As she grows older, I like to think that Schuyler's relationship with me becomes easier to comprehend, although that's not a given. It's certainly stronger now than it's ever been, which to the parent of a teenager is a very welcome surprise. And yet, it is still very much true that our best moments come in wordless appreciation of each other. We curl up together on the couch and watch terrible monster movies, or play games together on her iPad, or wait outside in the morning air for her bus. Quiet moments sometimes, rowdy at others, but always with an indescribable ease, and the sense that we'll always have each other, no matter what comes our way. This is a great comfort to us both, even if it's fiction. Which it probably is.
She calls me Daddy-O. I call her any number of nicknames. Schuyler Bear. Spacemonkey. Chickenhead Jones. We call each other "Big Dummy" in public places, attractive disapproving looks. Which is fine; that's probably why we do it. We step on the heels of each others' shoes when we walk through stores. We are incapable of walking past toy lightsabers without slicing each others' heads off. We share waffle fries, but she always gets the end pieces, which we call "potato butts". When I ask her if she wants to eat a butt, she always says yes. Burps are always appreciated for their merit. Farts are always funny.
The more I learn about self-advocacy for people with disabilities, the more I feel like I learn from Schuyler's interactions. She does so much communicating, so much of it in ways beyond traditional verbal expression. Talking with Schuyler means taking in so much that is spun out of her wild gestures and her expressions and the tattered remnants of her sign language. Schuyler can be easy to follow sometimes, and yet get her on the phone and she becomes almost impossible to understand, even for those of us who live with her. Schuyler's language is an amalgam of all the ways we all try to make ourselves understood, but it works in a way that is entirely her own. Understanding Schuyler means paying very close attention to her. And that close attention is rewarded, not just in communication but in a kind of intimacy, a closeness that she delights in.
I'm overprotective of Schuyler, even when I try not to be, when I know that she'll be better for taking flight on her own. I let people into her life very sparingly. Sometimes I regret it wildly; most times, she grows from the friendships she makes and I guess I do, too. I watch Schuyler try to navigate her own friendships with kids her own age, and I wish I could make it easier for her, but of course I can't.
There are times that I see something else in Schuyler, something familiar. I watch dark shadows cross her eyes, and I see her frustrations rise at simple obstacles. I observe her need for solitary time, not playing or reading but simply watching videos on her iPad or just sitting. I recognize some of it. I know that we all have our own little monsters, and I fear that polymicrogyria isn't the only one I've given to her. I was probably Schuyler's age when I became aware of my own sadness, the kind that arrives on silent feet and turns the room upside down. I've never done a very good job of managing it, although I've started getting help with it. We're making sure that Schuyler gets help, too. I'm not sure if I'm entirely past my skepticism of that help, but for her, it's a given. She's got a lot that she needs help with. That's not one that she needs to face alone.
We talked about it yesterdayday, when she noted that I seemed a little sad. I explained how for some people, sadness just kind of happens, and it's a thing that we deal with as best as we can. It's just something that happens inside our brains.
"Like my little monster?" she asked. When I said yes, she said "You have a little monster, too!" She was extremely pleased at this, for reasons that both defy explanation and yet make perfect sense.
I don't know if Schuyler will fight that same battle as she gets older. But I worry that if she does, my own sad monster will devour me, as I often feel like it inevitably will, before I get a chance to help Schuyler cope with hers. I hope she learns how to do that better than I ever did.
