Well, I Guess This Is Growing Up*

(*Thanks, Blink 182. Now that song is stuck in my head.)

Spring is here and it's supposed to be full of new life. So why do I feel so old? Oh yeah, because I am. 

This weekend was Bee's nursery school's spring fair. It's quite an affair that involves weeks and weeks of preparation. We were all asked to donate items to the rummage sale, bake and cook for the food tables, and volunteer to work shifts at the event itself. Between Johnny's 8 am shift setting up tables, chairs, games, rides, and booths, my early morning baking and frosting cupcakes with Bee, and my lunchtime shift selling tickets to Upper West Side moms and kids with fists full of cash while Johnny took the girls to the bouncy castles, the spin art, the ring toss, the face painting and more, we had some time to reflect on how we got where we are now. 

Exactly a year ago, Bee was 27 months old and we were not even thinking about nursery school. I was a new mom of two and I felt lost. We were still newish to our neighborhood and had no idea how to make friends for ourselves, much less for Bee. A high school classmate of mine was a lifesaver. A mutual friend re-introduced us because we didn't live far from each other. Her kids are a little bit older but those two years difference made her seem so knowledgeable and experienced to me. She invited us over for play dates, introduced me to other moms at the playground, taught me what to expect from my daughters as they got older. Incidentally, she was also the first person who said the words "Early Intervention" to me when I pointed out how, at eight months, Teeny was still not sitting up. Though I was immediately sick with fear when she said it, that she had the courage to was pretty incredible, and I will always be grateful. 

Exactly a year ago, this friend suggested we join her at this school fair. It's a fun day, she said. We loaded up the kids, walked across town, and met her family by the games and art tables. Bee wanted to do the face painting for the first time in her life, so she sat very still in my lap while one of the dads gave her a purple butterfly on her cheek. Meanwhile, my friend ran into a handful of other moms she knew and it was clear their kids knew each other and I felt like it was a club I was definitely not a part of.

I got a really nice vibe from the school that hosted the fair. I went home and checked it out online, suddenly worried that I'd made the wrong decision when I hadn't bothered with nursery school for Bee. We'd thought she was too young when the admissions process began the September before, but she grew quickly and I now felt she would be ready. I called them the next Monday and learned that they had a space. We went in to meet with the director and to take a tour. We loved it. And just like that, without engaging in an iota of the insane application process, Bee was in nursery school.

So last weekend, I was remembering all that as I chatted with other parents of kids in Bee's class. I worked the ticket booth like I'd been doing it all my life, taking people's money so their kids could do the face painting and play the games and ride the rides like we did last year, volunteering my time and efforts happily to earn money for the school so my kid can benefit from the financial aid that makes it possible for her to attend. A year later and it's a whole different world. I came up with six ways life is markedly different now from just one year ago.

1. I look 40. Parenthood has aged me more in the last couple of years than life did in the 37 years I lived prior to becoming a parent. Physically, I am different. My hair is grayer (which really means only that I dye it more). My body has changed. I have a permanent muffin top (or maybe a permanent unwillingness to do sit ups and pushups every day to get rid of it). My boobs are flatter. I'm still nursing, but the 38EE bras I bought when Teeny was born now slip on and off like camisoles. I went to get fitted and wouldn't you know, I'm back to a 34A. I have wrinkles now, and to keep them from getting worse, I put on lavender face cream at night so I even smell old. My eyes are deteriorating slowly. I wear glasses for distance, but recently I was doing cross-stitching while watching a movie and I had such a headache from looking down that I thought to myself bifocals would really help with this and then I thought who is this old person in my head thinking old people thoughts about bifocals? Hard to believe it could be me. But I can't deny it anymore; the cat is out of the bag about my age. When I'm buying a sixpack for my husband while food shopping at Trader Joe's, the cashier no longer cards me. Suddenly I am a target for online coupons for kitchen appliances, mortgage lenders and diamond jewelry, AARP newsletters, even cemetery plot advertisements. That last one would be funny if it weren't so horrifying. Careless and sometimes downright reckless in the first half of my life, every second of this second and final half is precious to me. I don't want to think about how this is a one-way journey.

2. I feel 40. My body is tired. I am used to working myself hard, but I am losing my mental elasticity. My brain hurts. Because the girls are getting older, I am sleeping somewhat better, but it's still not enough. I am still running and biking a few times a week, but it's harder. I can't be worried about improving my time because I'm just not going faster. My everyday look has come down a notch.  I go to work in flats (frequent) or worse, in sneakers (even more frequent). I have adopted the underslept Manhattan mama look of yoga pants and a pony tail, and find some solace in knowing that my tattoos and what's left of my attitude still set me apart from the others. 

3. I am done with babies. At 40, I've entered a new chapter of my reproductive story. I went to the gynecologist a few weeks ago to ask why I hadn't gotten my period back yet. I got it five months after Bee was born, so after 20 months post-Teeny, I was getting worried. The doctor worried me even more when she asked if I was getting hot flashes. (I am not!) I finally got my period a week later. That is, I think I did. When I saw it, I felt like I did when I was 12. Shocked. Excited. Nervous. And annoyed. It had been two and a half years since my last period - before conceiving Teeny. I forgot all about what cramps felt like, what havoc it wreaked on my emotions and my energy (to say nothing of my appetite). I was completely unprepared. I had long since stopped carrying an emergency tampon around so I had to resort to wadded up toilet paper. But then a day later it was gone, which left me wondering if I even got it at all. Maybe it was just spotting. Most different of all, that this means I'm not pregnant thought, at times in my life a relief and at other times a source of dismay, was only a fleeting one, mainly because it was immediately followed by Oh right. Paragard. Which was then followed by a twinge of sadness. Not that I want to have more kids. I don't. But my childbearing years are behind me and that's a weird feeling. 

At the fair last year, I was wearing an infant and carrying a toddler. I had big dreams for my kids. I didn't yet know about Teeny's issues. I was in up to my ears just juggling two under two and my whole life was about babies, babies, babies. Now, at the same time as I was throwing away the humungous nursing bras, I packed up a bunch of baby stuff to pass on to younger, newer mothers. I gave away a big bag of pregnancy and nursing books. We donated the glider and many of the baby carriers. We swapped the Moby and the mei tai for a Boba, a toddler carrier, and a new Maclaren umbrella stroller. We taught Teeny to drink from a straw, so I tossed a lot of the bottles and nipples and stocked up on new sippy cups. The pumps are gone and I do not miss them.  And best of all, Johnny and I both breathed a sigh of relief when we confessed to each other that we were done with cloth diapering. Together, we threw out every last Bum Genius. Three years of washing our daughters' shitty diapers every single day was plenty and even though neither of them is potty trained yet, we couldn't stand it another second. 

4. The girls are growing up. These days Teeny is into cleaning. She picks up burp cloths and pretends to wipe the table, her mouth, her nose. She has a fairly impressive attention span, probably because she isn't yet walking. Instead of baby toys or plushies, we buy her art supplies, toy cars, tea sets, and colorful things with buttons to press, tags to pull and other nooks and crannies to explore. You can plunk her down and she'll stay for a while, playing by herself, investigating, learning. 

Bee is maturing in ways that surprise me. We try to talk in as unbiased a way about gender and sexuality that we know how. We want her to come to her own conclusions about her own gender and sexuality but it's hard to know what that looks like for a three-year-old. She seems to grasp the concept of gender in an innate sort of way, and I find myself wondering what assumptions I bring to the conversations that she picks up on. She knows that mama is a girl and daddy is a boy, but she doesn't quite know why. She just knows. She knows who of her friends are girls and who are boys, but when pressed, she cannot state the difference between boys and girls even though she knows that boys and girls have different body parts and that mamas are girls and mamas make milk but boys do not. Everything that is gendered in life is female to Bee unless she's told otherwise. This makes me smile - how the world has changed from when I was young. All of her toys are girls by default, even those with boy names. Alternately, her sand bear was definitely a boy before she dropped him on his head, breaking him and spilling the sand everywhere, but she had named him Charlotte after her best friend at school. 

She's developed such an intense crush (at age 3!) on our garage attendant that I was starting to worry.  "I like Lou," she says over and over. "Mama, I really like Lou." When he's not there, she's devastated, and when he is, she's over the moon. It takes us forever to get our car sometimes because she's so busy flirting with him. And then, just as I was trying to think of how to tackle that one, two seconds later she added "And I really like Mickey Mouse too," and I felt much, much better.

In other ways she's such a baby still. She doesn't quite get the concept of growing up. When something is too small for her, she tells me she will wear it again when she gets smaller and it fits her again. She dawdles. Oh man, does she dilly-dally. Especially when I am in a hurry. Then she's like molasses, and me rushing her does nothing but make her slower, and me homicidal. 

When I was little, my parents gave me the Triboro Bridge. I don't remember how that happened but I remember growing up knowing it was my bridge. Since that is the bridge we take most frequently as both sets of grandparents live in Queens, I gave that bridge to Bee when she was a baby too and told her it was hers. This is a story she wants to hear every time we cross it, so, still somewhat confused, she now she tells everyone it's her bridge and that mama gave it to her when she was a little girl and she will give it back to Mama when she gets bigger. She has also made it her business to assign every bridge in creation to someone we know, so if you're reading this, there's a good chance there's a bridge out there that Bee thinks is yours.

5. My girls act like siblings. They actually behave like sisters now instead of one toddler and one lump I mean baby. Despite Teeny's challenges, we definitely have two active, competitive little girls in the house. The girls spend more time now fighting over who gets to sit in my lap, snuggle with me, or be carried by me than they do anything else. And Bee is a big sister in the best and worst ways. Protective and loving of Teeny most of the time, I heard her telling a complete stranger on the subway platform that "Teeny doesn't walk yet. But she will!"  On the other hand, she also doesn't hesitate to snatch something from her sister's hands or shove her if she's blocking her direct path to Mama or to a particularly coveted toy. What simultaneously amuses me and breaks my heart a little is that Teeny is now no longer oblivious to the inequity inherent in being the little sister. She may not be able to fight back, but she sure can wail. I find myself saying such cliched things: Bee, share with your sister! Give it back. These moments are wonderful even when they aren't, because I am thrilled to see them act like normal siblings. Even better are the interactive play moments that are slowly becoming more commonplace. 

This coupled with Bee's new adventurous vocabulary provides us with endless entertainment. Bee's favorite words are "even" and "actually." She uses them all the time, rarely correctly. "And even," she'll begin, "I want to go outside on my bike, actually." Another time, in the car: "We are almost at Nana and Papa's house, you know. And even, when I get there Nana will take me to the park, actually." 

About a week ago I got a text from Johnny while I was at work, in a meeting. I snuck a peek at my phone. "I just got kicked out of the girls' room," he wrote. "Bee said, 'Get out, Daddy. Girls only. We're dancing,' and slammed the door in my face." I laughed out loud, and my heart warmed for little Teeny, included in her sister's imaginative games like any little sibling might be, until the next time her big sister turned on her again. 

"That's not cool, Teeny!" she said when Teeny wanted to play with Bee's Leap Frog laptop one afternoon a few days later. I tried to negotiate the sharing and felt my patience dwindling. I opened my mouth to argue with them and was cut off. "Slow down, Mama," Bee interrupted, wise beyond her three years. "It's all o-tay."

What am I forgetting? What does growing up and into your older self look like for you?  Let me know in the comments.

A star is born

Because I want to preserve this cuteness for all eternity, here's Bee singing an alphabet song she learned on Sesame Street. You're welcome.



Here's Grover doing the same song (starts at :28). Even though he's ready for Saturday Night Fever, I think Bee gives him a run for his money.

Nostalgia For The Future

This weekend I tried to sync my phone and I couldn't because it was too full. I couldn't even update my podcasts because of all the pictures and videos taking up space. I had to pare down. But how to decide which ones to delete? I plugged my phone back into my laptop and backed everything up on iPhoto. But I couldn't actually bring myself to delete anything from my phone. What if I had a few minutes on the subway and wanted to look at pictures from when Bee was eleven months old and we took her to the Met that one time in the rain when she wore her purple boots? I just wasn't ready. It took me another two days to start going through them all. I had more than 2300 pictures and videos of the girls. I ended up looking at all of them. "Awww!" I cried. "Johnny, remember this? Come look!" We spent hours watching the videos, laughing, remembering how tiny Bee once was. Hard to believe. She's talking in complete sentences now, so it's incredible that barely a year ago she still spoke in single words and short phrases. She was so little, with such fine hair and soft curls. Pictures of me, hugely pregnant. Pictures of Teeny, newborn. She was stunningly beautiful, her birth gentle and peaceful and perfect. She was a new life, so full of hope. Big dreams, big potential. A big future. Big sigh. We put the phone down. Our photo fun was over.

At work, my direct reports and I do Book Club. We read books on management and leadership together and we meet every week or so to talk about them. Recently, we read a book called Linchpin by Seth Godin. The book talks about how to make yourself indispensable at work and in your career. It argues that we are more than cogs in a wheel; we are artists and the art we create is a gift. It talks about how to develop your creativity and how to turn your work into art. What struck me the most in the whole entire book was one part in particular. And it struck not me-as-boss or even me-as-writer. The part of me that was tearing up as I read this leadership book for work was the me-as-Teeny's-mama. The passages that follow in italics are right from the book, page 203:

For many of us, the happiest future is one that's precisely like the past, except a little bit better.

Reading this on the subway a couple weeks ago, I was suddenly wide awake. I sat up and whipped out my yellow highlighter.

We're good at visualizing this future, and if we think it's not going to happen, we get nostalgic for it. This isn't positive visualization, it's attachment of the worst sort. We're attached to an outcome, often one we can't control.

I swallowed hard. This described me at my very worst. I'd never seen it put into words before, and here it was. I thought of the many times in my life I had been completely undone by nostalgia for the future. Like the time I was dumped by a boyfriend I now laughingly refer to as "the meathead." For so many reasons, this guy was not the one for me, and deep down I knew it. He was smart and motivated and funny, yes, but also completely fake - saying one thing emphatically to me and swearing up and down to someone else that the opposite was true. I hated his music, his politics, his work ethic. He hated my social activities, my determination, the way I questioned and debated everything. We fought a lot. But he broke up with me first and all I could think about was back when we first met, that honeymoon phase in which he could do no wrong. Back then we had so much potential. The relationship was rife with possibility; we were just getting started. In our early days, we'd fantasized aloud about marriage, kids, a home and a life together. A year later and we were done with each other, both of us well aware that we were not a match. He was ready to cut the cord and move on, but I could not get past the fact that we once both thought we were in love. Why aren't we like this anymore? I asked myself over and over. Why can't we fix it? What did I do wrong? I'll work harder. We were there. Don't leave me - I know we can get back there! Even though I really knew we couldn't and that he wasn't the one for me. It was just so hard to let go of the future I had envisioned with him, even if I knew it couldn't ever happen.

And Teeny. I carried what I thought was a normal, healthy baby girl for 39 weeks. When she was born, she looked perfect. (She still does.) When she was less than a day old, I held her in my arms and talked to her -- like I did her sister. I told her how much we wanted her, how loved she was, how her whole life was ahead of her. I told her about all the things we would do together, how much in the world there is to explore, to see, and to do. I told her about school and work and travel and love and sadness. I read to her from my favorite book in the world, The Phantom Tollbooth, which teaches just how much there is to do in life if only you put your mind to it.

If you had a chance to remake your life with a wish, what would you wish for?

Of course I wish that Teeny didn't have cerebellar hypoplasia. I wish she had a normally developed cerebellum and pons, like everyone else. I wish she could walk and talk with the ease that other children her age now do. I wish that at barely nineteen months of age she didn't have the busiest schedule in the family. I wish we didn't spend so much time in hospitals and doctors' offices that it makes an impact on Bee too. When we visited the Please Touch Museum in Philadelphia this weekend and walked through the pretend hospital section, I wasn't the only one horrified by the pretend MRI machine. Really? I thought. This is supposed to be fun? But instead, I said, Look, Bee! Wanna play here?

No, she said simply and firmly, walking right past the hospital to the pretend supermarket. I wanna go food shopping, she said, and muscled her way over to the child-sized shopping carts and began to pile one high with produce.  But I was still stuck, back there by the pretend MRI machine. A child lay on his back, sliding into it, while another donned a white coat and peered somewhat doubtfully into the apparatus. There were young children placing baby dolls on stretchers, listening to their heartbeats with toy stethoscopes. This was not fun for Bee, and I couldn't blame her.

There is still so much potential for Teeny. I know that. I know that the things I talked to her about when she was brand new are not impossibilities. But her life is already not the one I planned for her. What's crazy is that I think the future never really happens the way we want it to, right? And yet, grappling with the nostalgia for a future that will never happen the way I wanted it to - even if I know it never would have anyway -- is the absolute hardest part about this whole thing for me.

If I could remake my life with one wish, it would be that this were not such a huge part of our lives.

The stressful part is the hoping. Hoping against hope that your plane will arrive, that you won't miss it, that your seat won't be given away, that you won't crash, that you'll land close to on time. Hoping that the surgery will turn out okay. Hoping that your boss won't yell at you. All of this is nerve-wracking for many people. 

Do you ever do this? It is so me. Embarrassingly so. Running late for a meeting on any given day, I am on my way to work. I am sweating bullets, pulling at my hair, squirming in my seat on the subway. Whether I am late or not, I have a half-hour train ride, and bouncing up and down like a four-year-old needing to pee isn't going to change the fact that it is still a half-hour ride. Then I still have a ten minute walk from the train, resisting the urge to text my coworkers like crazy saying "I'm almost there! I had the worst morning ever. You wouldn't believe what happened. Okay, in the elevator now, I'll be right there!" I can not possibly get there any faster. I may as well relax and listen to music, read my book, review my notes for the meetings I have that day, or just close my eyes and enjoy my commute. But no. I am twisted in knots, driving myself crazy, worked up into a frenzy, as if this self-torture will exonerate me from my tardiness. It's insanity. And yet I do this with everything. I am the busiest, the harried-est, the stressed-est. But why? There's no competition I can win. The juggler with the most balls in the air when she dies doesn't get anything but an early death. People tell me a thousand times a day, "I don't know how you do it." And honestly? I don't either. I'm not enjoying myself. I don't want to pile on the responsibilities, the stresses, the obligations, because it's not going to make Teeny any better. And yet why does admitting that my life is overwhelming feel like I'm admitting I'm a failure? Why does coming right out and saying I cannot do everything feel like I therefore cannot do anything?

And the reason is your nostalgia for the future. You've fallen in love with a described outcome, and at every stage along the way, it appears that hope and will and effort on your part might be able to maintain the status quo.


Boom. Propelled forward by this notion that if I just hope it hard enough, will it hard enough and put enough effort into her recovery, I can fix Teeny. That if I will her hard enough to walk, if I send her to enough specialists, get her enough therapy, her brain will heal and she will live a normal life. But that is as useful as banging my head against the wall.

A few weeks ago, a good friend who is struggling with special needs parenting issues of her own said to me, "I can't imagine doing this forever. I want to just fix it and be done with it. I can't imagine still going through this when my son is six or seven."

I don't really know what the prognosis of my friend's situation is, but I do know that someday, Teeny will be six or seven and her struggles will not be over. I don't know what those struggles will look like, but I do know that her life will not be the one her father and I envisioned for her when we held her as a newborn. She will be sixteen or seventeen someday, and she'll be struggling then too. And she'll likely still be struggling at sixty and seventy. I know this, but I don't know why it matters. Bee will likely be struggling too. So what that Teeny's struggles will be different? That doesn't mean that they will be harder or worse. It's unknowable and there is nothing in the world I can do to know it except wait. Do the best that I can for her every day just like I do for her sister, and that's it. Hearing my friend was like hearing Teeny's voice in my head telling me, Mama, I need you now. Stop trying to fix everything. I'm here now. Enjoy me now. Love me now. Today.

It's been a long six months since the MRI revealed what it did, since we got the preliminary diagnosis, since our lives changed forever. I am still sad. Looking at her newborn pictures, unable to delete them to make space for more, I thought about how little I knew then. If only I knew then what I know now, I'd... what? What, indeed? I have no reason to feel any differently now than I did then. Teeny's whole life is still ahead of her. Teeny is happy. Why shouldn't I be happy too? Her arms are getting stronger, so her hugs are getting tighter. Her laugh is louder. When she is excited, she claps and yells "Yeah! Yay!" She says mama all the time now, murmuring mamamamama as she hops across the floor to me, pushing herself back into a W-sit and holding her arms out to me. Mamamamamama she babbles, crying if I don't pick her up fast enough, pulling herself up by my shins, my knees. If I acknowledge her and walk past, she puts her fingers together over and over, frantically signing more more more. More mama. More love. She puckers up and leans in for kisses now. They are wet and sloppy but they are delicious.

So I am letting go of my nostalgia for the future. I know grief is a normal part of the process, but enough is enough. I don't want to be crippled by what will never happen and what might never have happened anyway. I keep reading that most of the things we worry about never come to pass, so I know deep down that the future I envisioned holding my newborn baby is as unlikely to happen for Bee as it is for Teeny just because nothing ever works out exactly the way you think it will. And what do I really know, anyway?

I know that so far, parenting has been a lesson in admitting that I have control over absolutely nothing.
I know that I have two beautiful and happy daughters.

I know that Teeny has everything she needs for today.

I know that her daddy, her sister and her mama would do and are doing everything they can for her, but also that there is nothing any of us can do that will fix her.

Maybe Teeny doesn't need fixing.

I am slowly beginning to understand that I can't fix this. Not because I'm not good enough, but because it's just not fixable. Teeny isn't broken.

What I can do is focus on what needs to be changed in myself instead. I am more present for her now and within moments of realizing that the best thing I can do for her is be here now with her, I found myself falling more and more deeply in love with her. No amount of will or of effort can maintain the status quo. There is nothing I can do to preserve my memory of the past or force the future as I envision it because in fact, there is no status quo. Teeny already had cerebellar hypoplasia when I held her as a newborn. I just didn't know it. So my truth is what needs changing, not hers.

This morning, I had a few rare moments with Teeny all to myself. Her early morning therapy was cancelled and Johnny took Bee to school. She and I hung out in our pajamas and I fed her the special cereal concoction I make for her every morning (these days it's gluten-free Peanut Butter Puffs with flax meal and ground walnuts in rice milk) and we sang her favorite song. Bee calls it the "Teeny do-do-do-do-do-do" song, but you probably know it better as Sugar, Sugar by the Archies. We sing Aw Teeny, do-do-do-do-do-do, aww, Teeny Teeny... you are our Teeny girl and you got us lovin' you... and she dances and claps with delight.

We danced around as I changed her into a summer dress and stood her up in front of a mirror. Teeny loves mirrors and so do we. Mirror play shows us that Teeny knows who she is and that she is separate from us, which is an age-appropriate milestone. She points at herself and says "ba" for baby. She points at me in the mirror when I make a silly face. I sat on the floor and held her in a standing position by her hips while she and I stuck out our tongues and blew raspberries and pointed at our reflections. We sang Sugar, Sugar again with our own words. We laughed together until her legs buckled and she put her arms out for me to hold her. I held her tight and she held me tighter. Mamamamamama, she murmured. I breathed her in and felt present with her in the moment, just holding her and loving her for who she is right now. So maybe it's safe to delete some of these pictures. I want to make space for new ones anyway.

The Sacred and the Profane

Being the parent of a special needs kid sometimes - at least for me - means just being a parent. We do a lot of the same, run of the mill, everyday things with Teeny that we do with Bee and that I bet you do with your kids.

We listen to a lot of music. Both Teeny and Bee have their own special songs. Our current Teeny favorite is the old Archies' track Sugar, Sugar. Can you hear it? We sing her name: "Aww Teeny, doo doo doo doo doo doo, aww, Teeny Teeny, you are our Teeny girl!" We sing it so often that Bee wanders around humming it absently. We also turned Mellow Yellow into a Teeny song. "They call her little Teeny... Her name is Teeny-Weeny..." No one in our house is exempt from getting their own song, not even the stuffed animals. Johnny makes up his own lyrics to dance songs he likes and Bee grabs her dolls and dances around clutching them by the neck while she and Johnny sing Mickey Mickey Mouse rocks the house along to some silly 90s dance song by Shannon or Technotronic. Johnny pulls lots of music out of his own childhood, just like I do. I offer Free to Be You and Me, Dr. Teeth and the Electric Mayhem, and I Love You A Bushel and a Peck; he offers Stop That Pigeon and Eep-App-Ork-Ah-Ah Means I Love You. Lucky for us, Teeny and Bee love both. It's adorable.

We make art together. We tape easel paper to the walls and let Teeny draw with big, thick crayons. Bee paints with watercolors and fingerpaints. She draws with markers and pens. Sometimes she does all of this at once, making a huge mess, and Johnny calls it "mixed media." She can write her name and a few other words perfectly, but she prefers to write her letters and numbers on her Brain Quest write-and-erase sets or scribble with a black marker in a notebook and call it her shopping list. On Bee's birthday a few weeks ago, the four of us went to the Children's Museum of the Arts, and while Bee bounced and screamed in the ball pit with Daddy, Teeny and I made collages and watercolors. I painted her hands different colors and she went to town smearing vivid handprints on paper, creating some really beautiful keepsakes for me. I collected them all and couldn't wait to go back to do more. Bee and I went this past weekend with some friends and we made paintings I could see framed in my office or my bedroom, but of course I set them down to dry while we had a snack and put on our coats and I didn't remember them again until we were in the car on our way to New Jersey later that afternoon.

We go shopping. We usually drive to a mall outside the city. The urban pandemonium of two kids in one stroller on a crowded subway going from store to store with diaper bags and bags of groceries and whatever else is more than my tired brain can stand. The suburban friends I have tell me they never go to malls, but malls don't really bother me. One stop shopping, especially when they're near a Trader Joe's or a Whole Foods with a parking lot. Not that we don't enjoy walking and window shopping in the city though. A few weeks ago we went to FAO Schwarz because we had a gift card. We got a Corelle baby for each kid. I never had one as a kid and yet their baby powder smell took me back at least 35 years. I'm not sure who loves those babies more, the girls, or me. For Teeny's baby, we got one of those little bottles that looks like it's full when it's upright and empty when you tip it. Bee picked out a little pink plastic potty for her baby. She had to have it, but unfortunately it gets about as much use as the lonely little potty we have in the bathroom. (We are currently NOT working on potty learning.)

We take baths. Teeny was born in the water and just loves getting wet. Pools, showers, baths. You name it, she loves it. Now that we have a seat for her, she loves bathtime even more. Johnny blows bubbles and if I make it home from work before bath is over, I sing the bubble songs. Bee pours us imaginary cups of coffee and Teeny grabs and shoots water from a dozen squirt toys. They play together beautifully. Bathtime is really fun.

We watch movies. Seriously, I'm not a TV person yet I'll freely admit that the PS3 is our most valuable possession. Where would we be without Ponyo, Kiki, Totoro, Cinderella, the old school series of Sesame Street, The Muppet Movie, Peter Pan, Finding Nemo, Monsters Inc., Alice in Wonderland and our Baby Signing Time video? Early mornings, when the kids are up before dawn, pre-coffee, pre-shower - when Johnny is a total zombie and all I can do is smell his morning breath and panic about how much I have to do and how tired I'm going to be all day - that is when these movies save us.

We buy Disney stuff. Yes, yes. I know. After the first time I went to Disney, a coworker shook his head at me. "How the mighty have fallen," he mourned. (And I can't wait to go back!) We keep it to a minimum. Still, the tamer Disney movies have made it into our lives and Bee loves Mickey and Minnie best of all. At the Disney outlet store this weekend I picked up a cheap pair of Minnie Mouse rain boots and she was so excited about them she wore them in the house with nothing but a pull-up diaper and pajama top. She would have slept in them if I hadn't pulled them off her. And no, of course it wasn't raining.

We apply to preschool. In this way, we aren't any different from most New York parents I know. Sometimes I can't believe this is life; this kind of insanity was reserved for college when I was growing up. Applications, open houses, interviews, financial aid, wait lists, acceptance letters, schedule negotiations, contracts to sign and checks to write. For preschool! And after months of stress, waiting, and wondering, we're done: both girls are in and our spots are secure. Since the research indicates that quality preschool can actually boost IQ points, we feel that in a part-time nursery school setting may be able to stimulate our social little Teeny's mind in new and exciting ways. Of course we are scared to death to leave her with other people for any length of time but we're hoping we'll feel differently about that part by September.

We sleep (or rather, we don't). With our attachment-parent-ish leanings, we just don't get a ton of rest. We nurse, we co-sleep, we play musical beds. My husband ends up on the couch - which does not pull out into a sofa bed -- more than either of us would care to admit. Just as people assure me that Bee will not go to college in diapers, I remind myself that no matter what happens with Teeny, when she is a teenager, she won't be waking up to come into bed with Mama two or three times a night. This too shall pass. And somehow, in the past two weeks, they have both begun to sleep better -- just a touch better -- than they were before. Teeny goes down at 7 and Bee not long after, and about six of the last ten nights they stayed asleep until the sun came up. Of course I take that to mean that with fewer interruptions, I will be better rested, so I've been pushing myself to work until midnight or later. Not a good idea. Even without babies waking to nurse, if I go to bed at 1 and wake up at 5:30 or 6, I am, essentially, the walking dead.

We go on playdates and to birthday parties. Last week Bee's best pal's mom asked if she could pick her up right from school and take her to their apartment for the afternoon. Bee is an early napper, so we expected a call no more than an hour later. Instead we got photos of the girls holding hands, of them hugging. We got a text: "They're napping." Wait, they're what?! At four o'clock Bee came home, all smiles, and the mom was willing to do it again. Two weeks ago we went to Bee's first classmate birthday party and I brought Teeny with us. It was at a kids' gym and I figured she could romp around too. She climbed and crawled and tumbled and had so much fun. Best of all, no one asked me anything about her. For an hour and a half I got to just enjoy the awkwardness of being there with my three year old celebrating the birthday of another three year old, standing around with a bunch of other parents of three year olds, making small talk about preschool. If anyone suspected anything was going on with Teeny, no one knew me well enough to ask. This was the best and most normal awkardness ever and I reveled in it.

And so on and so on. Sometimes we're just like everyone else.

And then of course, there are the rest of the times. We have ten therapy sessions in the apartment per week. We have an average of two to three hospital/doctor visits per week. There is no end to the calls: research, insurance questions, negotiations. Reading articles and books. Asking for help. Just in this past week I asked for (and expect to be denied) SSI and I applied for a handicapped parking permit. With some shame, this week I also completed a request for financial aid for the local YMCA. Membership is $102 a month that we just do not have on top of everything else, and we are asking because they have a pool with family hours. Aquatic therapy, at $180 per half hour session at a pool on the Upper East Side, could work wonders for Teeny, but is well out of our price range even with a prescription and even if I could find a way to get our insurance to reimburse us at the out-of-network rate. But we figure just getting her in the water could be helpful. Still, I don't forget that many of our neighbors are hurting financially more than we are. My hand skated over the list of checkboxes on the financial aid form asking what types of federal assistance the applicants receive, instead writing a few paragraphs about Teeny and her needs. I've gotten the courage to ask for -- and accept -- a lot of help in the past six months, but I don't have the guts to hand this application in myself. I'm making Johnny do it.

That is the tough stuff. It's hard hard hard. Sometimes I don't know how I do it. People say that to me that all the time. I just shrug. You just do what you have to do, I guess. But I can't do it alone. My head spins a thousand miles a minute, hurtling me into the future of What-Ifs and If-Onlys and it makes me feel that there is no such thing as doing enough. And that makes me crazy and sad and helpless. I see why special needs parents become religious. I see why there are support groups. I bought a book called Shut Up About Your Perfect Kid Already and wanted to love it (but it was so poorly written I couldn't make it more than a few pages). Religion never worked for me, the support groups are by and large for parents with kids on the spectrum, and I am too busy to read crappy books by whiny moms. None of these make me feel included. Even the CH support group, wonderful as it is, isn't always helpful. I got a private message from one of the moms recently asking me why Teeny doesn't "look as bad" as the other kids there. Of course I hope she's right and that she isn't, but even then I couldn't help feeling a tiny sting that even here, me and my kid don't fit in.

My nature is to act. I am busy busy busy, and I want to fix everything, clean everything, organize everything, feed everyone, and order everyone around. It's as if I believe that the more I do the less I have to feel. In college I was attracted to men and women with big problems that of course I felt I had all the answers to; a classmate of mine and I used to joke that we were saving the world and starting with our boyfriends. At work I have to bite my tongue and sit on my hands to let my staff members come up with solutions themselves; it would be so much easier for me to just tell everyone what to do. But the biggest lesson I've gotten from being Teeny's mom is that I am not in control. There is absolutely nothing I can say or do that will change who she is and how she is. Sure, I can push her to do more therapy and more art and more music and more school and I can nag more doctors and beg for more discounts and negotiate with more insurance companies, and I accomplish a lot doing all of those things, but I'm not going to win a contest for Most Calls Made or Most Co-Pays Paid in which first prize is a brand new cerebellum for Teeny. It's not up to me. No matter how much I do and how badly I want things not to be this way, there will never come a morning in which I open my eyes and find that I have worked myself into having two daughters, each with a normal brain. It's just never going to happen. This is a kind of special I never wanted to be or to have, and you know what? It's lonely here sometimes.

Recently someone I've grown to love and respect told me to meditate. In my head, I laughed at her. Do you know how many times in my life I have tried to meditate? A lot. Every time I do, I fall asleep. I'm like the quintessential physics lesson: an object in motion stays in motion; an object at rest stays at rest. If I am not bustling around with some huge and terribly urgent project like reorganizing all the tupperwares or refolding all the towels in the linen closet, I am unconscious, asleep, K-Oed. Johnny hates watching movies with me because often before the credits have even finished, I'm snoring. I used to take a lot of yoga classes just for the last ten minutes. Shavasana literally means corpse pose, and that was me, dead asleep on the floor every single time. Last year I spent a fortune to go on a yoga retreat. In it, I went to every meditation class I could. I took it very seriously, hoping I would turn over a new leaf once out of my regular element. In the first class, I started to snore. I was so loud in the silent room that I woke myself up. The people around me tittered, clearly losing their concentration too.

So when this woman suggested I meditate - even for one minute a day - I scoffed. But then she told me two things. One, she said I might try to meditate using a mantra. Keep it simple, she said. Say over and over, slow down. Slow down. Slow.  Down.  And, she said, put your hand over your heart or a finger on your pulse. You feel that? she asked. Yes, I feel it. Are you controlling that? No, I answered. See? she said. You're not in charge. You can let go. You get to let go. This isn't about you and how hard you're working. You don't get graded on this. It's not your doing and you can't fix it. Just let go and slow down. And feel. 

This was truly the most profound thing I'd heard in years, and I do this now. I have an app that looks like a lit and flickering candle, and it has a timer. I put my hand on my heart and I feel it beating. I put a finger to my wrist or to my neck, and there it is, my pulse. I'm alive; just one of seven billion human beings, just one of seven billion miracles of evolution that I sure as hell can't explain. In high school, searching for relevance, there was nothing worse to me than feeling like just another brick in the wall, a tiny speck of nothing relative to the rest of the universe. But now, for one minute or five minutes or however long I can stand to sit there with my iCandle and my timer and not fall asleep, it brings me comfort. Slow down. Sometimes tears come. Slow down. Sometimes I feel pure joy, bceause Teeny is a beautiful child in spite of and perhaps because of her needs. Slow down. Some days I'm just not feeling it and I don't push myself. Slow down. It's not about me, I'm not doing it, I can't fix it. I'm not the only one who's hurting and I'm not the only mom who worries about her kids. I might be the only mom going through this particular thing that I know of right now, but when other people share their struggles with me, when readers reach out to tell me about their sister's or cousin's medical issues growing up, when I hear that completely different problems about work or family or money elicit that same insane fix-it response in some of my closest friends and colleagues, I know I'm not alone. While being a mama can really push these buttons for me, on my best days parenthood is the closest thing I've found to the sacred. I want to cultivate that feeling and be here for this crazy bumpy unknowable ride. Slow down, Mama. Just slow down.

On Writing and Thanking and Writing

I've had a notebook ever since I was old enough to write. For twenty years I have had a favorite kind. (I love the plaid Clairefontaine ones, medium sized. And there are only certain pens I like to use. Yeah, I'm fussy like that.) I always have one in my bag. Paper and pen help me clear my mind like therapy or a good cry. I get ink on my hands and callouses on the fingers that clutch the pen, and it feels like I've worked my muscles, as if I went for a long run. I've written my most secret thoughts down since I was a child. Like Harriet the Spy, it's a compulsion for me. Most of the time I didn't even know I was writing to figure things out. I write to remember. Much of my memory is in a foot locker in my bedroom, a real eyesore of a hand-me-down that my husband would love to get rid of. I can't reread the dozens of notebooks that are locked inside - it's too embarrassing and painful. Just looking at the various phases of handwriting - especially the big, round, affected teenage girl handwriting I taught myself - or flipping through one entry after the next about whatever crush I thought I'd pine for until the day I died makes my face feel hot with shame. But I can't throw them out either. That would be like pressing the delete button on 25 years of my experiences. It's all in there. Even when I knew my privacy was being invaded by people who just couldn't resist snooping, I had to write it all down. I related to Harriet on so many levels and read Harriet the Spy so many times I know whole chunks of it by heart. 

I switched to blogging about twelve years ago. I had just met Johnny and we were both pretty crazy. Crazy in love with each other, but also just plain crazy. He was 22, I was 28, and we were both all kinds of intense, unstable, and dramatic. I filled up notebook after notebook either raging about how much I hated him or waxing poetic about how in love I was. And I will confess now that I started blogging instead not because I wanted the world to know about all my personal goings-on but because typing on my computer instead of scribbling furiously in my notebook meant I could be utterly, self-indulgently, and virtually verbose at work too and no one would know I wasn't the world's busiest employee. (My work ethic has since improved considerably, for the record.)

The bad news about taking my dirty laundry to the internet back when blogging was just getting started is that the tools weren't that sophisticated, or if they were, I was not sophisticated enough myself to know it. There was no Facebook then, no Blogger or WordPress. It was even before MySpace. I was using LiveJournal, which was basically Drama Central for twenty-somethings at the time, and early adopter though I may have been, at the beginning I didn't know how to post "friends only."  I never censored myself because after all, it was my journal. You don't like what I have to say? Well then don't read it! I was never especially popular and I had absolutely zero self-esteem, so I didn't think anyone would care enough about what I had to say to bother with my ramblings. But I was wrong. My silly journal got linked around and people who should not have been reading were. I hate confrontation, so I didn't waste any time putting all my words on lock-down to avoid any more drama. 

After that, I blogged privately for a few years. But I have to admit that there is something appealing about letting it all hang out. When I write, I sort out my feelings. I figure stuff out and am able to move on. When I write online, I also feel like I've shared my thoughts and my life with everyone who owns a computer. It's a heck of a lot easier than talking, especially about the tough stuff. I'm not too good at that.  But I'm so in my head that I assume - often incorrectly - that people know what's going on with me, as though tossing my nonsense out to the interwebs was the same as meeting all my friends and acquaintances or coffee and a good heart-to-heart without having to actually open my mouth.

Recently my blog has been getting a lot of hits, and now I am promoting it on a Facebook page that I created just for this purpose. I do that partly to keep it separate from my personal Facebook page; I have new readers who don't know me personally. But even more, I'm secretly (and now, not-so-secretly) hoping that some neurological expert will read about Teeny and will offer up a simple solution to all her medical problems, or that some wealthy reader will want to be her benefactor (okay, or my sugar daddy), or that some hotshot agent (who has nothing better to do than read some working mom's online diary) will discover me and want to publish my sure-to-be-a-bestseller memoir. But I don't want to have to say any of this out loud because it's asking for too much. I want the universe to just know.

Two weeks ago someone was frustrated with me and lashed out with a very judgmental comment about the kind of person I am. We were having a conversation in which I did ask for help, and I was instantly sorry I had. I felt like I'd been slapped in the face. She basically said that I was the type of person who would impose upon others without a second thought, just expecting that they would drop everything to help me. She was, in my opinion, entirely off the mark, and I was pissed off. Even more, I was hurt and defensive. I promptly proclaimed to one and all that I would never ever ask anyone for anything ever again and fled for home, in a tornado of self-doubt. 

But no. That isn't me, and I know it. It's hard for me to ask for help. Over the years I've developed a strong sense of pride and I'm fortunate to be able to support myself and my family with little help from others. I am 40 years old. An adult, a spouse, a parent. I shouldn't rely on others and I put a lot of pressure on myself to do and to achieve so that I don't have to. But it takes a village, right? I don't ask for much, so when I do, the people who love me usually know that I really, really need their help.

I am far more courageous and honest online. I'm able to share my highest highs and lowest lows, when doing so in person makes me feel like I'm alternately bragging or complaining, or worse, hinting that I need something from someone. In person, it's easier to say very little about myself. I talk a lot, sure, but not always about anything very substantial. 

I know it's a little crazy that I would rather blog than confide in a friend. Even I think it's odd that I am a completely introverted oversharer. It has gotten easier over the years - certainly having taught high school made it much easier. I often tell people that once you can stand up in front of 25 teenagers and get them to listen to you, you can talk to anyone about anything, and it's really true! Even so, I still have to give myself a pep talk when I walk into a room full of people and convince myself to talk to at least two people or to introduce myself to someone I haven't met yet. It's even harder for me when friends and family ask me how I'm doing. And the weirdest thing is that I have trouble updating people - even those I really love - about my life before I've had a chance to write about it.

On the other hand, I don't usually think about the fact that sometimes people I work with, neighbors, casual acquaintances and Facebook pals are people who read my blog and have access to very, very personal information. They read my thoughts and my fears, my successes and my struggles. And I know I'm putting all of that out there, but at the same time, I am essentially a very private person. I generally don't bring up Teeny's issues unless someone asks me about her, and I certainly don't blab to everyone I see about all the challenges in my life. But oh yeah, I was the one who invited the world into my diary. I want you all to know. I just don't want to have to tell you. That part is too scary. 

So imagine how I felt when two of my coworkers set up a surprise fundraiser to cover the cost of Teeny's genetic testing I wrote about here. I know these two women professionally and to a lesser extent, personally. I have tremendous respect for them as animal advocates and as moms of young children. I was vaguely aware that they read my blog but I am really not able to gauge people's interest level well - seems there are some really dedicated readers, and at the same time some of my very closest friends and family members are not readers. 

Anyway, these two women worked fast. They spread the word far and wide before I even knew what was going on. The email they sent me on Thursday morning tipping me off sat in my inbox for hours before I had a chance to read it. When I did, I was standing in someone else's office in another part of the city. I was just scrolling through emails on my phone and I was caught completely off guard. Absolutely stunned, I didn't know whether to laugh or cry -- or throw up. I felt so grateful. And I was terrified. I worried that people would think I put them up to it, or that no one would want to contribute. Worst of all was that I had no idea how to react. I wanted to protest. I wanted to apologize. It was one of the nicest things anyone has ever done for me and I felt completely undeserving. For me, feeling needy is just about the worst sensation in the world. I hate thinking I can't do everything by myself. But I can't. I do need help. And these women wanted to help. So I just said thank you. And then I needed to write about it. 

If you're one of the nearly 150 individuals and families who participated and contributed so far, thank you. In three days you achieved 150% of the original goal and there is still more coming in. My jaw dropped time and time again when I saw how many people pitched in to help. Friends, neighbors, colleagues, acquaintances. The president of the non-profit I work for. Board members. Friends' parents. Some of you helped when I know perfectly well that you are struggling yourselves. Again, I thank you. And if you're someone who wanted to participate but could not, thank you. Maybe you're one of the people who reposted the link so others could read about Teeny and contribute. That too is a tremendous contribution. If you are a friend to our family who has lent a hand by calling, texting or emailing to check in knowing it's likely that I won't reply right away, by sharing your story or your child's story with me, by hanging out with us talking about politics, movies, the weather -- anything other than cerebellar hypoplasia, by playing board games with us, by dragging me out for coffee or a manicure or just a walk, thank you. My family thanks you all. One day, I know Teeny will thank you. We promise to honor your gifts, which are supporting us in so many ways. Your gifts are covering the genetic testing I wrote about last week, and even more. More of our once-impossibles are now-possibles, thanks to you. Every gesture feels like a hug, a vote of confidence in my ability to lead Teeny and our family through this. So please stay tuned. This kid is capable of big things. I just know it. And I'm gonna write about it. 

Maybe one day Teeny will write about it, too.