I almost didn’t recognize myself.
I came across this photo from at least ten years ago as I was migrating my old book site from its now-inaccessible home to one on Blogger. It was the photo that Publisher’s Weekly had found somewhere — Flickr, perhaps — and used when they announced the sale of Schuyler’s Monster to St. Martin’s Press. I wasn’t expecting it; I opened the issue that PW was kind enough to send me, and there I was, grinning back at me from the pages of a real publication, talking about my book as if it actually existed somewhere beyond three or four chapters and a word puddle inside my head. It was thrilling and terrifying to behold. None of that shows on the face of younger me, taken during a break by another photographer at an event I was shooting. That guy looked like he didn’t have a care in the world. Which of course was wildly untrue. He was already carrying Schuyler’s newly identified monster on his back, like Yoda, like it already held his fate in its monstrous hands. But you wouldn’t know it from that photo.
As I was going through old interviews and reviews, the narrative that I was reading felt different, too. In the radio and podcast pieces, my voice sounded unlike the me I know now. Maybe it was just because the book was new, Schuyler was young, and everything was unknown and scary but also full of possibilities. Younger me talked about how Schuyler had landed in a school district that understood her needs and would take her through to high school graduation, supporting her AAC all the way. Rob of the past was hopeful that Schuyler might never develop seizures, that she would ultimately prove not to have an intellectual disability, that she would attend classes sitting alongside her neurotypical classmates, that the future was all hers, that assistive technology would provide answers to questions we hadn’t even thought of yet. The future was unknown, but that guy wasn’t afraid to fill the blank spaces with optimism.
I can see now that much of what I believed was due to a simple lack of information. Much about Schuyler’s polymicrogyria had yet to reveal itself. The limitations of her school system would be revealed eventually. Seizures would find her, although thankfully they would slap her around wearing comparatively gentle gloves. Technology would change, both to her benefit but also in ways that would complicate the professional relationships we were forming with both her teachers and her assistive technology providers. There were things I couldn’t know yet.
But in some ways, it’s clear to me now that I was in denial about some very significant things. It should have been clear to me that Schuyler had some level of cognitive impairment, not just a delay that would sort itself out soon enough, but a gap that she might never completely bridge, a monster that would never entirely shrink away. I should have already begun dismantling my fantasy of a society that would accept her in her weirdness and her wonder. I should have seen that her path was going to be very different and more difficult than the kids around her, and later the adults around her, her fellow young adults.
Ten years ago, the future felt far away. Anything was possible. Everything was possible. We would eat the air, promise-crammed. That’s what I see, in that photo.
I’m not sure what to think of who I am now. I’d like to look back at that younger me and say, “Oh my god, what a dumbass. He knew nothing.” But I miss him. I miss being him. He felt fear of the future, but the ticking clock didn’t sound so loudly in his ear. He didn’t have answers, but he had time, and there was no way he wasn’t going to be a warrior from that point on. He’d written (or was in the process of writing) a book about being a confused father stumbling through some mysterious darkened places, but that was over. Schuyler’s monster had been sighted and put on notice.
I have more information now. I’m not sure I’m any smarter, though. I know more about how the system works for kids like Schuyler, but that mostly means I’m simply more aware of the limitations. I have a better understanding of people, of Schuyler’s classmates and the members of her community and the larger world beyond, but that bigger world has been a little less impressed and captivated by her than I thought it might be. On a bad day, it’s indifferent. But they’re not all or even mostly bad days, and for that, I’m grateful.
If I could talk to that other, younger me, I’d warn him. It’s going to be harder than you think, I’d tell him. The monster is more complicated than you’re expecting. And a lot of that monster will manifest from the outside. People will let Schuyler down; YOU’LL let her down, too. Maybe kind of a lot. That’s going to hurt the most.
But before his big, stupid smile could fade completely, I’d give him one last hint about the future. Balanced against all that, I’d tell him, the biggest surprise you’ll encounter is that this weird, mostly internal little girl you know is going to become the most interesting human being in your world. She’s going to be a little more broken than you might realize now, but she’s also going to be much more tenacious. She’s going to love the world whether or not it loves her back. She’s going to be funny, not just “little kid” funny but actually funny, more than any adult you’re going to know. She’s going to be different, but she’s going to fight to own that difference, and sometimes she’ll win.
Mostly, I would tell young me, she’s going to have a heart like a whale, and she’s going to love with its full capacity. And while you’re going to age a lot and become a curmudgeon with a grey beard who picks fights on Facebook, you will nevertheless occasionally get out of your grouchy head space and realize once again that you are lucky to have such a daughter, luckier than any other human being you know.
In the end, it’ll be okay. It will. You’ll see.
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