Pretend and not pretend

R & S
Originally uploaded by Citizen Rob

The past seven days have been... well, up and down.

Last week, the three of us flew to Nashville for the Second Augmentative and Alternative Communication (AAC) Workshop at the Kennedy Center at Vanderbilt University. Julie and I were fortunate enough to speak on a panel of some extraordinary parents, and once again the conference was transformative for us all. We left feeling enlightened, valued, and perhaps even daring to be hopeful.

The day after we returned, Schuyler had another accident at school. She had yet another one today.

"I felt weird," she told me today as I asked her about it.

"You felt weird?" I repeated back to her, which is how you communicate verbally with Schuyler.

"Yeah," she said. "I felt weird in my head." She paused for a moment, considering. Finally she said, "I think it was Polly. The little monster in my head."

I have no idea what's going on, or how much her issues are related to her polymicrogyria or absence seizures that may or may not be happening. Before the end of the month, she will have seen a doctor and a neurologist. Maybe we'll have some answers. Perhaps not. Probably we'll have different questions.

Schuyler admitted to me that she is a little scared by this. She said she was a little scared, but also that she is Drummer Girl, and Drummer Girl isn't afraid of anything, so I guess that's her new talisman. We drove around listening to loud drum music (mostly music from Bear McCreary's score to Battlestar Galactica, which contains some of the coolest and most fearless percussion music I've ever heard) and picked up Tron from the RedBox so Schuyler could watch the cool girl with her same haircut who kicks ass. We didn't talk about her accident or her fear any further. Because Drummer Girl isn't afraid of tiny monsters that make her wet her pants.

I find it interesting that she has latched on to this idea of Polly. Schuyler does pretty well with metaphors, maybe because so much of what she experiences in her world is hard to explain. It's a little less confusing when she can believe in the invisible and the imaginary, even though she will also tell you that fairies and monsters are pretend. ("Dinosaurs were real, but they are pretend now," she informed me the other day.) She is comforted by them even as she knows they aren't real. Schuyler doesn't need Jesus. She's got Tinkerbell, and King Kong, and she's got Polly, who is the enemy but also her constant companion.

While we were in Nashville, Schuyler asked Julie and I to draw monsters for us. Julie drew something like an octopus with a chicken beak and antennas that shoot lightning, while I opted for the old school grumpy sea monster. Schuyler liked them both and displayed them prominently in the hotel room the whole weekend.

She liked them for what they were, but of course, they weren't her monsters. Hers is invisible, pretend and yet not pretend, and ultimately unknowable. We know it by its footprints, by the chaos it leaves behind.