Prologue
The first time we met Schuyler’s monster, it lay waiting to pounce, not from behind a rock or from the mouth of a cave, but peeking out from between the lab coats of two nervous and sad-faced doctors.
When we stepped into Dr. Simon’s office, we only expected to see Schuyler’s pediatrician. Instead, we found her waiting with Dr. Ment from the Yale University Medical School’s Department of Neurology. When we saw the sheet of MRI photos already in place on the light board, our world stopped. The doctors looked at us as if they wanted to be anywhere but in that office, and Julie and I looked back at them with the slow realization that we were about to get kicked in the teeth. We all stood there for a moment, none of us sure what to do.
No one except Schuyler, of course.
She’d been to doctors’ offices before. She was only three years old, looking for all the world like a perfectly normal pretty little girl. Friends and strangers alike often pointed out that she was a dead ringer for a young Drew Barrymore. Schuyler wasn’t like most little girls, however. She couldn’t articulate a single word.
Without being told, Schuyler had enough experience walking into doctors’ offices to tell with a glance what kind of visit it was going to be. Six months earlier, she’d been given a vague autism spectrum diagnosis that didn’t seem to fit, aside from her persistent, maddening silence. The gut feeling that the diagnosis was wrong had led to the MRI, and ultimately this meeting.
A quick assessment of the room told Schuyler what she needed to know. There would be no exam this time; this was going to be nothing but grownups talking. As we slowly entered the room and took our seats in front of the doctors like reluctant students, Schuyler set out to find amusement. She explored the room quietly as Julie and I sat and listened to Dr. Ment explain what they’d found in the MRI.
After two years of questions and tests and at least one unsatisfactory diagnosis, two years of trying to unlock the secret of Schuyler’s silence, there was an answer. Not just an answer, but a diagnosis. Thanks to the MRI, we could see it.
At the time, when friends would attempt to comfort us by saying that at least we had an answer, at least we knew what the problem was now, I explained how it felt. Imagine walking through the woods at night, all alone. In the darkness behind you, something is following, stalking you in the darkness. You can hear it disturbing the leaves as it moves, and while it never goes away, it remains hidden from view. In your mind, you wonder. What is it? A feral dog? A coyote? Or even a mountain lion? Your imagination kicks into high gear and your mind conjures up the most likely explanations. Suddenly you stumble into an open area bathed in moonlight. You step to the center and turn to see what is following you.
The bushes part, and out steps a Tyrannosaurus rex.
That’s how it felt, this answer to Schuyler’s mystery.
The meeting didn’t take long. Dr. Ment gave us the diagnosis and explained how rare this disorder was. It had taken them three weeks to figure out what Schuyler had, she said, and even then only with the help of a geneticist in Chicago who was the leading researcher in this field. She explained how there were only a very few diagnosed cases of it, fewer than a hundred in the entire world.
Then she named it. The monster in Schuyler’s head had a name.
We sat and we listened. As she explained what it all meant, I felt a hard thing in my stomach, almost as if I’d eaten bread dough, but harder. I felt all those secret hopes for my daughter’s future slipping away from me, all the ambitions parents pretend not to have for their kids. Julie’s face said the same; she was starting to cry.
Schuyler looked up at us, not understanding. I picked her up and played with her quietly, my face set in a smile for her. I listened to them and I played with her.
“I know when you get home, the first thing you’re going to do is go online and look this up,” Dr. Ment said. “I just want you to be ready. It’s going to be pretty rough.”
And it was.
We left the office and stepped out into the late summer afternoon. Julie cried, and I walked ahead a short distance with Schuyler. She spun and danced and laughed, pulling me along, frustrated at my slow pace and totally unaware that the world was a different place than it had been an hour before.
Nothing had changed. Everything had changed.
