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In addition to her natural empathy, Schuyler holds on to some fantastical ideas about her world, a place in which monsters and and magic and mysticism still play a central part in her thinking. She understands the difference between that world and the real one in which she lives, but she still copes with the hard stuff with a touch of disconnect. This week, she'll face one of the hardest things the world has waiting for her. She'll face grief, the kind that represents the natural order of things, but also a level of pain and finality that will undoubtedly challenge her.
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I confess, I've worried so much about Schuyler finding her tribe, but in some ways, she's had them around her all along. I think I always envisioned a close group that hung out after school and communicated regularly and folded each other into their daily lives. I realize now that I've been looking at it through neurotypical eyes. Schuyler's tribe was never going to behave like I did with my youthful friends. Their particular obstacles are incredibly complex, and the logistics of something as simple as a trip to the mall to hang out are complicated. In the world of Schuyler's disabled friends, electronic communications and social media have become something of an equalizer, and that's where they navigate much their tricky relationships. They're all finding their way, with tools I never dreamed of at her age. Schuyler's Island of Misfit Toys is part of an archipelago.
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I know there's a boy or a girl out there (probably a boy, judging from her interests so far, but never say never) who will meet Schuyler and will look past her little monster and her childlike nature, who will see what the people who know her already see. He'll recognize the hard work she'll require, but he will also understand how very, very worth it that work will be. He'll know that he's found a girl who is literally like no other in the world, a person who is unique in ways that transcend the simple individuality of every human. He'll see what a perfect friend she can be, and he'll understand that her gigantic whale of a heart is capable of such love and devotion.
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As I've written before, I'm a big proponent of overbelieving. I've never been hesitant to encourage Schuyler to reach far beyond her expectations. Time and time again, she has responded by exceeding those expectations. Like Santa Claus, the encouragement that "you can do whatever you want in life, be anything you want to be, as long as you're willing to work for it" is a gentle lie told to very young children. It's one that we as parents understand will be shaped and molded as our kids get older. When you're five, it's entirely feasible that you could be a cowgirl or an astronaut one day. When you're a teenager, that conversation become a lot more real world.
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This weekend was a big risk. One week after her sixteenth birthday party and the bumps in the road she suffered there, we took Schuyler to Las Vegas to attend a surprise fiftieth birthday party for one of my best friends (and Schuyler's godfather). Last weekend, she was undone by a gathering of her school friends that she basically sees every day, over pizza and games. We followed that up with a trip to Las Vegas, a place that is the very physical manifestation of the concept of overstimulation. It's safe to say that we were concerned.
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I learn from Schuyler and her gigantic good heart. She teaches me every day, and mostly the thing she tries to impart to me me is simply to lighten up a little. It's a hard lesson for me; at times, I feel like my fatherly life's narrative has been written in worry. But it's the one lesson she never gets tired of giving to me.
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Aside from the obvious, Schuyler has always had something of a lucky brain. It's pretty seriously affected by her polymicrogyria, but you'd never know it from seeing her. Schuyler's brain is working in ways that are a mystery to everyone, even her doctors. Areas that should be deeply impaired are functioning at high levels. Just being ambulatory is something of a miracle for Schuyler, and she is so much more than just ambulatory. Her enigmatic brain isn't simply doing more than it should. It's doing most of what it should. I hate Schuyler's monster, but God, do I love her brain.
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We were in line at the grocery store (the place where all these kinds of stories seem to take place). When we reached the front, we saw our cashier, a nice, smiling young woman who had a lightweight, active-type model wheelchair parked behind her register. She and Julie chatted as we checked out, and she watched Schuyler very closely as we interacted. (I believe I was being my usual mature self.) We're accustomed to Schuyler being watched; there's a kind of "Uh oh, what's going on here?" moment with people when they realize that things are not quite what they appear with my daughter. But this time, there was no trepidation in her look, only friendly curiosity.
