I feel like I’ve been watching the world exert a lot of pressure on the families of people I care about a lot. There’s a lot of talk about the realistic obstacles for creating a larger disability community, but the web of friendship and support that has grown between parents of special needs children, as well as persons with disabilities themselves, goes far beyond exchanging information and support. In some ways, this community has become its own family, and when the world presses down on one of us, it’s felt across us all.
I’m not even talking about the anxieties and challenges brought on my our kids’ disabilities themselves. That’s its own big daunting topic, and it’s also only one side of the coin. The other side is the part that is impossible to describe, except to say that it’s the part of the equation that leaves us feeling immeasurably lucky to be a part of our kids’ complicated lives. We are shaped by forces larger than ourselves, but in the shaping, we are granted lives of impossible beauty.
No, I’m talking about the external forces. I’m talking about the ugliness directed at parents from different directions even as we endeavor not to screw up at this one most important thing in our lives. I’m talking about the schools that drop standardized testing and constant evaluations on our children. Our kids, most of whom are ill-suited to handle the pressure and the cold arbitrary nature of being judged at how well they do at cramming themselves into neurotypical-shaped holes. I’m talking about health care professionals who treat our kids like case file numbers, and who leave us to pick up the pieces when they neglect them. I’m talking about the other families, the other kids, the other members of society, the ones who (wait for it…) Just Don’t Get It. I’m talking about the people and the institutions and the societal narratives that press down on our kids and our families, as if determined to break us.
I’ve seen so much of it in the past few weeks. I’ve watched people about whom I have come to care deeply reach points where I would expect a typical parent or child to fall apart. The fact that these are parents and kids who are anything BUT typical probably saves them. But having been there before myself, it’s hard to watch.
And it makes me think of a chapter I wrote in my book, at a moment seven years ago when we were flying home from a dispiriting meeting with Schuyler’s doctor. My fears at that time weren’t just about what Schuyler’s troubled brain might do to her so much as what the world could inflict on her. And so I share this chapter with you, in hopes that at the very least, it might offer something like commiseration, even in the form of a fantasy that was ultimately no good for anyone.
(Chapter 16, Schuyler’s Monster)
So it goes, I thought on the plane as I watched the earth slide slowly below, fields of snow scattered like sheets of smoky glass. It’s never going to change.
We had high hopes for Chicago. Instead we got a grander version of “Here’s what’s wrong with your child, it’s even worse than you thought, and no one can fix it. Bye now!” Schuyler was observed, placed on a chart with all the other kids with other monsters and then sent on her way. She was evaluated, as if we didn’t already know that she was behind all the other monsterless kids in the world and might not ever catch up. We knew that. We had lived in hope, had moved to Texas and scratched together a new life so that hers could be better, and instead she ended up in one more substandard school. Sitting on that plane, Julie and I rode in silence, lost in the consideration of exactly how little we’d gained in the year and a half since the diagnosis.
And so it goes, and so it goes, and so it goes.
I think most people, or most shallow people like me, anyway, keep a secret list of all the things they’d do if they won money. There are the small award dreams, of course, like a new car or even a house, depending on how responsible you are. (I always took the car in my prize-winning dream. The idea of buying a house frightened me back then. It frightens me still to this day.)
But there are also the Big Lotto dreams, the ones involving huge sums of money and real changes in your lifestyle. One day you’re working for The Man and driving a car with rust holes in the bottom, and the next day, you’re holding the giant fake check and having your picture taken. You can do anything. Quit your job, buy the company, and fire your old boss. Put your name on a building at your old college, the one that kicked you out for excessive drinking and a 1.0 grade point average. Buy a blimp. Whatever. You can do whatever your newly, fabulously rich heart desires.
Flying back from Chicago and watching the cold world pass silently and soullessly below, my Big Money Dream changed. I supposed it had once been all about special schools and the best speech therapists money could buy. My dream had been about hope for Schuyler, about fighting tenaciously for progress and throwing such impressive fistfuls of cash at the problem that she would not be able to do anything except somehow crush her monster and achieve the life she deserved.
In my new, shameful Big Money Dream, I would take my $200 million payoff, say goodbye to all my friends and family, post one last blog entry, and then take Julie and Schuyler and move us all far, far away, to that mythical and deserted South Pacific island that has served as the subject of so many fantasies and New Yorker cartoons. It would be more beautiful than Hawaii and more remote than Pitcairn.
I would build a little hut on our island, with a thatched roof and perpetually open windows overlooking a crystalline lagoon. That nameless, uncharted island would be our paradise home forever, and we’d spend the rest of our days with Schuyler, a perfect civilization of three. My little girl would know nothing about monsterless kids or where she fell on a sad chart in a geneticist’s office, and she’d never have to ponder the holes that a mean-spirited God had punched in her brain.
Schuyler would carry her monster, but she’d never know it, and for all the days of her life, she would only know that her tiny world was one of beauty, and that she was loved by her parents with a passion and a tenderness that enveloped her. Every night, after sitting on the beach with her watching the sunset, I would go to bed and sleep a deep, untroubled sleep. I would never again have that dream, the one where Schuyler spoke to me and told me not to worry, because all the things I worried about had been left behind on the far side of a protecting ocean.
Most of all, until the day I died, she would understand that, monster or no, she was the only child in my life, and not just because of the fear of another monster riding into the world on another innocent brain. She would know that she was the only one I ever really wanted.
The plane tilted forward ever so slightly, and I glanced out the window. The snow had passed behind us a long time ago, and we began descending back to earth, and not to my selfish island, which I desperately wanted but knew was wrong for a million reasons.
Editor’s note: Rob wouldn’t do this, so I am. I wanted to tell you to go and buy Schuyler’s Monster from a little book store in your neighborhood. Or you can purchase it here, or go to his author’s site to find online stores. Get his book if, you know, you’d like to laugh and cry.