Manifesto

Pirate scruff
Originally uploaded by Citizen Rob

A know there are writers out there who look for their topic and then sit down and just write about it. I'd love that. For the past few months, I've been trying to be one of those writers. I've been trying to work on a new project, one that has nothing to do with disability or parenting or the stories and faces of broken children and their broken families that haunt me when I close my eyes. Writing about them was beginning to wear down at me, leaving me feeling emotionally exhausted. I began work on a book about music, one that I'd been thinking about for a long time and which sounded like a lot of fun to me. My agent thought this new book topic was a winner, and so I was ready to be done with monsters for a while.

But that's the thing. I never stopped to ask if monsters were done with me.

Back in June, we attended a conference for children with a variety of related neurological developmental disorders, including Schuyler's own, polymicrogyria. The whole thing was very touch and go for a while, with funding being sort of up in the air until sponsorship was secured. By the time we arrived, I wasn't thinking of much more than the logistics of the trip and the presentation I was going to give, on implementation of AAC from a parent's perspective. I was in a very professional mode, and feeling a little detached from the people I was going to be speaking to.

All that changed, dramatically, as soon as we arrived and I began to meet people. My people.

I've already written about this before, about how I suddenly felt like I was part of a larger community, a family, even. But in the weeks since the conference, I've thought a great deal about the experience. More than that, I've felt about it. It's been a complicated thing to process, and I'm just now beginning to get a handle on it.

My presentation at the conference focused on Schuyler's experience with AAC technology, her Big Box of Words and now Pinkessa. I spoke at length about her achievements at her school here in Plano, successes that should eventually lead to her graduating from high school, a goal that was once considered unattainable but has now become just part of the plan. I spoke about hope, and about believing in kids like Schuyler and the things they can achieve for themselves if only given the opportunity.

But I only realized later that my pride in Schuyler had perhaps allowed me to miss something. Schuyler was among the highest functioning kids at the conference. For most of the parents at the conference, finding a way to help their child communicate would be a problem that they'd love to worry about. For many of them, their first priority was to save their child from the seizures that were tearing their lives apart. They were there to find a way to keep their kids alive.

At the final presentation of the day, the geneticists and doctors who had examined most of the kids at the conference spoke to a packed hall, the same room in which I'd spoken earlier. They mostly spoke about the current status of their genetic research, and about the seizures that plagued most of these families. One parent raised his hand and asked the Hard Question, the "be careful what you ask because you might not like the answer" question. He asked about life expectancy.

I'm not sure exactly how I feel about how the doctor replied, but the question had been put out there and so perhaps a straightforward answer was appropriate. The doctor put together a hypothetical patient with a number of specific conditions that roughly matched most of the kids at the conference. And then he said it. He just opened his mouth and said it. "Statistically, that patient could expect a lifespan of approximately eight years. If they receive home care rather than full-time clinical care, that number goes up to about ten years."

I looked at a father who was standing beside me at the back of the room, a giant of a man whom I'd met earlier. His expression was calm, but the color had drained from his face. He glanced over at me and quietly said, "That's my daughter he just described."

It occurred to me then that when Schuyler graduates from high school, a goal I'd proclaimed with pride and perhaps some insensitivity, a great many of these kids would be gone. Just gone.

In the weeks since then, I've tried to make sense of that experience. I can't seem to let go of the memories of these families, of the parents who never appeared to crack, even when their kids' needs threatened to overwhelm them. These parents weren't emotionally detached; indeed, I would challenge the parent of any typical child in the world to demonstrate the same kind of unflinching, unconditional love that these mothers and fathers showed at every turn, whether that meant making their kids laugh through tears or carefully dividing their attention with neurotypical siblings or fighting with feeding tubes or just holding their kids tightly while they suffered through yet another seizure. These weren't stoic parents, but they were unflappable. They weren't heroes, but at the same time they were, you know? Whenever it was that they found time to lose their composure, it wasn't out in the world, and it certainly wasn't when their efforts were needed.

And almost without exception, when I spoke with these remarkable parents, they expressed their appreciation and their admiration for me, for ME, for sitting down and writing a book. I wrote a book about raising a little girl whose monster squeaked compared to the ones their kids battled. I told a story with a level of "tragedy" any of of them would love to have in their own lives, and one with an ending happier than they were being told to reasonably expect for their own families. And they thanked me for it, often tearfully, because I was giving Schuyler a voice, and so in some way, perhaps I was giving them a voice, too.

I can't stop writing about this, not yet. I can see that now. I can't walk away from this. I'm not the greatest writer in the world, and I'm not the only one who can stand up and talk about this place, this terrible and wonderful world of afflicted children and their families. I certainly haven't paid the same price of admission to be here, with my healthy daughter and her uncertain but non-lethal future.

But I've scratched out a platform, and I've gotten a small portion of the world to listen to what I have to say. And as I look back on the experiences I've had and the things I've written about over the past few years, since the book came out, I know that I have more to say. I have something to contribute, even if it turns out to be some rambling, unreadable Manifesto of the Broken that no one will ever want to publish. Which it may very well be.

I can see it now, with clarity. It's not about being published, or being able to call myself an author without air quotes or a "no, really!" It's not about book signings or Good Housekeeping articles or Amazon rankings or a fucking Wikipedia entry. It turns out that Schuyler's Monster was never about any of those things.

It might have simply been the first step.