Tuesday, April 29, 2014

And One Thought Crystallizes Like An Icy Blast

It’s the end of April and finally spring seems to be here. No more heavy coats, no more hats and gloves and scarves and layers. Teeny is excited! She asks for her sunglasses more and more (“Glasses! Glasses! On!”), and she wants to take off the hoodie she has been wearing for the last six months (“Off, off!” she will say, tugging it away from her body). She wants her window in the car open. (“Op-ee. More op-ee.”) She points to birds and flowers and leaves, naming them all. In the playground, she is learning to swing, something she once hated, and to slide down the slide.

This was a really rough winter for everyone; our family was no exception. It feels like one or more of us has been sick since preschool started back in September, and unfortunately it’s been Teeny most of the time. For a while her appetite was pretty inconsistent, and as a result, her weight has fluctuated a bit and is now back on the very low side. She’s on the smaller end of the chart for height (14%) but right now her weight doesn’t even register. I know the growth charts are imperfect and not really a measure of anything, but it’s useful for me to measure her growth against itself. When I see her measuring at less than a percent I can't help but worry. She generally eats well (if messily), she doesn’t look emaciated and her weight isn’t a concern to her medical team. And no one else seems to notice; everyone else just sees her as very tall and thin like Johnny when really she is neither. I work to sneak in avocado by the halves and almond butter by the spoonful; hopefully this will pay off and she'll start packing on the pounds at some point.

All the same, she’s still growing well. Last month after seeing too much wrist poking out of a long-sleeved shirt, I went through the girls’ room one day and cleaned out all the 18 – 24 month sized clothing and even some of the 2Ts. With no other children to save them for, I sorted them and got them ready to pass on. I got oddly weepy folding the last of Teeny’s outgrown baby things. I got lost in memories. You know, from Before We Knew.

I’ve written before about how my life as a parent seems to be divided into Before The MRI Results and After. I will never forget that heart-stopping day in November 2012 when we found out. For a brief period, I feared I might never be able to love my own child, all because I didn’t ask for this. We had another such moment recently. I finally got an email from the office of a neurological geneticist who studies brain malformations and their causes. He reviewed Teeny’s MRI scans and concluded that she has pontocerebellar hypoplasia (PCH) after all; months ago he thought it was some other, even rarer malformation that made no sense to anyone I mentioned it to. This latest was not good news. I read his email in disbelief. Again I thought, I didn't ask for this! I do not want it to be PCH. I really really really do not. When his hypothesis was something no one had ever heard of, it was easy for me to think he was way off the mark and to just disregard his input altogether. Deep in my heart I don't agree with him this time either, but of course we want answers. So we paid another fee, signed some more paperwork and gave him access to the genetic data so he could review it himself. And once again, we wait.

I'm no neurologist or geneticist, but I do my homework and I can tell you that the genetic disorder pontocerebellar hypoplasia (PCH) has a clinical spectrum associated with it that Teeny simply does not have. Nearly every kid whose family I’ve been in contact with has even more severely limited motor ability than she does, gets nutrition via a g-tube, communicates via blinking or via assistive technology, and so on. Many of them have dysmorphic features: one crease on their palms instead of two or more, low set ears, a high-arch palate and others. There appear to be six known types of PCH and they are all devastating to read about; rarely do children diagnosed with most forms of PCH live beyond infancy or early childhood and those who do have very significant and global delays. But I am not an expert so of course I could be wrong about Teeny. But it doesn't ultimately matter what she has. Does it?

Teeny is now two and a half and all things considered, she lives a pretty charmed life. Still, she knows she’s not like everyone else and it is frustrating for her. Her therapists and her teachers now observe what Johnny and I see more and more: she gets mad when she can’t do things that other people can. She’s no longer content bouncing on her butt on the bed when her sister is jumping up and down like crazy. She doesn’t want to watch Bee active in the playground; she wants to swing and slide and climb on everything too. She loves playing with dolls, but mostly, she makes them walk. She plays with Bee's Wendy figurine all the time. When Bee was in her Peter Pan phase a year or so ago, she made Wendy fly all over the house. Forget flying. Teeny's dream is to walk, so everyone around her walks. “Walking!” she’ll shriek, and as she does, my heart breaks a little. “Wendy, walking!” she repeats, holding Wendy upright and bouncing her up and down across the table. Teeny wants to walk so bad it’s like she can taste it, and it’s hard for me to see her try so hard and make such slow progress. I believe that Teeny has hope. I think she thinks that eventually, she will get there.

And why should she think anything else? Never in my life have I seen someone so loved and so supported. She doesn’t just have friends, she has fans. She has a team of specialists who all root for her. She has therapists who don’t just work with her; they adore her. Everyone who meets her falls a little bit in love with her. It’s easy to do. She gives great hugs and tells people she loves them, and her determination inspires everyone she meets. And I have fallen more in love with her than I ever thought possible. Back when the MRI changed our lives forever, I was almost afraid to love her because I couldn’t stop thinking about her brain and its malformation and how she would never, ever be like other people. Today my love is not limited by her diagnoses. Teeny is more than a label, more than a scary medical term or an ICD-9 code, more than a list of skills she should have but doesn't. In some ways, she is as sharp as a tack. She is my heart, my hope, my determination. Simply put, she is one of my reasons for living. She is my daughter and she is beautiful and -- in the very basest language I know because it’s a totally primal feeling deep inside me -- I fucking love her. 

Here's an example of how with-it she is. Johnny and I rarely fight. He is my best friend and my soulmate and, generally speaking, we get along really well. But this morning, Johnny and I were both cranky and underslept and we started arguing about a miscommunication. Stressed further by rushing to get the girls to school on time, we got careless and raised our voices as we zipped hoodies, gathered backpacks and looked for housekeys. Bee ran away from me and for the first time in her short life, she hid anxiously in her closet. At the same time, I heard a screeching sound. I looked around for Teeny and found her sitting on the floor with her arms folded across her chest. Her brow was furrowed and she was pouting. She was calling out in a high pitched voice. I stopped yelling and stared at her. "What's she doing?" I asked Johnny. "She's imitating us," he said sadly. I caught her eye and she looked away, burying her face in her hands. My heart sank, and at the same time I felt elated. I really couldn't believe it. Sometimes we act as though she isn't 100% present, talking over her and assuming she doesn't always follow what's going on. Of course it's not the way I wanted to be proven wrong, but she showed us in no uncertain terms that she was right there with us and totally aware of and affected by our behavior. I coaxed Bee back out of her closet and over to us. I hugged her, and I picked Teeny up and kissed her cheeks. On top of everything else, I now felt shame. It wasn't fair to involve them in our stupid bickering. Nothing we were arguing about was worth seeing either of them like that. I apologized to Johnny and he apologized to me and we both apologized to our girls. We all held hands. For the first time, we talked to them both about what they saw and made sure they were smiling again before we headed out to start our day.

These days there is a lot of hope. Big stuff is happening. Teeny is always engaged and active. She goes to preschool four mornings a week and, until recently, spent the fifth working on art projects with a respite worker. Every single weekday afternoon she has some kind of therapy and many afternoons she has multiple sessions. She has the busiest schedule of anyone in our family, and by the end of every day, she is exhausted. She doesn’t get wired like Bee does when she’s tired. If we don’t read her signs, she will fall asleep sitting up. So she’s the first in bed every evening and she’s the last to wake every morning. She rarely if ever wakes at night, and she sleeps so soundly that we often have to rouse her. This kid is just plain tuckered out. She works hard.

And there’s always something else on the calendar. A kid with medical issues never goes long between doctors' appointments and we’re always schlepping up to Columbia Medical Center for something or other. This has become a little more routine for us, although I don’t think I will ever be comfortable being the mom of a kid who spends as much time in a children’s hospital as Teeny does. In the past few weeks for example, she’s been casted, measured and fitted for her third pair of leg braces. She had her fourth Botox treatment.The new braces (called DAFOs) have a hinge at the ankle and are a huge improvement over the previous pair. Together, the braces and Botox help her legs so much.

While we adore the mainstream preschool she is at now, we made the decision to apply to a different school for next year. This school has an integrated preschool with a team of therapists on staff and a PT room in the building. If she gets accepted there, she would no longer be the only special needs kid in the classroom. Her teachers would have experience teaching kids with limited mobility. She could have some or even all of her therapies during the school day, which means more time for unstructured play than she currently has (which is essentially none). She could get free busing to and from school. So we went through the harrowing New York City private preschool application process a few months back. Tours, paperwork, interviews. Waiting for the call inviting her for a playdate. The call did come and our playdate is tomorrow; any NYC parent knows it's really a performance and not a playdate at all.

Because she is a special needs child, in order to qualify for this school’s integrated program, the school application process is just the beginning. She has to exit Early Intervention – which provides primarily home-based services via an individualized family service plan (an IFSP, not an IEP)-- six months before she ages out to instead have her services provided by CPSE (the Committee on Preschool Special Education), which is the Board of Ed’s service provider for children ages 3 – 5, which is a whole different ballgame. Even though Teeny is only 2.5, to be accepted at this school, she needs an IEP now that mandates that she receive the kinds of services they provide. And to get that, she has to be recommended for it by the agency that does the evaluations. Lucky for us, the agency doing the CPSE evaluations is run by the school we are applying to.

Somehow with special needs kids, it’s always time for evaluation. Every time we request an increase or change in her services through Early Intervention, she needs to be evaluated (or re-evaluated) in that area. And now that we are entering CPSE, she had to have multiple evaluations in their required space of 20 days. I changed my work schedule around and we set up PT, OT, speech, psychological evaluations as well as a classroom observation and a "social history" (i.e., when someone asks Johnny and me the same 101 questions they always ask about our family, my pregnancy, her birth and all the milestones she has missed since).

I got copies of all the evaluations last week in the mail. I tore the thick envelope open, dove into reading and immediately burst into tears. I had braced myself that they would be harsh and they were. They have to be in order for her to qualify for services. I get that. But no matter how I try to prepare myself, it still hurts to see my child described so clinically. Test scores. Percentiles. Adjusted ages. Lists of things she was not able to do during the testing, lists of things she cannot do at all. And all the while, I’m muttering under my breath. She can so do that, she just didn’t want to. Flipping through one document and the next and the next, my eyes scanning the pages for something different. And then reading the two sentences to end all sentences: “Teeny’s cognitive performance was affected by her significant motor delays that prevent her from being able to accomplish various activities that required free movement, muscle tone and coordination. Teeny’s potential is far greater than she was able to demonstrate on cognitive tasks.”


This described to the letter the thing that frightens me the most. We know she's in there. We believe she is a very smart girl being held back from achieving her fullest potential by her motor difficulties. It feels like we are in a race against time to get her walking and talking and grasping and gripping just so we can unlock her true self. That if we don't do it soon, or find a way to help her make great strides (no pun intended) with her motor skills, she will be locked inside herself forever and just fade away. Like she is a candle that might eventually burn out if we don't do everything we can to keep it lit. It feels like time is running out and we can't afford to waste a single second.

So tomorrow we have the playdate. Next week we have the “feedback meeting,” where we learn whether the agency will recommend an integrated program for her. That same day we have a meeting with Early Intervention to renew her current services for the remainder of her time with them. The week after that we have the IEP meeting. That’s a lot of meetings. And there is nothing I can do to prepare for any of them except show up and be the strong advocate my friends tell me I already am. But there is so very much riding on these next couple of weeks; it’s hard for me not to want to fill up the time between now and then just worrying, as though the amount of time I put in worrying about things beyond my control might win me some amazing prize. Ludicrous, really.

This is a process I’ve been scared of since the day we learned we would eventually have to go through it. I’ve heard IEP meeting horror stories from so many parents. It’s not uncommon for people to pay exorbitant fees to have a lawyer accompany them to the meeting just to be able to threaten a lawsuit if the child is not awarded the services the family believes to be necessary. But we’ve been told that we have a benevolent district coordinator and the agency doing this set of evaluations seems to be a strong advocate for her. Plus, she’s got her dad and she's got me. I might not be much of a tiger mom in my everyday life, when it comes to making sure Teeny gets what she needs, I'm told I can be pretty convincing and persistent.

When I find myself playing the what-if game when it comes to my two favorite things to fret about, the cognitive-ability-and-quality-of-life question and the will-we-be-able-to-adequately-provide-for-her question, I remind myself yet again that she is here now and happy now. She is loved now. She is provided for now. She has everything she needs and a lot of what she wants. We might have a small apartment. She might get mostly hand-me-downs. We might have to fill out financial aid forms forever. But she is surrounded with love. How many neurotypical people can say that? And there’s more. It’s not just that we love her. She loves us. She says so and she shows us with everything she does.

Like many difficult things, having a child with special needs can destroy marriages and lives. People just don’t know what to do. I definitely didn’t. I still don’t. Coming to grips with the fact that there are things in life I just don’t get to know right now has been the hardest part of this whole ride so far and it's still hard. But accepting that I don’t have all the answers has been humbling and it’s helped me in many other parts of my life. It has helped me be a less controlling wife. A more present and coaching supervisor instead of a micromanager. A more relaxed and laid back friend. I’m (slightly) less of a know-it-all, and I’m not so quick to judge and correct. Because we’re all just doing the best we can, aren't we. We all need love and empathy, not judgement and anger. Teeny doesn't make that harder for me. She helps make it easier.

Bee, at age four, is deep into imaginative play and dress up. For the past few months, Frozen kind of took over our lives. We scoured the earth for anything Frozen related for Bee and found an Anna dress, an Elsa dress, the Blu-ray of the movie, the soundtrack, a blue plastic ice castle and the character figurines. Bee pretends she’s Elsa all the time, waving her arms around freezing everything around her and singing Let It Go at the top of her lungs. Now Teeny has slowly and quietly fallen in love with Elsa too. Teeny loves Elsa so much that our little plastic Elsa figurine is often the carrot we use to motivate Teeny to use her walker during therapies.

Teeny has loved to dance for months, and now thanks to that song, she’s singing as well.

And between you and me, I secretly think of Teeny as my little Elsa. A beautiful child born with a special need she didn’t want and can’t control, yearning for love and acceptance; how can you not see the similarities?  

So yes, I got weepy with the evaluations and the baby clothes and the diagnostic email thinking about Before We Knew -- but not because I feel sorry for us. Not because things are so hard. I got weepy the same way I get weepy watching old videos of Bee, a chunky little baby doing a dance more like a stagger, clutching her Mickey Mouse doll and trying to sing along to her favorite song du jour. It's the same kind of weeping you do when you observe the passage of time, just a bittersweet reflection, a mother’s nostalgic they grow up so fast. In many ways, I am like all the rest of you and in many ways my kid is just like yours. She wants to wear Mama's big sunglasses. She wants to know her parents love each other. She’s got a favorite princess. She wants to sing and dance like any two and a half year old girl does. Seeing her caught up in the Elsa-love just like every other girl in the US between the ages of newborn and tween, and I swear to you my cup runneth over. I’ll say it again: I fucking love this kid -- with every ounce of my being. I would die for her a million times over and then I’d die for her again. But I don’t have to; I get to live with her, alongside her. I get to work with her, play with her, sing with her, laugh with her, learn from her. I breathe her in, snuggle her, watch her sleep, hear her say “Mama!” with joy and love every time I walk through the door. She is growing up and there is no before, there is no after. There is only today. As her favorite character in the world would say, It's time to see what I can do, to test the limits and break through! ... The past is in the past. Let it go!


  1. Awww! What a beautiful essay Aimee. You're such an amazing mom and a wonderful writer. Sending you and your family so much love.

    1. Thank you so much, RP. It feels good to know that you're reading! <3

  2. Aimee I know all those feelings you describe. Time will tell all. The diagnosis is not so important. I can see that you are learning the most important lesson and that is that our kids will live a good life no matter what. They are happy. And their lives have meaning. And they are loved more than people can imagine!

    1. Susan, thank you. You always have such kind and caring things to say. I read your blog and look forward to your comments on the list because I get so much from your open and loving approach to the many and complex issues you face every day. Your family is beautiful and I love reading about all of you.

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