in abundance, we do not even know their value.... What <i>is</i> will always be. What is not, never was and never will be. The essence is always there. You can never destroy the essence. Then what is it that is destroyed? The form that the essence takes. Only the name and form are destroyed." </div>
<div dir="auto" style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0); font-family: -apple-system, HelveticaNeue; font-size: 16px;">
<br /></div>
<div dir="auto" style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0); font-family: -apple-system, HelveticaNeue; font-size: 16px;">
All this uncertainty is a part of Freyja's essence, and Freyja's essence is a part of the world. She <i>is</i>, and she will always be. No matter what happens to her, I know the essence of Freyja. And that can never be destroyed. Maybe that's not a fix, but it's a solution. It's the answer that I needed, at least for today's questions. She is, so I don't have to worry about whether someday she will not be. She's here now, and that means she will always be. The essence is always there.</div>
Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-8497038950704433299.post-18587377495443459792017-01-04T23:44:00.002-05:002017-11-07T22:47:54.405-05:00Teeny Rae
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<div class="MsoNormal">
Small but important update: </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We don't call Teeny Teeny anymore because she's now
five and not that teeny, and also, she doesn't like it.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Hey, Teeny girl! </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I'm not Teeny! I'm a girl. I'm Rae! </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Hey, girlypants!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I'm not girlypants. I'm a girl! I'm Rae!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Hey, peanut! </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I'm not -- </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
You get it. She likes being called her name. The end.
So, Rae it is.</div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment-->Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8497038950704433299.post-56764410705375055932017-01-04T23:18:00.003-05:002017-11-07T22:50:43.931-05:00City Mouse, Country Mouse
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<div class="MsoNormal">
<br />
We did it! After several years of deliberating, debating, stressing, worrying,
researching and discussion followed by a sudden decision and then six months of
very intense planning, we managed an out-of-state move. It's no small feat to
uproot an entire family based on the hunch that you might be making things
very, very good for one person in your family and man does it feel good to
realize that the move worked for all four of you. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
While I was working on a list of the most noticeable things
that have changed in my life in the past six months (and three days) since we
moved, I dug a few paragraphs out of a draft email I'd written to myself a
couple years ago when we were trying to figure out whether we wanted to move at
all. At the time, I'd thought maybe I'd turn it into a blog but ultimately we
got stuck in indecision for several years. Then we made up our minds very
quickly It was a very long and painful process that I am so glad is behind us,
and it was interesting enough to reread my words from back then (because so
much of it has been realized) that I thought I'd post them here.</div>
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<br /></div>
<div class="MsoNormal">
--------------</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Since around the time Bee was an infant, which is also right
around the time Johnny and I bought an apartment in the Harlem section of
Manhattan, we have been talking about moving out of the city.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I am a native of a (back then) pretty tough part of Queens.
I grew up in the city and was obsessed with spending every minute I could in
Manhattan. I started commuting by subway to the Upper East Side for school by
the time I was 11; transferring off the 7 train at Queensboro Plaza to catch
the R train (before it became the N train) going over the 59th Street bridge
was a thrill every single day until I graduated high school. As a teenager, I
would have sold my soul to live in New York, NY. My high school boyfriend and I
spent hours and hours riding the subway and getting off at a random station,
walking around and riding all the way back. Because I lived in Queens, I got
made fun of by my more sophisticated friends from Greenwich Village and the
Upper West Side. They teased me, asking repeatedly if there were cows where I
was from. I didn't think it was funny. Instead I vowed to become sophisticated
like them: dye my hair black, go to CBGB at night, learn to smoke cigarettes
and find a way to go to cast parties hosted by kids whose parents were away in
the Hamptons, sketchy clubs that didn't check the IDs of clearly underage girls
and, the ultimate at the time, the Rocky Horror Picture Show.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
By the time I was seventeen I had left home and was living
on East 25th Street. For me, nothing was more exciting than hanging out
downtown, especially the Lower East Side and anywhere there was a club night.
During the day I loved waiting on line at the bagel store on early weekend
mornings, wandering around the busy streets, walking and walking for miles;
meeting friends for dinner or drinks at a restaurant, bar or club as night
fell. I loved pretending I was a tourist in my own city when friends visited
and even more than that I loved walking down any street any time of night or
day like I owned it. Unsurprisingly, then, 4 am on any given night might find
me in the meat packing district (which was a very scary place back then),
Chelsea, the East Village.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And now I want to be a hippie. To be clear, I don't mean
that I want to start wearing long, flowy skirts and patchouli oil. I don't even
mean that I want to be a goth version of hippie. Ren Faires and poet shirts are
not my thing. I might mean that I want to grow my armpit hair and
stop dyeing my hair black -- someday. I am very aware that I get sucked into
trends and that I feel pressure to conform in some ways and when I'm outside of
a major metropolitan area that all goes away. I don't quite mean that I want to
wear any old thing or stop all personal grooming, but I do mean that while most
of me knows I don't need that Lululemon outfit to go running, I sometimes buy
it anyway. I want to remove myself from the pressure I often feel to spend
crazy amounts of money on myself on crap I definitely do not need or could get
for less. I definitely mean that I want to stop throwing money in the garbage.
Periodically there are articles that make their way around social media that
talk about how New York City is the most expensive place to live in the whole
country. We are a single income family whose single-income-r works in a
non-profit, so it seems outright stupid of us to spend another second here. I
want to focus more on our impact on the environment. I want to compost, grow
some of my own food, recycle more. Have (rescue) chickens! I want to have a
lawn or a yard (or both) and a tree to sit under. A hammock. A little more
space. Shop at and work in a co-op. Send my kids to public school. Walk, run
and bike in greenery. Hike on my own property. Get involved in the town
governance. Not be able to hear neighbors, especially while sitting in our own
living room. Not get whistled at, harassed, talked to and otherwise bothered
with every single step I take. I want a deck so we can sit outside with dinner,
a drink or a book. I want to be able to open windows and have cross
ventilation. I want to not have to choose between Teeny's walker and Bee's
scooter because our 750-square-foot apartment doesn't have room for both. I
want more than one bathroom for the four of us and our two cats. I want an
attached garage so we don't have to bundle the kids to walk ten feet.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I know that many of these things can happen right here in
the city. No one is twisting my arm to overspend on clothing. I shop at some
thrift stores already. I could compost using a worm bin; I know several people
who do. There are community gardens we could have a plot in. There are two food
co-ops (far from us, but they're there). Of course we re-use and recycle, but
frequently I find myself forgetting my travel mug and then getting a giant
plastic cup of iced coffee and just tossing it when it's done instead of
bringing it home to recycle it properly. It's easy to get complacent
here. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We were recently in Vermont for a long and beautiful
weekend. It's a long drive but it's totally worth it. And the 300 miles each
way gave Johnny and me lots of opportunity to talk about this, our favorite
topic. It's been a topic for a long time because while the list of things I
want and don't want keeps growing, there are no easy answers. We are as
deadlocked on this as we were when we discussed it four years ago. Back then we
said we probably had about ten years in our apartment before we would truly
outgrow it and the girls would need their own rooms. We have tried to
accelerate the process time and time again, but something always gets in our
way and puts us back on that ten year plan. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
There are four big things that are keeping us here:</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
1) Work. My job is based in New York. While I'm told that I
could eventually work remotely part of the time, I do need to be in the city or
near enough to the city to get there at least some of the time. This would not
be an issue if we could afford to buy a second home and I used our current
apartment as a pied-a-terre a couple nights a week, but I don't think we can
afford that. I am too old for couch surfing and I can't think of anyone who
would want me to bunk with them that often. I love my job and I don't want to
leave it, so it plays a very big role in this decision making process.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
2) Education. Teeny's needs are currently best met here in
the city. As readers of this blog know, we just committed to two years at a
fantastic preschool that is equipped to do all that we need it to and more. She
is in good hands there. The school is in Manhattan, and more importantly if we
left our school district we would lose our CPSE administrator, and we don't
want to do that. So that's two years at least before we could make any major
changes and even then it's not clear to me that her needs will be pet in some
small town's public education system. Also, now that we have Teeny in a school
for two years, our attention turns to Bee, who is about to start her last year
of preschool herself. This year we will go through the process of getting her
tested for G&T and the specialized public schools like Hunter - where I
went - and Anderson, and of course we will go through the very hair-raisingly
competitive application process for private schools. Presumably we will either
find ourselves in an amazing public school we can't afford to leave or in an
amazing private school whose generous (and necessary) financial aid package
makes it difficult for us to pass up, and she'll be set for at least eight more
years. During which time it will be Teeny's turn again, at which point we will
have to decide based on her abilities then whether she needs to stay in the
city or if she will do well elsewhere.</div>
<div class="MsoNormal">
3) Fear. We are both New York City natives (have I said that
enough?) who always thought we would live here forever. Johnny and I have lived
here or in other big American or European cities all our lives, and we are
aware that moving away means loss of convenience, loss of easy access to
restaurants, movies, theater, museums, nightlife. We rarely if ever avail
ourselves of any of this and when we do it's with a great deal of planning to
arrange childcare, finances, other people's schedules, etc., so we don't
believe this would really cramp our style, but we are aware that it will be a
really big change regardless.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
4) More fear. While we are co-op owners, we have never owned
our own house. We pay an exorbitant amount of money in monthly maintenance fees
but in exchange we have a super, a porter, three doormen, a co-op board and a
building management company all there to address our needs and take care of
issues (usually) in a timely way. To say we are not handy is an understatement.
We can barely hang a painting ourselves. Luckily for us we have family members
who are homeowners and other family members who are not only handy but have
made lifelong careers from working with their hands, so we can lean on them to
ask questions. But last year we backed out of a purchase because I got cold
feet after the home inspection. I felt like I couldn't handle the financial and
emotional burden of having to learn how to assess repairs, find contractors and
set aside the money to replace, say, a boiler or a roof at a moment's
notice. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
There are four things we think we know we do/don't want that
will influence our decision:</div>
<div class="MsoNormal">
1) Town. We don't want suburbs. Originally I thought we did.
At first, it made sense to buy a house in a bedroom community of New York City.
We ruled Long Island and New Jersey out just because they are Long Island and
New Jersey (with loving apologies to my LI and NJ friends and family) and
looked in Westchester. Ultimately we decided against that too, leaning more in
favor of something more small-town-ish and less of an extension of New York
City. The suburbs we visited felt very white, very conformist and very
upper class. I don't claim to know everything about what's out there; I know we
are making generalizations. Still after 40+ years of being the weird kid
even here, I want to be somewhere I will not feel judged looking the way I
do, with my tattoos and somewhat unconventional style and so on. I want to be
comfortable being vegan (and be able to get something to eat when I'm in town
if I get hungry). We want there to be at least somewhat diverse population with
an LGBTQ community and unconventional families familiar with special needs,
stay-at-home dads, adoption and the like. So, progressive. A focus on the arts
and the earth. Small-ish population but not too small as we think rural would
be too different and too isolating for us. And near-ish to a city like New York
or Boston or even Providence, if possible.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
2) Northeast. Nearly all of our family is in the northeast
so we aren't prepared to move out of this general area. We want to be able to
get back on short notice if it's ever necessary and when it's not we still want
to be within a day's drive of grandparents, great-aunts and -uncles, cousins
and family friends. And we love New England. Our last five or more vacations
have been in Massachusetts and we keep finding ourselves there for weekends,
family visits and so on. We love the Cape, we love the Boston area and we love
Western Mass. We even spent a week in Central Mass last winter just because it
was close to everything else! I grew up spending a lot of time in the
Berkshires and love it there so so so much, and as a student and young
professional I lived in the Cambridge area for six years, which I also love. We
also feel totally at home in Vermont and have been there quite a few times, but
think Massachusetts (or possibly southern Vermont) might be a better choice if
only because it's closer to New York City.</div>
<div class="MsoNormal">
3) aaaaand that's as far as I got.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But here we are, six months and three days into living in
the country. Everyone keeps saying "What a big change!" when I tell
them we moved from New York City. In some ways it feels that way and in some
ways it doesn't. In some ways it's like we've always been here. And it's all
good.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Our Miss Teeny is now five. Her birthday worried me because
it was just a few weeks after the start of school and she didn't know anyone,
but it was better than I ever could have hoped. We chose not to have a big
party for a bunch of kids we didn't know. Instead we just had a big playdate.
We invited her new pals and their families who have embraced us like old
friends. Everyone came. We did an art project, ate cake, and had a little
parade up and down our street with her in her new little electric car. I
imagined her like Milo from The Phantom Tollbooth, reading the
road signs, depositing her coins into the cup, squinting at a map and
embarking on a wild and fantastic adventure. And she's really done exactly
that. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Milo had no idea what he would find in Dictionopolis. He
hadn't even really intended to go there. He just closed his eyes, poked a
finger at his map and then went wherever it told him. While our move
involved a ton of research, the truth was that we had little better sense than
Milo did of what we would find when we moved out of New York City.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Six months in, so far, so good. A friend of mine with
a special needs child who two years before us also relocated to another state
in pursuit of many of the same things we wanted reached out to me and said hey,
doesn't it feel good? You uprooted the lives of four people in the hopes that
you would be making a better life for your daughter. You did it! And doesn't
that feel good? Yep. It sure does.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In some ways it feels like we have always been here. Apart
from a few friends, I don't miss New York City at all. I love the quiet.
The clean air. The trees. The fall foliage! The wintery landscape. The snow and
ice. I love sitting on the deck or hanging out with our chickens. I love
putting work into the house and I even love daydreaming about putting work into
the house. Even though right now we can't afford the big projects we know
we want someday, even the little ones are fun. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The girls are settled. It's almost like they've always been
here. Teeny's first IEP meeting came and went and I am very pleased with
her services. She is already adored by her new school as much as she was
by her old school. She has PT, aquatherapy, music,
hippotherapy, adaptive dance and OT all outside of school and we are
working on getting her additional speech as well. She's a busy kid. Bee loves
school. She takes music and art outside of school, and once a week she and the
12 year old boy from next door work on Lego projects or play
the Pokémon card game or do drawings together. She gets me up every
morning that I am home so we can walk or bike or walk or read or just talk
before everyone else gets up. And every Saturday morning she comes with me
into Boston to Teeny's adaptive dance class. We drop her off, walk to the
Starbucks a few blocks away, she drinks as much as she can
of a decadent tall soy decaf mochaccino with only half the
sweetener and she reads me a chapter of her book. She, too, is a busy kid. She
has more or less stopped mentioning her friends from her old school (except,
"everyone eats meat here. How come there are no vegetarians or vegans like
there were in New York?" and instead asks for play dates with her new
schoolmates.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Sunday night is movie night for us and that means we gather
in the basement with hoodies and blankets and beanbag chairs and frozen
vegan pizzas and we watch something as a family. We instituted this at the
start of the school year and so far we've watched a variety of movies
including Mary Poppins, the Addams Family, and every single movie or
short movie featuring the Minions.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Johnny is settled. He has his routines, which are kicked up
into high gear when I am on the road. He has little time to himself during the
day because there are always errands to be run, chicken shit to clean, wood to
chop, service providers to call or let into the house, kids to run to
classes and therapies. He loves the local library's enormous collection of
books and movies. His new favorite person is the guy who runs the local beer
and wine shop. This guy calls him when one of his favorite IPAs are in, and one
of his recent runs to grab a four-pack of 90 minute Dogfish or Ballast Point
Sculpin or some other beer with some incredibly ironic name and label (my
favorite is Raging Bitch), he also worked up the courage to go into the Italian
restaurant next door and ask if they would make vegan pizzas if we provided the
vegan cheese. And they said yes! Tiny victory to you perhaps, but this is huge
for us. My spouse rocks. And me? I just wish I were home more. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Six months ago, whenever I was in the airport I would Face
Time Teeny and she'd ask me to flip the camera around so she could see all the
people. She would ask me to walk over to a window so she could watch the planes
pull away from their gates and slowly make their ways to the runway. She would
ask to see the people again, the moving walkways, the shops, the signs, the
tarmac. She would ask me to show her my seat, the windows, the lights. She was
fascinated. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Today as I boarded my flight home, I Face Timed her. She was
deep into dramatic play mode, busy at her kitchen set, making imaginary mac and
cheese. Johnny propped the phone up on her ty kitchen counter. Hi Mama!
she said. Are you on the plane yet? No baby, I'm-- and she held up a hand.
Wait, she said. I have a call in five minutes. I have to go. She turned
away from me and picked up a pretend phone. Hello?! Oh yes. She pretended to
listen. Yes. Okay. She turned back to me. I can't. I have to go. But wait, baby
girl, I protested. Can you tell her you'll call her back soon? No, she shook
her head gravely. I can't. What else could I do? Okay, baby girl, I said. I
love you. Goodnight! I'll see you in the morning. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
How depressing. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Earlier today I was on the phone with a friend who asked me
about how my family was adjusting. Great! I said brightly. I told her how my
underlying goal is to minimize the impact of my travel on my kids. How I work
hard to plan their activities for the week before I leave, how Johnny and I
review who has to be where when. How Bee and I sometimes Face Time
when she gets up early and she reads a chapter to me then, flipping the camera
around to show me the pictures, and of course the words she stumbles on. I
told her how lucky they are to have a parent who is always home and to have
friends and neighbors and family in their lives consistently even when I am
not. How I have been trying hard to be home on the weekends so I can take both
girls on our Saturday morning outings while Johnny sleeps in, how I've never
yet missed a movie night. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And yet, there it is. No, I have a call. I have to go to
work. I'm sorry, I can't right now. I'm leaving for the airport. I'm off to New
York. How many times have they heard that? </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It weighs on me. But it is what it is. This is what I signed
up for. It's what I knew I was getting into. I love my job and I love my family
and I love being home and I love being on the road and I love being with my
spouse and my girls and I love being with my colleagues and I love doing
all the things I do. And I get to do them imperfectly and wonderfully.
Adjusting is a long process and we are still at it. It's all positive and every
day we say over and over how grateful we are that we moved, and yet it's still
challenging at times. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Some of the biggest changes for us are the obvious ones,
while others have been things that might seem small to someone else. I've been
making some notes here and there that I've cobbled together in the list below:</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
1) Cost</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I was afraid that moving would be too expensive, that on our
one-person income we could never afford a house in a town we loved in a school
district we felt could serve both our children, with enough space for the four
of us and with enough of our nice-to-haves. But you know what? In NYC we owned
750 square feet of space. For that we paid a monthly mortgage and since it was
a co-op we also paid maintenance. We paid for our parking space in an indoor
garage because a) parking in New York City is impossible even with a
handicapped parking permit and b) with a kid who can't walk, you just can't
park five blocks away and carry her plus groceries plus whatever and c) we
wanted our car to not be stolen. We paid a fortune to insure that car even though
it was garaged indoors and not used for commuting. We also had to pay for a
storage space since nothing fit in our apartment. Which was stupid because if
you put a bunch of stuff in storage you forget it's there so you may as well
have thrown it away because you end up buying another one or saying "we
have one that's in storage, we can go get it," and looking at each other
and groaning and then not getting it and then what's the point of having that
bike or that easel or that box of awesome cookbooks or whatever. Then we bought
a house. And now, we pay for the house. And that's it. We park the cars in the
driveway and we store stuff in the closets and the basement and the cabinets
and the shed and the wherever. And the cost to insure two cars is less than what
we paid in NYC to insure one.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
1) Outside</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Our apartment in New York was so small that we had a
rule that we HAD to leave at least once every single day. It wasn't even that
we needed the air or the exercise, although of course we did. It was that the
apartment was so small that by the time we cleared the breakfast table we were
already all on each other's nerves, so in order not to want to kill one
another, we had to invent things to do outside. But getting outside with a
family is such a production in New York City. Everyone has to get dressed
and ready to go out, even if it's just to the mailbox, because you can't just
go outside and leave a child inside the apartment alone. And since you
all have to go, you may as well make it worthwhile, so you pack as though you
might go to the moon. A bag full of wipes, toys, a mama book just in
case I get to read, a kid book just in case they want to read, two phones,
water, coffee, snacks, a stroller, blanket, hoodies, diapers, change of clothes,
whatever. My bag is so heavy that I can barely carry it, and that is
before wearing or preparing to carry the child who cannot walk independently
when she invariably tires from using her walker. And then there's what a
friend of mine calls the New York City kid tax: we have to have a
destination, which invariably costs money. Even if it's "oh
let's head over to Children's Museum" or the less inspired "We can
always grab coffee," or "Let's go pick out a book for the girls at
Barnes & Noble," between admission, food, shopping, coffee,
whatever, it always turns into a $100+ day long excursion. Always. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Here, we walk out the door. The front door or any of
our four deck doors. The end. Sometimes the kids are not even dressed and
sometimes we forget to put on shoes. Bee can open the door herself and the
girls can be outside, hanging out with the chickens without us. She is now the
one who runs out to the mailbox. Johnny can grab something from the car or the
shed without having to suit up the entire family (not to mention having to tip
the garage attendant). Also, when they are in bed, we can be outside on
the deck or the lawn looking up at the stars (and there are thousands!
None of your puny handful of stars that struggle to peek through New York
City skyscraper light pollution). Some citronella candles for the summer
mosquitoes, a grown up beverage or two, and a hoodie; it's as good as a
date night.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The down side: the cats want to get outside too. Ours are
wimpy city indoor cats who think they are badass but aren't. They are
completely entranced by the 24-hour cat TV playing right on the other side
of the screen doors. Our chickens! Chipmunks! Birds! Bunnies! (And, uh, fox!
Coyotes? Who knows what lives in those trees behind our house!) They are
always on high alert, just waiting for the moment one of us fails to close a
door all the way. It doesn't help that they refuse to wear collars.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
2) Fashion</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I spent a fortune on clothes in New York. Work clothes.
Going out clothes. Workout clothes. And so many shoes that I never wore because
they hurt my feet. So many.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Everything here is way more casual. Nice-casual, of course,
but still casual. And now that I work from home some of the time, I live
in comfy cotton and I have enough work clothing to last me for
business trips to New York, LA and wherever else for the rest of my
life and for ten more lives. I may never need to shop again as long
as I don't succumb to the challenges of working from home (my fully
stocked kitchen is ten feet away from my office) and the challenges
of traveling 50% or more of the time (restaurants 3x per day) and need a
new wardrobe because I've gained 500 pounds. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The down side: my spouse actually likes me in my work
clothes. Sorry sweetie! Shorts or jeans and a nice t-shirt or are way more
comfortable. I feel sad when I take off my Fit Flops (in summer) or my Sorels
(in every other season so far) and have to put on real shoes. As it's gotten
colder I am wearing my work boots, jeans and a quilted vest. The all-black
version of the LL Bean catalog. Oh well. At least I still shower every day. :-)</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
3) Appliances and services</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In New York we had the luxury of having a washer dryer in
our apartment, but they were small and the dryer was ventless. Ventless dryers
suck no matter how much you spend (and they are pricey!) and it takes hours for
a load of clothing to dry. Here the appliances are bigger and cheaper and way more
efficient. In New York the apartment was so small and the air was so bad that
we ran the air conditioners (all three of them) at full blast anytime the
temperature crept above 70. Here we have high ceilings with ceiling fans and
lots of cross ventilation and we don't need the AC at all except on very hot
days when the temperature was well into the 90s. In the winter, we use the heat
in the early mornings and then in the late evenings but during the day and
while we're sleeping we find we don't need it. For regular mail we don't have
to find a mailbox or go to the post office, we just stick it in our mailbox and
put up the little red flag, a service I find adorably quaint.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The down side: In New York we paid so much per month in
maintenance that we almost never had to pay for anything or worry about
anything at all for general apartment upkeep. We separated trash from
recyclables but it all went into the same trash room in the building and it
went whenever we wanted. I never saw a bug in the apartment but we could sign
up for exterminator services that were covered by the building. Mail and
packages were received by the doorman. Here we have to pay for trash collection
services *and* we have to pay per trash can or per bag that is collected. We
have to have our property treated for ticks and mosquitoes. We have to worry
about landscaping and we have to manage all our own repairs. Part of the
reason we even noticed that we could live so easily without AC and heat around
the clock is that I panicked thinking about the cost of heating and cooling an
entire house. We pay for electric and gas, and here we also pay for water and
for the cleaning and maintenance of the septic system. We have a shed for tools
and appliances we will have to learn how to use (like a lawnmower!).
Johnny got himself an ax and a hatchet for the wood we needed for the two wood
burning stoves and we got a hell of a lesson when the first cord of wood we
bought was dumped in a big messy pile on our lawn and he had to stack it
himself. It took him days. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
4) Customer service</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In New York, businesses like the bank, the post office
and the supermarket are always overcrowded. The lines are long and people
are cranky and impatient and they are staffed by people who don't
want to be there. I used to say not even half-kidding that the post office near
my apartment should be the tenth circle of Hell from Dante's Inferno.
Here, running errands has been nothing short of a delight. People are polite
and friendly and helpful. And all establishments make you bring your own
bags or give you paper for a ten cent fee. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Goodbye to exchanges like this:</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Me: I have a bag</div>
<div class="MsoNormal">
Employee (ignoring me and bagging my stuff): ...</div>
<div class="MsoNormal">
Me: I have a bag</div>
<div class="MsoNormal">
Employee: Taking my stuff out of their flimsy double or
triple plastic bags and then throwing them away even though I didn't use
them (!)</div>
<div class="MsoNormal">
Me: Grrrrr.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And hello to:</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Employee: Hi there! How are you today? I haven't seen you in
a while. How can I help you? </div>
<div class="MsoNormal">
Me: I'd like this and this please. And I have my own
bag. </div>
<div class="MsoNormal">
Employee: Sure thing! Here you go, have a wonderful day!
Hope to see you again soon!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The down side: You have to drive everywhere and think about
where parking is. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
5) Space</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Our house is more than three times the size of our old
apartment and we now have TWO bathrooms and are thinking about putting in a
third. This is so exciting I can't even tell you. That two of us can pee at the
same time now is earth shattering. It's amazing to have space! In New York
every single inch was filled and we worked so hard to keep things organized
that half the time we didn't even bother to take out a toy or a game or a
project just because it would make a mess and it seemed too difficult to deal
with. It seemed easier to just throw stuff out than try to find a place to put
it. Here we have a table that we have designated just for jigsaw puzzles, which
we love but required too much effort in New York because they took up prime
real estate on our dining room table that also served as the girls' home base
for homework and project and my home office and if they stayed out
unfinished, the cats or the kids invariably ended up losing pieces and they'd
end up in the trash. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The (not very) down side: I sometimes have house envy.
Having moved to a town where the houses are mostly bigger and newer and
fancier than the one we just moved into, part of me is already thinking this
upgrade isn't good enough. We have sunk every penny into getting here -- the
renovations we would like to do that the house really needs are going to have
to wait. So my eyes move silently over the other houses in our
neighborhood. They have garages! This one is having new windows put in, that
one has a mother-in-law apartment at the end of their lawn, that one is the
size of a cruise ship. Wow, look at how beautiful that one is! I look at the
current listings to torture myself with what's coming on the market
now. Other people have three bathrooms! Other people have guest rooms!
Other people have family rooms and living rooms. Other people have this or
that. Look at how this one redid their kitchen, look at how big that one's
master suite is. Then I remember what we came from and remember how wonderful
all this new space is to my kids and how if our house was that big we
would just fill it with crap and then I would have to clean it.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
6) Education and related services</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This is ultimately why we moved out of NYC and why we picked
this town in particular. Bee was going to a wonderful but very expensive
private school and the Herculean effort involved in applying for financial
aid available was more than I felt I could sustain for the next thirteen years
of her education, especially when coupled with everything else that involved getting
her there (like leaving the house at 6:45 am to get her to the bus stop, or
taking her on the train at 7:45 instead because 6:45 was just too cruel,
like paying extra money for after school activities that all the kids did but
that made her day 9 - 10 hours long excluding her commute and having to
leave work early to pick her up ANYWAY, like worrying about what to do with her
over the summer because summer camp in New York City costs around a
thousand dollars a week). Then the other kid. Even if it were easy to navigate
the special needs system, even if the zone schools were not terrible, even if
we could afford the exorbitant prices for all the ancillary services that help
children like Teeny, just getting her to and from everything was killing us.
Even with one stay at home parent we could not get her everywhere she needed to
be -- therapies, doctors, specialists, etc., and still manage Bee's schedule
and mine. J spent his life in the car as many parents do but that was just for
her and in the last year of schooling our kids went on three play dates. Three.
That's all we could manage.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The down side:</div>
<div class="MsoNormal">
I haven't found one yet. Teeny's services in school are
somewhat reduced, but MassHealth, the state Medicaid program, covers additional
services that her New York State Medicaid never did. There just aren't enough
hours in the day to fit all the services that are available to her. It took us
four years to amass her team and her services in New York City. In four months,
we got her involved in everything she had going on in NYC and more. It's
amazing. Teeny is happy. Bee is happy. They are making friends and they are
growing and changing and flourishing. If nothing else in the whole world was
good about this move, the schools and the services made it totally worth it a
million time over and over and over.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And there's more to discover every day. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment-->Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8497038950704433299.post-15320266422346871282016-11-30T23:10:00.000-05:002017-11-07T22:52:18.390-05:00Please Please Please Let Me Get What I Want
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<div class="MsoNormal">
When Bee was about four, she went on a lipstick kick. Out of
nowhere, she decided she just had to wear lipstick all the time. I was not
happy, so I lay down the law. You are four years old, I told her. You don't get
to wear lipstick. Not ever. But she pressed, and I amended the law. You are
four years old, I said. You don't get to wear lipstick out of the house. Not
ever. So she wore it at home. Every day. My pinks and mauves weren't good
enough. She wanted red. Forget it, I told her. You'll look like a hussy. A
what? Never mind. You're four. Even I don't wear red lipstick. But Maaaah-maa!
No, Bee. I said no. But I wanted to compromise, so I got her blue. I got
her purple. I got her hot pink. And she wore them all. She practiced putting it
on in the mirror, sometimes looking more like Robert Smith, other times looking
more like a drag performer. She pressed more, so I amended the law again.
You're four! You don't get to wear lipstick at school. Not ever. So she wore it
at the playground. At Nana's house. To Whole Foods. To ride her bike. Sephora
became her favorite store in the city. She demanded special Mama-Bee outings to
play with the testers. On vacation in Provincetown, she discovered a cute
makeup store I'd walked past a hundred times and she pulled me in. It was an
adorable little boutique where they doted on her and found her endlessly
entertaining. They taught her the difference between matte and glossy, between
lip stain and lipstick. They taught her how to put actual glitter on her lips
-- blue over blue lipstick, pink over pink. "I look like
Hedwig!" she exclaimed in the mirror, much to the shop owner's delight.
But that was not enough. Still she wanted red and still I would not let her
have it. For a year, maybe more, she begged. And begged. I learned a great
trick. Look at my face, I'd say. Look at me. Do I look like I'm going to change
my mind? But Maaaaah-maaa! she'd start. Do I? I'd ask. Do I? She gave up and I
was proud. I had read somewhere that giving in after they beg and beg and beg
just shows them that begging works. Well, not on this mom! </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
She was quiet after that. For a while, no one talked about
lipstick at all. And then on a whim, I bought both girls a new lipstick. A red
lipstick. I don't know why I did that. Maybe it's because Bee wore me down.
Maybe it's because I wanted to surprise her and make her really happy. Maybe
it's because I found them in the local drugstore, vegan and on sale and really
cheap. Maybe all three. But I did and she was so excited that she jumped up and
down and threw her arms around me and squealed "I love you Mama! Oh,
you're the best Mama in the whole world!" She made me get out my label
maker and label hers with her name so her sister wouldn't take it by accident.
She designated a safe space for it to live where she could reach it by herself.
Rae copied her and painted a messy red Joker gash across her own mouth and
teeth. For days they both wore it constantly. Then Rae forgot about it and then
Bee forgot about it. I forgot about it too. Months later, when we packed to
move, I found the one labeled B-E-E hidden in the back corner of a shelf in the
bathroom. I tossed it into a box just in case she remembered it and had heart
failure that she couldn't find it. So it came with us to our new state, but she
never asked for it. In fact, the obsession with lipstick, lip gloss and even
lip balm ended with that red lipstick. I eventually threw it out.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Why I didn't remember this last year when she began to
obsess similarly about shoes, I don't know. She begged for high heels. When
you're twenty, I smirked. She shrieked. No! Not twenty! She paused. Ten, she
negotiated. Seventeen, I offered. We settled on fifteen. But Mama, she said
thoughtfully. That's ten years away! I want high heels now. No. I said. I
tried my old standby. Look at me, I said. Read my face. Do I look like I'm
going to change my mind? She had her answer ready. But Maaaah-maaa! </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I relented a little. First I offered her my own shoes, high
up in the closet, lonely and unworn. She blinked. I can wear your shoes?
she repeated in disbelief. Go for it, kiddo, I smiled. And she did. Clomp,
clomp, clomp. Clompclompclomp. Enough with the shoes! yelled Johnny, annoyed
with all the noise. And the shoes went away for a day, maybe two. But the next
time Bee put them on, her sister noticed and wanted them too. Little Rae,
unable to walk, thought it would be fun to wear them on her hands as she
crawled around the apartment. Two seconds later: Bonk. Followed by howls. She'd
tripped -- while crawling -- and hurt her chin. That was the end of that. It's
not safe! I screamed. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The shoe fetish went on for a year. Maybe more. And
honestly, it just didn't seem worth the fight, but I also didn't feel like I
could back down.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Clearly, neither did she. She tried every workaround she
could think of. Take the rain boots, for example. They were hand-me-down
Wellies, two sizes too big, plain black and worn. She wore them day and night,
until they gave her blisters. Why are you wearing those clunky old things? I
asked her a million times. It's not even raining! Because I like them, she
insisted. I couldn't figure out why. Why do you like them so much? I asked her
again. Finally, she filled me in. They have a heel! They do? I asked,
incredulously. I picked one up and turned it over. Technically, she was right.
The heel was about a third of an inch higher than the toes. But the blister got
the better of her and one day she asked me casually if I could help her find
her tap shoes and I fell for it. She was taking dance classes, after all. But
when I came home from work a day or two later, I opened a drawer to change into
a pair of sweats and the tap shoes came tumbling out amidst yoga pants and
running tights. Those fucking tap shoes, Johnny explained apologetically. I
couldn’t stand it another second. I had to hide them. We watched The
Wizard of Oz, and for weeks afterwards she reminded me constantly of how
jealous she was of Dorothy and how she really wanted red heels like hers and
how other moms are nice and let their daughters wear heels like those whenever
they want. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And on and on and on. Until one day I agreed to buy her a
pair of flats that had the tiniest heel ever. The tiniest. These shoes were
cheap and awful but they had cats on them and they were silver glitter and she
loved them. The rule was that she could only wear them at home. Which she did
-- night and day -- until the day she brought them over to a friend's house
when she packed a dress up bag. She not-so-accidentally wore them home, which
suddenly made them outside shoes, which meant she couldn't wear them in the
apartment anymore even though I still wouldn't allow her to wear them out,
which meant we were now fighting about shoes again. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
On playdates, she tried on other girls' party shoes. Their
boots. Their dress up slippers, princess shoes, sandals, whatever. Once, a mom
took pity on her and sent her home with a pair her daughter no longer wore. I
was enraged at the time, feeling somewhat self-righteously that my parenting
decisions were being disrespected and overridden by a parent who was raising her
own little JonBenet Ramsey. I was so ungrateful that I neither thanked her for
her well-intentioned gift nor told her how I really felt, opting for the far
less mature, far more passive-aggressive option of taking the shoes away from
my kid and complaining incessantly about that mom. All that did was
essentially kill that friendship and kick up my kid's shoe obsession into an
even higher gear than it already was. Until, amazingly, perplexingly, she
stopped begging for heels.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Summer must have had something to do with that because it
came with sparkly flip-flops and light-up Croc sandals and even a hand-me-down
pair of lacey Tom's slip-ons. It came with new Twinkle Toes and a pair of flats
that she was allowed to wear out of the house. They too had cats on
them but they were less flimsy than their predecessors and they were totally
flat. With all of these to choose from every day, she stopped talking about
high heels for a while. I thought she'd forgotten, or that maybe she'd gotten
over that phase. Silly me.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
A few weeks ago at a new friend's house, she discovered a
forgotten pair of Cinderella slippers, plastic and two sizes too small. She
stuffed her feet in anyway and made me think both of Chinese foot binding and
of Cinderella's stepsisters, whose desperation to wed the prince matched my
daughter's desperation for a pair of shoes with a heel. At someone else's
house, she slipped off her shoes and slid on a pair of boots she found by the
door. They zipped up her calf with a half-inch heel. They were cheaply made, in
a color she didn't even like, with gold chain trim. All the same, she whined
and begged and implored me to buy the same ones in front of that other kid, in
front of that other kid's mother and at every opportunity for days and days
after that play date. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Watching her beg me for a pair of beat up old boots reminded
me of something I did when I was her age. When I was little, we regularly
visited my grandparents in Florida. They lived in a senior complex and it felt
like everyone there was ancient except me. There were almost never any kids
around and I was bored out of my mind waiting for the grownups to get ready to
go to the pool or to decide to do something fun. I was desperate for other kids
who might also be visiting, but even when I found them, they often had siblings
or cousins with them; they didn't have time for me. When I was six, a baby
showed up at the pool one day. Her name was Lexie. Her parents were visiting
someone too. I loved babies and I loved Lexie and I loved that her mother --
young and pretty and tired -- didn't mind me playing with her. She seemed to
like the company. I attached myself to Lexie and her mom and hoped that my
family wouldn't notice. I'm Lexie's mother's helper, I explained to them
importantly. It's a job. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
One afternoon I helped Lexie's mom carry all the baby stuff
from the pool area back up to their apartment. I really liked pushing the
stroller; I remember wondering if people who saw me would think I was the
baby's mother, or maybe her sister. Up at their apartment, her mother asked me
if I would like to stay for dinner. Of course I wanted to. I didn't care what
they were having. I wanted to stay for dinner. I wanted to stay forever. I
wanted Lexie's mom to tell me how much she needed me to help her, how she
wanted to keep me, take me back to New Jersey or wherever she was from and be
my mom too and then I would be happy and have a baby sister and a family who
loved me and maybe even liked me too. So I crossed my fingers and my toes and
my arms and my legs and my tongue and I dialed my grandmother’s number. Pleasepleasepleaseplease I
whispered under my breath as I waited for someone to pick up. I heard my Nana's
voice and relaxed a little, because Nana always said yes to everything.
But this time, she hesitated. Let's see what your mother says. Lor, she called.
It’s Aimela. She covered the receiver with a hand and I heard muffled
conversation before some fumbling and then my mother. What are they having? she
demanded. I wasn't sure. My mother wants to know what you're having. We're
having liver, said Lexie's mom sweetly and my heart sank. Liver! I hated liver
and I refused to eat it whenever my mother made it. I knew I was sunk. Liver, I
whispered into the phone. But Mom! I begged. I don't care. I'll eat it! I want
to stay! Aimee, she said. No. Don't be silly. Say goodbye and come downstairs.
You'll see them again tomorrow. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I cried. I begged. I whimpered. But I had to leave and
underneath it all, I was angry. Part of me had been hoping that this family
would adopt me. They had seemed so perfect. Why would they invite me to eat
something like that? Now I had to go home to my own lame family where no
one loved me or ever bought me anything or thought I was interesting or
important. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So when Bee was in tears in someone else's kitchen begging
me for high heels, I remembered Lexie. Nearly forty years after volunteering to
eat something like liver just to get a little attention from someone else's
mother, I felt that same desperation from my own daughter, clad in someone
else's too-small shoes, willing to sacrifice her own comfort to feel like she
belonged. And I realized that this was just like the red lipstick that she wore
twice and forgot about. Maybe I'd been saying no to my daughter because I hate
all that femmy stuff on me, because I hate makeup and high heels, because I
don't know how to wear red lipstick and look like anything other than a clown,
because fancy shoes hurt my 43-year-old feet that have fallen arches and
bunions, because I hate the feeling of lipstick on my mouth and how it comes
off on my daughters' cheeks and on my coffee mug, because I hate my thick legs
and how they look in very girly shoes, because Johnny wishes I'd wear lipstick
and heels when I'm really more comfortable wearing lip balm and boots, because
it's hard for me to be raising a child so unlike me. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So I decided I would get her a pair of heels for Christmas:
a pair of little-girl Dorothy shoes; ruby-red sequined Mary Janes with a
one-inch heel. And now that she's walking much better, I got a pair of those
for little Rae as well. They can both clomp around in them in the house to
their hearts' content on Christmas Day and then with any luck, after a few
days, they'll forget about them. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTPqcjQnwM61cm9iemnoIyJCA7z5W0GsjctXrRNR_jcJE7qpXbwcwEbyUkwm70PKI-rx_rELVyH53ab3htsoiJujE6sMshkihFrb6K4Qyth-Pworrf83UGJSi9ZAs1AO1T0rBW41zua5Y/s1600/shoe.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="402" data-original-width="669" height="192" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTPqcjQnwM61cm9iemnoIyJCA7z5W0GsjctXrRNR_jcJE7qpXbwcwEbyUkwm70PKI-rx_rELVyH53ab3htsoiJujE6sMshkihFrb6K4Qyth-Pworrf83UGJSi9ZAs1AO1T0rBW41zua5Y/s320/shoe.png" width="320" /></a></div>
<br />
<!--EndFragment-->Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8497038950704433299.post-64930134789681996102016-08-24T14:39:00.000-04:002017-11-07T22:56:21.941-05:00What Are You Now?
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<!--StartFragment-->
<div class="MsoNormal">
Today a colleague turned to me and asked, so what are you
now? </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I looked at her blankly. What do you mean? You know, she
said. You were a New Yorker. What are you now... What do they call it in
Massachusetts? Are you a Massachusetts-ian? I thought about it for a
moment. I honestly didn't know, and it made me uncomfortable. I'm just a
Masshole, I joked. But inside I felt slightly sick. Am I not still a New
Yorker?</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
(I looked it up, by the way, and it's either a Bay Stater or
a Massachusettsan.) </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It's been an eternity since my last post. We have been busy
shutting down our lives in New York City and getting all of Teeny's medical and
therapeutic services, all of both girls' activities and schools, everything we
own and our entire lives uprooted to a brand new setting. We closed on our
house about six weeks ago. Looking back at all we have done to get where we are
is exhausting, because now almost everything in our lives is different. New
house. (A house!) New town. (A town!) New schools. (Public!) New therapies. New
doctors, new policies, new service providers. New people in our lives. Not a
new job, but a very new way of doing it. New new new new new if I hear that
word one more time I will just implode into an overwhelmed heap of introverted
leave-me-alone. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The best part is that we have everything. Really. Our little
house sits on an acre of land, much of which is wooded, wild and brambly, and
even though we are in a thickly settled area a block from a school in one
direction and a block from a horse farm and half a dozen tiny businesses in the
other, three miles from the town center and twenty miles from one of the
biggest cities in the northeast, when we sit on our deck, we are in the middle
of nowhere. The trees are tall and thick, hiding nearly all evidence of
neighbors and neighborhood. Hilly, desolate hiking trails, an old, out-of-use
railroad track and a big boating pond are within walking distance. Occasionally
a dog barks far off in the distance to remind us that we are not as isolated as
we think we are, which is both a disappointment and a relief. The birds are
noisy and enthusiastic about the feeders we have set up for them. The local
chipmunks, hungry and thinking about the winter, do their best to stuff their
cheeks with bird seed before the girls catch them and shriek excitedly,
gleefully, to shoo them away. We have plants. A shrub! Flowers. Basil, thyme, a
green pepper. My thumb is not green; we water regularly, check for new leaves
dutifully and hope for the best. Sap from a tree I cannot identify drips on my
new car; spiders spin webs in the front bushes. The wind is whispery. We
sometimes have clouds that take all sorts of shapes; on clear nights we have
thousands and thousands of stars. The longer I look, the more I see. I could
lie on the deck forever, soaking it all in. It is easy to understand why so
many writers have made this neck of the woods their home. The muse is with me,
too, out here on my back deck. I have had many happy places over the years but
never one I actually lived in. Now, my happy place is my home and that is
probably the best feeling I've had in the entire world. I'm like Dorothy: there's
no place like home.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The first night in the house, Bee was so tired from all the
activity that she drifted off before I could even kiss her. I crossed the room
and knelt down to kiss Teeny, whose big eyes were still wide. Mama, she
whispered. I can't sleep here. Her lip was quivering. In the darkness I
could see she was about to cry. Why not, baby girl? Because, she started,
and thought about how to formulate her words. Her voice was shaking and she
reached out to me, opening her arms. Because I don't love it yet, she said
quietly. She blinked, and the tears spilled over her cheeks. Aw baby, I
murmured, and pulled her close. I stroked her hair, her forehead. I held her
until she too began to drift off. I felt sad because I did love it and I wanted
her to love it too.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Three days later, Bee was spreading her wings, zooming from
one room to the next, running up the stairs to her room, lugging bags of her
stuff down to the basement, frolicking on the deck and scaring off the cardinal
family that visits every morning. She stopped long enough to exclaim to me, I
love it here! I don't want to go back to New York ever again. Can we stay here?
She flew through the house, making me think of a dog marking its territory. And
Teeny, always listening, always copying her sister, threw her arms out and
chimed in too. I love this house now! I don't like New York anymore. I
remember thinking, well, that was easier than I thought it would be. Sure, Bee,
I smiled. I love it here too. And I breathed a sigh of relief and I turned to
Johnny and said, Yes! We did it! </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In the month and a half since then, I have retold that story
countless times. Oh it's been great! I say to anyone who asks. Can you believe
it? It only took three days to go from wide eyes in the night to never wanting
to go back. The kids adjusted so quickly! Yeah, I'm traveling a ton for work
but it's totally fine! Johnny loves it too! NBD!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Yeah, yeah. I know. I was silly to think it would be that
easy. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
About two weeks ago the tears started. Shyness invaded.
Moodiness. At times our six year old transforms into an unfamiliar beast
who storms the house with eyes that roll like a teenager's, a stomping foot, a
balled fist and a sharp, whining voice like Veruca Salt's. My reaction to this
is not always one I am proud of. When I am being my best self, I ask hey,
what's going on with you, kiddo? in the calmest voice I can muster. I don't
know, she sobs, suddenly a puddle of tears and sweaty emotion, climbing into my
arms like when she was a toddler and could only get closer to me if she
unzipped my skin and nestled into my bones. Mama, I am all mixed up.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I relate. I am all mixed up too, kid. We have traded an
invisible life in a diverse, bustling, crowded city for life in a quiet town
where everyone looks the same. We used to hurry along without stopping to look
up, and now we take our time, looking around at all that space, breathing the
country air. It's so green! And now I can't wait for New England in the fall.
In the meantime though, I have weeds to pull, flowers to water, scraps to
compost. I have furniture to assemble, paint colors to select. I am 43 years
old and learning about septic systems, about tree sap, about the surprising
complexity (to say nothing of the expense) of trash pickup. I stand in my
driveway in the evenings and survey the property and all the things that need
to be fixed and renovated and reworked and I don't have the first clue how to
start. It feels like I have an awful lot to learn.</div>
<div class="MsoNormal">
<br />
The people we have met are nice. No, better. Nice is an understatement. They
are amazing. We have been embraced strong and hard by a few families with
special needs kiddos, families who get it. We have had a number of play dates,
ones that we actually enjoy and we come home and look at each other and say, I
think I could be friends with that person. But still, I worry that they won't
want to be friends with me. I am too weird, too poor, too tattooed, too
progressive, too vegan, too unavailable, too employed, too sober, too uptight,
too serious. And then I remember that I already have friends who love me
perhaps in spite of or perhaps because of all these things and I made the
choice to leave them and here I am in the most beautiful place in the world but
I feel like no one here gets me. Yet. But the evil voice in my head hisses: I
am not one of them. I'll never be anything but an outsider. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We make an effort with our neighbors. We greet the letter
carrier, the trash collectors, the FedEx woman, the dozens of contractors,
delivery people, house cleaners we see on our street every day. We say hello to
every single person we pass. We wave. We smile. We small talk until our faces
crack. Oh it's really such a pleasure to meet you. Yes, the house halfway down
on the right. That's the one! Awww, hiya buddy! He's so cute, what's his name?
Nope, we don't have a dog. Yes, from New York. Uh-huh, we lived right in the
city! In Manhattan! No, not on the Upper West Side. We lived in Harlem. Yep,
you're right, it sure is changing quickly there. No, they went to private
school. Oh yes, my older daughter will be starting there in the fall too! No,
we haven't joined the rec center yet, but we did sign one of our girls up for
piano lessons. The other one has a neurological disorder; we take her to a
number of therapeutic activities after school. Yes, she uses a walker on short
distances now. She's such a great kid, she sure is. Yes, I do actually work. My
spouse stays home with the girls because I travel quite a bit. No, we don't
have a contractor yet, but could you recommend a plumber? On and on and on and
all the while my eyes are wide with house envy and I try not to react at the
enormous homes with their museum-worthy landscaping, their beautiful showers
that work, their finished basements, their centrally air conditioned bedrooms,
their renovated kitchens and their garages and the luxury cars within. And I
feel ugly all of a sudden because I feel greedy and entitled to more than I
have and more than I need when having less never bothered me before. I have
never been especially materialistic, I remind myself, and I remember the time
not so very long ago I when I lived in a 750 square foot apartment with my
spouse, my two babies and sometimes two cats, sometimes three, and I saw a meme
that said "Some people are so poor, all they have is money" and I
smiled to myself because I had so much love in my life that I felt it even when
I was up late at night playing with a checkbook that just wouldn't fucking
balance but I knew it would be okay because I was happily partnered with
someone who worships the very ground I walk on and my kids are enthusiastic
about every single thing and they even eat broccoli without putting up too much
of a fight and I have a job I absolutely adore and I never ever thought I'd be
where I am in life and who cares if my apartment is small and I ask for hand me
downs and we can't afford to go on vacations because I made all this happen and
I love every minute. So why am I having house envy now? Why am I scared to
invite people over? Why do I think that their lives are easier or better or
more loving than mine for a second? For even a single second? I don't know. But
I do. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The girls are growing tall. They are tan from beach
vacations, the new neighbors' pool, weekend picnics on the deck. They are ready
for school and I am dutifully adding orientations and welcome sessions and
pizza parties and ice cream socials and moms nights out to my calendar. And
suddenly I think about being a Massachusettsian or whatever it is and wonder,
who in the world am I really?</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Right now, I am not really sure. So I asked my spouse. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
You're intelligent, he said. Hard working. A dedicated,
loving mother. You love to read; especially novels and memoirs. You read about
real life, about people. You like thinking about other people's lives. You're
extremely organized and you get a lot of stuff done very quickly. You are too
tightly wound and don't laugh or relax enough. You are chatty and friendly and
outoging but you snap at people when they try to talk to you when you are
engrossed else. You don't sleep enough. You're passionate and caring. And
you're hot and I love you like crazy.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Yeah, I said. But who am I? I asked again. I don't
know what any of this means. He gave me a look and went back to his book.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I know this: I am address labels on my unread New Yorker
magazines, carried everywhere I go and ultimately tossed in hotel room garbage
pails because I just didn't get to them. I am brand new frequent flyer numbers
and hotel rewards program usernames. I am a name on a mailing list that someone
sold to someone when we bought our house; I am the piles and piles of
personally addressed letters and promotional material from businesses in a
50-mile radius begging me to let them offer me a quote to fix my this, renovate
my that. I am exercise gear that I bring home from a work trip still clean
because I just didn't find the time to run. I am the new kid in a town that is
wonderful and beautiful and welcoming but where I have no friends and where the
good coffee is not walkable and where people stare at me because I am not
blonde and thin and beautiful and wealthy and where I feel like an outsider. I
am the dream of having nothing to do but sit on my deck and read a novel and
drink tea and hug my children. I am how I think my neighbors might see me:
alternately the cool, hardworking, sophisticated city slicker, maybe a little
artsy, maybe a little mysterious, maybe a little edgy; alternately the weird
girl from Beetlejuice or maybe Girl, Interrupted only grown up now, but still
crazy. And then I am how I see myself, which is tired and fat and always
struggling to do more, be more, have more. I have gone from being someone who
felt confident and satisfied to someone who is just not good enough. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So now it's late and I still have a couple emails to finish
so instead of thinking about this, writing about it, or better yet just
shutting all my shit down and going the fuck to sleep, I head back upstairs
where I am too tired to focus well so I internet-shop for an hour or more until
my spouse notices that I am missing and comes to hunt me down and drag me --
literally kicking and screaming because I'm an adult and don't I get to decide
my own bedtime? -- to bed, where I act like I'm five, carrying on that I'm not
tired and I just need to read this and order that and I'll go make a snack and
then it's after midnight and before I know it my happy and beautiful and brave
and brilliant six year old's face is in mine and she's pulling my eyelids open
and Mama, can we go for a bike ride? </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Nothing really makes sense to me right now, but these bike
rides are everything to me and symbolic of so much. Together, she and I can
take on the unknown. Early mornings in our town are quiet and beautiful and we
ride and ride and ride. It doesn't matter who we are and where we come from. In
those moments, the world is ours.</div>
<div class="MsoNormal">
<br /></div>
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<!--EndFragment-->Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8497038950704433299.post-3120738385723982222016-02-18T15:31:00.001-05:002017-11-07T23:02:10.731-05:00Teeny Tiny Communique
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<div class="MsoNormal">
<br />
When Teeny first started nursery school, she talked like a cave-baby. Then
speech therapy started and we started to see dramatic improvements. Nowadays
Teeny tests in the average range for speech, which amazes me because she is
hardly articulate and she struggles with pronunciation and clarity. Most of
all, she struggles to express her feelings. She doesn't narrate stories,
dreams, hopes. She doesn't tell me about her day. All of this depresses me and
makes me feel a real lack of hope, but then I see her with her friends in
school or on a playdate and she holds her own. When I'm with her I am sometimes
struck that I am having a conversation with her, which is something I
wasn't sure I'd ever do. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
At four and a half, Teeny is very polite most of the time,
saying please and thank you and demonstrating genuine concern when others are
upset or sick or hurt. Like the other day when she said sweetly, "Are you
okay, Aimee?" and I almost choked on my tea. Of course, she is also very
stubborn and even bratty sometimes, like most four-year-olds. But this coupled
with the inability to adequately express what's going on behind the pout, the
crossed arms, the stuck out lower lip or the furrowed brow can be infuriating.
Not just infuriating for me, but for her, too. She can be manipulative like any
child her age but she has a striking inability to self-soothe at unpredictable
times, which means that she can shrug off one "no," but another can
send her into a tailspin of hysteria that lasts half the day. Again, very
frustrating for all of us. When she was three, she learned to say "I don't
want to," and now that she's four, she's gotten better at expressing what
it is that she doesn't want to do, but not quite correctly. This makes me laugh
sometimes, because it's so damn cute:</div>
<div class="MsoNormal">
</div>
<ul>
<li>I don't want to medicine. </li>
<li>I don't want to underwear. </li>
<li>I don't want to bathtub.</li>
</ul>
<br />
<div class="MsoNormal">
A lot of her obstinacy revolves around food, which
often makes me see red. She can go for multiple meals with barely eating a
single bite, so I get panicked that she will starve. I work myself into a tizzy
making what she says she wants to eat, and then:</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I don't want to toast. It's too hot. I don't want to peanut
butter and jelly. I don't like it. Nooooo. My belly is full. My mouth is
zippered up. I'm done. I'm finished!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
She will tell me she "doesn't like" her favorite
foods. She will complain of thirst ("Can I have some water please? I
promise I won't spill it. Oops. I spilled it just a little bit. I'm sorry, Mama.")
but refuse to drink a drop if her water arrives in the wrong cup. She will ask
for a specific food, which I prepare in the hopes that she will eat a full meal
only to have her turn away from the first forkful of whatever she insisted on
having so that I push pasta with red sauce, peanut butter and jelly, grilled
cheese or some other sticky, disgusting thing into her hair or her ear. In an
attempt to block a spoonful of cereal with soy milk or oatmeal with maple syrup
from reaching her mouth, she will send it flying across the room or into my
lap. She will sometimes chew a mouthful for five or six long and
aggravating minutes, pointing to her mouth and shaking her head when I try
to give her another mouthful. Other times, she will press her lips together
and refuse a single bite, and then about ninety-five percent of the time if I
try again ten minutes later, she opens her mouth happily and eats the whole
thing like there was never an issue in the first place. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
She keeps a sharp eye on her sister, which is both wonderful
and terrible. What Bee uses skillfully can often be challenging for Teeny's
fine motor skills, so I cringe when I hear things like:</div>
<div class="MsoNormal">
<br /></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnhZhcWWmd0EWi6Ycbho2erdF0qzJL4tqDUtlqlNQSdRfrvbZz5yWaVYX0DbBRkEjiVHJI7usNYH4or1wn3Nlscv-qKVFL0d4Pl76ZqJsCxpdrXONsbrf5y46U3xs8WxUFL85kpNfAc-8/s1600/writing.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="669" data-original-width="502" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnhZhcWWmd0EWi6Ycbho2erdF0qzJL4tqDUtlqlNQSdRfrvbZz5yWaVYX0DbBRkEjiVHJI7usNYH4or1wn3Nlscv-qKVFL0d4Pl76ZqJsCxpdrXONsbrf5y46U3xs8WxUFL85kpNfAc-8/s400/writing.png" width="300" /></a></div>
<div class="MsoNormal">
</div>
<ul>
<li>I want to red lipstick!</li>
<li>Can I do Sharpies? Only on the paper, I promise, Mama.</li>
<li>I want to ice skates. </li>
</ul>
<br />
<div class="MsoNormal">
On Saturday mornings they wake up at dawn, so we sometimes
bribe them with iPads so we can sleep another hour or so. This is often a total
tease for one of us (usually me), because of this: </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Can you find Bubble Guppies on my iPad? (Five minutes later)
Ooops, I dropped my iPad. Can you get it please? (Five minutes after that) I
don't want to this part. Can you help? Mama? Mamaaaa? Maaaaaamaaaaaa. I don't
want to this part. Can you fix it? Maaaaaaaammmmaaaaaaaa.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When they were babies, our girls slept with us, but they
have both been sleeping in their own beds for years. Unless they are sick. When
either of my kids is sick, I bring her into bed with me so I can listen to how
she breathes, get her quickly into the bathroom if need be, take her
temperature, give her medicine, etc. Of course the first day she's well enough
to go back to her own bed, there's always a protest. Bee will cough weakly and
say, see? I'm still sick, Mama. This tugs at my heartstrings a little but I
don't fall for it. This past week, Teeny and I have both been really sick and
she spent two nights in bed with me, coughing and snotting in my face and in my
hair and scooting her feverish little body into mine. So on the third night, I
was not at all surprised to hear this:</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Can I sleep in your bed? Well, but I'm sick. I'm still
siiiick! Mammaaaaa I don't want to own bed.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And since she was well enough to sleep in her own bed, she
certainly assumes she would be well enough not to need cough medicine. So this
recent little monologue made me laugh:</div>
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<br /></div>
<div class="MsoNormal">
I don't want to medicine. But I need medicine to feel
better. Can I have some cold water in a mama cup? No, in my Bubble Guppies cup.
With my purple straw. Because purple is my favorite color! (After getting her
cup) See? I feel better!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
She knows she has to wear her braces most of the time, she
knows she has to hold on with both hands when trying to walk, she knows she
can't watch her iPad on school days, and yet she fights us on all of these and
more nearly every day. She knows how to blow her nose but won't do it, much
preferring to ask me to come wipe her nose every two seconds, like when I'm
driving and it's really convenient. She loves to flush the toilet but doesn't
get why we want her to close the lid and then flush instead of the other way
around. Manipulate, manipulate, manipulate.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When I try to be manipulative back, she outsmarts me. Like
the other day when it was something like seven degrees out and I was trying to
convince her to wear a hat to the school bus and she wasn't having it. Teeny,
want to see your cute hats? Can I show you the cutest one? I asked. She
narrowed her eyes at me. I want to see a hat but I don't want
to wear it.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And today, when she decided she had to pee the second she
was buckled into her car seat and we were ready to roll, she surprised me
again. I was exasperated, we were running late. I chided her: "Why didn't
you tell me you had to pee when we were still at home?" </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Because, she said, you didn't go in potty with me and
then we leaved.</div>
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<br /></div>
<div class="MsoNormal">
She was right. I had forgotten to sit her on the potty just
to try, the way I usually do in the morning. In fact, she even brushed her
teeth sitting at the dining room table this morning because I was juggling so
much. Outsmarted again. </div>
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<br /></div>
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<div class="MsoNormal" style="text-align: center;">
<br /></div>
<div class="MsoNormal">
The good news is that she is working through a lot of her
difficulties in play therapy, which is basically counseling for the pre-verbal
set. She works through a lot of issues around self-soothing, transitions and
her growing frustration about what her body will and won't do with her school
psychologist. They use dolls mostly, but also play games too, and they work
through a lot of feelings. Nowadays anyone in our house can expect to hear
Teeny say "You be mama. I be baby" a dozen times a day. She likes to cook
in her play kitchen, pack her backpack full and pretend she's traveling, drive
her dolls to Nana's house, stick me in her bed so she can tuck me in, act out
mama-and-baby scenarios with her mermaids in the bathtub, and so on.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
To entertain myself, I compiled a list of other things that
have come out of her mouth in the past couple of weeks. I wanted to remind
myself that she is speaking in mostly complete and somewhat sophisticated
sentences, that she is clearly watching her adult and peer models and copying
words from them, that she understands synonyms and antonyms and has
multiple ways to say the same thing, that she is expressing abstract thought
and not just concrete needs and best of all, that she has a sense of
humor. I was pretty impressed with what I collected. For example:</div>
<div class="MsoNormal">
</div>
<ul>
<li>What Dada and Bee doin'? Let's go check it out!</li>
<li>It's broken, Mama. It's not working.</li>
<li>Look, my booty's hanging out of my pants!</li>
<li>Ummmm I don't think so.</li>
<li>Give me your phone. I want to see pictures of Teeny.</li>
<li>Hey! I'm not talkin' to you!</li>
<li>Maybe later. Leave me alone. I'm busy!</li>
<li>You can't find it? Aww. That sucks.</li>
<li>Let me think about it.</li>
<li>Mama, I have to pee. Really really now!</li>
<li>Can you give my mermaid ponytails please? Thank you!! (Two
seconds later) Can you take out her ponytails now?</li>
<li>What the fuck?</li>
<li>It's morning time and I'm awake! I don't want to sleep
anymore. Can I have my iPad?</li>
<li>Can I stand up on the chair? (And then, after being told
100000 times that it's not safe): It's totally safe, Mama. </li>
<li>Are we going in the car? Let's take the train! I like the 3
train, not the 2 train. But the train is loud. So let's take the bus. No. I
want train. I like the lights.</li>
<li>Wait! I'm not strapped into my wheelchair! </li>
</ul>
<br />
<div class="MsoNormal">
And so on.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Best of all, I love that she has come to depend on certain
rituals. When I leave for work in the morning she crawls to the door and
watches as I put my coat on. "Wait!" she cries when I pick up my bag.
She holds out her arms to me. "Kiss and hug!" and then as I walk out,
"Another hug! And kiss too." I love this and could go back ten times
for more kisses and hugs. Every night when we tuck her in, I whisper in her
ear, telling her about all the things she has going on the next day. She loves
this part of bedtime and if I forget, she will call me back and ask "What
we doin' tomorrow? Do I have school tomorrow? And then swim class? No? Do I
have ballet? And then, what? And after that, what?" And then I hug her and
kiss her and she hugs me and kisses me and as I leave, she calls out,
"Goodnight! See you in the morning! Sleep well. Have sweet dreams!"</div>
<div class="MsoNormal">
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<!--EndFragment-->Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-8497038950704433299.post-38069735146636895772016-01-28T00:47:00.002-05:002016-02-04T16:23:14.738-05:00Start Spreadin' The News... Part Three<div>
<br>
For Bee, the cutthroat NYC kindergarten process, which I wrote about extensively <a href="http://www.teenyandthebee.com/2014/10/this-ones-nail-biter-guys.html" target="_blank">here</a> and <a href="http://www.teenyandthebee.com/2014/11/more-on-process.html" target="_blank">here</a>, took seven months and aged me 20 years. Seven months of research, open houses, interviews, playdates, IQ tests, applications, essays, financial aid forms, check writing, some groveling and definitely too much wine drinking, and Bee was finally accepted to a school we felt we could love and could love her. She was in and they came through with a generous-for-a-private-school tuition assistance package that we felt, with some nips here and tucks there, we could make work. </div>
<div>
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<div>
<div>
This year, two months into the process, I had a meltdown. In short, I not only refused to participate, I made the conscious decision to flee.<br>
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<div>
<div>
Teeny is sixteen months younger than Bee but in New York City they would be only one grade apart. Because her birthday is in the fall, the Department of Education wants to push Teeny into kindergarten at the age of four, not five. New York City's DOE follows a calendar year, so all kids turning five on or before December 31 of that year must be enrolled in kindergarten. So in addition to being one of the smallest kids in her class physically -- whatever class that might end up being -- she would also be one of the youngest kids. Every time Bee went to an interview or a playdate at a prospective school, I tried to imagine Teeny going through the same thing and I just couldn't. There's no way she'd be ready. </div>
</div>
<div>
<br></div>
<div>
If the journey to kindergarten is difficult for the average five-year-old New Yorker, imagine what it's like for a kid with special needs. Now take that and imagine what it's like for a kid with a neurological disorder so rare that there are maybe 100 cases worldwide, and now imagine that kid unable to run or walk or hang up her own jacket and almost a full year younger than everyone else in her class. </div><div><br></div><div>There are 127 private special education elementary schools in New York City that serve elementary school age kids with 13 different classifications of disability. My guess is that Teeny will be classified with "other health impairment" (OHI), which is pretty uncommon so the schools don't cater to it. The overwhelming majority of these schools are for kids with learning disabilities or who are on the spectrum. Those schools are not as supportive as Teeny will need. Then there are the schools for kids with emotional disturbances, also not for her, and finally the schools for the multiply disabled, which are too supportive and not academic enough for her. Then there are over 1,800 public schools in the five boroughs, all of which are supposed to accommodate the needs of the students zoned to them. Unfortunately for Teeny, we live in the worst district in the city, with wildly underperforming schools that cannot adequately meet the needs of even their neurotypical children. And our neighborhood school, the one we're zoned to, is not "barrier-free," which for us means it isn't wheelchair accessible, and therefore even if their academics were top-notch and their therapies extensive and exhaustive, it simply cannot accommodate Teeny. </div>
</div>
<div>
<br></div>
<div>
<div>
The idea of having to go through this same ringer again a second time with even fewer prospects for a child I believe in my bones should not be going into kindergarten next year made me feel weak. I had done lots of research on special ed private schools while we were looking at schools for Bee, and what I learned is that Teeny, because of her particular set of needs, has even fewer options than Bee did. For Bee, we had narrowed the list down to about twelve and in the end applied to them all. </div>
<div>
For Teeny, we had two crappy choices: one, be prepared to front up to $120,000 per year for tuition at one school that accepts only <i>four</i> special needs kids like Teeny per year, or two, move to a particular district on the Upper West Side to improve our chances of getting picked in the lottery for admission to a public school that has a program for kids with physical disabilities. </div>
</div>
<div>
<br></div>
<div>
So when the summer of 2015 rolled around and the emails and meeting invites started to come in for the Turning 5 process -- the DOE's lingo for that same awful cutthroat rite of passage but for the special ed preschool set -- I almost felt like I was experiencing PTSD. </div>
<div>
<br></div>
<div>
Since the research had turned up so few leads, we called NYC's highest profile special needs attorney and set up a consult. With her $450 per hour clock ticking, we asked her what to do. After listening to our story and looking over some of the documents we'd brought along, she told us I'd been right. She named those same two options, and she admitted that neither were ideal. We chatted about a handful of other schools, but she agreed that all of them were pretty inappropriate for Teeny. It was sobering when she said very seriously that there was a very real risk of not getting a good placement. In her opinion, our best bet would be just to move. I laughed. But she wasn't smiling. </div>
<div>
<br></div>
</div>
<div>
Then I went to a lecture by a prominent NYC special needs advocate. I lingered after everyone else, hoping to get a different answer from her. All my kids, she said, go to one of the two schools you've already identified. So if those won't work for you, I suggest you seriously think about getting out of the city. Again! I really couldn't believe it. </div>
<div>
<br></div>
<div>
We do not have $120,000 to front for one year of tuition, but even if we did, that school got crossed off my list when I called them and they refused to talk to me because of Teeny's birthday. They said they use the ISAAGNY cutoff dates and not the DOE dates because they are a private school that occasionally opens its doors to special ed students, not a special ed school for kids placed there by the DOE. So since she wasn't going to be 5 by September 1, she would not be considered for admission. So the DOE was punishing her for being too old to stay back but this particular school was punishing her for being too young to move ahead. </div>
<div>
<br></div>
<div>
It might have been easier to come up with $120,000 than to actually entertain the thought of moving into the Upper West Side district that houses the public school that was our other option because that neighborhood is far pricier than ours -- far more than $120,000 more in equivalent real estate, anyway. Be that as it may, I thought I might have a shot at getting her in from out of district based on her charm and level of school readiness. I worked every single angle. I emailed, called and texted everyone I knew who had a kid or knew of someone who had a kid at that school. I tried to reach out to the administration via my CPSE coordinator. I showed up with my adorable kid in her adorable wheelchair at their spring fair and I talked to everyone with a name tag. With all I had, I kept trying for six months. And some people replied to me because they were nice people and genuinely wanted to help, but it seemed that no one could. No one from the school ever got back to me, and the more I asked, the more I heard it was a total crapshoot because while they said their inclusion program was populated by "lottery," what little feedback I did get seemed to imply that this was code for "we cherry pick our special ed kids and don't have to admit it to anyone." Which was not any more reassuring than the other option.</div>
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<br></div>
<div>
I also tried to explore pendency. Pendency, in DOE-speak, is when you like the IEP you have and you sue the DOE to get them to keep it as-is for one more year. So in Teeny's case that would mean getting to hold her back and do another year of preschool. I was told right away that her school would not, could not do this. There was another school they could refer us to that did, but when I talked to them, they said that Teeny was far too skilled for their programming and that she'd be better off in a more academic environment.</div>
<div>
<br></div>
<div>
I was essentially striking out before even getting started. </div>
<div>
<br></div>
</div>
<div>
So, we're moving. Not today, but soon. </div>
<div>
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We are moving to a state where the public schools are excellent, more consistent, more inclusive. Where both of our girls can go to the same schools and have their very different needs met. Where because the cutoff for kindergarten is September 1 and not December 31 like in New York City, Teeny not only can but would have to do another year of integrated preschool. </div>
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We are moving to where this new neurologist can help build a team that will follow Teeny for the rest of her life. Where I lived for six years, where my birth mother settled and spent 30 years raising a family. Where she and I met.<br>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdovXWOaHuOCF5LH-F9Bcr9EggwPtox4j45IsFi1ijoAZlKub63bWQZqmB-bgSirbk20WiPLwmrj_7ottYBYgWB3mRH2m1xggEz9VOrpK0oSqg95axGJw8KGDFHx1c_eOhe8NuyYRYqq0/s1600/trampoline.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdovXWOaHuOCF5LH-F9Bcr9EggwPtox4j45IsFi1ijoAZlKub63bWQZqmB-bgSirbk20WiPLwmrj_7ottYBYgWB3mRH2m1xggEz9VOrpK0oSqg95axGJw8KGDFHx1c_eOhe8NuyYRYqq0/s320/trampoline.jpg" width="239"></a>My grand- and great-grandparents came through Ellis Island and these days, even though as an adoptee I am not technically related to them, I have been identifying with them more as I think about this very big thing we are about to do so that Teeny has better opportunities in education. Truthfully, I know very little about what brought my great-grandparents to this country. I don't know what they left behind and whether they were fleeing something or someone. I remind myself that leaving everything you knew in the hopes of a better life for yourself and your children is something that happens all the time. All the time. But I have felt so stuck for months. I don't know how to write. I don't know how to connect with people. I don't know what to buy, what to save, what to throw away. I don't know how to say goodbye. I don't know how to sell an apartment or buy a house. I feel like I've just stepped off the trampoline we got for Teeny for Christmas, dizzy and shaky and about to fall over and wholly unsure of my next step and whether it would me on solid ground.<br>
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People move all the time, I tell myself. And we are going somewhere we know. Somewhere we love. I chose this. I want this. I know it's right. And still. It's so scary.</div>
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Despite my to do lists and timelines and spreadsheets, I am completely unable to visualize my life as it will be six months from now, in part because we have decided it's too soon to tell the kids (so please don't spill the beans)! For now, though, we are packing a box at a time. We are updating appliances in our apartment and painting walls and doors that need brightening. We told Bee's school. After all that work last year, that one really hurt. We are processing with family and friends who are sad to see us go, and imposing on family and friends in the new area who are helping us make decisions. And soon, we list the apartment. Then, we cross our fingers and wait. Wish us luck!<br>
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Unknownnoreply@blogger.com20tag:blogger.com,1999:blog-8497038950704433299.post-16295407868619397202016-01-26T23:01:00.005-05:002016-01-27T15:28:12.880-05:00Start Spreadin' The News... Part Two<br />
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Teeny had two very big appointments last November. The first appointment was with a neurologist at Harvard and Mass General who specializes in cerebellar dysfunction. It took me two and a half years to get this appointment. Back in 2012, post-MRI, I read a bunch of medical articles about cerebellar hypoplasia and saw his name listed as author over and over. I felt like he might help us understand how Teeny learns, since his research led efforts to prove that the cerebellum does more than control motor function. He believes that it plays a role in learning and cognition. This doctor is mostly a researcher who rarely sees patients and even more rarely sees pediatric patients, but I felt that if I could just get him to look at her MRI, he would be interested. So I called and I emailed and I called more and I emailed more and I was on the verge of giving up when I heard an interview with him on NPR <a href="http://www.npr.org/sections/health-shots/2015/03/16/392789753/a-man-s-incomplete-brain-reveals-cerebellum-s-role-in-thought-and-emotion" target="_blank">here</a>, and this part was like saying Teeny's name:</div>
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<span style="font-size: x-small;"><span style="color: #333333; font-family: "arial" , "helvetica" , sans-serif; line-height: 1.70588;">"Research .... supports the idea that the cerebellum really has just one job: It takes clumsy actions or functions and makes them more refined. "It doesn't make things. It makes things better," Schmahmann says. </span><span style="color: #333333; font-family: "arial" , "helvetica" , sans-serif; line-height: 1.70588;">That's pretty straightforward when it comes to movement. The brain's motor cortex tells your legs to start walking. The cerebellum keeps your stride smooth and steady and balanced. </span><span style="color: #333333; font-family: "arial" , "helvetica" , sans-serif; line-height: 1.70588;">"What we now understand is what that cerebellum is doing to movement, it's also doing to intellect and personality and emotional processing." </span></span></div>
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This re-ignited my spark, so I started calling and emailing again... and finally, <i>finally</i>, we got an appointment. This is really great news, right? YES. And it was also terrifying. Johnny was worried that he would tell us that we caused this, that we were somehow too rough with her and hurt her brain. A tiny part of me heard the naysayers in my head saying that her homebirth was what caused it, even though I knew better. Deep down I was worried that he would tell us he <i>doesn't</i> know what caused it or how we can help her. I didn't share Johnny's worry because I know we didn't cause it, and he didn't share my worry because he knows that with everything we do with her and for her, we <i>are </i>helping her already. So we had to agree to set aside our worries and just show up with an open mind and hear whatever he had to say. </div>
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And what he said was that Teeny has genetically caused pontocerebellar hypoplasia.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4LQqyN7SznYH2aHZuJBmAiraHytdp6ywcsgD1dX9NM_u0pRQSJi0mpYLiiCKy-Z-PzwMTrSJXUgsulLRDrHEvvQ7bdMivfIAthS4A6qOuA8LyqbD4EuVUo3xJmnpY1S7MsLzyvWi6PFQ/s1600/IMG_1972.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4LQqyN7SznYH2aHZuJBmAiraHytdp6ywcsgD1dX9NM_u0pRQSJi0mpYLiiCKy-Z-PzwMTrSJXUgsulLRDrHEvvQ7bdMivfIAthS4A6qOuA8LyqbD4EuVUo3xJmnpY1S7MsLzyvWi6PFQ/s320/IMG_1972.JPG" width="240" /></a>Do not Google this unless you are prepared to see something horrible. The bad news is that PCH is devastating. It's rare. It's often fatal, often in infancy. The good news, if there can be good news when your child has PCH, is that this doctor believes that she has a new variant, and that this new variant is not neurodegenerative but rather neurodevelopmental. That is fancy for the fact that when Teeny learns a skill, she keeps it. She is more capable than she was at birth, where most kiddos with PCH by contrast lose abilities as time goes on. He said there is no question about her diagnosis from her scans but that she has more to teach us all because while she and PCH2A kids (kids with the most well studied variant) have some symptoms in common, such as being small and borderline (or not so borderline) microcephalic, being very sleepy as newborns and hard to rouse, having issues with tone. But where most PCH2A kids have terrible seizures, difficulty with talking and walking, and none of them eat on their own, Teeny is completely different. He was very, very surprised at her abilities. But he didn't really know what to make of what he saw. In short, after three hours of testing and discussion, we left feeling confused. We got a lot of information but none of it actually changes anything. Now we know there is so much to do, but there is nothing to do. We are doing everything right, but there is no cure. There is no way to know how she will do, since most of the children who have gone before her have already died. He said that just by looking at her scans and at the exact areas of damage to her cerebellum, he could predict some areas of strength and some of weakness. He said she could start to seize anytime. But he also said that it was his firm belief that he could prove this was autosomal (genetic) and recessive. He felt Teeny's story has not yet been written, and I asked him if he would be the one to write it. He said yes! I asked him if that meant he would be her new neurologist and he said he would be delighted. We have a lot to learn from him and my hope is that he feels he and medicine in general have a lot to learn from her. </div>
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So great, now we know that I didn't cause it and Johnny didn't cause it but in reality, we both caused it because apparently we are both carriers of this terrible thing. How can that be? PCH is so rare that there are maybe 100 cases worldwide, yet he -- this person I really believe is as close to a soulmate as one can possibly have -- and I -- this adoptee with a hodgepodge of unknown genetics -- came together and made this happen? That is too much for me to wrap my head around, so we'll just leave it there for now.</div>
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Her second appointment was for a neuropsychological evaluation, which was done the following day by a colleague of the neurologist also at Mass General. We decided to do this to help us understand how she learns and what her potential could be. Schools like these evaluations to help make their admissions decisions because the test evaluates school readiness and, somehow, cognitive potential. It also makes recommendations for educational settings and related services. This test is a very big deal and usually a very expensive deal. When we had it scheduled in New York, we were quoted upwards of $6,000 and no one took insurance. But because this one was set up in conjunction with the neurology testing and because this particular neuropsychologist happened to be in my network, we paid nothing. Not even a co-pay.<br />
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The neuropsychologist and her assistants completed the testing in a few hours; it resulted in fourteen pages of confusing scores, recommendations and other details. The document does not do my daughter justice. She is so much more than scores and observations and a litany of things she cannot do and a short list of things she can. And at the same time, the neuropsychologist and those who worked with her that day did have some insights into her abilities and her potential. As much as I hate to admit it, the document does in some way describe her. The bottom line is twofold: one, PCH is so rare and strange that her strengths and weaknesses are a little all over the place (so, for example, she tests very high for "school readiness" but very low on visual spatial skills) so her scores are essentially meaningless because their pattern is that they have no pattern, and two, because of her strong social, emotional and verbal aptitudes, there is no better setting for her than an integrated, supportive classroom.</div>
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Which is exactly what we knew all along.</div>
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Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8497038950704433299.post-33629196008906257252016-01-26T09:28:00.001-05:002016-01-27T10:09:25.995-05:00Start Spreadin' The News... Part One<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: small;">
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One morning back in November, Johnny nudged me and said, "You know, your website needs some love. You haven't posted since August." And my thought was, what?! How is it November? And now here we are at the end of January and I have a zillion half written entries, abandoned because they felt trivial or because another big thing came along and sidetracked me. Since August, I have been through some of the toughest days of my life and since August I have also been through some of the best, most delicious, most wonderfully precious days too. So here are some highlights.</div>
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Before the end of the first week at Bee's new school, we learned that kindergarten is indeed a transformative year. Last year in her neighborhood nursery school we dropped her off at 9 and picked her up at 1. She had naps and playdates and snacks and juice boxes. She was a baby.</div>
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Now our little Bee gets the school bus at 7:20 every morning at a stop over a mile from our apartment and the bus drops her back off at that same spot at 4:20 in the afternoon, meaning we leave the house with her before 7 am and she returns -- on days she doesn't have anything after school -- after 4:30. At five years old, she works longer days than most adults I know. What's more, she has homework every night that involves reading, writing, math, drawing and more. This is so exhausting and she is so tired that she's ready for bed at 6:45. And because I've only barely walked in the door from work by then, that means she's up at 5:30 am doing homework and getting ready for school and I'm up with her so I can spend some time with her. So nowadays our entire family of spooky night owls is in bed before 10. When did we all get so old? </div>
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Bee is tall now, and more slender. She has long hair with a black streak and she wears hoop earrings. Some days, she's very concerned about her appearance but other days she prefers that I pick her clothes for her. She's still into her Twinkle Toes and all things glittery and sparkly. She's into magic: everything from the Rainbow Magic books to Harry Potter. She would wear makeup every day if I let her.</div>
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She is reading now -- slowly and rather reluctantly, if I'm honest, because she would much rather be read to -- and writing. She is showing a real talent for drawing and art. The girls are sometimes mean and petty, so she has had to work through a lot of interpersonal issues already. And I am proud of her for holding her own. She learned to ice skate, started riding a big girl bike (20", no training wheels) and my personal favorite, she is becoming marginally less picky an eater. In the fall she swam and was part of a weekly group that explored Central Park; this spring she'll be doing Glee Club and soccer after school. </div>
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But the real change is that she's thinking for herself. In one project, the children wrote their own book and hers was about when she got her cats. For MLK day, her dream was envisioning a world where everyone was vegan and no one hurt animals. For her first research project, she had to select an agent of change. I pushed for Bowie; she chose Henry Bergh (the founder of the ASPCA). Even though they fight a lot, she usually takes good care of her sister. And I am so proud of her. </div>
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Teeny also went back to school, this time in the integrated classroom. This was absolutely the right move for her. Her speech is very clear now and she is imaginative and expressive. She understands what it means that we are vegan and we don't eat animals. She cares for her babies, cooks in her kitchen, loves mermaids and Bubble Guppies. She always wants me to be the baby and her to be the mama. She strokes my hair and tells me to go to sleep in her bed, she makes me sit in a chair that serves as the backseat of the car so she can drive me to Nana's house. Her adaptive ballet class is putting her little troupe on the stage of Lincoln Center in two weeks. She swims weekly and has outside PT where she tumbles and stretches and zips on a zip-line. She has a pretty great life. </div>
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In addition to her PT, OT and speech sessions, she now gets play therapy twice a week. Originally the school didn't want to give this to her but I pushed and they ceded. And I'm so thrilled! Ordinarily play therapy is for children with behavior issues but I argued that Teeny needs it since she has difficulty expressing her emotions. In speech sessions she works so hard on articulation, pronunciation and expressive vocabulary that there is little time for narration. So twice a week she meets with the school psychologist and they work through a whole host of emotions. They often play with dolls and doctor kits and other interactive games to encourage her imagination. When the short sessions draw to a close, the psychologist has to prepare her for ending and transitioning, which is difficult and sad for her because she likes the sessions so much. This is really, really good practice for her.</div>
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The truth is that she seems to be going through a phase of getting easily frustrated. At four, it's totally age appropriate for her but it's also that she is mad at her body for not doing what she wants it to, at her mouth for not saying what she wants it to. And her frustration can be intense and hard to shake for all of us. There is a lot of pouting, arm crossing, huffing, even wailing. It would be easy for us to placate her with her iPad, with Laffy Taffy, with other things that make her instantly distracted. But we don't, because life isn't like that. And sometimes, when she struggles to soothe herself, we all suffer along with her. I am grateful for the play therapy because she gets to practice this in a controlled environment and we are learning how to help her through it at home. </div>
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We stopped most of the Botox injections and her legs are getting stronger. She's using the rigidity and spasticity to help her stand, which she can do now with no hands for more than five seconds! We went through a very complicated process to have her approved for a mobility evaluation because with her new strength she needs a more lightweight walker. It took four months to get that appointment, but it's coming in two weeks and I can't wait. We have a wonderful physiatrist and an equally wonderful orthopedist who disagree fundamentally with each other about how to handle her legs, so when, a few months ago, she needed new braces and the ones that were made for her by the orthopedist's orthotist gave her painful sores on the insides of her ankles, we had to have them made again by the physiatrist's orthotist. As a result, she went for weeks without braces, which was terrible for her feet, and when we got them, she had to learn how to use them all over again, wearing them first for an hour a day, then two, then three. </div>
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I have continued to wear her in a baby wrap long after most mamas stop wearing their babies. Because of her spasticity, I have to wear her with her legs closed, like she's riding side-saddle. She puts an arm around me and I put an arm under her legs and wear her like I'm sweeping her over a threshold. And I love every delicious moment. I can whisper with her, stroke her hair, breathe her in, feel her hugging me. But like her sister, Teeny is also getting taller, and she's getting heavy. This is problematic, because I can't carry her anymore. And her walker -- really a gait trainer -- is so heavy and clunky that she cannot use it independently for anything other than a physical therapy session. She can't use it to get herself down the street, or from one classroom to another. It's a big purple cage and it's hard for her to use. She hates it.</div>
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We have no choice but to adapt to life with a wheelchair, and none of us wants to. She doesn't want to be independent and I don't want her to have to be. It's a tough place to be, but we have to go through it. She's going to grow into a big kid, and then an adult, and she's going to need this independence in kindergarten and in life. So the lessons continue, for all of us. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg69eC5QvlCROyMTUtHnSj8A7ojM8w2ndxFcp7h2Gew_toRtS7BnmtYY52CZF2TwvGLnc04P6TgbJAwkNOOh55pVStGWJcOEp69m8EqwMx_hDYwqcVFMF_NNsjGzCIR9CQNh8VUtCp43XM/s1600/wheel.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg69eC5QvlCROyMTUtHnSj8A7ojM8w2ndxFcp7h2Gew_toRtS7BnmtYY52CZF2TwvGLnc04P6TgbJAwkNOOh55pVStGWJcOEp69m8EqwMx_hDYwqcVFMF_NNsjGzCIR9CQNh8VUtCp43XM/s320/wheel.jpg" width="240" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglVG2Ous9dHiIemFEWt3DvYLHc6dbBAdqvKJYl-uvZq-PxTJ4mFW5YeN8W9thhvmFaFMiEh8m0Vg59CNaLEhkQTTrqbn59kVtrpSzTX2Ivs0lkjsEiX4k8J4Wq-8rWZwWhT2uUYkTmlMg/s1600/both.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglVG2Ous9dHiIemFEWt3DvYLHc6dbBAdqvKJYl-uvZq-PxTJ4mFW5YeN8W9thhvmFaFMiEh8m0Vg59CNaLEhkQTTrqbn59kVtrpSzTX2Ivs0lkjsEiX4k8J4Wq-8rWZwWhT2uUYkTmlMg/s320/both.jpg" width="256" /></a></div>
Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-8497038950704433299.post-47257682252059043432015-08-04T00:45:00.004-04:002015-08-04T08:24:58.619-04:00On your marks, get set, go!<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">There weren't many
people in our neighborhood out at 7:15 this past Sunday morning, but if you
were one of them, you might have seen a duo biking down Lenox
Avenue headed towards the Whole Foods on the Upper West Side. You might have
heard them calling back and forth to each other. It might have sounded something
like this:<o:p></o:p></span></div>
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<br></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Older woman: "Okay,
we're gonna cross the short way when we get to the corner. Are you
ready?" <o:p></o:p></span></div>
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<br></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Little girl:
"Ready!"<o:p></o:p></span></div>
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<br></div>
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<span style="color: #222222; font-family: Arial, sans-serif; font-size: 16px;">Older woman:</span><span style="color: #222222; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"> "Thank you,
Bee."<o:p></o:p></span></div>
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<br></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #222222; font-family: Arial, sans-serif;">Or you might have heard this:</span></div>
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<br></div>
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<span style="color: #222222; font-family: Arial, sans-serif; font-size: 16px;">Older woman:</span><span style="color: #222222; font-family: Arial, sans-serif; font-size: 12pt;"> "Hey, Bee,
we have the light so double check and then you can go straight through when you
get to the corner. Ready?" </span></div>
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<br></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Little girl:
"Ready!" <o:p></o:p></span></div>
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<br></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #222222; font-family: Arial, sans-serif; font-size: 16px;">Older woman:</span><span style="color: #222222; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"> "Okay, good
girl."<o:p></o:p></span></div>
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<br></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #222222; font-family: Arial, sans-serif; font-size: 16px;">You might have heard the woman remind the girl to mind the doggie over there and oh, isn't she so cute?</span><span style="color: #222222; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"> You might have heard the girl laugh and say that she got
splashed when she biked through that last puddle. You would have seen them smiling at each other, enjoying that
summer Sunday morning and those empty city streets. And I wonder, would you
have sensed the fear in that mother’s heart that she worked so hard to conceal
from her daughter?<o:p></o:p></span></div>
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<br></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">I didn’t learn to ride
a bike until I was nine. Picture it: I was the oldest kid in the neighborhood to
learn and a total crybaby to boot. I had a big dorky second-hand bike with a purple flowered banana seat
and matching basket. My dad unscrewed the training wheels and dutifully ran
behind me down the sidewalk, letting go of the seat when he thought I'd gotten it. But I hadn’t; instead
I got 21 stitches in my chin when I lost control of the handlebars and landed
face first on a sharp bump in the concrete. I was an ugly sight on a bike, to
say the least. <o:p></o:p></span></div>
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<br></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Completely unlike me, Bee
learned to ride her bike at four and a half the very first time she got on it.
I had nothing to do with it. I wasn’t there for the moment itself so I can’t
tell you how it happened. I <i>can</i> tell
you that while she figured out how to ride it right away, it took her months to
learn to use the brakes, so for the first six months or so, she never got to
ride her bike anywhere but up and down the back courtyard. About a month ago,
we ran into some friends of ours at summer camp drop-off. They – a five-year-old, a seven-year-old and their dad -- were locking up their bikes outside of
the school. And that got me thinking. <o:p></o:p></span></div>
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<br></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Thirty-three years after
those stitches, I love riding my bike. When Johnny and I moved out of Brooklyn five-plus years ago, I recommitted to riding to work as often as I could since I would no longer have to battle with steep
bridges and long mileage. To make myself feel better about biking through
midtown Manhattan twice a day as the mother of two little ones, I took a class on biking in the city taught by <a href="https://www.transalt.org/" target="_blank">Transportation Alternatives</a> and vowed to obey
(most) traffic laws. I got a good helmet and I always wear it. Always. And I
insist that whenever anyone else in our family is on anything with wheels –
even an itty-bitty scooter – they wear a helmet. Even Teeny, strapped in three
different places into her adaptive trike that weighs so much she can barely
push the pedals, always wears a helmet. I try to ride and encourage the others
to ride as often as I can, because I really, really like riding my bike and I
want them to as well. <o:p></o:p></span></div>
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<br></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">I also really, really
like taking Bee to school or camp. It’s not always possible given my work
schedule, but I try as often as I can. Since her school and her camp are on
my way into the office, taking her in always meant leaving the bike at home and
going by subway. Until I saw this other family and I got an idea.<o:p></o:p></span></div>
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<br></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">“Hey, Bee. How would
you like to try biking to camp with me?” I suggested casually. <o:p></o:p></span></div>
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<br></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">“YES!” she shrieked. I
didn’t expect such a decisive response. I thought we would talk about it for a
few weeks and that would give me time to think it through. But she didn’t give
me the option of backing out. The next morning she was ready. She woke me up
before my alarm went off, already dressed with her helmet and backpack on. She
was ready to go. <o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7r3Oa5jU4_O25WZ7EocJmHxAgCDjvukO58spw16jpoqVHPGmpyyp7G87cfGK1cBGcvZLezsbyRUYQs0Amv5TWCzii37BWOI4R-QGIVqAh0EIUNrfkpEngnSTeoAcXuo8Y5UXLzAxzG-8/s1600/IMG_1538.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7r3Oa5jU4_O25WZ7EocJmHxAgCDjvukO58spw16jpoqVHPGmpyyp7G87cfGK1cBGcvZLezsbyRUYQs0Amv5TWCzii37BWOI4R-QGIVqAh0EIUNrfkpEngnSTeoAcXuo8Y5UXLzAxzG-8/s320/IMG_1538.JPG" width="240"></a></div>
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<span style="color: #222222; font-family: Arial, sans-serif; font-size: 12pt;">Her commute to summer camp is 2.8 miles one way. In New York City. During rush hour. In the summer. On many levels, that’s a very big deal for a very little kid. Most days she’s super psyched to ride and she does so without complaint, but not always. She gets tired. She gets hungry and thirsty. She gets sweaty. There’s a very steep hill that takes up about four blocks of the ride; on very hot days we have pushed our bikes up some or all of this stretch and on one particularly dismal morning I hung her bike from the handlebars of mine. I pushed them both up the hill myself and tried not to scream while she staggered along about twenty feet behind me, whining and moaning with every step. We laughed about that day later, but at the time I was pretty sure neither of us would survive it. We’ve gotten better.</span><span style="color: rgb(34, 34, 34); font-family: Arial, sans-serif; font-size: 12pt;"> We pack a snack, an extra rubber band for sweaty pony tails, a thermos of cool water. I got Bee her own bike lock and I taught her how to use the combination. And we try to have a good time.</span></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">I am fully aware that
biking in New York City can be dangerous, even for an adult on her own. So in addition to trying to keep it fun, I
talk a lot about safety. As we ride, we banter back
and forth. I like to hear her voice constantly so I know she’s engaged and
paying attention and close to me. </span><span style="color: #222222; font-family: Arial, sans-serif; font-size: 16px;">We talk about why I’m always going to say “Mind the people!” when we are on a busy street even though the hundredth time I did, she rolled her eyes and said “I </span><i style="color: #222222; font-family: Arial, sans-serif; font-size: 16px;">know</i><span style="color: #222222; font-family: Arial, sans-serif; font-size: 16px;"> to mind the people, Mama!” I explain that I trust her but that I don’t trust anyone else out on the street. One morning I told her to mind the cute little doggies within earshot of the woman walking them, and the woman turned and thanked me for doing so because her dogs were skittish and afraid of things like children and bikes. After that, she stopped complaining. </span><span style="color: #222222; font-family: Arial, sans-serif; font-size: 12pt;">We choose our route carefully, selecting flat, shady streets with wide sidewalks, avoiding streets that attract heavy foot traffic with schools, subway
entrances and stores. We know where the hills are, where the
construction is, where the parks are. I ride on the sidewalk with her, always
preferring to stay closer to the curb while she stays on the inside, away from the cars. We ride “double file” like that when we can, and single file when we
can’t. We avoid crazy thoroughfares, </span><span style="color: rgb(34, 34, 34); font-family: Arial, sans-serif; font-size: 12pt;">swapping them for </span><span style="color: rgb(34, 34, 34); font-family: Arial, sans-serif; font-size: 12pt;">corners with crossing guards and
quieter intersections that have clear visibility.</span></div>
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<br></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">When she realized with
some delight that she was now getting to cross the street – many streets in fact --
without having to hold my hand, I got the sense that we also needed a system.
So every single time we approach a corner, I tell her what our next move will be. No matter
what that is, the next thing out of my mouth is always “Ready?” and the only
response to that is “Ready!” When I hear that, I thank her or praise her in some way and we proceed. If she responds any other way, I stop and
check that she’s okay. <o:p></o:p></span></div>
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<br></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Once she didn’t say “Ready!” even though she was. To prove a point, I stopped short and she pedaled right into my bike. “But Maa-aam-aaah,” she wailed. “I <i>said</i> okay!” We talked
about why it was so important for her to have a consistent response. I told her
that hearing her call “Ready!” was my favorite thing in the world. <o:p></o:p></span></div>
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<br></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">She was incredulous.
“Even more than me telling you I love you?” she asked. <o:p></o:p></span></div>
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<br></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">I nodded. “Even
more than that. It is my job to make sure I do everything I
can to keep you safe. So when I ask if you’re ready to cross, please tell me
you’re ready. It's kind of like holding your hand. When I hear you say you're ready to cross the street, you’re telling me you’re with me, you’re safe and we’re on the
same page. Once I know that, <i>then</i> I
want to hear how much you love me!” <o:p></o:p></span></div>
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<span style="color: #222222; font-family: Arial, sans-serif; font-size: 16px;">I tell her that she needs to be looking ahead of her and everywhere else at the same time.</span><span style="color: #222222; font-family: Arial, sans-serif; font-size: 16px;"> </span><span style="color: #222222; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">I know that this little
creature would be defenseless against a bleary-eyed New York City cabbie finishing a fourteen-hour shift as she bikes determinedly across 125<sup>th</sup>
Street. So when I feel at all uneasy, I stop right in the middle of the busy avenue as she pedals across, knowing that turning cars will definitely see me before
they have the chance to ever knock into her. Maybe there’s no such thing as
truly safe bike riding in the city, but it is critical that we do our best to practice saf<i>er</i> riding. <o:p></o:p></span></div>
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<span style="color: #222222; font-family: Arial, sans-serif; font-size: 12pt;">I remember reading
once that parenting is a long process of letting go, starting with severing the
umbilical cord at birth and ending with the death of the parent. I think about
that process a lot: just about everything we as parents do is in some way preparing
our children for life on their own. Many of these little moments are
harder for me than they are for my kids and they have seared themselves into my
memory as milestones that I look back on with a mixture of nostalgia and relief
that we made it through. My first day back at work after maternity
leave with Bee. When Teeny weaned herself shortly after she turned two, and putting
her in a wheelchair on the school bus weeks before her third birthday.
Letting Bee go on her first sleepover. Explaining to Teeny as I did last night that at almost four,
she was big enough to fall asleep without Mama in her bed and letting her weep quietly
to herself for the longest ten or fifteen minutes I have experienced in years.
And making the decision to bike with Bee.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS8Kecp8mzB65YeAol6yQXiy_hqTwFaVOSU_oEZf13YRFNr4Ui34z6uUsC9DLO9qC2eLsSy1gpNJk0xpn6Nn_8-5f86evghCv-hmgaYWpsF3GyyTAC5ucKV16aZZnNHZyNY8nvhWtIDdM/s1600/IMG_1525.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS8Kecp8mzB65YeAol6yQXiy_hqTwFaVOSU_oEZf13YRFNr4Ui34z6uUsC9DLO9qC2eLsSy1gpNJk0xpn6Nn_8-5f86evghCv-hmgaYWpsF3GyyTAC5ucKV16aZZnNHZyNY8nvhWtIDdM/s320/IMG_1525.JPG" width="320"></a></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">I think we both really
enjoy our rides together, but the truth is that I would hold her hand as we
cross the street forever if I could. Part of me loves watching her grow into
her own person. I am very proud of who Bee is becoming, and at the same time, so much of me would still keep her little. I would not
necessarily choose to have this independent little human who just this morning
insisted on dyeing a permanent blue-black streak into her hair as I touched up
my grey roots. I looked at her as I wrapped tin foil around the streak and clipped it out of the way. She was wearing my high heeled wedges and her Elsa underwear. She’s tall now, and so lean.</span><span style="color: rgb(34, 34, 34); font-family: Arial, sans-serif; font-size: 12pt;"> Pierced ears, painted nails. About to start kindergarten. She swims</span><span style="color: rgb(34, 34, 34); font-family: Arial, sans-serif; font-size: 12pt;"> underwater with goggles and no floaties. Reads. Bops around to music on her own iPod. What's next? Sometimes I would keep her
little forever: a chunky baby snuggled into my chest in the wrap, dependent on
me for everything. Pushing Bee and her sister to become independent individuals
is sometimes more of a push for me than it is for them, and it is in
recognition of this that I choose to continue riding with her even though I
know that I can’t keep her 100% safe 100% of the time. Unless I keep her home
for the rest of her life, could I ever, really?</span></div>
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<span style="color: #222222; font-family: "Arial",sans-serif; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">She only has three
more days of summer camp. The new school she starts in September is 4.9 miles
from home and I’m not sure she’ll be able to do that kind of distance until
she’s a little bigger and her bike is a little better. Maybe she’ll want to try
it, or maybe after her three weeks of vacation she’ll decide that she would rather
take the train after all. For now, I just hope she wants to ride tomorrow too. <o:p></o:p></span></div>
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Unknownnoreply@blogger.com21tag:blogger.com,1999:blog-8497038950704433299.post-69174660276182597432015-07-02T22:44:00.000-04:002015-07-03T12:52:41.052-04:00Neurological vs neurotypical: a compare and contrast<span style="color: rgb(34, 34, 34); font-family: arial, sans-serif; font-size: small;">After I wrote my last </span><a href="http://www.teenyandthebee.com/2015/06/so-you-want-to-know-what-its-like.html" target="_blank" style="font-family: arial, sans-serif;">post</a><span style="color: rgb(34, 34, 34); font-family: arial, sans-serif; font-size: small;">, I kept thinking about how much harder it is for Teeny to do things that for Bee were easy. I thought about how much harder Teeny has to work and I thought about how much longer the road from point A to point B feels when it comes to her than it does for her sister. Here are 8 examples of what I mean.</span><br><div class="gmail_quote"><div dir="ltr">
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1. Infancy</div>
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Bee: She was a needy baby and only an easy one because I wore her everywhere and never put her down. She was clingy to me and I to her. She nursed day and night and was a chunky baby with a healthy appetite. Although the new mama in me worried constantly, she did everything she was supposed to do either early or right on schedule. She was easily entertained and I could soothe any fussy behavior with nursing, singing, or swaying. So I sang to her, walked with her, read to her constantly. I tried classes and workshops of all kinds, I got on neighborhood parenting listservs and I read every baby book I could get my hands on. I met a friend of mine with a baby Bee's age for weekly swims, walks and talks. I loved every second.</div>
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Teeny: A beautiful and delightful baby in her own way as well, she was very sleepy right from birth. She was slow to meet milestones; some she missed altogether. People told me not to question it, to relax and just get some rest; after all, if she was sleeping well I should be grateful! But I knew it wasn't right. I had to wake her up to nurse and as a result she lost a lot of weight in her first ten days of life. Within a few weeks, she developed sore spots in her armpits and in the creases between her legs from being so low tone and the doctor told me to use diaper cream on them. I joked about second baby syndrome with my friends and in some ways she had it -- I bathed her less, fussed less about the laundry and the messy house. I encouraged her to use a pacifier. I bought regular diapers and wipes instead of insisting on cloth. Inside I felt guilty because part of me knew she needed more than she was getting, but she seemed so happy that I had a hard time understanding what was going on. After months of hearing "Don't worry! Every baby develops at her own pace!" I swallowed my pride as a mother and began to plead with everyone I knew for help. And finally, someone whispered the words "early intervention," which meant nothing to me at the time, but I knew someone who knew someone who remembered a friend who worked with someone who went through the process and gave me a name to call. It took three weeks from that awful whisper to the moment I made the call and it took 45 days of testing and evaluations from that moment to recommendation for services and two months after that we were leaving the neurologist's office shell-shocked and gripping the piece of paper that said, essentially, Your Lives Change Today.</div>
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2. Preschool</div>
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Bee: We realized she was going to be ready for preschool before we were planning to send her. We found a gentle, loving school that had a very part-time program that we felt was the right fit for her so we applied, got in and wrote a check to secure the spot. She went to this play-based preschool for three years and we loved it. There was a flexible phase-in for everything and the curriculum was emergent. Their "day" in the twos class was two and a half hours three days a week and over the next two years, she worked up to a four hour day every day. Every day either Johnny or I dropped her off (in the car) and every day either Johnny or I picked her up (in the car). There were four teachers for a class of 22. Her class went to the play yard once a day and on Wednesdays she had music. The rest of the time she did art, dramatic play, circle, exploration and other things and absolutely everything she did was celebrated. Yet there was never even a question about whether this school would be right for Teeny. </div>
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Teeny: Depending on her birthday, the DOHMH may age a child out of Early Intervention before her third birthday, and that is what happened with Teeny. Because she was born in the fall, the DOH ended her services and transferred her to the DOE's CPSE, who determined that she was ready to commute on a school bus to and from a full day of preschool while she was still two, And because the DOE also determines whether a particular school is an appropriate setting for a particular child, we didn't get to choose where she went. Her bus picks her up anywhere between 8:10 and 8:15. We have three minutes to get her down there or the bus leaves without her and her commute is an hour or more each way. We aren't allowed on the bus to say goodbye and for safety reasons she isn't allowed to eat anything on the bus either. She's in school from the time she arrives -- around 9 or 9:15 -- until 2:15. During that time she is pulled out a dozen times per week for PT, OT, speech and for visits to another class. She has a special ed teacher, two assistant teachers, a full-time 1:1 paraprofessional for mobility and a social worker in addition to her therapists. Her schedule is so full that I don't even know when she has music and art although I know she has both once a week. She gets home between 3:30 and 4:00 every day unless we pick her up to take her directly to an after-school therapy and she is absolutely exhausted when she gets home. </div>
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3. After-school activities</div>
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Bee: Unless she has a playdate, one of her parents picks her up every single day. She has never had a babysitter who wasn't a family member or a family friend. She has weekly swim and ballet lessons and lots of unstructured play time to read, pretend, ride her bike, dress up, color or paint. </div>
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Teeny: Teeny has the busiest schedule of anyone I know, including adults. On most Mondays she has ballet, on most Tuesdays and Wednesdays she has swim and on Thursdays in spring and fall, she has hippotherapy way out in Brooklyn. This last one is so important that I actually take a half day off every single time she has a session so I can pick her up from school and take her in her wheelchair all the way out there and then get her home. For one single half-hour session, it takes us an hour and a half each way using accessible subway stations and then walking. On Fridays, her bus ride home takes significantly longer than on other days because of weekend traffic, so by the time she gets home she has maybe an hour or so of unstructured playtime with her sister before it's time for dinner and bath. On weekends we try to take her to family swim at the Y so she can exercise her legs. In June we got a month-long slot at a college's speech therapy clinic with a student so that meant getting her there twice a week on top of everything else. She also just got a mandate for two additional hours of physical therapy peer week outside of school and they took the place of the speech sessions that just ended. Playdates are a major undertaking although she loves them because her friends are scattered all over the city and many are not ready for drop-off. They're usually day long events that often turn into family affairs, which is great but means they are pretty few and far between. </div>
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4. Doctor visits</div>
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Bee: She goes once a year for a checkup and whenever she gets sick, which is practically never. This year she got caught up with all her vaccines until she's eleven, so her checkups will be even less involved. In the fall, she gets a flu mist. Once we were in a car accident and although I examined every inch of her body and believed inside and out that she didn't have so much as a scratch on her, I took her (and Teeny) to the ER just because I knew I would never forgive myself if I'd missed something (which I hadn't). She has never been to the doctor for any other reason. </div>
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Teeny: Teeny has a team consisting of a neurologist, physiatrist, developmental pediatrician and regular pediatrician. She also has an orthopedist, an orthotist and a geneticist and she has seen an ENT and an ophthalmologist. There's a handful of specialists around the country that I spend a fair amount of time chasing for information and we are setting up a series of evaluations with a cerebellar neurobiologist and his team. Over the years, I have called and interviewed a dozen or more therapists and specialists for every one that she sees. And then there's the paperwork. The evaluations. The progress reports. The forms. For every form or application, I need letters of support from all of her team and for every appointment, I need to explain her diagnoses and her needs and for every appointment I have to ask whether they take our insurance, if they are out of network, what the co-pay is, and whether they also take Medicaid, which is her secondary insurance. </div>
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5. Birthday parties</div>
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Bee: We sometimes ask if siblings are allowed just because without a babysitter it's sometimes necessary for us to bring both kids if we're going to bring one. Then we put it on the calendar, make sure they have a vegan treat packed for when the other kids have pizza and cake and go. </div>
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Teeny: We call the location to see if it's accessible and to determine if there are activities she can take part in, and whether she can keep her shoes on inside because she needs them to wear her braces. Only then do we ask about siblings, put it on the calendar, make sure we pack a vegan treat to eat and go.</div>
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6. Mornings</div>
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Bee: She wakes up usually before 6 and then gets into bed with me. She snuggles for maybe 30 seconds and then rolls on top of me, pulls my eyelids open, and bounces on me until getting up seems much more palatable than lying there with her harassing me for attention. One I'm up, I cherish the mornings with her one on one so I grin and bear the rough start, unless I absolutely cannot. Lately she seems to know this so she negotiates. "If you let me use my iPad, I'll let you sleep." Occasionally this is too good to pass up even though I know this means she is rotting her brain with episodes of <i>The Littlest Pet Shop</i> and <i>My Little Pony</i> and whatever other crap she can get her hands on.</div>
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Teeny: This kid is so tired from her busy days that she sleeps <i>late.</i> You know: mouth open, tousled hair. The kid is <i>out</i>. Usually I have to wake her so she doesn't miss her bus, and when she does finally wake up, it's slowly and sleepily. She calls to me and I snuggle her while she stretches, yawns, blinks and -- on good days -- murmurs "I didn't pee on myself! I'm dry!" (On not so good days she says mournfully, "I peed in my bed. I'm sorry." Luckily we have way more good days than not so good days.) </div>
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7. Clothes</div>
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Bee: It's very rare that Bee lets me pick anything out for her. She decides what she wears and despite my best efforts, her only criterion is, "do I look pretty?" Every day she asks this and every day I tell her she is beautiful no matter what she wears. She loves to deck herself out in princess dresses, makeup and the high heels that sit unused in my closet and doesn't understand why she can't dress that way for school. </div>
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Teeny: Her clothes have to be more utilitarian. She has to be able to crawl in her clothing, so dresses that are longer than mid-thigh are out. We have to think ahead about where she will be and whether there is linoleum, carpeting or wood floors, so that what she wears protects her knees. A carpet can rip up her knees and highly buffed floors can be dangerously slippery if she has to take off her shoes and braces for any reason. She has to be dressed to do physical therapy or ride a horse. She can only wear one type of special socks that are seamless and very long and each pair costs a fortune. She has only two pairs of shoes: both wide-width sneakers that fit over her braces. She can't wear flip-flops, sandals or Crocs in the summer and she can't wear boots in the winter. She can't play dress up in heels like her sister so she crawls around with them on her hands instead and while she will sometimes put on a princess dress or butterfly wings, it's so frustrating not to be able to crawl or cruise comfortably that she can't tolerate either for long. </div>
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8. Communication</div>
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Bee: She started to talk when she was less than a year old. Her first word was "cat." We never signed much with her even though it was very popular at the time because she picked up new words faster than we could learn the signs for them. The one sign she does know is the one for "I love you," which I taught to her so we could have our own silent, secret message to each other. We sign it to each other when we say goodbye at school or whenever I see her from across a room and can't call out to her. Sometimes I just sign it to her so she knows I'm thinking about her. When she was three her teachers told us she was delayed in pronouncing the hard "c" and hard "g" sounds correctly -- for example, she said "tar" instead of car and "doh" instead of "go" -- and I freaked out. A handful of speech sessions paid out of pocket got her nowhere so I fretted and worried until I pulled myself together had a reality check. This was not a problem. We pulled her from speech and decided we'd wait to see what happened with a little time. Sure enough, the issue resolved itself almost overnight. She's reading fairly well now and she likes to write letters, cards and stories. She is pretty expressive emotionally, too. </div>
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Teeny: Her communication is slowed significantly by her motor issues. Her first word was "art" and until she got easier to understand, we kept a spreadsheet with a list of words she could say with a transliteration of how each word sounded the way she said it and we shared it with her teachers, therapists and family members so they could try to understand her more clearly. Signing was so difficult for her that she never managed more than a handful of signs even though she understood many. The one sign she tries to use is "I love you," like her sister but it always prompts a mini OT session. This is because her middle and ring fingers don't bend by themselves, so she can't make the sign correctly. "Show me 'I love you,'" she says every single time and every single time I have to hold those two fingers down for her while she holds the others out and pulls her hand to her chest. "I love you," she beams when she gets it right. The same goes for holding up fingers to show how old she is. Only in the past month has she learned to show someone she is three, which she does by holding her index finger down with her thumb in a modified "OK" symbol. She can now show you four and five as well, and she is so proud of it. She is able to express herself well now and get all of her needs met, although she needs a lot of help. Even with speech three times per week in school and more outside when we can afford it, she has a hard time with narration, conversation, pronunciation. S</font><font color="#222222" face="arial, sans-serif" size="2">he struggles when she's frustrated or when we don't understand her. I usually understand her just fine but realize many other people may not. If I have trouble, she sighs like a teenager. "No, Mama," she corrects, and says it again with a harrumph. Understandably, she becomes increasingly frustrated as I point to things and try to guess what the hell she means. Oddly, she actually pronounces the hard "c" as in car and hard "g" as in good just fine.</font></div>
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Then there's the one thing that's the same no matter how you slice it, which is</div>
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1. Love</div>
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Bee and Teeny: In some ways I love them differently and in some ways I love them the same. Sometimes I say that Teeny is the best thing that ever happened to me and that's because in the way that Bee is the child I knew I always wanted, Teeny is the child I never knew I so desperately needed. They are both happy, bright, giggly, moody, emotional, affectionate, silly, loving, playful, creative, tenacious, curious and kind. They are sisters and best friends and Bee is a wonderful teacher and guide to the world's most hardworking student. I can't imagine one of them without the other and I can't imagine my life without them both. Together they make us a family.<br>
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Unknownnoreply@blogger.com7tag:blogger.com,1999:blog-8497038950704433299.post-82529559010004941042015-06-03T00:37:00.000-04:002015-06-03T01:15:37.419-04:00Vacation All I Ever Wanted, Vacation Have To Get Away<br>
It's a dark and stormy night and I'm nestled under a blanket on the couch in a tiny rented condo on the tip of Cape Cod. I can hear the rain <i>patpatpat</i> on the windowpanes and the wind is howling between the trees outside. As I type I realize I am living a childhood dream right at this very moment. I feel a little like Meg Murry from <i>A Wrinke In Time</i>, all grown up. My children are sleeping in the next room. My spouse is reading a book beside me. I have a cup of tea and a head full of ideas and as nature rages around me I am missing nothing but a big old dog at my feet to complete the visual. And I'm so happy.<br>
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This is our summer vacation and I'm in my happy place. I didn't always, but now I guard my family time as fiercely as I can. Four years in a row we've come here to get away and every single time I worry about whether it's the right choice. We have a lot keeping us home. For weeks, even months beforehand, I debate with myself about whether I can take the time from work. I also stress because <i>vacation</i> sounds like <i>luxury </i>and for our single income family trying to stay afloat in the most expensive city in the country, luxury is something we just do without. Since becoming parents, vacation travel has been a debate of can-we-really-afford-to-go-away versus can-we-really-afford-not-to. So we scrimp and save and we keep it simple. We go off season so it's half the price. We rent for a week or use airbnb and we cook at home. We fill our pockets with shells and rocks and buy little more than snacks and trinkets. It isn't about all the things to do and see and buy and eat. It's about relaxing in a pretty place together, away from work and school and the computer and the phone and the school bus and the bills and the appointments and the meetings and the millions of things we cram into every single day of regular life. This year the usual debate came to an abrupt end when someone just instructed me to go when I wavered. It's absolutely necessary, she said; we <i>need </i>this precious time together. Away. Just you four.</div>
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The thing I worry about the most, more than the finances or being away from work, more than Bee missing school, more than finding care for the cats, more than anything else, is pulling Teeny from her services.</div>
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She's been getting services for three years now and each time she misses anything, I get nervous. DOE funded services in CPSE are a precious commodity and even one missed session feels like a terrible loss to me. The DOE worries about this too. They want to know that we take her education and related services seriously, probably because they foot the hefty bill. Teeny has a 12-month IEP which means that the DOE feels she is at risk of regression if she is without services for any length of time. In fact, we were told that if she had more than five consecutive unexcused absences, the school would have to report us and her spot could be given to someone else. Knowing this and knowing that she needs those services desperately, I fear that I am being selfish by pulling her out to bring her here, where for a week she has not worn her braces, used her walker, sat in her wheelchair, strung beads, worked with play-doh or done any of the many things she does painstakingly every single day.</div>
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What I forget is that children need time to connect the things they learn in the therapy gym and speech lab to real life. Two years ago in this town, she crawled up a flight of stairs for the first time by herself. She was five steps up when we noticed. Last year, she played tentatively in the sand with her sister, feeling the strange texture between her fingers and toes with curiosity instead of fear. And this year she has simply taken off. It's like the real world is one big OT, PT and speech session in which she has finally put together all the things she's been learning separately. </div>
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This week she slung an arm casually around my neck as she nestled into my chest, semi-strapped into an Ergo she outgrew two years ago. She told me when her legs hurt and she needed me to adjust how I carried her, and when they felt fine. We chatted about all the things we saw as we walked along the beach. Together we bent down together so she could pick up dozens of rocks off the sand and toss them into the water. She dipped her fingers and toes in the cold water and puzzled over the way the salt left her feeling sticky and damp. On a hot day, the girls buried themselves up to the waist in the sand. </div>
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She rode in her sister's lap in the stroller, the two of them snuggling and cuddling and giggling like only sisters can. They made up songs together that she not only remembered but sang to herself for days. She held her pee and poop "like big girl!" and used unfamiliar bathrooms all over town, staying almost completely dry all week. She had unstructured time in a wonderful playroom in the town library, had time to color with crayons, markers and pens of different sizes and widths on a big roll of easel paper we taped to the living room floor and she mostly listened as I read an entire 255-page book aloud, one chapter at a time. </div><div><br></div>
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While Johnny and I snuggled on the couch reading, she played with letter-writing apps on her iPad that strengthen her fingers, coordination and pre-literacy skills. She has eaten probably hundreds of French fries and drank numerous fancy green smoothies. She allowed her sister to give her sixteen temporary Frozen-themed tattoos, making her look like one bad-ass three year old. She cruised along tables, chairs, benches and other pieces of furniture or structures using only one hand to steady herself, repeatedly refusing my light but concerned touch on her back or bottom to keep her steady. She actually <i>walked,</i> probably 20 or so barefoot paces down Commercial Street, pushing the stroller weighted down by her big sister. </div>
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She has a long list of landmarks she looks for as we walk through the town's main drag. "Let's go see fishie!" she'd say, knowing we were a few blocks from the bench in the center of town with the big metal fish decoration on it. "We almost there to fishie!" That fish, whose engraved letters are perfectly sized for little fingers to trace one by one as she murmurs P-R-O-V-I-N-C-E-T-O-W-N, is a favorite of mine too. She also loves the froggy in the doorway of a local shop, taller than she is, with arms outstretched and waiting for her hug every time we pass it. The ice cream store. The rainbow pinwheels. The puppy on the window of the coffee shop. The beach and its dozen or more access points up and down the town. The enormous anchor near the pier: our number one destination every time we leave the house because I love how it appears smaller and smaller as the girls get bigger. </div>
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And boy has she talked. Yesterday she looked out the window and casually uttered the longest sentence she's ever said. "I want to go for walk and get ice cream," she announced. "But," she added, pointing outside, "it's raining." I marveled at this and realized she's been talking this way all week. This past Sunday was Johnny's birthday and all day long she announced it to anyone who would listen. "Today my dada birthday!" she shouted again and again. She took my cheeks in her hands and made me look at her. "It Dada's birthday!" she said seriously. "Soon my birthday too!" she added. Not until September, I reminder her. "September," she repeated. "That's soon." We've been having actual conversations that go beyond singing happy birthday or needing to pee or wanting a cookie. We talk about all the things we have to do and the order in which we'll do them. Like today in the town library, she crawled into the bathroom with me at her heels and instead of letting me get her up on the seat, she sat on the stool and said "First, you pee. And then, I go pee. And then Daddy go pee. And then Bee." She counted us off on her fingers as she spoke. In a coffee shop, a stranger asked how old she was. She surprised me by answering "almost four," instead of three. These are complex, sequential thoughts that even two weeks ago she couldn't articulate. Her language is suddenly peppered with colloquialisms which make me chuckle. I asked her if she wanted pasta for dinner. "Ummmm," she deliberated, "I think, nope." And then a second later, she reconsidered. "I think, yep." Normally sounding like an Eastern European immigrant, she began to use pronouns, articles and other words to more fully form her sentences this week. "That's she toast," she tried, referring to her sister's breakfast. And she must have said "I want to sit your lap," six million times this week, instead of last week's "I want sit lap." </div>
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We don't use sign language in our family because her speech therapists feel she can articulate well enough without it but I taught both her and her sister the sign for "I love you" so we can have a secret way of communicating the sentiment when we are somehow out of earshot or in need of some extra love. Her fingers, so weak and unable to function independently of their neighbors, have not been able to sign this back to me but this week I caught her trying when I wasn't looking, holding her left middle and ring fingers down with her right hand, while she whispered "I love you," over and over to herself. How cool is that?</div>
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<div>Best of all, while there have been some tears this week, I have noticed that her ability to self-soothe is finally emerging and getting stronger. Multiple times, she was able to stop crying long enough able to express frustration, tiredness, pain or hunger so that we could help her solve her problems. She was able to calm herself sufficiently enough to listen to our questions and tell us when she wanted to play longer at something, stop playing something, stay somewhere, leave somewhere, eat more, eat less, walk, crawl, pee, poop, get ice or a band-aid for a boo-boo or just have a hug or a kiss from mama. </div>
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Being around her has been like hearing a loud, week-long click. And for that reason more than any other, I am sad to leave this place. Tomorrow we go back to the world we left for one glorious week; back to the work I already miss, the preschool Bee is about to graduate from, the therapies Teeny needs so desperately. But we'll all go back a little different than when we left.</div>
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Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8497038950704433299.post-65787832685840152262015-05-31T21:53:00.001-04:002015-05-31T22:03:30.946-04:00Motherlode article!<br />
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Hey, y'all! My latest blog post is in the <a href="http://mobile.nytimes.com/blogs/parenting/2015/05/31/a-special-needs-parent-against-my-will-learning-my-own-adaptive-lesson/?_r=0&referrer" target="_blank">Motherlode</a> blog of The New York Times!Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8497038950704433299.post-17395996169058702492015-05-06T12:03:00.000-04:002015-05-07T01:29:04.378-04:0010 things Johnny loves about me<span style="background-color: white; color: #141823; font-family: helvetica, arial, 'lucida grande', sans-serif; font-size: 14px; line-height: 19.3199996948242px;">Yesterday Johnny and I made a deal to each write a list of ten things we liked about the other. I followed directions and wrote a list. </span><span style="color: #141823; font-family: helvetica, arial, lucida grande, sans-serif;"><span style="font-size: 14px; line-height: 19.3199996948242px;">He paid no attention to the rules and wrote me the most amazingly</span></span><span style="background-color: white; color: #141823; font-family: helvetica, arial, 'lucida grande', sans-serif; font-size: 14px; line-height: 19.3199996948242px;"> positive, cheerleading, confidence-boosting love letter I have ever received. It's SO good to feel loved by my favorite person on earth. I needed it. And here it is:</span><br />
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<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8000001907349px;">The things I love about you. </span><br />
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Your intelligence is extremely attractive and I'm always drawn to it. I always look forward to a good conversation with you. I've learned so much from you and I retain more and more everyday. </div>
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Your drive. You get shit done. You have no idea how much I admire you for this. You wake up running. And because of your overzealous drive, you're pushy with me. Which is great otherwise I'd move through life in slow motion and do nothing.</div>
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You are an amazing mother. The girls have the perfect role model. I love how they adore you and cling to you. Well... I wish they'd cling a bit less for your sake. ;) </div>
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The way you provide for and protect our family is fierce and infallible. You are our true source of strength and it amazes me to watch you work it.</div>
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Traveling with you and everything it entails. We work really well together this way. The car rides, walks, conversations, coffee, spanning time together, everything. </div>
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You're an amazing writer. I love that you write about our family. The charismatic and elegant way you weave words together makes anything you write an easy read. </div>
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Your stunning beauty stops me dead in my tracks. When your eyes catch me, they lock mine in a timeless embrace. I could look at you forever. Your body shape and height fit so perfectly with mine. When we hug, it feels so perfect. When we.... ;)</div>
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Your smell. Your breath, your neck, your perfume mixed with you, your.... all of you is intoxicating.</div>
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I love your taste in music. Watching you dance with a huge smile to a favorite song or singing all the lyrics you have stocked in that wonderful mind of yours. It makes me smile every time.</div>
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That you're vegan and compassionate towards other humans no matter how annoying they are. I have a lot to learn here and I'm trying. I swear.</div>
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I fucking love you!!!!!</div>
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8497038950704433299.post-7284201468236156952015-04-23T23:38:00.001-04:002015-04-24T12:54:38.891-04:00Sticks and Stones<br />
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Last week, someone called Teeny the r-word. </div>
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I wasn't there for it, but hearing about it from Johnny felt like a kick in the stomach. He was taking the girls to the Y for their swim class when it happened. On our street. On our <i>block</i>. Where we walk a hundred times a day. There was a group of teenagers leaving the playground that my family was walking past. It went something like this: </div>
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"Look at that girl in the stroller. She looks fucking retarded."</div>
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"Dude, she probably <i>is</i> retarded, just look at her father."</div>
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"That thing behind the stroller? Oh shit, that's a <i>man</i>?"</div>
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"Look at that fuckin' faggot. Do you see what he's wearing?" </div>
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Blissfully, neither child noticed anything because Johnny stayed calm and didn't acknowledge them. He just walked them past the group and to the Y. Then he called me. And a million things went through my head at once.</div>
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First, I tried to make Johnny feel better. I tried to make it seem not so bad, like it was no big deal and he should let go of his feelings. At the same time, I thought it was sort of ironic that not four hours earlier, I had posted this video on Facebook:</div>
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This video validates the power of words and why words like the r-word are never okay. (Also, I just loved Paul!) I scrolled back down my page and watched it again and I cried thinking about all the people in the world who are marginalized for some real or perceived reason and have to suffer the indignity of being disrespected or mistreated. I cried thinking about my own child who will someday have to find a way to tell mean kids and adults to go fuck themselves, that she is as capable as anyone else. I cried thinking of the times she has already said "I can't" when I encourage her to do something by herself that might be really hard. </div>
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Then I got angry. I thought about all the times Johnny or I have been called names and we'd never spoken up for ourselves because we feared for our safety. Johnny's been called a fag a million times. Lots of times when we walk down the street together, men catcall to us "ladies." Cashiers and customer service reps call him "ma'am." I have been called a dyke. A poser, a loser. Freak. Walking past the gutter punks on the Lower East Side back in the 80s and 90s, they'd always catcall at me. "Oh my <i>GOTH</i>!" they'd howl. We have been teased for our clothes, our music, our hair, our shoes, his accent, my last name, my being Jewish, our economic statuses, even our veganism. At the awful summer camp I was forced to go to for ten years because my mother worked there (and therefore I went free), I got made fun of for my area code (really!) and for living in an apartment instead of a house. I was tormented when I was little just because there always has to be someone and I was an easy target. The kids made me cry and because I always cried, they tormented me more. After a while I stopped saying anything to the kids who picked on me and cried alone instead. But the pain didn't go away and by the time I was 12, I had stopped crying. I'd learned to take it out on myself. Eventually, I really believed I deserved their hate and that I deserved to be punished. The ACT UP activists were right. Silence really does = death. </div>
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I cried because I don't want my daughters to learn that kind of self-harming behavior. I cried for my younger self, for not feeling like I'd had a support system to help me get though my adolescence and early adulthood. I experienced rage and depression and twice I attempted to take my own life because I felt so alone. I also cried because I felt compassion for those teenagers, growing up without being taught to love and respect others. I felt sad that they probably go home to families who use words like that all the time. They probably thought they were being funny or cool or maybe they just didn't think at all. I felt sorry for them because I was an unhappy teenager too and I remember very clearly what that felt like. I had hated the world. I had hated my life. I know there were things I did and said when I was with my friends that hurt people I didn't even know, maybe for no other reason than I was trying to impress some kid so they wouldn't make fun of me instead. I cried because as I remembered my own adolescent behavior, I felt shame for judging these kids -- and without ever having seen them! I made assumptions about them based on what they said and where they were and I hated them for doing something that 25 years ago I was probably doing too. </div>
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So I told everyone I knew about what happened. I shared on Facebook. I texted friends. I told coworkers. I wanted to expose this dark thing to the light, to diminish its power in whatever way I could. Turns out everyone I know has a story. Most people I know are or feel marginalized in some way, and many in multiple ways. The world has become a much more tolerant place than it was even very recently but we have a lot of work to do before I am convinced that we are really there. This may have been the first time Teeny was called this awful name but it won't be the last. As her mom, I want to give her all the tools she will need to teach the haters a thing or two. But the truth is that I don't have them. I am still a crybaby. Words still really hurt.</div>
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I know she is loved. I know she is growing up in a family that embraces difference and diversity. I know she will have good days and bad days and that every day she will come home to parents and a sister who will listen and be there for her consistently and lovingly. But in the face of cruelty, we will have to trust her to find her own way. I wish I could package this up as a teachable moment, but it's too painful. Instead, it just has to suck. I hate that I look over my shoulder every time I pass the playground on our street, wondering if the teenagers hanging out by the baby swings are the ones that accosted my family.</div>
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We've had some really wonderful days since then. Teeny had and loved her first hippotherapy session. We went to the ballet at Lincoln Center and saw Cinderella. We played in the park in beautiful sunny weather. The girls got cookies and smoothies at Peacefood. We bought them new sneakers for spring and when they got haircuts they left with pink balloons. And yet it lingers. Its ugliness, pervasive. If I had a nickel for every time I heard as a kid that sticks and stones can break my bones but names will never hurt me, I'd be a millionaire. I didn't believe it then and I sure as hell don't believe it now. It's in the back of my mind. Etched onto the insides of my eyelids. I can hear the word in my ears when there is quiet. It makes me look at my daughter differently. It makes me whisper the question to myself: <i>Well, </i>is<i> she</i>? </div>
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A mom I know of a kid in Teeny's class shared a story with me. She said that she overheard a little boy on the playground ask his dad "What's wrong with that girl?" The dad said, "There's nothing wrong with<i> her</i>. What's wrong with <i>you</i>?" I loved that and it stuck with me. I know there's nothing <i>wrong</i> with Teeny. She's perfectly <i>right</i> just the way she is. What could be wrong about someone who makes me -- and so many other people -- so happy? But what's wrong with <i>me</i> that I'm still struggling a week after this three-second incident? What am I so afraid of? I accept her and love her and get so much out of knowing her just the way she is. Why can't I accept that other people might not? I say I don't care what other people think. So why does it hurt so much? What's wrong with <i>me</i>?<br />
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Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-8497038950704433299.post-45541750958825379822015-03-15T22:46:00.000-04:002015-03-15T23:45:44.058-04:00Next Steps, or, Staying Where Their Feet Are<div style="color: #222222; font-family: arial, sans-serif; font-size: small;">
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<span style="background-color: rgba(255, 255, 255, 0);">I am sometimes amused when I think about how different my life is now than it was twenty, ten, even five years ago. Most recently and not so amusingly, I can't believe that going through the New York City kindergarten application process for Bee took six full months of my life and more stress than I can describe. I realized recently how much of the rest of my life I'd put on hold to go through it all and just how absurd it all was. I was explaining the whole thing to a relative of mine and the story coming out of my mouth sounded crazy. Absolutely crazy! Even as I'm typing this, I am shaking my head. It's so unbelievably stupid. Was that stressed out person really me? </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">I've written about some of it already <a href="http://www.teenyandthebee.com/2014/10/this-ones-nail-biter-guys.html" target="_blank">here</a> and <a href="http://www.teenyandthebee.com/2014/11/more-on-process.html" target="_blank">here</a>. If you read that, you already know it all started in earnest in the middle of last August. Between then and early last month, Johnny and I read two books on private kindergartens; researched thirty-seven private schools and every single public school on the island of Manhattan; </span><span style="background-color: rgba(255, 255, 255, 0);">toured fifteen private schools and four public schools; went to fourteen open houses and thirteen interviews; declined dozens of invitations to fireside chats, coffee with the headmistresses, diversity evenings, prospective parent Q&As and so on. Throughout the process we elected to withdraw our applications from four schools and didn't make it to round two of the very intense application process of another. I </span><span style="background-color: rgba(255, 255, 255, 0);">wrote twelve versions of a very long essay documenting what I thought our then four-year-old would need in a school and why; paid fifteen different fees ranging from $40 to $100; brought Bee on fourteen school playdates or interviews and I attended one workshop on financial aid. I met with our preschool director half a dozen times and called, emailed and texted her at weird hours when I couldn't get to the school to see her in person. I asked close friends for letters of recommendation, parents of my kids' friends for playdates at strange hours so we could be across town for early morning interviews,</span><span style="background-color: rgba(255, 255, 255, 0);"> and I interrogated dozens of friends, colleagues, parents of my kids' classmates and family members for information about schools they or their children attend or attended and about schools they knew anything at all about. I emailed with and spoke to perfect strangers who were friends of friends of friends who had children in schools I'd read good things about. We read hundreds of web pages, rehearsed interview questions and wrote more than a dozen handwritten thank you notes. I spent hours and hours collecting copies of tax returns and finance forms, filling in bubbles and writing short answer questions and essays about why my family's financial situation is unique because of having a child with special neurological needs.</span><span style="background-color: rgba(255, 255, 255, 0);"> </span><span style="background-color: rgba(255, 255, 255, 0);">With guilt and trepidation I subjected my four-year-old to six weeks of practicing with photocopies of patterns and sequences in fifteen minute increments to prepare for</span> three rounds of testing.<span style="background-color: rgba(255, 255, 255, 0);"> </span><span style="background-color: rgba(255, 255, 255, 0);">We had to listen to "feedback" from admissions directors told to us second hand via our preschool director, some very positive, some less so. We had to hear that perfect strangers thought this or that about our daughter based on a single, often awkward forty-five minute interaction with a very young and increasingly shy child who had not been prepared for these sessions beyond being bribed with a cookie or a balloon. In short, I let the process take over our family and almost every shred of dignity I had. </span><span style="background-color: rgba(255, 255, 255, 0);">The one thing I didn't do was lie about my address to get her into a public school in a better district, but I wondered at points why I didn't since the whole entire process was unethical and inhumane and it seems that's what everyone else does anyway. </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">We did all that. And then, we waited. </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">February sixth was Decision Day. The night before, I was in LA, working late in my hotel room. Emails started coming in at the stroke of midnight EST and with the very first one, I just knew I was in for the first all-nighter since before having kids. I was following a thread on the worst message board I could possibly be reading, one that was populated by over-privileged white stay-at-home mothers and, apparently, trolls.The thread listed each Manhattan private school by name and invited all the message board participants to comment whether they'd been accepted, wait listed or rejected, whether they applied for financial aid and whether they were of color or in some other way "diverse." I refreshed and refreshed and watched comments slowly post to the thread. I was mildly entertained by the term "troll," imagining some Shrek look-alike or worse announcing that her precious little boo-boo had been accepted at a top tier school that my kid would never have a chance at. I hated myself for feeling the awful fear of missing out, knowing full well that sleep would serve me better than learning who of New York City's self-proclaimed elite had been accepted where, but I couldn't help it. If they reported acceptances from schools I hadn't yet heard from, I surmised, it must mean that we had been rejected. I kept comparing myself to these anonymous posters, hating them and hating myself for getting all caught up in the drama.</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">Hours later, I was exhausted and in a tailspin. I had to work that day but I hadn't slept. I was only half-checked into the things I was doing because I kept refreshing my email and that awful website. People were talking to me and I was barely hearing them. "Huh?" I said as I moved through my day. "What? Oh, sorry."</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">Refresh, refresh. Text. Email. Call. Refresh again. And for what? Of the twelve schools we were waiting to hear from, i</span><span style="background-color: rgba(255, 255, 255, 0);">n the end she was rejected from one and wait listed at 11. The rejection was from a school I didn't like anyway so the sting of rejection wasn't a sharp one (though I force myself to admit here that even now I can't tell this story without adding "But I didn't like them either, so it didn't matter!" which is pretty lame). Rejections -- even from snobby Upper East Side all girls' schools that you were warned you would hate -- sting. But wait lists really hurt people like me who just want to know already and can't stand the idea of waiting another second.</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">So I spent that entire weekend distracted, irritated, Googling <i>do NYC kindergarten wait lists move</i>, refreshing that awful thread on that awful message board and generally feeling shame about the whole thing. I picked apart the wording in each of the wait list letters to determine which were polite declines and which were real wait lists. Following advice from Bee's preschool director, I composed individual emails to each of the schools thanking them and letting them know we were still interested, with slightly longer and more personal and detailed notes to the schools whose wait lists seemed genuine. I couldn't relax, couldn't sleep. When well meaning f</span>riends asked what news we had, I held up a hand and shook my head. I really did not want to talk about it.</div>
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<span style="background-color: rgba(255, 255, 255, 0);">So then we waited some more. </span></div>
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Those few days after "Decision Day" were among the longest in my life. (And yes, I know how ridiculously dramatic that sounds. We're talking about kindergarten, after all.) On Monday, I had to hear more feedback via our preschool director. She knew the state I was in, so she was very kind, but there was just no sweetening some of what she had to say. Here are the awful things I was told:</div>
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-wait list X, Y and Z were polite declines or nods to the weak connections we'd tried to work </div>
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-wait lists A, B and C were genuine and she knew it because they'd told her how much they loved Bee, but:</div>
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-it's about money,</div>
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-it's about money,</div>
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-it's about money and</div>
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-schools need "visual diversity" first so that's where they start with their financial aid. </div>
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What I heard in all of that was that a lot of the schools liked my kid and liked us, but we were not rich enough or poor enough, white enough or diverse enough. The comment about visual diversity was so ballsy that I couldn't believe an admissions director actually said it. It in one nasty phrase essentially summed up why this process was so incredibly fucked up for us and for many others. On top of not offering "visual diversity," we were not legacies, not siblings, not staff. We had no connections, no in roads. And on top of it, we couldn't pay full price so we just had to keep trying to make an impression somehow and hope someone liked us enough to take a chance (and that the "visual diversity" they offered their scholarship money to the first time got accepted somewhere they liked better). So the chips were down. But I am a pretty determined person and the game wasn't up until the game was up. I had until Friday.</div>
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So on Tuesday, I started calling the schools we had gotten the most positive feedback from. I reminded them of the amazing things they told our preschool director they'd seen in my kid and I told them -- each and every one of them -- that we would jump if they offered us a spot. In short, I was kissing admissions ass. </div>
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And slowly, the offers came in. In the end we got three. And one of them we really liked, and snagged. And then, on Bee's fifth birthday, after I'd dropped off a check so big I needed help from my parents to write, it was over. <br />
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(I am leaving out the details of the process by which I also applied to twelve public schools. We won't hear about that or the last round of testing we did for another month or more. The likelihood of a favorable outcome from one of those is slim to none, so I'm not giving any of it any more space in my brain, if there's any left.)</div>
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The really scary part is that now we get to do it all over again. Teeny is nineteen and a half months younger than Bee, but because her current school is a DOE funded school, she will age out of preschool when she's four, not five. She will enter kindergarten one year behind Bee, when really, it should be two. Her school does not do "pendancy," which is a thing you sue someone for or file for somewhere -- although I have not yet found a single school that takes it -- to allow your young-ish child to do an extra year of preschool or two years of kindergarten. She is a late September birthday and she's really, really little. She needs extra time for everything. I think one of the kindest things a school could do for her is let her stay in preschool for another year. But what I think doesn't matter. </div>
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How do I know that? Because in addition to all that crap I mentioned we did in that six month period, I also went to three seminars on the Turning Five process (what they call the kindergarten process when you have an IEP), one special needs school fair and one school tour. I had to cancel two more because they conflicted with school tours and interviews we had for Bee. I read through four different lists of special needs schools in the New York area, filled a notebook with notes on almost four dozen schools' websites and I spoke to parents of kids with IEPs at several private and one public school. I asked our doctors and other parents about the neuropsychological evaluation process. I interviewed several parents about having to retain a special needs attorney. I added all of these expenses up in my head multiple times and freaked out silently and, sadly, not so silently. How do people do this? </div>
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And then I was totally overloaded and couldn't do another thing.</div>
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There are still parents I haven't spoken to. Friends of friends who went out of their way to connect me with people at Bee's new school, people who love it, people who hate it. There are tours I didn't make it to, calls I haven't returned, emails still stuck in my drafts folder. I have drafts of our potential schedule for next year, as Bee's school day starts at precisely the same time Teeny's bus is supposed to pick her up and Bee's school day ends at the precise time Teeny's bus drops her off. We are going to have to figure out how to get Johnny to be in two places at once or I am going to have to pick one of them up every single day. Every day? I can pull off a lot of magic, but that may be more magic than I can manage. Oh I am so burned out. I have a few more months to get through before we have to deal with that, so for now, I'm forgetting about it. Crossing that bridge when we get there and all of that.</div>
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Right now I want my kids to be kids. Preschoolers. Little beings without a care in the world. And I want to be the mama who is present and who isn't thinking about next year. I want to be where my feet are. Better yet, I want to be where their feet are. And where are their feet? We are in the midst of a particularly lively birthday party season and we go from party to party it seems. Their feet are in ball pits, swinging from chairs where they sit painting ceramics with friends, dancing like crazy to "Karma Chameleon," "Girls Just Wanna Have Fun," and "I Wanna Dance With Somebody," jumping up and down while they're shouting the adorably misheard "focus focus!" at a magic show, carrying them from snack table to snack table. </div>
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Bee's feet are usually in her "fancy boots," tap shoes or ballet slippers. (Because they are rarely if ever in heels, even for dress up, she likes to point out every single pair of high heels she sees anywhere ever. The lady sitting beside her on the subway. The businesswoman clop clop clopping down the sidewalk trying to act like she can't hear as Bee hisses, "Mama! Look at her high heels!" Cyndi Lauper. Elsa. The way Bee tells it, everyone wears high heels except her and that just isn't fair, Mama!) Her feet have precious and sloppy pink, blue or glittery toenails because she refuses to let me help her with her home pedicure. They are "an eleven size," as she tells anyone who will listen, because that sounds "old" to her. </div>
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Teeny's feet are still strapped into old braces that no longer fit her (which reminds me to call the orthotist again tomorrow to see where her new ones are already). They too have pink toenails, also sloppy, not from her painting them herself but rather from her impatience and inability to wait for them to dry once I've painted them for her. They are often dangling from where she sits atop the "big potty," Frozen-themed underwear around her ankles, pink toes peeking out. Lately she gets it right about 85% of the time. Her feet hold her up, some days with more strength than others.<br />
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At this afternoon's birthday party, her feet helped her crawl through a bouncy house and up the ladder to the slide down, wriggle through a foam ball pit, and jump through a gymnastic obstacle course. As soon as I saw the party was at this kind of physically challenging place my feet tried to turn us around and right back out the door we'd come in. I thought Teeny would not be able to do it and I was cursing myself for not calling ahead, cursing the birthday girl's parents for inviting a physically challenged kid to a place like that. But Teeny would not have it. "I want go in!" she pointed. And some parent I didn't know pulled their kid over to us, calling out "Hi Teeny! That's Teeny! Can you say hi to Teeny?" So we went in.</div>
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The birthday girl's mom turned out to be an occupational therapist who knew exactly what she was doing when she picked the place. Half the kids were also from Teeny's school and had issues of their own. The mom was very attentive and well aware of everyone's needs. Apart from the one employee whose teeth I wanted to knock in when she instructed the "kids with limitations" to stay over there, the staff members helped Teeny reach and spotted her when she insisted on doing what the other kids were doing. Limitations, my ass. That kid mastered every single thing she tried and held her own next to neurotypical kids, able bodied kids and much bigger kids. And she had a blast. Even as we were leaving, she was pointing to the uneven bars over the ball pits and shouting "I want to do that more!" </div>
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So you see, her feet are in a better place than mine. Bee's too. My feet will have me running all over the place and I need to slow it all down. I have a few more months until the second round of kindergarten ridiculousness heats up. For now I'm calling it quits. I'm not going to worry about the future, at least not today. I have lots going on right here. </div>
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Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8497038950704433299.post-24131377095405517142015-01-31T21:21:00.001-05:002015-02-19T14:37:40.077-05:00I AM adopted<!--[if gte mso 9]><xml>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%; mso-fareast-font-family: "Times New Roman";">I am an
introvert by nature, and as a blogger I am also an oversharer. It's interesting
to be the kind of person who would rather write something personal for
potentially hundreds of people --- many of whom I don't know ---- to read on
the internet than to actually pick up the phone and call someone I really love
and tell them something I truly want them to know. I wrote about it a while ago <a href="http://www.teenyandthebee.com/2013/02/on-writing-and-thanking-and-writing.html" target="_blank">here</a>. It sort of amuses me in theory but in practice it’s pretty damn
uncomfortable and I know I end up alienating people because a lot of the time I squirm at the thought of having a heart-to-heart. I read in a book
about introverts that this is not uncommon behavior but I still think it’s
weird and ultimately, it sucks. I never felt that close to any one person in my whole life but I always wanted to be. I wanted to have a best
friend I was inseparable from, the kind I could tell everything to, or a twin sister who spoke the same secret language I did. I wanted to find my people, the ones I could <i>kythe</i> with like Meg, Calvin and Charles Wallace in the Madeleine L'Engle books I treasured as a kid. When I was little my friends and I
would talk about how we’d be best friends forever, go to the same college, be
in each others’ weddings and be aunts to each others’ kids. I still want that super close sister like the Braverman siblings on <i>Parenthood</i> or a bestie who lives down the hall from me. But then I would have to TALK to them all the time, wouldn't I? </span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%; mso-fareast-font-family: "Times New Roman";"><br /></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">One of the things I have written a lot about is my adoption.
I talk a lot about it too, now that I am comfortable with it. I wasn’t always; I
was raised to think of adoption as a private family matter. And in some ways it
is. When I was a child I suppose talking about my adoption would have raised
more questions about my parents than it did me. People should know better than
to ask others about their fertility and conception issues but they do anyway. When it
comes to questions about how I ended up surrendered at birth and becoming a
part of my family, those are not mine to answer here; how my parents came to be
my parents is not my story to tell. But as an adult adoptee, I don't
necessarily agree with adoption being a private family matter anymore because
it is a huge part of my identity as a human being, as a daughter and now also
as a mother. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 12.0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">I remember once reading in a book about adoption that there
is a difference between saying “I <i style="mso-bidi-font-style: normal;">was </i>adopted”
and “I <i style="mso-bidi-font-style: normal;">am</i> adopted.” The book
advocated for use of the former because, the author said, it identified the
adoption as a singular event. Using the latter instead made adoption part of
one’s identity. At the time I bought into that and I still say most of the time that
“I was adopted as a baby.” But the truth is that I <i style="mso-bidi-font-style: normal;">am</i> adopted. Adoption is not an isolated, singular incident. It’s
something I am every single day. I recently read <a href="http://www.washingtonpost.com/lifestyle/magazine/please-dont-tell-me-i-was-lucky-to-be-adopted/2014/12/31/9e9e9472-6f48-11e4-ad12-3734c461eab6_story.html" target="_blank">this article</a> and was surprised
to see so much of my secret self in this woman’s words. Many adoptees live with
a pain that other people can’t understand. As an adult, sharing and writing
about my experiences helps me to heal.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 12.0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Though I was able to "pass" when I was growing up,
the truth is that I don't look like my parents at all and I don't act like them
either. When I was growing up, we struggled hard to understand each other. It
was not easy. I love my mother and father very, very much. They are my parents.
I get defensive of them when well-intentioned people ask me if I know my “real”
parents; of course I do. And as I get older I appreciate my mom and dad more
and more and have a great deal of respect for their journey as parents. Best of
all, we have a better relationship now than we ever did. But it wasn’t easy for
any of us for a long, long time. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 12.0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">My parents may not have wanted to talk about adoption, but
they were always as open with me about it and answered my questions as best
they could. They told me that the adoption agency said that honesty and
openness was the best way to approach things, and they took that to heart. So
there was no finding papers hidden away in a drawer, no hushed conversation I
accidentally overheard. I always knew that I was adopted, and I always knew
everything they knew. Unfortunately, they knew very little, because my
adoption, like most in New York in the 1970s, was completely closed. So really,
there wasn't a whole lot to talk about. And that suited them – and me – for a
long time.<br />
<br />
Even though I have internalized and still grapple with the concept of my
adoption being a private family matter, I have written publicly <a href="http://www.teenyandthebee.com/2011/05/hold-for-last-time-then-slip-away.html" target="_blank">here</a> and <a href="http://www.teenyandthebee.com/2011/12/what-we-do-isnt-secret-anymore.html" target="_blank">here</a> and elsewhere
about my experience as an adoptee, especially after my birth mother died three
and a half years ago. The love I have
for her is unique for me. Hugging her was unlike hugging anyone else in the
world. She <i>smelled </i>familiar in a way no one else has. I felt like I fit into her arms in a way I’ve
never fit anywhere else in the whole world. It blew my mind that I
was developing a relationship with the person I grew inside of, the person who
birthed me, saw me, held me before anyone else ever did. She became special to
me in a way that was totally separate and apart from the way in which my
adoptive mother -- or anyone else -- is special to me, and I was absolutely devastated
when she died. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 12.0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">I am used to a standard set of nosy questions about
finding my "real" mother, what I knew, how I felt, my search and so on. I
don’t mind the questions. I am so happy that it is commonplace nowadays for
families to come in all different configurations and I teach my children that
adoption is just another way that parents and children are brought together. My
girls know that parents can be of any gender or sexual orientation and that
children come into the world and into their families in many different ways. I
want to normalize adoption for them because I want adoption to be normal. I
want people not to shy away from the tough stuff about adoption. I want them to
know that it's hard even when you love your parents, even when you look enough
like them that you can "pass." I want them to know what I once heard:
that adoption is like grafting a tree. It's uprooting. And it requires a lot of
love and work to take. It's a big fucking deal and people who are part of the
adoption triad as birth parent, adoptee or adoptive parent carry adoption with
them long after the actual event and it’s a part of who they are. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 12.0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Contrary to the way I was raised, my birth mother encouraged
me to talk about my adoption. In fact, the day she and I met for the first time
in person at a restaurant we both loved, she told every
single person at the restaurant that I was the daughter she gave up 26 years
before. She told the maitre d', the waitstaff, the other diners, anyone who
would listen. She couldn't stop hugging me and asking them if they thought we
looked alike. I was shocked -- and I loved it. She was so open. I wanted to be
like her. I <i>was </i>like her. For the first time in my life, there was
someone in the world that I was related to. <span style="mso-spacerun: yes;"> </span></span><br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXvej5-zHwP1XFRh-Rq9N92pIc8GyofU00tUU3gm-eWQhyndex7Ss__j4aOh0UacBzZYPrWhyCqNSTFKydsmUutNd3IQlG4diTi8ynJ1CR5ozIH1hMFDtFuenbVOynuMiER1y3E6BevW4/s1600/photo(1).JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXvej5-zHwP1XFRh-Rq9N92pIc8GyofU00tUU3gm-eWQhyndex7Ss__j4aOh0UacBzZYPrWhyCqNSTFKydsmUutNd3IQlG4diTi8ynJ1CR5ozIH1hMFDtFuenbVOynuMiER1y3E6BevW4/s1600/photo(1).JPG" height="320" width="235" /></a></div>
</div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 12.0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Growing up, I didn't know that many domestic adoptees of my
generation but those I did know were a lot like me: adopted within the same
race and even religion, able to "pass" with their families, all
records sealed. Some of them searched, but always for their birth mother. Just
like me. Of all the wackadoo questions I was asked, very few people asked me
about my birth father. If they had, I wouldn't have had much to say. Until this
year, that is. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 12.0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">If my parents knew next to nothing about my birth mother,
they knew absolutely nothing about my birth father. When I was 18, I wrote to
the adoption agency to ask for my "non-identifying information,"
which was basically the only thing New York adoptees could legally do to
satisfy their curiosity about where they came from. This was supposed to be
enough but it wasn’t. How could it be? In the letter, I learned very little
about my birth father; it seemed that my birth mother wanted it that way. I read that she refused to give the adoption agency any information about him
at all. I didn't know why, but that was enough for me to put him -- and her --
out of my mind for another eight years.<br />
<br />
When I was in my mid-twenties, someone told me that adoptees discover something
critical about themselves when they reconnect with their birth mothers. This
person, an adoptee himself and a former adoption counselor, explained that
adoptees often grown up feeling somewhat lost.They're born and then immediately abandoned, after all. Maybe they lack a sense of true
belonging. Maybe their identities are somewhat splintered. Maybe it's such a deeply subconscious feeling that they can't ever name it, but they know that something is just... off. He said that when they meet their birth mothers it's like fitting that last
piece into the puzzle. And I believed him. But he never said anything about
adoptees and their birth fathers and I never thought to ask. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 12.0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">I had never thought seriously about searching for either of them before that conversation. My
birth father I’d written off as nothing more than a sperm donor. If my birth
mother didn’t want him involved then I didn’t either. I fantasized about seeing
my birth mother through a glass window, recognizing my face in hers, seeing her
move from afar. In my mind, we never spoke. And yet,
we made our ways back to each other and it was easier than I think either of us
ever expected. Some
people hear the story and say I found her and others hear it and say she found
me. </span><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Maybe someday I will write more about how it all happened. </span>One way or another, we found each other and after a decade of trying to
figure out who we were to each other, I had a baby and suddenly, she was
Grandma and we became very close. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">The relationship was and had always
been, however, more or less on her terms. She was amazingly generous with me at
times, and was the best and most thoughtful gift-giver I ever met. She drove
hundreds of miles on a regular basis to spend just a few hours with me. She gave me books when she finished them because
they made her think of me. She bought me cookbooks she thought I might like and we made the recipes together. She
took me to museums, restaurants and shows she knew I would love. She was
always willing to try new things, visit new places and have new experiences
with me. She called me regularly no matter where on the planet I was living and
no matter what our relationship was like at the time. And I loved her for all
of that and more. But there were a couple of things she refused to do. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">One of those things was to connect me
with my birth father. When we first met, she gave me her high school yearbook
and showed me his pictures. She told me everything she could remember about
him. She answered every question I had and when I asked the inevitable one
about whether she was going to tell him we were in touch, she grew vague and
distant. Let’s think about that, she said. If you want to meet him, tell me. I
am not sure I know how to find him, but let’s talk more when it’s important to
you. I want to be the one to connect you, but not now. I was unsure and afraid,
so I tucked that away. I figured we had plenty of time, and I didn’t think I could handle another reunion like that just yet. And
what if it was worse? What if he didn’t want to hear from me? So I didn’t push.
And then, decades too soon, she was gone.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">A little more than a year ago, I got
a call from a childhood friend of my birth mother’s. She left me a very cryptic
voicemail in which she mentioned my birth father by name, saying she’d had a
conversation with him that she wanted to fill me in on. It took three or four
agonizing days of phone tag for me to catch up with her. When I did, she
explained that she was not only a childhood friend and classmate of my birth mother’s,
but also my father’s, and that year their high school class was holding their
40<sup>th</sup> reunion. There he learned for the first time of my birth
mother’s passing and that she and I had been in touch. He wanted to meet me; did
I want to meet him? I was excited but afraid. I said I didn’t want to be the
one to reach out first, so I gave her my contact information to pass on to him.
And when I checked my email the next morning, there was a letter from my birth
father in my inbox.</span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Maybe it’s that I’m older. Maybe
it’s that I’ve been through this before. Maybe it’s that I have a better
relationship with my parents now than I did in 1999, or maybe it’s that I have
children of my own and have less to lose. Maybe it’s that I’ve had years of
therapy about adoption, or maybe it’s that he lives 3000 miles away so I don't feel a ton of pressure. Maybe it’s a
little of all of that, and maybe it’s that what little of me is easygoing and direct is the part I get from my birth father. Our connection
worked right away. </span><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuWU45Gtd6h7oaYayhG54yOoaq-GAloiNP0cwwnSTIwdAYscjeZUVp4XkoEEUWV440wxRQ_YwDEUo-EeqsqmJ9ES-q-PRHSh1hVuDGTNBc3XlA4On-pvcZEK23FwlECzLLeSumbdXyU9I/s1600/John+and+me.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuWU45Gtd6h7oaYayhG54yOoaq-GAloiNP0cwwnSTIwdAYscjeZUVp4XkoEEUWV440wxRQ_YwDEUo-EeqsqmJ9ES-q-PRHSh1hVuDGTNBc3XlA4On-pvcZEK23FwlECzLLeSumbdXyU9I/s1600/John+and+me.jpg" height="240" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
</div>
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<br /></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">With him I feel like myself. It’s
easy to be with him. He’s funny, kind, generous, emotional. <span style="mso-spacerun: yes;"> </span>He cares deeply for me and always has, it
seems. I liked him immediately, and couldn’t help but see myself in his face, in his behavior. I thought for so many years that I was my birth
mother’s doppelganger and perhaps I am, but I am also clearly this man’s child as
well, not only in looks but in personality, in spirit. We met exactly a year
ago and we grew close quickly; I feel like I’ve known him my whole life. And in some
ways, I guess I have. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">It is amazing to me how much of me
comes from two human beings I never knew growing up and who, apart from an
intense and magical teenage romance, really didn’t know each other either. It’s almost
scary. I have flip-flopped considerably when it comes to where I stand on nature vs.
nurture, being staunchly pro-nurture as a young person, probably because I
hadn’t yet seen any evidence of nature in my life at that point. Then I was
essentially agnostic for years, since I felt alienated from my adoptive parents and everyone else. Nature and nurture could suck
it, I thought then. I was very isolated. That’s when I started reading books on
adoption and learned that many other adoptees felt as I did: lost and alone.
Meeting my biological mother was eerie in some ways and made a naturist out of
me. Watching her move, listening to her voice, just looking into her face often
felt like looking into a mirror. We barely knew each other and yet we could
finish each others' sentences. Even when we struggled it was like I was
fighting with myself, and I found myself trying to remember all that I had read
in philosophy class about predestination because it almost seemed pointless at
times to try as hard as I was to pursue a life of my own when I was this much
like this other human being. The difficulties we had I believe had less to do
with us not understanding each other or being dissimilar and way more to do
with how alike we were, both adoptees, both such strong personalities, both so
afraid of losing one another, of losing in general. I clung to her as if
knowing her gave my life meaning, and in some ways I guess it did.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">It’s true that meeting a birth
parent is an eye opening experience. Finding your face in the face of another
human being you’ve never seen before is indescribable. Then there are phases to
reconnection that go beyond the initial reunion. There’s the “coming out”
stage, which happily I was spared. I was very touched to learn that both my
biological parents had been open about my existence to their families just as
my parents had been open about my adoption to me, so there were no secrets to
be revealed on either side. Then, introduction. There was the meeting of spouses
and half-siblings. Siblings! I am an only child and somehow, I also have four
siblings, and two nephews and a niece! I suddenly have huge extended families
and lots of people who knew my parents who now also want to know me. It’s all
so beautiful and strange and sometimes it’s overwhelming. If it’s hard for a
biological parent and child to reconnect later in life and sustain that
connection, think about how many times harder it is for the biological parent’s
family to sustain a relationship with her biological child long after her
death. That’s one we are still working through. There’s no instruction manual
there, and we’re all just figuring it out as we go. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">I felt deprived of family for
so many years and now I sometimes catch myself feeling guilty for having three
times as much family now as most people ever do. I find it laborious and,
frankly, like TMI to always to have to say “my birth father” so sometimes I
just say “my father” and then I feel a wave of shame. What about my adoptive
father, the man I still at the age of 42 call "Daddy" like the Daddy’s girl I
have always been? How would he feel if he heard me call someone else my father,
even if that man really is also my father? But don’t I, an adoptee, really
truly have two dads and two moms? I do, and still I feel like I am saying
something wrong or that someone’s feelings will be hurt. Oy, some days it makes
my head spin. This last and longest phase is assimilation. What am I to these
people? What are they to me? Are these people my family? What is family,
really? And what if there aren’t words in the English language to accurately
describe this experience and the feelings I feel? That this is still something
I think about is why I choose to say that I <i style="mso-bidi-font-style: normal;">am</i>
adopted instead of saying that I <i style="mso-bidi-font-style: normal;">was</i>
adopted. It was more than a hand-off, more than a signature on a form, more
than a heartbroken teenage girl walking away from her baby and more than a baby
coming into the lives of a couple who had been waiting for years. It’s <i style="mso-bidi-font-style: normal;">still</i> my story.</span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><span style="mso-spacerun: yes;"> </span>Maybe it is a story I need to write someday,
so I can create the words and tell people what it’s like, but not today.
Because the rest has yet to unfold. I don’t know what will happen and for today
it doesn’t matter. I tell myself the more people there are in the world who
love and support my children and me in whatever way they can, the better. We
are all still learning each other, and with every interaction I also get to
learn more about myself. How could that be a bad thing? </span><br />
<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZouEDYQqNKRU3AEzjQJuH3G14Dl93lvBMnedoC8SC4srBHfdja4w5bni8Tc12sM-ZqYSC8WFZpAnDAkJ4R2fxaydcRMRZA7ONsJgL6lr133QgERhy4knehWID0nZHp9PH37bNvsl4pUU/s1600/parents.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZouEDYQqNKRU3AEzjQJuH3G14Dl93lvBMnedoC8SC4srBHfdja4w5bni8Tc12sM-ZqYSC8WFZpAnDAkJ4R2fxaydcRMRZA7ONsJgL6lr133QgERhy4knehWID0nZHp9PH37bNvsl4pUU/s1600/parents.jpg" height="212" width="320" /></a></div>
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</span>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8497038950704433299.post-54155948363314798232015-01-02T00:20:00.002-05:002015-01-05T16:23:11.339-05:00Nothing Changes on New Year's Day (I Will Begin Again)<!--[if gte mso 9]><xml>
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<div class="MsoNormal">
What? 2014, where did you go? Suddenly here we are and it’s 2015. There is so much about
the past year that I want to record that I haven’t. There is even so much about
the past <i style="mso-bidi-font-style: normal;">week</i> that I want to record. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
More than once this past week of vacation, I’ve felt like I should just follow
my children around and write down every cute or funny or inspirational thing
they say in a notebook that I can reread when they are grown. I wanted to write down the time a couple days ago when Johnny was leaning in to turn up the volume on <i style="mso-bidi-font-style: normal;">The Nightmare Before Christmas</i>. Teeny,
currently obsessed with Jack Skellington, was afraid he was turning it off.
“No!” she cried. “Don’t turn it off!” I was amazed. I didn’t even know she
could say that. In a flash I remembered how a year ago I had created a list of
all the words she could say and put it in a Google doc. I gave her teachers and
therapists access so we could all update it whenever we heard new words. At the
time, her words were so few and her pronunciation so poor that most people had
great difficulty understanding her. That list, on a spreadsheet that included a
column in which I tried to recreate the way she pronounced particular words and
phrases (like “AH-waht” for “I want”) served to help everyone understand what she meant when she tried
to express herself and I wasn’t there to translate. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Now she speaks in complete
sentences almost routinely. They are slow and deliberate but they are pretty accurate and, to most, pretty clear. What’s funny is that I don’t always like what
she has to say! “Did you finish peeing? Wipe yourself please,” I will say, a
thousand times a day, handing her a wad of toilet paper. “No. YOU wipe me,” she
will retort, pointing a finger in my face. These days she so is full of “No.
YOU do it” that I have just started doing things for her that I know full well
she can do herself. But this is dangerous territory for a three-year-old,
neurotypical or otherwise, because as soon as I do that, she will of course shriek,
“No! Teeny do! Teeny do!” and collapse into hysteria if I dare to do so much as
flush the toilet for her when she’s finished because she decided a nanosecond
too late that she wanted to do it herself. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
She’s becoming very stubborn. Half ultra-independent (“Teeny
do it self!” and “No, I want own muffin!”), half-clinging to Mama (“I want to
sit lap, Mama” and “No, YOU do it, Mama.”) Always pointing. Usually polite. And
for me, never resistible. <span style="mso-spacerun: yes;"> </span>As frustrating
as it was to be outside with Bee when she, at eleven months, was taking her first
steps, needing a half hour to cover one city block, it is a thousand times more
frustrating to be outside with a three-year-old who wants like hell to walk but
simply cannot. “I want WALK!” she will shout as we are loading her up into her
wheelchair or her stroller or carseat. But then as we are putting on her shoes
she will declare, “No braces!” When she doesn’t wear her braces, her ankles
collapse easily and even standing becomes more challenging. So we try to
reason with her about that, which gets us nowhere. Sometimes she wins and
sometimes she doesn’t. When she wins, we walk. But it doesn’t stop there. “Just
one hand,” she will instruct me as she pulls herself to a stand, leaning on me.
To step without her walker, she needs to support herself with both arms, but
this is too restrictive for her liking. I automatically take both her hands in
mine to help her, but she invariably yanks one hand away from me, repeating
“just one hand!” When I can, I let her try this even though we both know that she can’t
take a single step without us holding both of her hands. I redirect that other
hand to whatever’s closest – a chair back, a table edge, a windowsill, another
person’s hand. This clearly makes her feel more independent. But it would probably take us a year to walk down one block. We
take one very slow step after another, correcting the way her right foot
crosses her left when she isn’t paying attention and the way both feet do it
when she gets physically tired. But she presses on until she can’t go any
further. “Take a break,” she will announce and sit down right in the middle of
wherever she is, whatever she is doing. Two minutes later
she’s usually ready to try again. This kid’s spirit is almost indefatigable. (Almost. She does have moments of extreme frustration when her body can't do what her mind tries to command it to.) For me it’s
an exercise in patience and self-restraint that I do mostly happily because I
know this new level of determination is a sign of incredible progress. Plus there’s
something about it that’s awfully endearing, even when she’s at her bossiest.</div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlnsuDy_lghp08s2E0SfIP1y7Z-eW71tUWx0Bs7bJPMiIWWymHG8UG31SN056L78BdI9_l99zxtnWfXaav5k_KGW2KFpZR0RBRd-yTF0MDx_NNMrmHWs9fVyR3cNJN79otNwAo8Pqxgxs/s1600/IMG_0786.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlnsuDy_lghp08s2E0SfIP1y7Z-eW71tUWx0Bs7bJPMiIWWymHG8UG31SN056L78BdI9_l99zxtnWfXaav5k_KGW2KFpZR0RBRd-yTF0MDx_NNMrmHWs9fVyR3cNJN79otNwAo8Pqxgxs/s1600/IMG_0786.JPG" height="320" width="320" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Bee is now six weeks away from her fifth birthday. She is both
sassy and sweet. This week she helped us with the border of our 1,000 piece
puzzle, scouring the piles for corners and edges and seeing where they fit
together. She happily sorted hundreds of pieces with me by color and pattern. “Oooh,
Mama!” she announced, waving a tiny piece at me. “I think I found another piece
of that lady’s green dress! Look!” Later, border complete, we were chomping at
the bit to get started on the rest so we set the girls up with a movie. “Are
you almost done with the puzzle?” she called to us, about a half hour later.
“No,” I answered. “It’s a big one. We’ll be working on it all week!” I could
hear the smile in her voice when she responded, “All week? Oooh! That means
more screen time for us!” </div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP4pzCGiuNQRzZRjt4ePjtcLcFqJJYQDEQEWRr0Fg-icZmCJb0zPsCcJ8kJkSaEVWrokURpSzTvP49pLtPMsrbrNlX5iEVWaL5tIxbLzGYRI9wBZGFlDCPVbTjODp9DndibHzMMkHYxbE/s1600/IMG_0096.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP4pzCGiuNQRzZRjt4ePjtcLcFqJJYQDEQEWRr0Fg-icZmCJb0zPsCcJ8kJkSaEVWrokURpSzTvP49pLtPMsrbrNlX5iEVWaL5tIxbLzGYRI9wBZGFlDCPVbTjODp9DndibHzMMkHYxbE/s1600/IMG_0096.JPG" height="240" width="320" /></a></div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgj_7M5xiOLJy70rIMLtLGwa6gkFNoZgqg0D8CuIQEOXRBkqOV6z8J_wOF1OslSv5DvH0TMrUWsUzm1k5CQ648N9TH1VPOTUKXnaDGEBIrts3kJ1fpgUh5GYyXkuDVxBRawc_zu_jpGCbE/s1600/IMG_0110.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgj_7M5xiOLJy70rIMLtLGwa6gkFNoZgqg0D8CuIQEOXRBkqOV6z8J_wOF1OslSv5DvH0TMrUWsUzm1k5CQ648N9TH1VPOTUKXnaDGEBIrts3kJ1fpgUh5GYyXkuDVxBRawc_zu_jpGCbE/s1600/IMG_0110.JPG" height="320" width="240" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfVqbETWpz0vf43j9zObob1vaqNlpnY_DTxApKCUmBhMh1rnqMfvUGGpybhuwvjz6vWJ_0YaS2EEpRMWaN9zYxBPYzJDXTuC1CSn12P6AWUJogAtNBQ2XbVLRhyphenhyphenzGXxo3OvTq04KXaZXM/s1600/IMG_0144.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfVqbETWpz0vf43j9zObob1vaqNlpnY_DTxApKCUmBhMh1rnqMfvUGGpybhuwvjz6vWJ_0YaS2EEpRMWaN9zYxBPYzJDXTuC1CSn12P6AWUJogAtNBQ2XbVLRhyphenhyphenzGXxo3OvTq04KXaZXM/s1600/IMG_0144.JPG" height="240" width="320" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Cute, right? But I don’t need to follow them around with a
pad and paper. Kids are cute at every stage and in thirty years I will look back
and some of it I will remember and some of it I won’t and that’s okay. I
don’t need to post every little thing they say and do to Facebook or other
social media since my friends all have adorable children or cats or dogs or hobbies or homes too. They get it. I don’t need to do anything except enjoy
it. And for me, sometimes that’s really, really hard.</div>
<div class="MsoNormal">
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That’s what I sat down to write about tonight. It’s
January 1, a day of resolutions and new beginnings. In the past I would resolve
to get skinny. To work out every day. To make <i style="mso-bidi-font-style: normal;">that</i> person fall in love with me. To stop saying stupid things. You
know what I mean. At some point, though, I realized that those kinds of
resolutions don’t work, that despite my determination, a half hour into my starvation diet I was ready to
eat the house, that I hated the gym, that I had no control over other people
and that maybe it’s not that I said stupid things but that I just didn’t have
the confidence to believe in myself and to own what came out of my mouth. So I
stopped making resolutions and started to think about ways I could be the
person I want to be. I didn’t have to wait for January 1<sup>st</sup> to do any of that. I could do that today, like right <i style="mso-bidi-font-style: normal;">now</i>.
<span style="mso-spacerun: yes;"> </span></div>
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This year I want to
do a little of both. At the tail end of a vacation in which I was essentially
forced to unplug, I realize now how much I liked it. Work was, for all intents and
purposes, closed for the time I was away and I had next to no responsibilities
or reasons to even check in. Cell phone service was intermittent at best, so my
phone was quiet except in fits and starts, and wifi in the house we rented was
weak so powering up my laptop was pretty useless. I sent texts and social media
updates in a flurry of strong reception, usually when we were in town for some
reason, and then had little to no way of responding to the replies back at the house.
Making calls in one spot not moving at all lest the conversation dwindle into
“what?? You’re breaking up. What?!?” got tiresome and after a day or so I gave
up on emails altogether. But you know, a girl could get used to that. I found
myself spending the week with my family. I mean, <i style="mso-bidi-font-style: normal;">with</i>. I wasn’t multitasking. I wasn’t in a million different places
while sitting on the couch with my kids. I wasn’t constantly thinking about
what I had going on at work that wasn’t getting done or that I had to email
so-and-so before falling asleep or what I was going to make for brunch when
company comes next week or the bills that needed to get paid or that the cats
didn’t get fed yet or that what Teeny just said would make a cute Facebook
update. I was <i style="mso-bidi-font-style: normal;">there</i>. I was here:</div>
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One morning Bee woke me up early. Teeny and Johnny were both
still asleep so we pulled on our coats and hats and boots and went for a walk
in the woods. We talked about <i style="mso-bidi-font-style: normal;">metta</i> –
the Buddhist concept of lovingkindness – and, stretching our arms out, we
practiced throwing some love out into the universe. It was a pretty sweet
moment for me, seeing who came to mind for her as we named many people and
animals we loved and for whom we wished happiness, health and peace. When we
came back to the house, I took out the box of items I have for when I meditate and I
explained to her what they were. I showed her my little meditating Buddha
statue, the lotus candle holder, the mala beads. She loved my Tibetan
singing bowl and she sounded it several times before setting the timer. She settled in next to me
and tried to just breathe. She was fidgety, so we tried putting our fingers on
the mala beads. That worked for a little while. But after three minutes I could
see her mind beginning to wander, so I let her sound the bowl again and we put
everything away. Honestly, I wasn’t sure what she really learned, if anything.
After all, she is only four. But she talked about that experience quite a bit and a day or two later she asked if we could light
the flower candle again and sit with the Buddha and the beads. I was pretty surprised, and happy.
And today on a walk in town, we stopped in one of those hippy-dippy tourist-trappy stores for rich white ladies trying to get in touch with themselves,
full of overpriced jewelry and self-help books where everything is breakable,
nothing is kid-friendly and where they play Enya and burn incense all day long.
“Look!” she shrieked, and tore into the store, the door's chimes tinkling as she went in.
A hundred disapproving eyes were instantly on us. Disregarding them, I looked.
And following her gaze, I smiled. “What are those, Bee?” “They’re Buddhas,
mama,” she answered proudly, pointing. They were! </div>
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Maybe she will retain nothing from those three minutes, but
they were among the most important minutes for me of this whole week. I felt
truly <i style="mso-bidi-font-style: normal;">present</i>. I was there. With my kid. It didn’t
matter to me what she took from it. It didn’t matter whether she was really
meditating or just trying to sit still because I asked her to or if she
understood that by sending love out into the world the way we did, we
really did make the world a better place. It was a moment we had together and it
was fun for both of us. We were talking and we were listening to each other. It
was only a few minutes, but they were uninterrupted minutes for a mama and her
girl and they meant a lot to me. For a moment I was, as a friend of mine likes to say, where my feet were. That’s presence.</div>
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I was fully present in other ways this week. With the phones
taking a backseat, I noticed that we talked more. Johnny and I completed our
1,000 piece puzzle working together over three awesome, engrossing evenings. We had friends join us for two days and
we all sat around the table and talked and took turns playing with the kids. </div>
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We walked in
the woods behind the house, jumping on logs and inspecting the stream and the
ice forming at its edges. “Look at that ice! It’s freezing over! I think Elsa
has been here, don’t you, Mama?” Bee pontificated more than once. </div>
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I let Johnny sleep in one morning and he let me, too. I had a little time to myself when I needed it and so did he. I brought a
new cookbook with me and together he and I picked out new recipes to try. I dutifully made a shopping list two pages long with all
the ingredients I would need to make those several very complex dishes. Our afternoon
shopping trip outing -- one I was really looking forward to -- would involve a couple
of different stops: at the supermarket, a gourmet grocer and the food
co-op. We were thirty miles from the house when I realized I had forgotten it.
I was devastated and the afternoon I was so excited about crumpled before me. But
I realized I had a choice about how to behave. I decided to enlist my family's help to find everything I needed, and in the end we had great fun doing our food shopping together. And because I had been so involved
in what I was doing, because I was so committed to creating these new dishes
and because I had been so fully present when I made the list, somehow, I
remembered every single item except one, and that one was easily
substituted by something we already had. I couldn’t believe it.</div>
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Today I noticed that after five minutes walking in the woods
with me, Bee’s conversation shifted from Elsa and toys and <i style="mso-bidi-font-style: normal;">stuff</i> in general to exercise, air, trees and love. This evening
before dinner we walked the half mile to the end of our road and back, and we
discussed the week we’d had and what we liked best. We talked about who and
what was waiting for us at home, what we had coming up in the next few days. As
we walked, she took my hand and said “I really like our house, Mama.” Which
one? I asked her. This house? Or our apartment at home? “Both!” she said,
smiling. “They’re cozy. Can we skip now?”<span style="mso-spacerun: yes;">
</span>So we skipped the rest of the way down the hill holding hands to keep
our fingers warm. </div>
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This year I want more moments like that. So my resolution is
to be more present. That’s vague and it’s meant to be. Maybe it means
unplugging a little more, so that I unlearn the this-is-a-Facebook-moment-wait-where's-my-phone
thought that I think at least a dozen times a day. Maybe it means doing one thing at a time
and letting go of the notion that I am a good multitasker. Maybe it means putting myself first more. Maybe it's about worrying less and asking for help more. Spending more time
listening. Meditating. Writing. Reading. Exercising regularly in ways I really like because I love my
body and I love to be outside. Doing the things I love with the people I love
and <i style="mso-bidi-font-style: normal;">for</i> the people I love. Maybe it's a little of everything. </div>
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And yet as I type those words, my brain is already working against
me. “You should have your resolution be clearer so you can hold yourself
accountable,” it says. "That's what it takes to get things done." Maybe that's true for short term goals, but I want to change myself in this way <i>for good</i>. But my brain wants my New Year’s resolutions to sounds like
this: You should read 50 books this year. You should work out six times a week.
You should sleep at least eight hours a night. You should see friends once a
month, balance your checkbook twice a week, eat only this number of calories
every day. You should meditate once a day for at least 20 minutes a day. Do a
blog post once a week. Read a book on active listening. Take up ceramics. Go
back to school. Put the phone on airplane mode for two hours a day. My brain is
yelling at me. “Those are all loving things! Accountability is key! Do them all and do them all <i>right</i>!” </div>
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Maybe “be more present” means nothing more than that I stop telling myself all
the things I <i style="mso-bidi-font-style: normal;">should</i> do and that I am
a failure if I don’t do it perfectly. My brain wants to quantify everything as
though it’s a measure of accomplishment – or more like a measure of my failure
since there is no way I can hold myself accountable to that much. My brain challenges me: if you can do all of that, why can't you do more? But if you know you can't do it all, then why even try? Because clearly you’re awful at everything and you can’t
get anything right. </div>
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I don't want to hear that talk anymore. If I'm so busy crossing stuff off my list, am I really enjoying any of it? I do a lot of those things a lot of the time already.
Isn’t that cause for celebration? And wouldn’t it be something if I could let
myself off the hook for not being perfect and savor the truth of the many the things I do mostly right most
of the time? </div>
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I am so controlled by the clock, by the Outlook calendar, by
timers, alarms, reminders and confirmation calls. I look at a clock to know
when to eat, how long to run, where to be, how to get there, what to wear, whom
to contact. Some of it is unavoidable, but the truth is that I can’t remember
the last time I tried listening to my body, looking out the window at nature, or looking
at the expressions on my children’s faces to make the decisions I have been
allowing a beep or a ding to make for me. I am tired of being so overscheduled
that I can’t use the present moment to help me determine whether tonight is a
good night to read one extra chapter at bedtime because I am instead too busy
thinking of all the things that might go wrong if they are up ten minutes later
and all the things I still have to do and oh yeah we still have to water the plants and when will we be able to afford bunk beds for the girls
and is that my phone ringing and goddamn it I forgot to put the wash in the
dryer and I still have that thing to do for work so these kids have to get to
sleep <i style="mso-bidi-font-style: normal;">now </i>so I can make some tea and
fire up the laptop, and then I’m so lost in thought that I haven’t heard a word
the girls have said and I completely missed bedtime anyway even though I was sitting right there. </div>
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I am not naive enough to say that this all stops today, New
Year’s Day. But I can chip away at it. Over the past week I have felt a new
love for my spouse and a genuine appreciation for the things we have in common
– shared interests like music, certain kinds of food, doing puzzles, walking in
the woods, stopping for coffee -- and a real respect for our differences too.
We listened a little better to each other this week and we helped each other
more. Our voices stayed a little lower and we laughed more than usual. And my
patience with the girls lasted longer than usual too, and that was thanks to
being present. So what if Teeny was always insisting on being in my lap or on
my hip? Why should that be annoying? So what if she’s getting heavy and I can’t check my email while I'm holding her? It was an opportunity to smell her hair, sneak a kiss on her
cheek, give her a squeeze. So what if Johnny was sitting reading his book instead
of helping me in the kitchen? Preparing a meal is meditative for me, so how much help did I really need? And
besides, isn’t he on vacation too? I loved seeing him engrossed in a book and
when I really needed his help, I got to practice asking for it. So what if Bee
wanted to play hide and seek, choosing the same hiding spot over and over and
clearly not understanding the point of the game as I knew it. “I’m hiding in
the closet, Mama!” she said every single time, giggling and hopping up and down
like mad whenever she heard me come near. This gave me a chance to get
creative. “I’m looking in the cabinet, and she’s not in there! Hmmmm… no Bee in
the dresser drawers! Where could she be this time?” And this had a real
snowball effect: I snuggled with Johnny and the girls a little bit more than usual,
I offered to read to them a little more, I hung out in the bathroom longer than
I usually do while Teeny splashed in the bath busily pouring water in and out
of an empty bottle of shower gel and I spent a lot longer preparing new,
interesting, loving and healthful meals for our family. These are things that I
do already, but this week I did them a little bit more and with a lot more
love, because I was really there for it all, soaking it up and feeling the
effects resonate in my body, my mind and my heart.<span style="mso-spacerun: yes;"> </span></div>
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So here’s to another imperfect year. But maybe a just little bit less
imperfect, with me being a little more present.</div>
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Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8497038950704433299.post-14195442863097042652014-12-14T22:30:00.000-05:002014-12-15T11:57:13.459-05:0050 Things I Love About Bee<div>
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These days I can't take my eyes off of Bee. She is changing so quickly! It's like I can <i>see</i>
her growing, and I can't get enough. </div>
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<br />
So to follow up on my recent post with <a href="http://www.teenyandthebee.com/2014/11/50-things-i-love-about-teeny.html">50 things I love about Teeny</a>, I could not help but think about 50 things I
love about Bee today:<br />
<br />
<br />
<br /></div>
<div>
50. How she says "Mama, I want
to tell you something. I... I just love you." when she wants to hear her
voice but doesn't know what else to say.</div>
<div>
49. When one of
us leaves and she asks the other if we think the other will be okay.
"Daddy will be all by himself! Do you think he will be okay?"</div>
<div>
48. Hearing her sing "I'm all about that bass" under her breath. <i>"I'm bringing booty back!"</i></div>
<div>
47.
She was the happiest kid in the city on Halloween in an outfit she
concocted from various items in her wardrobe. I asked her which costume
of all the ones she'd seen that day she liked best, and she said "The
one I wore!"<br />
</div>
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</div>
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<div>
46. She snuggles with me every chance she can get.</div>
<div>
45. She can order a "venti decaf Americano iced no room" for me without even blinking.</div>
<div>
44. Her skin.</div>
<div>
43. Those cheeks!</div>
<div>
42. How much she loves her sister.</div>
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<div>
41. When she asks me if she's special too and I can list 100 ways she is special to me without even batting an eyelash.</div>
<div>
40. Watching her body grown and change from a stocky baby into a tall and lanky girl.</div>
<div>
39. The way she says "pig-a-tails."</div>
<div>
38. She's vegan because she believes in it and not because I force her to be. She loves her adopted turkeys Anna and Elsa.</div>
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<div>
37. She genuinely does not understand why people she loves might not be vegan.</div>
<div>
36. Her artistic inclination.</div>
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<div>
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<div>
35. She is easy to get along with.</div>
<div>
34. The way she speaks her mind - openly and directly and also innocently. She knows no other way.</div>
<div>
33. Her taste in music.</div>
<div>
32. Watching her sleep.</div>
<div>
31. Her beautiful bright blue eyes.</div>
<div>
30. How much she looks and acts like me.</div>
<div>
29. How she also looks so much like my maternal biological family that I think of my birth mother and sister every time I look at her.</div>
<div>
28. Doing her nails.</div>
<div>
27. She loves to splash in puddles.</div>
<div>
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<div>
26. Baking with her.</div>
<div>
25. How she comes into my bed at night to cuddle with me.</div>
<div>
24. The little heart-people and heart-cats she draws.</div>
<div>
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<div>
23. How much she loves school.</div>
<div>
22. She likes to listen to me read chapter books aloud.</div>
<div>
21. She loves taking car rides.</div>
<div>
20. Her incredible memory. The kid forgets nothing, ever.</div>
<div>
19. How happy she is outdoors.</div>
<div>
</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbd7lS5RVzi8j-FJgHLYsV_mrlZnRJ8gxhaZeWUD7lfWwgK4d6Ga-kLODyiNePR8j6JIN9_Q6ie6Yv2TsHyNOvPAcpeua3EYyfKwb-G8xAZzBmyPfkLojYpHsA_kzV82cisZlVXvjSpGc/s1600/FullSizeRender(4).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbd7lS5RVzi8j-FJgHLYsV_mrlZnRJ8gxhaZeWUD7lfWwgK4d6Ga-kLODyiNePR8j6JIN9_Q6ie6Yv2TsHyNOvPAcpeua3EYyfKwb-G8xAZzBmyPfkLojYpHsA_kzV82cisZlVXvjSpGc/s1600/FullSizeRender(4).jpg" height="320" width="240" /></a></div>
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18. She is totally unselfconscious and loves to be naked.</div>
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17. Her attention span.</div>
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16. Brushing her hair.</div>
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15. How much she likes to help with everything.</div>
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14. She tries to speak and write in other languages like Spanish and Japanese.</div>
<div>
13. When she is silly and giggly.</div>
<div>
12. Overhearing her ask a friend of mine if a treat she wanted to share with her was vegan (it was).</div>
<div>
11. The random things she says that give me glimpses into her hardworking little mind.</div>
<div>
10. How easily she uses an iPad or iPhone or asks for something that's "on Netflix." </div>
<div>
9. She says she will always love me, always be vegan and always want to live with me. I'll take the first two out of three. :)</div>
<div>
8. She's a wonderful little host when she has other kids over.</div>
<div>
7. She likes to Face Time with me when I travel so she can see me, where I am, what I'm doing and what's surrounding me. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4_CtXdUWu_4Sr31hFGdBKtKkKnJZkzmsuxbKIY4LDLIgnef8kuecxUt8Y6VJLTiWyna_p4sXu_-u5CXdMtDGmNf9FOuYCFTc84Tw9_AFbsEGwakaaksjH9kPTi2sAbbuxaP6f3xc2P10/s1600/IMG_9767.PNG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4_CtXdUWu_4Sr31hFGdBKtKkKnJZkzmsuxbKIY4LDLIgnef8kuecxUt8Y6VJLTiWyna_p4sXu_-u5CXdMtDGmNf9FOuYCFTc84Tw9_AFbsEGwakaaksjH9kPTi2sAbbuxaP6f3xc2P10/s1600/IMG_9767.PNG" height="320" width="180" /></a></div>
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6. When she requests overnights at Nana's house.</div>
<div>
5. Watching her decorate this year's Christmas tree with her daddy. </div>
<div>
4. Giving her the space to live her own life, develop her own opinions, make her own friends and just have her own experiences, some of which she shares with me and some of which she doesn't.</div>
<div>
3. She draws glasses on pictures of animals to be silly.</div>
<div>
2. That time I caught her saying "What the fuck!" in the mirror while pretending to be a grown up. Ha! </div>
<div>
1.
What started out as a fantasy I had while growing up of having a
daughter someday turned into the best idea that Johnny and ever I had,
which became a bump with a name that I carried for 40 weeks and then
grew into a baby who changed our lives forever and is now her own
person, growing and changing and developing and becoming more
independent every day. We picked her name when I was only 20 weeks pregnant. Today she loves her name and has her own identity with
this name that we picked when she was still an idea. I love hearing her say and seeing her write her name. Every
single time I do, it reminds me that she is my dream come true. </div>
<div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8497038950704433299.post-7458198876896024512014-11-11T18:26:00.000-05:002014-11-11T20:59:08.845-05:0050 things I Love About Teeny<div style="color: #222222; font-family: arial;">
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<span style="font-size: small;"><br /></span>
<span style="font-size: small;">Last week was the New York City marathon. We live right on the course towards the end, so every year we watch as much of it as we can. This year was the first year Teeny could actually watch with us and follow along. It was a really cold morning, so we bundled up to head out early. As we waited for the elites, Teeny sat in her wheelchair and clapped for the para-athletes soaring by in wheelchairs of all shapes and sizes. Because it was so early in the day and it was very, very windy, we were among the few out there watching. There was no music, no party, no masses of people dancing and screaming and holding signs like there would be in another hour or two. It was an oddly melancholy moment. I felt a little like we were in a Giorgio DeChirico painting, standing there alone on the eerily empty, cold and windy corner of a street set up for a much bigger crowd. Most of the runners wouldn't see this particular intersection for another two hours or more, yet the para-athletes were zooming along one at a time, accompanied by some of the fastest cyclists I've ever seen. I stood next to Teeny, pointing out the different kinds of wheelchairs as they passed us. I explained to her what they were doing. We cheered and clapped and I wondered vaguely if any of them noticed her. I cried as I watched her watch them -- I couldn't help it. At mile 21, many of them looked very tired but they all had that determined look I know so well. It's the expression I see on Teeny's face every single day. </span></div>
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<span style="font-size: small;">Maybe Teeny will grow up to be a para-athlete like the ones we saw that day and maybe she won't. Maybe she will get a PhD or maybe a GED or maybe she will be happy well into adulthood just singing her ABCs. Whatever the case, a good friend said today that she will definitely surprise us. And it's true. She already has. </span></div>
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<span style="font-size: small;">The day we got her MRI report I thought my life was over. Two years almost to the day, I now know it's not about me. It's all about her. And my life is far from over. It's so much better, and that's so much because of her.</span></div>
<div>
<span style="font-size: small;"><br /></span>
<span style="font-size: small;">So since internet lists are all the rage lately, here are 50 things I love about Teeny today:</span></div>
<span style="font-size: small;">50. She loves the soundtrack to <i>The Nightmare Before Christmas</i>, which has been one of my favorites since the movie was in the theaters ages ago.</span></div>
<span style="font-size: small;">49. How she says "MORE AH-WEEN! MORE JACK! I want JACK!" when it's over. (She seems to speak in all caps quite often.)</span><br />
<span style="font-size: small;">48. She wiggles her butt when she's dancing.</span></div>
<div>
<span style="font-size: small;">47. The pure joy she finds in so many things in life.</span><br />
<span style="font-size: small;">46. She is able to use language to do more than express a need or a want.
For example, when you call her name, she often answers with a deadpan
"what," like a totally typical teenager. </span></div>
<div>
<span style="font-size: small;">45. Putting her on and taking her off the school bus is a family affair we all have come to love.</span><br />
<span style="font-size: small;"><br /></span>
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<span style="font-size: small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQmyXMuTYJiB8RbybnVV-RVzyTUYKQcakwz1UhEByPrF4WrdIAroNxLJvjyUDCGCC-jVqAbbYIp7-y6aJORosjtn4ISVKv7U7D9AxfMjHFwNCIC2u2f_mU_WbkJ8GxXv6EaP-UdrYZ3bA/s1600/IMG_9017.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQmyXMuTYJiB8RbybnVV-RVzyTUYKQcakwz1UhEByPrF4WrdIAroNxLJvjyUDCGCC-jVqAbbYIp7-y6aJORosjtn4ISVKv7U7D9AxfMjHFwNCIC2u2f_mU_WbkJ8GxXv6EaP-UdrYZ3bA/s1600/IMG_9017.JPG" height="320" width="240" /></a></span></div>
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<span style="font-size: small;">44. How she sings the ABCs and counts on her fingers to ten.</span></div>
<span style="font-size: small;">43. Her adorable little lisp.</span></div>
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<span style="font-size: small;">42. She gives high-fives.</span></div>
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<span style="font-size: small;">41. The way she has decided to call Johnny "dada" even though we all call him Daddy.</span></div>
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<span style="font-size: small;">40. Her big round butt that is the only physical feature of mine she seems to have inherited and how adorable it looks in her new Hello Kitty or My Little Pony underwear.</span></div>
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<span style="font-size: small;">39. She doesn't mind long car rides.</span></div>
<span style="font-size: small;">38. How she claps and shouts "I PEED!" when she uses the potty.</span></div>
<span style="font-size: small;">37. She uses the potty about 75% of the time now. We thought we might be changing diapers forever.</span><br />
<span style="font-size: small;">36. Listening to her repeat everything anyone says to her and knowing she's trying her hardest to understand and contribute.</span><br />
<span style="font-size: small;">35. Her big beautiful eyes.</span><br />
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<span style="font-size: small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjN0nwHFH96HLngDgkpwPvU_2Hgx4-cc6e3TqfQCskL1cKmVPClYgstLNygebtEIDwqYM5tC7PR4KoKpObeIz3xuCItgLNpULoHT_hmMEA_bRLhTsZrrEu-2EhXVbP03I6JF36M1AXapb0/s1600/IMG_9537.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjN0nwHFH96HLngDgkpwPvU_2Hgx4-cc6e3TqfQCskL1cKmVPClYgstLNygebtEIDwqYM5tC7PR4KoKpObeIz3xuCItgLNpULoHT_hmMEA_bRLhTsZrrEu-2EhXVbP03I6JF36M1AXapb0/s1600/IMG_9537.JPG" height="301" width="320" /></a></span></div>
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<span style="font-size: small;">34. Snuggling with her, breathing her in and having her ask me for more hugs and kisses, most of which she now plants squarely and very wetly right on my lips.</span><br />
<span style="font-size: small;">33. Her determination. I've never seen anything like it.</span></div>
<span style="font-size: small;">32. She's a fairly adventurous eater and will try almost anything at least once.</span></div>
<span style="font-size: small;">31. She hugs her baby dolls and makes them sleep, cry, eat and walk.</span></div>
<span style="background-color: white; color: #222222; font-family: arial; font-size: small;">30. Her funny pronunciation of everything.</span><br />
<span style="background-color: white; color: #222222; font-family: arial; font-size: small;">29. The way she says "I love you... <i>too</i>!"</span><br />
<span style="background-color: white; color: #222222; font-family: arial; font-size: small;">28. She brushes her own teeth.</span><br />
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<span style="font-size: small;">27. How she always wants to do everything by herself.</span><br />
<span style="font-size: small;">26. Except when she doesn't. "No. Mama do it!"</span><br />
<span style="font-size: small;">25. She has a crazy sweet tooth, especially for vegan chocolate chips, chocolate chip cookies from Whole Foods and any cupcakes I make.</span><br />
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<span style="font-size: small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5-EQ3oN8rr1087OCxAI980dTycfizSqht0tkeMH_P_ul21ecEL4l3pQ-h2BnzSY07LuH14hFX0takfBvkaB2Q6plEX0NVq8wENsZ4P7ytk5u5MGYhVhnVdIFsI5UpOfzvXCFpOoPXRDE/s1600/IMG_9095.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5-EQ3oN8rr1087OCxAI980dTycfizSqht0tkeMH_P_ul21ecEL4l3pQ-h2BnzSY07LuH14hFX0takfBvkaB2Q6plEX0NVq8wENsZ4P7ytk5u5MGYhVhnVdIFsI5UpOfzvXCFpOoPXRDE/s1600/IMG_9095.JPG" height="214" width="320" /></a></span></div>
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<span style="font-size: small;">24. How she refers to herself almost always in the third person.</span><br />
<span style="font-size: small;">23. She says "Easy, Mama!" and "Be nice!" when I get cranky.</span><br />
<span style="font-size: small;">22. She loves her adaptive ballet class and begs to wear her ballet shoes all the time.</span><br />
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<span style="font-size: small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqhmDKcBBTeSOd3kgQoadb0vgfsKgJlgbshr1b4XQ9pxm1SY93Y8Fk5o5r0h8Q7XCeNH0dB1JxKwowlePlTbKYtX6mMxqJOxfJycedAQ4Xz-4RA2000ZbisSzmz-9MrN0DJZSm3bhAc6w/s1600/IMG_9117.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqhmDKcBBTeSOd3kgQoadb0vgfsKgJlgbshr1b4XQ9pxm1SY93Y8Fk5o5r0h8Q7XCeNH0dB1JxKwowlePlTbKYtX6mMxqJOxfJycedAQ4Xz-4RA2000ZbisSzmz-9MrN0DJZSm3bhAc6w/s1600/IMG_9117.JPG" height="320" width="320" /></a></span></div>
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<span style="font-size: small;">21. How she turns the pages of books when we read to her.</span></div>
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<span style="font-size: small;">20. Her little index finger, always pointing at something.</span></div>
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<span style="font-size: small;">19. The way she sleeps, rolled in a ball, butt in the air.</span></div>
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<span style="font-size: small;">18. Kissing her soft skin all over.</span></div>
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<span style="font-size: small;">17. Watching her learn.</span></div>
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<span style="font-size: small;">16. She's becoming very girly and often insists on wearing my necklace or bracelet.</span></div>
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<span style="font-size: small;">15. How she says her own name.</span></div>
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<span style="font-size: small;">14. She plays her dada's guitar.</span><br />
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<span style="font-size: small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi363QsmlaPgPlnTdYlj7XKXzMMMjcxYeRalBgd36Kf0qjg9wP0k2llgYO8zH7XFolBtVhT0kTrsz6_cm82iRUlGP5WPz4I3svJqPQic7cXaMYSx-x9sHszzhFeewrKOUPCwcQqvcoYFgM/s1600/guitar.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi363QsmlaPgPlnTdYlj7XKXzMMMjcxYeRalBgd36Kf0qjg9wP0k2llgYO8zH7XFolBtVhT0kTrsz6_cm82iRUlGP5WPz4I3svJqPQic7cXaMYSx-x9sHszzhFeewrKOUPCwcQqvcoYFgM/s1600/guitar.jpg" height="214" width="320" /></a></span></div>
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<span style="font-size: small;">13. She says hello and goodbye in such earnest that you know she's genuinely happy to see you come and sad to see you go.</span><br />
<span style="font-size: small;">12. She likes to wear costumes and play dress-up.</span><br />
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<span style="font-size: small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhC5HMO3hDNSSQ1S-obkdRkLBSC5I9jvGKsDB1rrVk9bGL9L77EGwgxPDpmpHxFWw5_-Ht50BRPiIFVhhjQprwIs2jzJ0qqD7N2-BCG9kefsev5y0smKkV00pXdIYV7LsUPs4RFG-nbSA4/s1600/IMG_9533.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhC5HMO3hDNSSQ1S-obkdRkLBSC5I9jvGKsDB1rrVk9bGL9L77EGwgxPDpmpHxFWw5_-Ht50BRPiIFVhhjQprwIs2jzJ0qqD7N2-BCG9kefsev5y0smKkV00pXdIYV7LsUPs4RFG-nbSA4/s1600/IMG_9533.JPG" height="320" width="240" /></a></span></div>
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<span style="font-size: small;">11. How much she charms everyone who meets her.</span></div>
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<span style="font-size: small;">10. Kisses, band-aids and the little icepack shaped like a ladybug make every boo-boo better. And how she says "I'm okay!" whenever she tumbles because she knows we all worry she's going to get really hurt.</span><br />
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<span style="font-size: small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3GUTMKHt2Akkpn7kKEnJfLgAR_OmdbHSH27ZGRLiBy3NbOwnRzKm2ATO5MflXpJmP2eSEHq8y3mqeXJ37GQC8v6MMiMIPPA3cpVu-vuJ0peMgaecB9f2dNvl_xFhAeQBW9uwnql3n0eI/s1600/IMG_8709.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3GUTMKHt2Akkpn7kKEnJfLgAR_OmdbHSH27ZGRLiBy3NbOwnRzKm2ATO5MflXpJmP2eSEHq8y3mqeXJ37GQC8v6MMiMIPPA3cpVu-vuJ0peMgaecB9f2dNvl_xFhAeQBW9uwnql3n0eI/s1600/IMG_8709.JPG" height="320" width="240" /></a></span></div>
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<span style="font-size: small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz0agumg0AQx5z30lgA-LqQxfXusQ_g0pkPhuhc8DqYw8hVCXIQJ-NFDVB0vkC5awEmxv6AWV1iHrSltYaF_Zh90-ju3LMwhoo6hjvGfIxbOGlR0TsAiB8qocs-UUYIiTnFlhliF90Jfg/s1600/IMG_8711.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz0agumg0AQx5z30lgA-LqQxfXusQ_g0pkPhuhc8DqYw8hVCXIQJ-NFDVB0vkC5awEmxv6AWV1iHrSltYaF_Zh90-ju3LMwhoo6hjvGfIxbOGlR0TsAiB8qocs-UUYIiTnFlhliF90Jfg/s1600/IMG_8711.JPG" height="320" width="240" /></a></span></div>
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<span style="font-size: small;">9. She loves Daniel Tiger, Piggie, Winnie the Pooh, Ponyo and many other endearingly sweet characters. </span></div>
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<span style="font-size: small;">8. She idolizes her sister.</span><br />
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<span style="font-size: small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4c3mL_lLOae0nq73lhGxd3461gfdKvBf3TrHqBuEJ5Qbq5fL4ll98d9BKj9bqm2UCT1Vdam0HkxAtZ0v3A_O7Nx3x7RiugYFOgREjsV3zYe1rPMisDCPcfVpagtIoGCXLnjAX55jcgYg/s1600/IMG_8900.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4c3mL_lLOae0nq73lhGxd3461gfdKvBf3TrHqBuEJ5Qbq5fL4ll98d9BKj9bqm2UCT1Vdam0HkxAtZ0v3A_O7Nx3x7RiugYFOgREjsV3zYe1rPMisDCPcfVpagtIoGCXLnjAX55jcgYg/s1600/IMG_8900.JPG" height="320" width="240" /></a></span></div>
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<span style="font-size: small;">7. She helps take out the garbage.</span></div>
<span style="font-size: small;">6. She likes to have her nails painted.</span><br />
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<span style="font-size: small;">5. How badly she wants to walk and how hard she works at cruising, climbing and taking steps every single day.</span><br />
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<span style="font-size: small;">4. She has surpassed every expectation any of her doctors or therapists have ever had.</span></div>
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<span style="font-size: small;">3. I watched her come out of my body when I gave birth to her at home and I was the first person to hold her and kiss her. </span></div>
<span style="font-size: small;">2. Her amazing manners: she says please and thank you without being asked.</span><br />
<span style="font-size: small;">1. She gives the best hugs of anyone I have ever met.</span></div>
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