Friday, October 31, 2014

It's In Her Code

It only took five years, but last year was the first year that Zoe seemed to truly enjoy Halloween. Between iffy autumn weather, indifference to or discomfort in her costumes, or (perhaps most cruelly) an inability to eat 95% of the candy she got in her basket, Halloween was never that much fun for her. There were some years she was back home and out of her costume within ten minutes. But last year, she braved a little misty rain and made it as long as the rest of the family. I chalk that up to two things: she picked her own costume for the first time (the Little Mermaid), and Daddy promised to make sure she got to try more of her own candy than in previous years (before he ate all the Twixes and Kit Kats).

The victory was undercut a little once we got home and saw pictures that different friends had posted on Facebook. One in particular had a daughter, who we know is within days of being the same exact age as Zoe, also dressed up like the Little Mermaid. I tried not to let seeing their girl walk from door to door behind her big brother, ringing doorbells and waving at the camera, sting too much, but it did. And it didn't ruin the day for Zoe, but it just reminded me why we get so frustrated that a fun holiday can't just be a fun holiday for Zoe, the same as for any kid. We know why, but that doesn't help. It was great that Zoe picked her costume, but I would have loved to be able to hear her explanation why she picked it, as this other girl was no doubt able to tell her parents.

It hadn't been clear why Zoe had wanted to be the Little Mermaid, but she'd definitely enjoyed it. A few months later we borrowed the movie from the library (again), and I watched it more intently. As I did, certain elements in the story began to stand out, and it answered some of my questions. I assumed, however, that my wife already had this shit figured out, since that's how things usually work around here. I wasn't prepared for the evening my wife came outside with me to talk privately, and she remarked how stupid she felt for not realizing why Zoe had been so drawn to the Little Mermaid. "It's because she can't talk," I blurted out. "And she wants to have legs. Or you know, be able to use the ones she has." My wife shook her head, annoyed with herself, and annoyed with me for realizing it.

It reminded me of the Ron Suskind piece from earlier this spring about his son's attachment to Disney characters, specifically the sidekicks. I've noticed that Zoe's interest awakes in any scene where the heroine is about to undergo some transformative moment. Zoe hates when we talk to other people about Rett Syndrome in front of her. She rubs her face in agitation, or she looks away in cool disdain. Still, she hears what we say in these conversations, and she's repeatedly heard us talk about the work underway in pursuit of a cure. She knows her own transformational moment may be around the corner, so she may identify with those moments when one of the characters in her movies is presented with them. Rapunzel's first moments outside the tower in Tangled. Tiana and her friends singing about what's going to happen when they're human again in The Princess and the Frog. But I don't know if she's identified with those characters to the same degree as the one who seems to be her new favorite.

This year, our house has been gripped in the oversize, destructive mitts of Wreck-It Ralph. We watched it with Hannah at least a year ago, but her toddler brother has taken to it unexpectedly. Dylan loves it; the idea that an over-sized person can make a living smashing other people's stuff  (even if it's just in a pretend video game) is the only thing to comfort his soul in its darkest moments, like when we make him go to bed. Because it noticeably calmed him down right before bed, we would play it a lot. At first, Zoe would get annoyed when it came on, mostly because she knew it was her brother's choice of movie, not hers, and that last hour or so before bed was precious airtime. She would even get so worked up, she'd start to have one of her Rett episodes.

A Rett episode can be mistaken for, but is not the same thing as, a seizure. They can last anywhere from one to fifteen minutes, depending on Zoe's disposition or what prompted it. When she's in the throes of one, her muscles will tense up, she will look off to one side, and sometimes open and close her mouth involuntarily. There are times we can calm her down, and prevent or curtail the episode. They can be caused by sudden changes in position; surprises, like a loud noise; or general annoyance (like the frustration at having to watch a movie your little brother picked). She has them almost every day, something that started about two years ago for her. During a recent episode, I asked her to stop glitching, a reference to the Vanellope character in the movie. It just slipped out, but I think she thought it was funny, and more importantly she listened. Over time, we noticed, she was laughing harder and harder at Vanellope's scenes (specifically any where she got to showcase her smart-assery). The cute little kid who winds up being an outcast because her body doesn't do what she wants it to? Sorry, try somewhere else, Vanellope, no one in this house is going to relate to you.

As Halloween approached, it came time to pick a costume. Zoe first selected Wonder Woman, browsing through the options on the Party City website using her Tobii eyegaze device. She seemed happy with that. But the more my wife heard Zoe's laughter in reaction to Vanellope's scenes in the movie, she wasn't sure Wonder Woman was our girl's first choice. She asked her if she would prefer to be Vanellope. The "YES" response was unmistakable, and my wife got to work. Amazingly, a replica of Vanellope's race car came together over the course of a week. Every time Zoe saw it, as my wife built it bit by bit, the pride on both their faces was my favorite part of the day.

She could not have a more perfect costume. She gets to use one of her least favorite aspects of her Rett condition (the wheelchair) to a cool effect. When she looks at it, I'm sure she says (to quote Vanellope herself), "THIS is me." Because it is. She's the sweetest little smart-ass kid we know, glitches and all. The kid is in a race every day against a cruel medical condition, and we have the utmost faith she's going to win that race when a cure is found. She might as well look cool and have a little fun while she does it.