(Tell Me What Inclusion Looks Like!) This Is What Inclusion Looks Like!

A few weeks ago Freyja and I visited a friend who'd had surgery on his jaw. In order to recover, he had to have his jaw wired shut. Talking was understandably challenging; he spoke through gritted teeth with a wet hiss and a mumble. She looked at him quizzically. "You talk weird!" she said to him. "You talk weird too!" I reminded her. She looked at me in shock. "No I don't, Mama!"
She doesn't know, I realized. Or maybe she doesn't care. As she says over and over, "I'm just Freyja!" In many ways, she's just a kid like your kid and your kid and your kid, only her brain doesn't talk to her body the way your kids' brains do. And she belongs in this classroom and in this school and in this world just like everyone else and she has never been taught anything different.
Her new school is great. It's a public school. Her sister goes there too; they are in the same school for the first time in their lives. The district has wheelchair accessible yellow school buses so they are now riding together. She has a lovely new 1:1 who meets her at our house in the morning and rides the bus too. She works with Freyja all day long, providing individualized instruction when she needs it. Freyja receives many services that she needs: PT, OT, speech, adaptive PE and literacy sessions. And her school has been supportive since we began the transition process last spring. They are doing everything they can to ensure that she is safe and that she has all the tools she needs to succeed. They've watched her walk, measured how well she can reach the sink, the water fountain, the toilet. They've arranged for adaptive seating and adaptive step stools. She's been evaluated for adaptive technology and will be learning to keyboard as the other kiddos learn to write. She is learning to navigate the school with the elevator and ramps, since stairs take her a very long time. And now I have another reason why it's so awesome.
Last Wednesday was her first day. I was a little distracted all day long because I was worried about how she would do. So when my phone rang while I was at a work lunch with five people from out of town, and it was the school's number, I ran out of the restaurant in a panic. "Everything's fine," the voice said. It was the school psychologist. "She's doing great so far." She was calling because some kids already had questions, she said, and she wanted some advice for how to handle it.
I told her that last winter we'd visited her preschool classroom. We talked about her disability openly with the kiddos. We answered their questions, reassuring them that the van she arrived in was not an ambulance, that she was not sick, that she likes the same things as most kids do. She gave all the kids a turn in her walker and they squealed with delight, zooming around the room with it, hopping on one leg to try to get a sense of what it feels like to rely on your arms to walk. It was a good visit, I told her, and we could do something like that again if it's helpful. "Hmmm," she said, thinking. "I don't know if having you come in is the right thing." She paused. "What do you think?"
Well, why don't you ask Freyja? I responded, and she said that was a great idea. An hour later she called back and told me that Freyja was really excited to have us come in with her. So that's what we did.
It made me so happy that they asked Freyja her opinion. It made me so happy that this came up on the first day of school and not halfway through the year. It made me so happy that the school staff wanted to address the other kids' curiosity and questions openly and with respect. This is the kind of thing that encourages inclusivity. It normalizes difference.
When we arrived, the kids were seated on the floor. There were lots of grownups in the room, including the brand new principal. We sat right down on the floor. I read a book I love called Susan Laughs. This book talks about all the things that Susan does and likes and feels. She sings and swims and gets angry and sad and laughs and dresses up and does all the things kids do. It's not until the last page that you see that she uses a wheelchair. I asked if any of the kids like to do ballet and go swimming and play dress up. Hands flew up and many kids started telling us about their swim lessons, their summer vacations, their dance classes, their Batman costume. And then we got to say, well guess what? Freyja loves to dance and to swim and to play dress up too! She's just like you!
We showed the class her braces and her walker and asked them if they knew what they were for. Freyja explained that they both help her walk because her balance isn't good and her legs aren't that strong. A girl with a cast on her arm talked about how long she has to wear it to keep her wrist straight, and I told them that Freyja will likely wear braces on her legs for life to keep her ankles straight. I explained that she isn't sick. Nothing she has is contagious. That they can expect her to apologize if she bonks into them with her walker. They took turns trying her walker and a few asked to try the wheelchair too. Some of the grownups asked Freyja pointed questions about how she gets around the school, what she needs, and how the other kiddos could help her. She answered well and I was proud.
On our way out, the principal caught up with me. "You used to be a teacher, right?" he asked. I admitted that yes, I was. He smiled and said, "it was obvious."
But it wasn't. It doesn't matter that I was a teacher -- my teaching experience is with kids way older than these. I know nothing about early childhood education. What I do know is that we never pretend that Freyja is typical. It shocks me that some families are "in the closet" about their kids' disabilities. That doesn't help anyone! Why pretend that your kid is something she really isn't? Why pretend that everything is a certain kind of normal when being open and honest and visible makes being atypical normal too? When I hear kids whispering about her walker or her braces or her limp, we always stop and talk to them respectfully. We invite questions. We let kids take a spin with the walker or in the wheelchair. I don't reprimand them for talking about my kid or pretend I don't hear them. Kids are curious and Freyja loves to tell them about herself. I mean, her walker is really cool -- it's pink and shiny and looks like a weird sort of scooter. Her braces are interesting. She herself is fascinating. So why not let them ask? Freyja knows how to answer these questions by herself now. And she has no idea that she's radically different from anyone else because when it comes down to it, she's really not.

Can you tell which one is the atypical kid's?

Freyja started kindergarten!

Freyja started kindergarten last Wednesday.

I don't think I will ever get tired of saying that.

Freyja. Started. KINDERGARTEN. In our local mainstream public school. She's in school with her sister.  She took the bus there with her sister. She is in public school. In the same school as her sister. We are taking it a year at a time, yes. But we are taking it! 

The night before the first day of school, I wrote my girls letters. I read them out loud as they got ready that next morning. As I read them, Johnny made barfing noises in the background because they were so cheesy. All the same, I want to include them here.

Here's Freyja's:

Dear Freyja, 

It's been such a joy to watch you prepare for kindergarten, and here we are the night before your first day. You've worked so hard for this moment and you've defied all the odds to get here. You are in a mainstream public school! You have a small army of people to support you and ensure your success. You are determined and tenacious and you don't know failure. You are the you-est person I have ever met, so self aware and so unwavering in your very Freyja-ness. 

My daring precious peanut, I wish you knew how many people are in your corner and have been since your birth. I wish you knew how many hearts you have touched and how many hands have supported you every step of the way. You are so loved and we are proud beyond words of who you are and all you have accomplished. 

We don't yet know where you will lead us in the future. We don't know what you will need and how you will grow and change. But I do know that tomorrow you will start kindergarten and at the end of the month you will turn six. You will have already accomplished more in your short life so far than many people much older than you. We are so excited to be along for your adventure. I love being your mother with all my heart and soul. And I love you.

Love love love,

Mama

And Thora's:

Dear Thora, 

I'm writing to you the day before school starts. You are about to start second grade. Your hair is getting long. You just got your first skateboard, and you already ride it competently. You are an artist. You still have not lost a tooth. You are seven and a half and you are beautiful, smart, creative, brave, kind, silly, and wonderful. You are the center of my world and I love you and am so proud of you.

In second grade you will learn so much. You will read more and do more math. You are a Bay Stater now, and you'll learn more about your adopted hometown and state. You will do more art, more music. We will ride our bikes and you will skateboard with Daddy until it's too cold. Your hair will grow longer if you promise to keep brushing it, and you will grow taller. You might even lose a tooth or two.

You will make more friends. You will work hard and play hard. And I hope you continue to fall in love with life. You are precious to me and to the whole universe. Enjoy school, enjoy life, enjoy being you!

I love you to infinity and beyond.

Mama

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.

The Results Are In... It's All In How You Look At Things

About two weeks ago, the call that I had been waiting for finally came. After weeks of despair followed by weeks of fundraising excitement followed by months and months of silence, it came. And I was caught off guard even though I'd been expecting it. It came very late one sticky, sweaty, easily 98 degree afternoon after a truly shitty day at the office and I was racing through midtown trying hard to concentrate on other things when my phone lit up. I recognized the number and I ducked into an air conditioned sports bar in the West 30s and locked myself in the bathroom - the first thing I thought of, somewhat absurdly - and I plugged my ear with a finger. "Hello? Okay, yes, I can hear you now."

The genetic counselor, a thoughtfully sensitive woman with an unexpected and very thick Scottish accent, told me that the results of the comprehensive, impossibly expensive genetic sequence test indicated absolutely no abnormalities in Teeny's genetic makeup. None. This is the best news we've had since Teeny's MRI last November. It's the result we wanted. And yet I couldn't help myself; I burst into tears.

The counselor said the cause of her issues was therefore probably one of two things: either a static event in utero that we may never understand or something so rare or subtle that even the gene sequence test is not sophisticated enough to detect it. The latter was unlikely, she said, but all the same the geneticist's office wanted to see us annually to evaluate her for any new testing that may become available over time.

The good news about the static event hypothesis is that whatever happened to Teeny happened once, in an instant, and it won't get worse. Some kind of random illness or injury would not cause a degenerative, progressive disease. With a case like this, some -- or a lot of -- recovery is possible. And Teeny has already shown so much progress that if this our reality, it means things can only continue to get better. It means there could be no ceiling to the success she can achieve. This is what our neurologist suspected all along. There are other schools of thought, and I'm still waiting to hear from the various cerebellar experts who have been in intermittent contact with us over the past six months. They have different theories that we may at some point explore. But for now, I'm going with the static event.

I think any parent of a special needs kid would understand why this news made me cry. I think maybe we measure our milestones differently than other families do. It means the long hard road is going to be longer. Maybe not harder, but definitely longer. And there is no map for this road, no milestones to look for to gauge Teeny's progress. So even though I am over the moon thrilled that we are not facing a diagnosis of genetic pontocerebellar hypoplasia, deep down I never really believed that was an option anyway.  And now because we don't have a true diagnosis, determining a prognosis is going to be much harder. Just thinking about it exhausts me, because it means that I have to accept that there will be no acceptance. There will be no rest for this weary family. I put my best face on when she's struggling because if I can't do it, how can I expect her to do it? Every single day I have to find the energy to be a cheerleader for my girl. Every day I have to be her advocate. Of course I do this, and I do this with all the love a mother can have for her child. But it's an understatement when I tell you that it's really, really draining.

I am a doer, a fixer. I ponder things until I come up with potential solutions. I have no patience for the uncertain. I don't like messy. I do not sit well with discomfort; I rationalize and analyze until I come up with an explanation that makes sense to me. I can handle anything as long as I feel I have all the information there is. I can't bear to be in the dark; I just don't know how to not have all the answers. And of course I always feel that it is my responsibility to fix not only what is broken in my life but also in the lives of those I love; it's like I simply cannot rest until I find a solution. But life doesn't work like this. It's taken me 40 years to understand that I can't fix everything and that not everything has an answer. And when I look at my child, this beautiful girl who is so present, so aware, so there, and I can't unlock her from the cage she's trapped in against her will, my heart bursts. At nearly two, she is frustrated sometimes beyond the point of consolation.

She tries so hard and makes such slow progress that tiny things can set her off. There are times when she needs constant reassurance and can be unbearably clingy to me, calling mama mama mama and holding her arms out to me, as if she's asking me to rescue her from this imperfectly formed brain, this weakened body. I can't stop her cries. I can only hold her as she screams and tell her I love her, that this fight is worth it, that she can do it. These are the hardest parts of my day, but I keep a brave face for Teeny.

On days like this, I maintain my optimism and hope by looking at how she's blossoming. She has new words: stop, step, mine, no. A few months ago we'd ask her to point to her sister and she couldn't. Now I say "Where's Bee?" and she turns and points right at her. She points to Daddy and to the cats and a half dozen other people and things when you ask her to. She can bring favorite items to you upon request, and if you ask her simple yes or no questions, she answers with an emphatic nod or shake of her head. She communicates well with body language, facial expressions and her hands. Most notably, she protests using all three when her sister snatches something from her -- like any little sibling should.

A few weeks ago, I took the girls to visit relatives for the weekend. We had a lovely visit in which I did absolutely no work whatsoever. No cooking, no cleaning, no therapies, nothing for three days. They went to the beach, I napped. They gardened, I napped. And so on.

On the way back home we stopped at a rest stop. Pee and coffee for mama, pee and water for Bee, diaper change for Teeny. Bee spotted a display of brightly colored lollipops near the register. Pointing them out, she made her usual demands and pulling her away, I gave my usual response. But then I had a sudden feeling of oh what the hell and we turned around and I let her pick out a lollipop. She wanted orange and after we ripped off the wrapper, all was right with her world. Back at the car, I took the lollipop from her "just for a second," so I could manipulate the car seat straps and buckle her in without getting the sticky thing all over me. I handed it absently to Teeny, who seized it, shoving it in her mouth hungrily. When Bee was in her seat, she grabbed it back. And Teeny howled with the unfairness of it all. She balled up her fists and got all red in the face, wailing uncontrollably, and next thing I knew they were both unbuckled and we went back and bought another orange lollipop. I was completely frazzled by the time I got the car going again, but they were both totally happy. Whatever.

Sounds minor. Score 1 for the kids, 0 for the parent. Maybe that's all it is. But consider, for a moment, what it means that Teeny is able to eat a lollipop. That sugar is a powerful incentive should be no surprise to me, but really, think about it. She knows she wants it, she knows she likes it. Highly motivated, she can get it in and out of her mouth. She can hold it, a small and thin object, weighted on one side. She dropped it a few times (as evidenced by the blue stuffed Cookie Monster fuzz I found on it when she finally discarded it, not to mention the sticky spots all over her dress and her car seat) but managed to pick it up again and feed it to herself, while buckled in tightly and while knowing that I could not turn around to help her. Maybe that doesn't sound like much to you, but all of that is pretty significant for someone who struggles with motor planning the way Teeny does.

In the past month, she's had another Botox treatment, so the tone in her legs is reduced. Botox means general anesthesia, which is scary for Teeny and much scarier for me, but it's an outpatient procedure with possibly the best physiatrist in the country (who likes to write her initials at the injection sites) and the staff at her hospital takes very good care of her.

Bored in the exam room before anesthesia:

Immediately after:

Her assistive tech equipment arrived, so she now has a bath seat (essentially useless), a chair with a desk (adorable and very functional as both desk and feeding station), and a gait trainer (which is a $3,000 monstrosity that she detests but should eventually be able to help her develop the confidence she needs to begin to walk). She got new braces for her legs, having outgrown the last ones. The use of her hands has improved: she presses buttons, puts things in and takes things out, and still works to feed herself with a fork. She might not be walking yet, but this kid really is moving and shaking.

Hating the gait trainer:

New braces:

The real issue here is not Teeny herself, but me. She's fine. She gets it. This is her life and it is what it is. Sometimes things suck and she's fussy and cranky, but most of the time she's pretty damn happy. I should be no different. Yet I seem to find myself time and again in complicated situations which never have easy solutions. In other parts of my life I tell myself I can't expect myself to know what is truly unknowable, and that I should live and love and act in the moment. If there's one thing I know about myself as a human being it's that unrealistic expectations are my Waterloo. But like the Dodecahedron -- the boy with twelve faces in The Phantom Tollbooth -- says, it's all in how you look at things. Sometimes I have to check in with myself 100 times a day to stay calm. If I look at any given complicated situation as one to stress about, fret over, squeeze of all the love and happiness, then that is how my psyche will process it and that is what it will become for me: just a source of stress and unhappiness. But if I look at it differently, if I treasure the moments of bliss when I have them instead of comparing them to the moments that are less so, then I am living my life between the raindrops.

I love both my girls, and they love their lives. Writing this blog, I come back to that again and again and again. If Teeny is progressing at whatever pace she is progressing, I should be celebrating. It's okay to be frustrated when things move slowly or when there are complications. But she brings so much unbelievable joy to my life. Is it any wonder that I want more of it?

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?