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Eleven Years

photo 1July is always a strange month for me. It was eleven years ago this month that our world changed forever, although it feels a little dramatic to put it that way. At the time, we didn’t immediately know that our lives were about to rewrite themselves. It was incremental, that July.

At the beginning of the month, Schuyler was sedated (horribly so; it felt like she was dying right in my arms) and given an MRI, a shot in the dark by her neurologist at Yale that turned out to be the key to her maddening lack of words for the first three years of her life.

The rest of July 2003 was spent both worrying and living our lives. We waited for the MRI results. We got a little black pug puppy. And at the end of the month, we got the call, and had the meeting, and walked out afterwards into the New England afternoon sun. We didn’t know what to do next. We only knew that our lives as parents had just become far more complicated than we ever expected. We had no idea how much better those lives would become, too.

It’s been eleven years. We’ve lived in two different cities since our days in New Haven, lived different lives in that time. That aging pug is sleeping at my feet now, her squinched, fist-like face no longer black but now grey; she’s deaf and stiff-legged, and she makes a sound when she breathes that would be troubling except for the fact that she’s a pug and has always kind of sounded like this. We’ve had failures and we’ve had successes. We’ve watched some of those successes slowly fall apart before our eyes, and we’ve seen victories large and small and unexpected. A tiny, chubby-cheeked three year-old went into that MRI tube; a tall, pretty, impossibly grown up high schooler sits beside me now, watching Hellboy and eating all the food in the apartment as I write.

I’ve told this story a hundred times, of the worst case scenarios we were handed, of all the manifestations of her condition we thought would happen, and the ones that eventually came to pass. Eleven years down the road, we know what her monster looks like, in ways we simply couldn’t at the beginning. We know which of our worries were ultimately groundless, and we know, all too well, which of her monsters would turn out to have sharper teeth and claws than we ever imagined.

In the last eleven years, we discovered the assistive technology that would give Schuyler a voice, and we discovered the stubborn self-consciousness of Schuyler that would sometimes cause her to push it away. We found schools that tried to educate her but failed, schools that didn’t try at all, and schools that were sometimes able to reach her. Schuyler became a Texan in those eleven years. She has no memory of snow, not of the New England variety, and what spoken language of hers that you can discern carries a faint Texas accent.

We spent most of those eleven years thinking she’d avoided the most dangerous manifestation of her polymicrogyria, the seizures that take so many other kids away. When they finally arrived, they weren’t so bad, but they also come at night, in a form that her neurologist doesn’t understand. Her first MRI showed us her monster; her most recent, eleven years later, showed a few other developments, none considered threatening but “worth watching closely”. Eleven years have not been enough to calm the dread, both of the monster we know and the ones that still lurk, only partially understood.

Eleven years with Schuyler’s monster have made me a better person, not because I wanted to be or even made a choice to be, but because my daughter required it. I’m not sure that being forced to grow up a little actually qualifies as becoming a better person, but it’s what I’ve got and I’m going to take it. Eleven years of shitty remarks and prying looks from strangers have made me defensive, and probably oversensitive; they’ve made Schuyler a little paranoid, but they’ve no doubt made her stronger, too. Eleven years of advocating for Schuyler have opened the door to a larger advocacy, and the speeches I’ve given over the past couple of years reflect that. There might just be some good I can do in the world after all. I’m still figuring out what that might look like.

Mostly, though, the last eleven years have given me Schuyler. They’ve allowed me the time to let go of my selfish expectations of who I thought my daughter was going to be, and they’ve allowed me to adapt and appreciate and unconditionally love the weird and wonderful girl she is. It’s the girl she is despite her condition, and because of it. And I’m the father I am because of the many mistakes I’ve made and the occasional things I’ve gotten right. None of us in this family are the people we were then. The past eleven years have been a crucible and a wonder. We all bear scars and the remnants of war paint, and we all shine a little brighter when called upon to do so.

Eleven years sounds like a long time. It feels like the blink of an eye.

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  1. July 21, 2014 | Reply
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