The Essence of Freyja

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. 

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.

Freyja is almost six. She is about to start kindergarten in our local public elementary school. She is no longer Teeny. 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 am Frey-ah."  

She does occasionally let me call her peanut now. She's still diminutive and adorable, so I insisted
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 peanut. She tolerates it and responds to it and reminds me often that she is a really big 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.

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 can do it by myself, 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 Spy 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.

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.

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 child with PCH2A 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. 

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. 

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, if 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. 

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. 

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 totes adorbs 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 that 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 no 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, alive. 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.

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. 

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 is 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." 

All this uncertainty is a part of Freyja's essence, and Freyja's essence is a part of the world. She is, 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.

Teeny Tiny Communique

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. 

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:

• I don't want to medicine. 
• I don't want to underwear. 
• I don't want to bathtub.

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:

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!

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. 

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:

• I want to red lipstick!
• Can I do Sharpies? Only on the paper, I promise, Mama.
• I want to ice skates. 

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: 

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.

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:

Can I sleep in your bed? Well, but I'm sick. I'm still siiiick! Mammaaaaa I don't want to own bed.

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:

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!

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.

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.

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?" 

Because, she said, you didn't go in potty with me and then we leaved.

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. 

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.

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:

• What Dada and Bee doin'? Let's go check it out!
• It's broken, Mama. It's not working.
• Look, my booty's hanging out of my pants!
• Ummmm I don't think so.
• Give me your phone. I want to see pictures of Teeny.
• Hey! I'm not talkin' to you!
• Maybe later. Leave me alone. I'm busy!
• You can't find it? Aww. That sucks.
• Let me think about it.
• Mama, I have to pee. Really really now!
• Can you give my mermaid ponytails please? Thank you!! (Two seconds later) Can you take out her ponytails now?
• What the fuck?
• It's morning time and I'm awake! I don't want to sleep anymore. Can I have my iPad?
• Can I stand up on the chair? (And then, after being told 100000 times that it's not safe): It's totally safe, Mama. 
• 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.
• Wait! I'm not strapped into my wheelchair! 

And so on.

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!"

Start Spreadin' The News... Part Two

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 here, and this part was like saying Teeny's name:

"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. 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. "What we now understand is what that cerebellum is doing to movement, it's also doing to intellect and personality and emotional processing." 

This re-ignited my spark, so I started calling and emailing again... and finally, finally, 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 doesn't 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 are 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. 

And what he said was that Teeny has genetically caused pontocerebellar hypoplasia.

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. 

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.

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.

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.

Which is exactly what we knew all along.

FOR TEENY, WHO HAS PLENTY OF TIME

To my beautiful, courageous, determined Teeny on your third birthday:

This week I spent some time researching elementary schools for you. I know you are just starting at your current school, but you know I'm a planner and I like to do my homework. It was ultimately an exercise in futility, but a happy one. I realized I just couldn't know how much you will grow and where you will be in two years. You could be anywhere, doing anything! Today in the hallway at your school, someone I didn't know stopped me to tell me how smart you are. "You know," she began, while I wondered who she was and how she knew you, "she's bright and engaged and cognitively right where she's supposed to be," she said. "I can tell. She just needs a little help is all." I beamed. Because really, who doesn't need a little help? Reading about schools, I tried to imagine you at five or six. I pictured you in elementary school, learning to read. Doing math. Studying history. Making shoebox dioramas. Walking. Baking cookies with your sister and me. Whatever kids do. Someday, you will do all those things, and more. I know it.

Two years ago Daddy and I were just learning about your neurology. We were scared and sad and we just didn't know what it was all going to mean for you and for us. But you were unfazed. You did what no one thought you could do: everything. You rolled over. You sat up. You huffed and you puffed and you pulled yourself to a stand. You said Mama. Dada. Bee. And now, on your third birthday, you're in school. People ask you how old you are and you shout "three!" You count, you sing the ABCs. You like to do everything yourself. "I do it!" you say a thousand times a day. You climb all over everything, trying your best to walk. One day, you will. You speak in sentences and you always say please and thank you. You ask questions that start with what and why. You laugh with us, chiding "be nice!" when we run out of patience or get silly. You're constantly announcing "have to pee!" and every time, we all stop what we're doing and hurry you to the potty. Some of the time you don't even have to go. You just like to sit there with us and have us read potty books to you. You smile wide and hand me Time to Pee or Everyone Poops and I know I've been had. But you're having fun! Nowadays, your language expresses more than just wants and needs. We hear you interject "oh wow!" and "awww, silly Mama!" and "oh no!" into conversations and we know that you're listening and we know that you get it.

Daddy and I stayed up late last night, baking cookies and cupcakes for your school birthday party, talking about how magical you are. You are our guide, our teacher, our shining star. Your daddy always says that you might look like him but you have my determination. I am not sure that's true. Yes, I'm a hard worker and I have tenacity. Just like you. Yes, I get things done. Just like you. He may never tell you this, but your daddy is a tough cookie too. He is a survivor. He's been through more adversity than most people and he has somehow found the will to turn his challenges into opportunities. Opportunities to learn, to change, to live his life to the fullest. He keeps going and keeps growing.  Just like you. So it's in your blood; it's your nature to fight. But you have a spirit that is unique. You're a fighter, yes, but you don't flail. You just do. Sometimes your life is hard. Sometimes it's really, really hard. But this is the only life you know. You are just you -- and you love being you.

Today you are so in love with life. From the moment you wake up until the moment you conk out at night, your life is full and wondrous. Your eyes widen and you gasp with excitement a hundred times a day. You worship your big sister. You love cupcakes. The potty. Your My Little Pony collection. Queen Elsa. Singing and dancing. Books. Hugs and kisses and nibbles. Mama. The school bus, which you look forward to with an impatience I just don't understand. You love school, the park, the pool at the Y, taking baths, even pushing your wheelchair. You just started adaptive ballet and you can't get enough of your fancy tutu and ballet shoes. You are beloved by so many. Never in my life did I think we would have such a well-attended birthday party for a three-year-old. People came in hordes: your first teacher, your old school's director, your past therapists, your family, your friends, and a lot of people who just love you to pieces. No one could get enough of you and you loved being passed from one person to the next, soaking up the attention. You haven't even been at school for a month, and everyone knows your name. "Oh, you're Teeny's mom?" someone will exclaim without me even opening my mouth. "She's the cutest thing ever!" they will gush, and share some sweet anecdote about you pushing the elevator button every morning or getting people's names right by the third day of school or getting an ice pack after bumping your head and announcing that you're all better.  "She's already the mayor of the school," someone else pronounced, in the second week of September when you'd been there just over a week. People adore you. Simply put, you sparkle.

This week someone explained to me that there is a correlation between the cultivation of gratitude and the ability to problem solve. Apparently both concepts live in the same area of the brain. Until you came, I lived my life feeling very entitled and angry. I deserved this, I was owed that. I worked hard for things and felt robbed when I didn't get them. It never occurred to me that I might already have everything I needed and more. Right around the time that you came, I started to understand how fortunate I was. I am married to the love of my life! I am the mother of two incredible children! I have the best job in the world! I have so many wonderful people in my life! And slowly, the anger and resentment began to fade and it was replaced with a willingness to share my feelings, ask for help and embrace the abundance of love and support that began to come our way. And I realized there was a lot I could do to help get you what you needed, so as I have written about time and time again, I got busy.

Maybe I will always be sad that you were not given the same chance that your sister got. Maybe I will never understand why or how it happened. Maybe I will always be tired, maybe the list of calls to make, appointments to schedule, and bills to pay will never end. But I'm not sure any of that matters anymore. I am so proud to be your mama. I can't think of anywhere else I would rather be in the world than right beside you. I am so grateful for you -- you, exactly the way you are. And we have so much time. There is no rush. You will get there when you get there and you are living every moment in the fullest color. You are like Milo of The Phantom Tollbooth, my favorite character in my favorite book. His adventure began with a gift and a note: FOR MILO, WHO HAS PLENTY OF TIME. As he went on his quest to rescue the princesses of Sweet Rhyme and Pure Reason, everyone he met along the way said there was one very important thing about it that they couldn't tell him until he got back. When he finally returned safely, there was a huge celebration in all the land. The kings quietly reminded him of what they'd said at the very beginning.

"I remember," said Milo eagerly. "Tell me now."
"It was impossible," said the king, looking at the Mathemagician.
"Completely impossible," said the Mathemagician, looking at the king.
"Yes indeed," they repeated together; "but if we'd told you then, you might not have gone--and, as you've discovered, so many things are possible just as long as you don't know they're impossible."

So, happy third birthday to you, my beautiful daughter, my love, my light, my inspiration. May you have plenty of time. And may your life be full of possible.

I love you.
Mama

Silver Linings

It's mid-November. A few weeks ago, while the country was busy Halloweening and our city was remembering a terrible and devastating hurricane that blew through the area the year before, I was having trouble focusing. I didn't call my in-laws to see how they were feeling as they reflected on the past year of displacement and rebuilding a house with their bare hands. I forgot to buy pumpkins for carving and, worse, I completely spaced on the night our building did trick-or-treating and had nothing to give out. I kept getting home from work and falling asleep in my clothes as soon as the girls went down. I just wasn't all there.

It took a while for me to realize why. We were approaching our own anniversary.

In September of 2012, we finally convinced our pediatrician that Teeny needed to be evaluated. By mid-October we'd had four evaluations and very little concrete information. While we waited for Early Intervention to get going, we started Teeny in physical therapy. She was barely a year old and she wasn't crawling. She wasn't talking. She wasn't even sitting. Yet, everyone who saw her told us how cute she was and how sure they were that every baby goes at their own pace and some don't even crawl, and any day now she'll just get up and start walking, you'll see. She's fine!

But then someone said the word "neurologist" so two weeks later we had seen one and two days after that we were getting an MRI and then two days after that, everything stopped. And meanwhile the world around us was in shambles. My husband's family, living smack in the middle of the destruction of Hurricane Sandy, homeless. My normal routine at work, on hold so we could service the many pet-owning residents of affected areas. My friends, at best inconvenienced and at worst displaced for weeks or months. One close friend had to leave her flooded apartment as well as her job and the rest of her life to fly to St. Louis to live with her mother for six weeks, all with a newborn baby. Everyone was affected. And I was there for no one at all because I was too busy feeling sorry for myself and mourning the future I was supposed to have.

The weeks that followed are still a blur. Yes, I got busy with phone calls, appointments, research. I read books and neurology journals. I located experts, I wore people down. I'm a fixer; I got her the services she needed and more. But late at night, Johnny and I cried. We asked each other difficult questions and the answers were often just too hard to say out loud. But one night in December of last year, I said the most awful, terrible, no-good thing I've ever said in my whole life. I will tell you what it is because I want other people to glimpse into this window and see just a fraction of the pain we were experiencing.

I said: "If she were our cat, I would probably have her euthanized."

You can't just un-say something like that. I swallowed hard. Johnny just looked at me, his eyes big and his mouth silent. My cheeks got hot with shame. You were not supposed to say these kinds of things about your baby. These days I was sad all the time. I was very worried that the kind of depression I experienced in my teens would return. I was afraid of my feelings, scared of not being able to fix it, and truly terrified about maybe not loving my own baby.

I will be honest with you. Most of the time, I'm not very nice to myself. I waste a lot of time agonizing and beating myself up. It's crazy stuff. I sometimes agonize over things I've said or written for hours afterwards. I feel my face get red and and my stomach gets knotty and then, wishing I'd never said anything in the first place, I want to say a thousand opposite things right away, maybe to explain myself more fully or maybe to undo what can't be undone. Which of course starts the insanity in my head all over again, because no matter what I do I know it's too late and I'm furious that I opened my mouth again and when will I ever learn anyway? Crazy, I'm telling you. This is the tornado I found myself in as 2012 drew to a close.

But in the past year, the universe made a liar out of me.

First of all, animal person that I am, I somehow didn't know then that there are actually lots and lots of cats with cerebellar hypoplasia. If you Google the disorder, you will in fact find far more on the internet about kitties with CH than people. It turned out that I had friends with CH cats. I'd met them and pet them and totally loved on them like any other cat. A little wobbly, they lived pretty normal lives for the most part. So a cat with a new diagnosis of CH is definitely not a candidate for euthanasia. And neither was Teeny.

Within weeks, she sat. Shortly after that, she bunny-hopped and by January or February she was crawling for real. She showed us that she was learning. She grew stronger, more steady. With the help of our friends and family, we did a test that told us her issues were static, not progressive or degenerative. We began to have hope and clearly so did she. She learned to feed herself. She pulled herself to a stand and learned to crawl up stairs. She began to say a few words. She was doing so many great things that we got brave, thinking walking was right around the corner, and we applied for part-time mainstream preschool. Many nights I lay awake wondering what the hell we were thinking there. We had committed thousands of dollars and she might not even last a day. I had no idea what I was doing. I was deeply in my own head, involved in every mid-life crisis escapist fantasy, wondering how the hell this all happened and what the hell I was going to do. I spent the better part of the summer hurting; lonely and sad and feeling misunderstood by everyone I loved or thought I loved. I couldn't even tell the difference. I had created this busy life construct that looked on the outside like a bourgeois tower of success, but inside it I was a ball of nerves and confusion.

Then one night I lay in bed, awake in the dark, flipping through pictures of Teeny on my phone, and I realized that something magical had happened. I loved her. I didn't just love her because she was my baby and I had to. I didn't just love her because she was cute and blonde and had big blue eyes like her dad. I didn't love her despite her needs. I had fallen in love with the baby she already was. I couldn't even see the baby she was supposed to be anymore. I couldn't see the cerebellar hypoplasia, the cerebral palsy. I just saw Teeny. And I loved her with all my heart for who she was. And I thought about what I said almost a year before and felt my cheeks getting hot with shame again, but I swallowed hard again and as I did, this time I breathed out and I felt the shame leave me. Yes, I had said some awful things. But I had just been dealt a devastating blow that would change my life forever. At that moment, I barely knew my own name. A year later, Humpty Dumpty was back together.

The next morning I was up early with Bee, reading. Soon we heard baby noises through the monitor and I watched Johnny as he went into the girls' room. He came out with a smiling Teeny in his arms. He was nuzzling her belly and neck with kisses and she was howling with giggles. They were both glowing with love and I reached for her and she clung to my neck and murmured "Mama." She patted my back gently and I held her tight. Johnny scooped Bee up and came over to us. "Family sandwich!" he cried, and they piled on us. Bee jumped into my arms and suddenly I had both my girls close to my heart. As I held them as tight as I could, Johnny wrapped his arms around all three of us. We were a family.

Yes, Teeny had made so much incredible progress in that year. But truthfully, her mama made even more.

Well, she didn't start walking, but we sent her to school anyway. We worried for the entire nine months between paying the deposit and her first day, and by worry I mean we debated, argued, and talked about pulling her out before she ever went in. Her first day came. I hadn't slept the night before and I was so nervous that morning that I was actually sick. Yet within fifteen minutes, we knew she was in the right place. And in the two months since she started, she has become a different child. We sent a very delayed special needs baby to her first day of preschool and that same day we picked up an engaged, hard-working child.

She talks more and more every day. She repeats everything we say. The way her language is developing is wonky just like her wonky cerebellum. She has probably close to 100 words she can use appropriately but she just can't string two together. But she gets the sentiments: she will shake her head no and in a cranky and determined voice, say "bath." This means of course "I don't want to take a bath." She will wave wildly and say "mama," meaning "Hi Mama!"

Her words are not all nouns. She has verbs too like eat, and prepositions like in and on and "OUT!!", and even very age appropriate adjectives like colors, which really makes me proud. She makes the right noises for ducks, cows, dogs, sheep, chickens, and other animals. If you ask her if she wants to brush her teeth, she nods and heads for the bathroom. She waves hello and goodbye, knows how to clean her face, blow her nose, blow bubbles, put a pacifier in her baby's mouth. She knows all her body parts too and while she lags behind during Head, Shoulders, Knees, and Toes, she tries her best to keep up. When she sits in w-sit (her PT's worst nightmare), you can say "Teeny, fix your legs!" and she will pull them out from under her, one at a time, until she's sitting on her tush with her legs stuck out in front of her. "Leck," she says, and points at one leg, and then the other. "Leck."

She is VERY attached to her daddy. Where Bee is and always has been all about Mama, Mama, Mama, Teeny will notice every time Johnny leaves a room and call after him, but she can't say "come back."  "Daddy?" she will call instead, pointing at the door. "Daddeee. Dad-deeeee! Back!"  While she can't say her big sister's first name, she can sure say Bee, so she has taken to calling her that. "Bee! Bee! Bee!" She loves her sister and wants her approval all the time. They play together; dressing up, bouncing on the bed, talking on the phone, stacking blocks, grabbing things from each other. She names toys, even though sometimes we don't understand her words or her logic. For example, her great-aunt gave her a handmade doll as a gift and she promptly named her something that to us sounds like "car keys." Puzzled but tickled, we christened this doll Sally Carkeys. She makes us all laugh with her weird pronunication of words like pasta "ba-da" and water "wa-ga."

These days her favorite word is a pretty clear one: NO. It's a very physical word: she scrunches up her face and furrows her brow and shakes her head. Her whole body says no right along with her. I don't even know what to say about that except I think that is pretty normal for a two-year-old. If there were going to be one milestone she was ever going to reach in a timely way, this is not the one I'd pick, but at least she's got the cognitive ability to make decisions and know what she doesn't want. Silver lining maybe, but I'll take it.

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. 

Gene Genie

This week Teeny had her long-awaited appointment with a geneticist.

We'd made the appointment right after her MRI, and at that time it was just another thing we were supposed to do to rule out something very scary. Every step of this whole horrible journey has been suggested to us to rule something out and with every test and every report and every exam, she ends up testing positive for something no one thought she had in the first place, which really, really sucks. Needless to say, I was not especially looking forward to this visit.

Children's hospitals try so hard to be cheery but despite the bright colors, teddy bears, and balloons, they are torture for everyone. The parents dread being there because it's the last place anyone wants to take their child. And the siblings think they're at a party for every other kid in the world but them. I walked in with lead feet and a heavy heart because this was the place where Teeny had her MRI. It was the very Omphalos of bad news. I never wanted to come here in the first place, yet here I was, going back for more. Bee, on the other hand, saw all the sorry attempts at cheerfulness and was excited by it all - and jealous. We walked past the sad hospital shop where plush dolls, games, and kids' clothing were for sale. "I wanna go in there, Mama," she demanded. When I ignored this request, she raced up the ramp, happily checking out the colorful murals and paintings. Then she stopped at the desk where we had to sign in and pointed at the floral arrangements and mylar balloons shaped like Mickey Mouse awaiting delivery to patients. "I want one, Mama," she said again and again. I explained that they were for the kids in the hospital, but, too young to be more than fleetingly empathetic, she was just envious. 

We checked in and the security guards handed us our guest passes. Passes? I remembered my club days, full of guest lists, passes and wristbands. They meant excitement and fun. Who wants a free pass to a children's hospital? This is a party you couldn't pay me to crash if I didn't absolutely have to. I tucked the bizarrely pink papers into my coat pocket and tried to remember where he said we had to go. 

All the way down the hall and then right, walk straight and take a left at the north elevators, but don't forget to stop in the billing office, the last door on the right. We stopped there to register and sign away our lives and our paltry savings. The walls were painted with rainbows and the chairs, each a different color, looked like a box of crayons all lined up one next to the other. There was a huge tank in there full of big, active fish. Our girls were mesmerized, so we were able to fill out paperwork, photocopy insurance cards, and pay co-payments, all without a peep of protest. 

We continued on and our surroundings got less and less happy, less and less vibrant. By the time we made it to the central elevators, the paint was peeling from the ceiling and the floor looked like cheap linoleum. Up seven flights and down another hall and then into a stuffy waiting room with more linoleum, dirty chairs and a TV/VCR setup that was so old we couldn't even work it. It reminded me of an old insane asylum, like the one in One Flew Over The Cuckoo's Nest. We took off our coats, cracked a window and waited. All the coaching I did with Bee about picking out special toys to keep her busy was for naught: the iPad sat in my bag. She wanted nothing to do with it or anything else we'd packed. Teeny was fussy too; I tried to nurse her but she was wriggly and bitey so I put her down to crawl on the floor. I looked around at the dingy room. No toys. No posters, no murals, nothing. I couldn't help but think about how we keep ending up in these crappy, unrenovated wings of very fancy hospitals. As I sat there, I developed a theory that other, more common health concerns get the face lifts, the paint jobs, and the new furniture first. This particular hospital complex clearly threw less time, money, and effort into the offices for the rarer diseases. This waiting area was as depressing as the one at our neurologist's office. I was not impressed.

The genetic counselor was very thorough. She wrote down a lot of information and sketched out a family tree with a plastic tool that had different shapes cut out in it. Squares, diamonds, circles all indicated different ways people in our families were related and scribbles under them were shorthand for any of the health issues we relayed to her. Soon she had woven an elaborate web of shapes and notes two pages wide, yet our information felt woefully incomplete. I was adopted and my birth mother was adopted as well, so I know next to nothing about my genetic makeup. My husband's birth father passed away when he was much younger; his siblings have a different biological father. There a lot of unknowns for both of us. Still, we both knew enough to say emphatically that neither of us has or had anything like cerebellar hypoplasia in our genetic makeup.

After what felt like forever, we saw the doctor. Both kids were hot and tired and cranky by this point, but he was in no hurry. He talked for a long, long time, slowly and in a hazy monotone. After a while it took tremendous effort to listen because my inner adolescent heard nothing but Bueller... Bueller... Bueller while my outer mama was being used like a jungle gym with two overtired and undernapped kiddos clinging to me for dear life. 

It's a good thing I'm pretty well read about our situation because, nice as he was, it was hard to listen to this guy. When I am not fully engaged in a conversation I'm having, I start to notice quirks in people's speech,  grammatical errors, tics, or phrases they say over and over. I get so caught up that I barely absorb a word they say. This guy was a big fan of "Let me put it this way," and "Let me just say this." With the unbearable heat and the squealing children, I found myself counting those phrases before I handed Bee to Johnny and suggested they go investigate the vending machines downstairs. I jerked myself awake and attentive again. Luckily he hadn't said much I didn't already know, so I was able to be as tuned out as I was and still follow the conversation and ask relevant questions.  And it's a really good thing that I am practicing patience and acceptance around this whole issue too, because what I did glean from the geneticist is that he has no idea what's going on with Teeny. Just like everyone else. 

This is what I understand right now, in layman's terms: Hypoplasia means an organ is under-formed or underdeveloped, so cerebellar hypoplasia means a small, underdeveloped cerebellum. Teeny also has a short pons, so technically she has pontocerebellar hypoplasia. Cerebellar hypoplasia (CH) is also the name of a genetic disorder, the primary symptom of which is a small cerebellum. This neurological impairment seems to be far more severe than what Teeny has.  Pontocerebellar hypoplasia (PCH) is the name of a genetic disorder that is so grave, so truly terrifying that I don't even want to type anything about it here. Go ahead and Google it if you are curious, and read about the six or seven different types. They are all horrific and, ultimately, fatal in infancy or early childhood. Both CH and PCH are accompanied by a wide variety of other issues, essentially none of which we see in Teeny at all. Its possible that she has a (relatively) mild case of one or the other. But while no one wants to commit to anything without doing more testing, I get the sense that it's probably neither CH nor PCH.

Which is a good thing. If it's not genetic, it was caused by some static event, or "insult" as the geneticist called it. Everyone seems to agree that whatever it was happened in utero, mainly because I knew from the moment she was born that she was different. So then, what was it? The MRI does not show evidence of a stroke. If it's not genetic and it's not a stroke, there is a range of other possible causes for this insult, but it's not likely that we will ever know. But it doesn't really matter. What matters is that a static event, whatever its nature or origin, means nothing is changing, and that whatever Teeny has is not progressive or degenerative. Because of the brain's incredible plasticity, it means she has a chance at a full recovery. We don't know how likely or unlikely that would be, but it's possible. So obviously this is the least horrible scenario, and the only way we can be sure this scenario is ours is to do the extensive genetic testing that rules everything else out.

We have one team of doctors who think it is a static event but want to do the CH/PCH panel just to be sure. We have another team who thinks it *is* something genetic but not CH or PCH, rather something related to something very obscure and complicated that I don't really understand. If it's the former, as I said, the prognosis could be positive. Should it be the latter, I have no idea what we'd be looking at.  But of course I want to know whatever is knowable. Who wouldn't? 

The counselor and the doctor said we had a lot of options, so we agreed to do all the genetic testing possible. I consented to having Teeny's blood drawn, knowing that she is not always an easy patient. We made our way back to the happier part of the hospital, counted brightly lit moons and stars on the elevator ceiling, and then stopped for a few minutes at the four-foot copper apple made entirely of pennies. Climbing on and around it seemed to recharge the girls' batteries. But moments later we were at the mercy of the phlebotomist, who looked less than thrilled to see us. And Teeny protested loudly, but she was brave. We were all very glad that we got to go home after that.

All done!

The counselor called me a day later. I was home with Teeny in the middle of a PT session but I picked up anxiously. She told me to get a pen and then said that everything we wanted to do all together at one particular lab would be more than ten thousand dollars. I could feel myself turn pale and I almost dropped the phone. The CH/PCH panel and one of the others we wanted to do are both apparently some kind of insurance exception, she explained. This particular lab is notorious, she said, and it doesn't even bother to bill insurance for these panels because they won't pay out enough to make it worth their while. There were other options, she assured me, and she was going to do some more research on some alternate panels and different labs and she'd get back to me. In the meantime, she said, she wanted us to come back on Monday for another blood draw, to do yet a different and more basic panel on Teeny's chromosomes that might indicate problems. This one would be covered for sure. I acquiesced and hung up the phone.

I was stunned. Ten thousand dollars? And $3,975 just for the CH/PCH panel - the most crucial one. Are they kidding? I always pitied the parents who had to hold fundraisers for their kids' health issues but this is the first time I've been faced with a bill like this myself. What are these labs and hospitals thinking? Don't they know how difficult this is for the families involved even without adding this insult to injury? What about the fact that we are a one-income family? Don't they know that I have private preschool tuition to come up with? A mortgage to pay? Get in line, I said in my head. 

As I relayed this new development to Johnny, I wasn't sure how upset to be. Bottom line, if the genetic counselor can't find us an alternate, the testing is going to be cost-prohibitive. And that is what it is. Of course this kind of information will be helpful in determining a course of action. If we're talking about PCH, it could be life or death. It's very serious stuff. But I don't know. If we have to, we will find a way to make the testing happen with or without the help of insurance.

In the meantime, it got me thinking about genetics and how in this area, my life has been one giant question mark. So when I learned about a website that for $99 offers genetic testing via a mail-order spit kit, I signed myself up. A pal of mine did it recently and learned a lot about his ancestry and various medical predispositions. Who knows what it will uncover about me. Am I really Jewish? WillI die of a stroke at an early age like my mother? And maybe, just maybe, it will show some addition or deletion in a gene that might be in some way connected to neurological impairment. I doubt it, but you never know. For 40 years I've been in the dark, so I'm curious -- and a little scared -- to see what light will be shed.

And what if I ordered another spit kit... for Teeny?