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A Monster’s Birthday

photo[1]It has been ten years since my daughter was diagnosed.

It’s hard to nail down a specific date. Diagnosing Schuyler took place over several weeks, from her MRI at the beginning of July 2003 to the meeting with Schuyler’s neurologist at Yale at the end of the month. For that matter, it took another year and a half before we met the doctor who’d diagnosed her remotely from the University of Chicago. But generally, it’s been a decade since all our unanswered questions and vague fears about our daughter’s developmental issues and lack of speech development coalesced into an awkward string of words — congenital bilateral perisylvian syndrome, later renamed bilateral perisylvian polymicrogyria — and a list of possible outcomes, all of them daunting. Ten years since our lives became altered by uncertainty and a monster sitting forever in the room, unknowable but omnipresent.

In that ten years, some stuff was bad. It’s worth noting, however, that most of the issues we faced weren’t nearly as awful as we’d been led to believe they might be. Doctors deal in worst case scenarios, which is probably appropriate. We don’t want them telling us “Geez, sorry, I totally didn’t see that coming.” And as parents, we ask them to predict the future. “Give it to us straight,” we demand, and they do. They tell us how bad it could be, because they are programmed to watch for all the bugbears, and we swallow that information and turn it into fear, because we don’t want to be ambushed by the bugbears, either.

Schuyler’s polymicrogyria hasn’t manifested itself nearly as harshly as it does for most kids, and for that, we are forever grateful. We know that within her bad fortune, she’s still very lucky. Her seizures could be much worse than the infrequent and relatively small ones she occasionally endures, ones that her neurologist believes are much less severe than the side effects of the medication she could take for them. Her developmental delays are less debilitating than they could have been, enough so that she’s been able to avoid a label that would have fallen on a borderline, according to her therapists, and would likely cause more social issues than solutions as she gets older. Even as other kids her age continue to be taken unexpectedly every so often, we dare to let go of our own fears of a youthful mortality, little bits at a time, and look to a different future, one that is still hard to see.

Schuyler might just be able to make an independent life one day, or something very much like that. Ten years ago, that was a tenuous dream, one that felt ridiculously pollyanna. Today, the faintest outline of what that might look like is beginning to take shape.

In ten years, we’ve met a great many people. We’ve worked with professionals who have helped Schuyler tremendously, and also a few who have gotten her completely wrong. We don’t resent the ones who got it wrong, but we can’t forget the ones who simply wouldn’t listen. In the past decade, we’ve met a lot of parents, almost all of them amazing people. We’ve met a few people, in person and online, who set off red flags, and I like to think we dodged a lot of bullets. We’ve met people who have disabilities very much like Schuyler’s and some with disabilities nothing like hers. We’ve seen cautionary tales, and we’ve seen inspirations, not in a treacly, artificial feel-good sense, but rather in a “this is what the future could look like for her” kind of way.

In ten years, we’ve become the kind of people who distrust miracles when they seem to appear but value them more when they turn out to be real. I fail, a lot, but I try. And sometimes, I hope, I get it right. I’m not sure I love the person I am today, but I like him a hell of a lot more than the guy I was in 2003.

In those years, Schuyler has grown, from a cheerful but ethereal and awkward little girl who existed largely in her own head to a vibrant, often extroverted teenager. She can be petulant and unreasonable, and she can be subject to startling mood swings, but it’s no longer easy to determine how much of that is her disability and how much is just garden variety adolescence. Honestly, it’s kind of nice, not knowing.

Ten years have gone by so quickly, although in looking back at the changes, in her life and in ours, the landscape has changed completely. Ten years from now, Schuyler will be twenty-three. Just writing that causes both great emotional response and not a small amount of gastric distress. The future will unfold as it’s meant to, and it will be more terrible and wonderful than I can currently imagine. But as the next decade unspools, the shape of Schuyler’s future will be more and more determined by her own choices, and shaped by her own hand.

And that makes me happy, in ways that are unusually uncomplicated.

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