Twelve Years

Schuyler’s monster doesn’t have a proper birthday. Perhaps it could be said to share Schuyler’s. Even that doesn’t feel quite right, because it was there from very early on, probably the second trimester or so, a shadow unseen inside her tiny developing mind. She wasn’t yet a baby, but her monster was already a monster, only waiting to be brought into this world with the sole purpose in life to bedevil the life of my daughter.

So no birthday, and really, even its discovery is hard to pinpoint. In the summer of 2003, Schuyler had an MRI at Yale at the very beginning of July. The resulting scan was examined, fussed over and finally sent off to the University of Chicago, where the diagnosis of polymicrogyria was made. As a result of its circuitous route from scan to identification, the news of what exactly was happening inside Schuyler’s brain didn’t reach us until the very end of July. Some people celebrate their birthday for a few days, or maybe even a week. Schuyler’s persistent monster selfishly claims an entire month.

I remember a lot about July 2003. I vividly remember the MRI, how miserable and full of fight Schuyler was until the moment the anesthesia hit her bloodstream from the IV in her hand, and how very lifeless her body felt immediately after. After that MRI, we spent the rest of the month enjoying summer. That was the summer that a new puppy came home to join our family, a feisty little pug who has grown old and stiff-legged since then. We spent that month at play, trying not to worry about the results. The thing that I recall with bittersweet hindsight was how unprepared we were for the answer. It was just another test in a series of tests, until it very much wasn’t.

Mostly, I remember how small Schuyler seemed. Small and vulnerable. A monster’s snack and nothing more.

In the twelve years that followed that awful month, Schuyler’s life has changed radically. All our lives have changed. Her monster has been gentler that we were led to expect, but at the same time its effect on her world and on the young woman she has grown to be has been more tenacious and sometimes more sobering than I had hoped.

Schuyler’s monster hasn’t harmed her body like we feared it might, and is less and less likely to do so every year. But it has thrown up barriers for her than I never anticipated. It has tampered with her perception and most of all her understanding of the world around her, and it has robbed her of opportunities and life joys that I’m only now becoming aware of, up to and probably including a life of independence. Polymicrogyria has taken so many children like Schuyler and has caused so much physical impediment for so many more, but it hasn’t broken Schuyler on the outside, not very much and not in ways easily seen. But it has hurt her, and it has diminished her, and all that began with a hot July in Connecticut twelve years ago.

Life went on, as it turned out, but I have to confess, part of me changed then. I was recently looking back at some of the now-offline writing I was doing back then. And there’s a line in the writing, beginning with the false PDD-NOS diagnosis she received a few months before and solidifying at the end of July. A sadness took hold that has endured, like a stain.

Something broke inside of me, I think. I’m not sure I ever fixed it, not completely, but I tried.

I’m trying still. Trying to help that tiny little girl, so unprepared back for what was waiting for her. That tiny three year-old Schuyler is long gone, replaced by a teenager, tall and strong and wild but still not quite ready. Still negotiating with that shadow.