Schuyler had a good week, aside from some seizure activity here and there. I’d say she might have even had the best week of her summer, because she spent the better part of it with her beloved godparents down in San Antonio.
Schuyler is always looking for an upgrade. One day she’ll accept that she’s stuck with the parents she was born with.
The week was a little chaotic because I was out of town and Julie had to work a few shifts. The arrangements I’d made to have Schuyler watched fell through the week before, and her godparents were enjoying their last week of vacation before going back to work, so it worked out nicely for everyone. (Well, it worked out because Schuyler’s godparents are amazing human beings who are willing to drive across a state the size of France in order to spend time with her. She might actually be better off if Julie and I were to perish in a crash or murder each other in a duel.)
But before it worked out, Julie and I had made a choice, one that never actually had to come to fruition. We’d decided that Schuyler would be able to spend some time, a number of hours in fact, at home by herself.
The next time something like this happens, she will likely do so.
Because she can. I think. I believe. I hope.
It’s tricky with any kid her age, and we recognize that Schuyler isn’t your usual twelve year-old girl. And I would be lying to you if I tried to claim that I am 100% on board with the idea of her staying by herself, even with her mother working just minutes away and with her iPad from which she can text us if she needs to. To be honest, the idea scares the hell out of me. It puts a black little pit in the very center of me, into which drain my courage and my belief in my own abilities as a father to protect her, to take care of her.
Independence is hard. It’s probably hard for most parents, but for those of us with kids who have disabilities, kids who are different and for whom the world isn’t always a good fit, it’s incredibly difficult to find the right balance. We work hard to give her the tools to communicate, we teach her how to keep the dangers of the world away as best we can, we show her how to function alone, how to feed herself and keep herself entertained and not to open the door for anyone at all, ever. We instill in her the skills that any twelve year-old should know.
But when the moment arrives, sometimes we blink. Sometimes our belief in our child’s ability to live an independent life, even for a few hours, well, that belief fails us. And I’m not sure about this, but part of me thinks that when it happens, we might just fail her, too, just a bit.
I’m glad that Schuyler got to see her godparents this week, incredibly glad. She loves them beyond measure, and they are probably the closest family she’s got. But when I think about the decision to send her to stay with them for a few days, I hope that I can honestly say that we did it because she would have fun, and because she deserves some summer vacation and deserves to be treated like royalty by two people who love her dearly, and not because we were afraid to let her breathe some independent air.
And the next time the need arrises for her to take care of herself for a few hours, I hope we won’t blink. I hope we’ll give her the room she needs to grow up just a little bit more.
And oh God, if we do, I hope she’ll be okay.