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Worlds Both Dark and Lovely

I feel like the very last thing I should do is write about the thing that’s been dominating my work, and my brain, for the past three months. First of all, I’m isolating a number of you when I do so. I mean, when I talk about the current… situation in the world, it’s all too clear that at least some of you disagree with me. Certainly enough of you disagree that we are actually in this situation now. I’m probably bleeding off readers for this site (which isn’t even my site) every time I talk about this, well, this situation. I should stop. I will stop. I’m stopping today.

Except that the situation becomes real tomorrow. So, you know, there’s that.

I’m going to try not to discuss this situation so much today, and I’m hopeful that I won’t fixate on it moving forward. That’s tricky, though, because this situation is causing epic levels of anxiety in special needs parents everywhere. My Facebook feed sounds like one long, drawn out primal scream. Every day brings new information, and it all seems to reenforce the same philosophy, one that states that society’s estimation of our disabled kids is dropping at an alarming rate. It was never all that high to begin with. We’ve been battling monsters that are unique to our children’s lives all along. Now there are demons at the door, from outside. And they’re just beginning to arrive. I don’t need to ask my special needs parent friends how they’re sleeping. They’re up. We’re all up.

Things feel out of my hands, in a way that they never were before. Schuyler’s polymicrogyria was never something I could control, or regulate or even really understand. And again last week, I was reminded of the stakes for her when another PMG kid died, in a big world made intimate by the internet and the meeting spaces that those of us in our little tribes frequent. I take those deaths hard, even personally. They fill me with strange and senseless guilt, in small part, shamefully, because my daughter lives when their child didn’t. Mostly, though, I feel guilt because when those other PMG families suffer that unthinkable loss, I realize that for occasional stretches of time, I’ve forgotten to be afraid. I’ve grown comfortable with a thing that shouldn’t be trifled with.

So the mystery puzzle-with-teeth inside my daughter’s brain is beyond my control, and the society she is inheriting from me and my foolish, foolish fellow citizens has also slipped away from me. Like many special needs parents, I need coping mechanisms. I find them in Schuyler.

She’s changed so much over the years, which feel like hours. When she was a toddler, before her diagnosis at the age of three (this would be, by my heart’s estimation, about two weeks ago), Schuyler was a fascinating enigma. She was happy, she was curious and she loved her parents and our friends with an almost alarming abandon, but she wasn’t always entirely with us. The pathways to communication were cut off, although we were only beginning to realize it, and her comprehension of the world around her was impaired, although we wouldn’t really understand that for years to come. Schuyler retreated inside herself, to a place she’s long forgotten and which I was never able to see or hear much about. SchuylerWorld was fragile, and I hated its inscrutability as much as I longed to visit it.

After her diagnosis and in the subsequent years with assistive communication technology and teams of smart people working to help her, Schuyler learned to communicate, and she embraced the world around her, even when it didn’t return the favor. Now she’s seventeen, and she’s finding her voice in a different way. She’s representing herself, tentatively for now, at the places I speak, and she’s aware of her place in, well, the situation I’m still not going to talk about. She’s seen the upsetting parts of that, and she doesn’t want to hide. She wants to make noise, to take her unique and indignant voice into the world. She wants to challenge the situation. Schuyler sees a world that is dark, and one that is lovely, and she wrangles with them both.

I see Schuyler’s naive anger and I want to share it, pretending I don’t know just how enormous and immovable this particular Goliath really is. I see the simple joy she finds in the world, in playing games and in writing stories and creating art and engaging with the friends that she’s made this year, friends we feared might never come. I watch as she navigates the tricky world of teenage attractions and embraces concepts of consent and personal autonomy that are going to be absolutely crucial to her survival in the coming years. They’re crucial already, and she’s taking them seriously in a way allows the heart rate of her poor father to relax ever so slightly. My fears of the past are easing; whatever challenges she may face, and they are still legion, it is becoming nevertheless clear that Schuyler is nobody’s fool.

I’m experiencing the changing world of Schuyler, which is erupting in upheaval almost entirely because she is seventeen and a junior in a high school full of other hormonally tormented souls like herself. I’m also living through the same larger, volcanic world as everyone else. The thing that brings me an odd kind of peace is understanding that Schuyler is outraged and energized by that larger upheaval, but it’s the one that surrounds her at school and in her social media that she’s navigating with the most caution and with unbreakable attention.

In taking my own focus inward to her more immediate world and trying to help as best I can, I feel like maybe I can recapture my own sense of autonomous self. I can’t solve the Big Thing, but I can tell her what it was like when I was seventeen and trying to figure out if love was a thing for me. I can tell her what I got wrong, which weirdly seems to give her comfort. I have value as a cautionary tale, I suppose, which is true of my adult, parenting self as well. So many times, I feel like my fatherly approach to the walls that stand in her way is to keep smashing my face into them over and over until I find a brick that’s loose.

I don’t need to get it right all the time; I only need to keep trying. Perhaps that’s the lesson I need to give Schuyler. Keep screwing up, and keep coming back for more. Keep showing up. Stay engaged. There’s a loose brick somewhere.

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2 Comments
  1. January 19, 2017 | Reply
  2. Jim Rossow
    January 19, 2017 | Reply

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