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It’s Complicated

“So, this is my life. And I want you to know that I am both happy and sad and I’m still trying to figure out how that could be.” – Stephen Chbosky, The Perks of Being a Wallflower

It happened again last night. I had the dream I’ve been having for almost a decade now, since the summer of 2003, when Schuyler was diagnosed with Congenital Bilateral Perisylvian Syndrome, now known to the world of medicine as Bilateral Perisylvian Polymicrogyria and to the world of Schuyler as her monster.

I dreamed that Schuyler spoke to me, in a voice as clear as the ringing of a bell, a voice I’ve never quite heard like that but which I suspect I’d recognize in an instant just the same.

I’ve had this dream so many times. I couldn’t begin to count them. They began the very night of her diagnosis, after we’d faced a hard reality, the one in which she would almost certainly never speak, or even come close. In that dream, and in the countless ones that followed, she said the same thing. She told me that everything was going to be okay.

Dream Schuyler was right. Things haven’t been easy, but they’re okay.

As Schuyler has grown older and her prognosis has changed, the dreams have changed, too, The dire predictions about her speech turned out to be only partially correct. Schuyler’s words can still be hard to understand, sometimes impossible, and her consonants haven’t actually improved much over the years. But her inflections are perfect, and she gets by with less trouble than you might imagine. As Real Schuyler’s vocalizations have improved over the years, Dream Schuyler has had more to say, and with a voice that I imagine is fairly close to the one she’s been denied but which she herself probably hears clearly in her head when she speaks.

When I awaken from these dreams, my emotions are… complicated.

There’s a lot about raising Schuyler that is complicated. That’s true of any special needs parent/child relationship. It might be one of the few universal truths in an otherwise ridiculously diverse breadth of experience in the disability community. The discussion of what we want for our kids has been one that has grown incredibly contentious over the past year or so, which is a shame. Anything that causes us to fight with each other makes us smaller and less empowered as a community, at least in my opinion, but it’s an important and emotion-filled topic. I wish it could be more nuanced, but I think I understand why it’s not.

The question is itself complicated. I’ve been asked before; perhaps every parent of a different child has been at some point. If you could take Schuyler’s disability away from her, would you do it? You talk about fighting her monster; what if you could actually defeat it? And if you could give her a life that had never been marked by disability, if you could wish her a neurotypical mind all the way back, would you do so?

The cure question. It’s one that starts a lot of fights, and yet it’s not the same question for everyone. It perhaps feels very different to the parent of an autistic child or a kid with Down syndrome than it does to the mother or father of a child with cerebral palsy or microcephaly, with organ failure or severe epilepsy. And even among these groups, you’ll find no agreement. Some parents accept their children’s disability as an integral part of who they are, even if it threatens their lives. Others hope for a cure that will give their children a shot at a typical life, regardless of the danger or the lethality of those children’s disabilities.

There’s no right or wrong answer. No position of greater love than the other. Like everything else in this alternate world of disability, it’s not that simple. It’s not even remotely so.

As for myself, my own answer to that question should be clear by now. I’d do anything to give Schuyler the thing she wants most of all. I’d sacrifice my own health and my own future to calm her monster, to smooth her far-too-wrinkled brain, to ease her seizures and clear her clouded mind, and most of all to untie her tongue. Schuyler dreams of being like any other girl her age, teetering on the brink of her teen years but occupying a spot in it uniquely her own. She’s ambulatory enough to move in that neurotypical world, and she understands it enough to reach for it. But it eludes her, sometimes with a brush of her fingertips against her goals and dreams. Schuyler reaches for it, but she never quite grasps it, and it breaks her little heart.

So no, I’m not personally a believer in acceptance or neurodiversity, but only for Schuyler. I don’t have an opinion on your relationship with your disabled kids, or your own relationship as a disabled person with your neurotypical parents. And I shouldn’t.

Because yes. It’s complicated. It’s more complicated than I know how to process sometimes, just in the face of my one daughter with her broken but beautiful brain. It’s far too complicated for me to think about where anyone else’s situation is concerned.

When Schuyler awoke this morning, she found me sitting alone, quietly. She climbed in my lap and put her head on my shoulder, and we sat that way for a while in the morning’s gathering light. Not sad. Just quiet. She asked me the same thing she does most mornings.

“What did you dream about, Daddy-o?”

“I dreamed about you,” I said. “I dreamed you were talking to me.”

“What was I talking about?” She asked, her hand moving to her throat as she pondered the idea of speaking.

“Nothing bad,” I said. “You were telling me all about chinchillas!” (We’ve been talking about getting a chinchilla for my birthday, and so our conversations have been pretty much All Things Chinchilla lately.) She liked that.

“Do you ever talk in your dreams?” I asked her.

She gave it some thought. “No,” she finally answered.

“You never talk in your dreams?” I asked.

“No, I don’t think so. But I want to talk like everyone else.”

“I know you do, Scout. I do, too.”

“But I’m okay, Daddy-o!” And with that, she was in her happy place again.

Schuyler knows what she can’t do, and she wishes things were otherwise. I don’t think that’s ever not true, not for a few years now. It is complicated, for her as well. If there’s one way that Schuyler is turning out to be exactly like her father, it might just be her innate understanding that our joy and our anxiety walk together. Not as friends, not exactly. But perhaps as family.

Like I said, it’s complicated.

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Visit Build-A-Workshop’s blog, where co-founder Julia Roberts shares her family’s journey with special needs.

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11 Comments
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