I am in Hilton Head, South Carolina for the next two weeks, visiting my extended family. We all meet here once a year, usually the last week or so of July -- my two sisters, their husbands, their children and my parents. There are seventeen of us in all -- eight adults and nine children that range in age from 14 down to 2. We all stay in the same house and despite a minimum of space and a maximum of chaos, get along for the most part. There's usually a little fighting, a lot of laughing and next to no real relaxation. For the first few days or so, I hate it. I hate the noise and the stress of being with family -- somehow we all say the absolutely wrong thing at the wrong time to each other. At first, it seems, only the kids run around joyfully, happy to see each other and eager to carry on memories from the previous summer. There's always a little fighting with them as well and tears and complaints and tattling, but for the most part they get along.
But as we slowly get adjusted to each other and figure out who goes to the store and who fixes what lunches and what dinners, things get better. I realize that my mood is sometimes governed purely by how Sophie is doing.
Part of my own initial dread of this "vacation," is bringing Sophie along. It's a rare summer that she does "well," and by "well," I mean sleeps and doesn't have seizures. Traveling across the country is hard on her, but she loves the beach and I've stubbornly wanted her to be a real part of things. She IS a real part of things -- it just has to be sort of enforced. Because of the way the house is set up, there is no real safe place for her to be -- lots of hard, Mexican tile and scratchy seagrass floor coverings. We're nervous to let her walk around, in case she stumbles and falls or has a big seizure. We have to sleep with her at night so that she doesn't get or fall out of bed. But I'm making a long story short. Lots of family and the life sort of swirls around Sophie who sits in her stroller/wheelchair, in the middle of it all but not really. The other eight children run by her out to the pool. They open and close the freezer and grab ice and popsicles. Sophie sits and hums and watches. The younger children are still getting used to her. They circle her warily, unsure what to think of this large girl who sits in a stroller and hums.
Claudia, my youngest niece, is five years old and has a Louise Brooks bob and enormous brown eyes under the fringe of bangs. She already has a quirky sense of style and tends to throw on mismatched clothes that actually look good together. She grabs pieces of fabric and wraps them around her head or puts on her mother's sunglasses and pokes her hair behind her ears. Right now she is noticeably curious about Sophie. She and I walked alone down to the beach this morning, and as we strolled under the canopy of fir trees on the path, she kicked the pine straw and asked me, slyly, "Why is Sophie still sleeping?" When I told her that Sophie had a particularly hard night, that she hadn't slept because she'd had a big seizure, she asked, "What's that?" So I gave her my stock explanation of what a seizure is, tailored for a five year old -- that Sophie's brain didn't work properly sometimes and that she had a hard time learning things. I told her that Sophie couldn't talk but she could understand a lot, so it was important to pay attention to her.
Claudia said, "Why can she understand but not talk?" I don't remember how I answered this, but I know that I went on to talk about Sophie's special needs. I told her that we all had needs but that Sophie had special needs. I asked her whether she had any children in her school that had special needs and she said no. We walked a little bit further and then she stopped. Her head tilted a little and she looked up at me, a brown-eyed sprite in a sagging little-girl bikini. She lifted up one brown, knobby knee.
"But why," she said, "can Sophie walk even though she has special knees?"