Unfair Monsters

Last week, Schuyler received a remarkable gift from an old friend of the family. Somehow she had acquired a catalogue for American Girl, and for weeks she had been obsessed with it. She picked out a doll that she thought looked like her, and she flipped through the catalogue over and over, repeatedly circling the things that caught her eye. My friend had an inside track with the company, so I sent him the numbers for the specific doll she wanted, and it arrived last week. Schuyler’s joy when she saw the mailing label for the box was palpable.

She named her doll “Sky”. Well, of course she did.

For the next few days, Schuyler fed on anticipation, the promise that at the end of the week, we would visit the giant American Girl store in Dallas. She spent her free time sitting with Sky as they went over the catalogue, picking an outfit and all the little extra accessories that are available. I can’t remember the last time she was as excited about something like this. After the emotional journey she’s had of late, and particular her difficulty navigating the dark woods of middle school friendship, I wasn’t about to deny Schuyler an experience this special, even if her new friend has creepy eyes and is made of plastic.

By the time Schuyler and I reached the store, her excitement was at Level Red. It was a rainy day, so we hurried into the building, under its huge and daunting storefront. Suddenly we were in the middle of the whole American Girl experience. Even early in the day, the place was packed with little girls and their parents. If you’ve never been to an American Girl store, it’s hard to describe, except that the whole thing has a slightly cultish vibe to it. I could be cynical and claim that it’s a brilliant scheme for separating parents from their cash, and it certainly seemed to achieve that task efficiently, but the thing I was impressed by was how personally the girls were invested in the whole situation, particularly with their own dolls. Schuyler was no different, and under the lights and in the bustle of the shoppers, she took in all the displays and choices with a kind of overwhelmed, almost hysterical joy.

I suppose I should have seen it coming.

After maybe ten minutes in the store, I turned and noticed Schuyler standing motionless before a display of musical instruments; even with her back to me, I knew. When I reached out and touched her, she turned and looked into my eyes, and I swear for just a moment she looked as if she didn’t recognize me. I saw confusion and maybe even fear, and then her face fell with exhaustion. I asked if she was okay, and she said that she was dizzy and needed to go to the bathroom. When she finally came out (about the time I was considering asking an employee to go in after her), she sat beside me on the bench I’d found and just leaned against my shoulder. After a few minutes, I asked her if she wanted to keep looking around. We hadn’t chosen anything.

“Can we go home?” she asked simply.

We grabbed a little sweater outfit that Schuyler had chosen earlier from the catalogue, and worked our way quickly through the line. When we got to the car, she climbed into the back seat and lay down, falling asleep before we were back on the highway.

When we arrived home about half an hour later, she awoke, and aside from a fatigue that lasted the rest of the day, she seemed completely fine. She spent the afternoon taking care of the newly fashionable Sky and was already planning what she wanted to get the next time we went.

Schuyler had rebooted.

As we continue to monitor Schuyler’s seizures, there are some factors that seem to trigger them more than others. Hormones probably as much as anything else, and the timing couldn’t have been worse this time, but so many of them have taken place in public spaces that commercial lighting is also a likely culprit. Stress and anxiety are definitely on the list of usual suspects. In some ways, I guess I set her up for a perfect storm of a seizure, and that’s exactly what she had.

The piece that I hadn’t completely anticipated, much to my shame, was that stress and anxiety aren’t always negative factors. As unhappy as her seizures have always made her, I just hadn’t imagined that she could become so overwhelmed with happiness and anticipatory excitement that her monster could throw her one of its extra special packages, the kind that take her out of the game entirely.

For Schuyler, it was mostly over within the hour. But for me, I couldn’t seem to shake the sense that this was crossing the line. Pushing that button in her head because she was experiencing extreme happiness? Her excitement at being in the American Girl store somehow earned a storm in her head, one that reset all her emotions to the simple desire to go home, to leave such a place before she’d even gotten started? Not for the first time, I felt real anger at the situation, and at her monster.

Of course, it’s silly to expect Schuyler’s monster to be aware of her happiness when it plots its next move. Indeed, the metaphor of a monster is deeply flawed, as I’ve always acknowledged. It’s hard to feel anger at the tissue in a little girl’s head, at a significant piece of my beloved Schuyler herself. The monster metaphor didn’t just provide a writer’s trick. It gave an otherwise powerless parent something to fight, a symbolic figure against whom I could rage when appropriate.

Schuyler doesn’t have a sinister little monster living in her head. She possesses a cold, measurable congenital condition, a broken architecture that was in place before she was even born. As a result, she works with a brain that is significantly malformed, maybe as much as seventy-five percent so, and yet has managed to successfully rewire itself to the point where she is completely ambulatory and is able to attend school and almost pass for neurotypical upon first glance. That passing might not feel right to some of you, but it is the path that she has very specifically and passionately chosen, and until the day comes when she rejects it and embraces a different path, I’ll support her efforts.

I’ll try to do so without sentimentality, and without trying to impose some concept of fairness where none is appropriate. But after watching how hard Schuyler works and how positive she remains despite it all, it’s hard not to wish for a monster that won’t use her happiness and her excitement against her.

I’ll never get that sympathetic little monster that will give Schuyler a break when she seems to need and deserve it the most. But I probably won’t stopping hoping for it, either.