That night, we quietly talked about how we wanted to raise our kid, a child who was both completely theoretical in our minds and yet sitting right there in the room with us, floating serenely a world away and at the same time no distance from us at all, just Not-Yet-Schuyler and the little secret monster inside her tiny, forming head.
We talked about conversations we would have with our child one day, decisions we'd make with that kid, the things we thought she would do, the rules on which we would stand firm and the rules we'd never even lay down in the first place. We wondered what our kid would call us (Mom? Dad? Mommy? Rob and Julie? Did we care?), what kind of half-Midwestern, half-Texas accent she might develop. We talked about our ridiculous ideas for what would make a kid succeed. I was steadfast that ours would be a Disney-free home (ha); Julie declared that she would only give Schuyler hand-crafted toys. (She actually tried this, but Schuyler hated them. To this day, there are few toys that excite Schuyler as much as a crappy piece of My Little Pony plastic from a Happy Meal.)
That night, in the dark, we tried to push back some of the uncertainty of what lay ahead of us by constructing a little pretend future. It didn't matter if things turned out the way we imagined. We didn't know if things were going to be okay, although we had no reason to think they wouldn't. We simply had to believe they might, and that was enough.
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Tonight we step into Schuyler's room to turn off the tiny pink lights that we hung in her room at Christmas, the lights that she asks us to leave on every night when she goes to bed. I can't imagine she wants them on because she's scared. She wants them on, I think, because they give her the light she requires as she has her quiet conversations with her dolls and her animals and her monsters and dinosaurs before she goes to sleep. She wants them on because they are pink, and pink is still cool, the coolest thing there is.
We turn off the lights, and Julie says, "She's sleeping with her witch." Sure enough, Schuyler has dug out her little Groovy Girl witch and is holding it close to her chest. Julie leaves the room, but I stay for a while. I lay down beside Schuyler and we sit in the dark together. She wakes just enough to talk with me, about her witch and Supermoon and what she's going to dream about. She curls up beside me and goes to sleep again, her witch still clutched tight, and doesn't wake when I leave.
And it strikes me tonight, as it does on many nights, on most nights, even, that more than ever, I still don't know if things are going to be okay. Unlike that night almost twelve years ago, I have reasons to believe they won't be.
And like way back then, I just have to believe, with a little more desperation and a lot fewer threads to grasp than before, that things just might be okay. And like that long ago night, it might just be enough.
5 comments:
Hope is the thing with feathers
That perches in the soul.
And sings the tune
Without the words,
and never stops at all.
Emily Dickinson
Such a lovely post, Robert.
This is a beautiful post, Rob.
But that photo, that photo is FIERCE. That girl looks like a warrior - because she is a warrior.
The child you describe here is so interesting, independent, beautiful, caring, determined, stubborn, fearless, and with a great sense of style and humor to boot.
I would say the parents you and Julie hoped to be 12 years ago have been far surpassed by the parents you are. Schuyler is a fantastic person, and you can't be a fantastic person easily without loving, caring parents. And to do it with the monster looming, that makes you more than exceptional parents.
I know it's hard to see when you are in it day to day, but you are doing right by Schuyler. More so than you may realize.
I watched the below documentary the other night, and it gave me great hope. Hope that many like my girl, Skylar can find happiness and independence.
It will likely look way different than anything we ever picture, or knew. And I think knowing that it will never be "that" life will always bring a feeling of loss and worry out from within.
But still, they will have their own life.
I am still working to accept that it will look nothing like the life of the general population. If I never get there, it will be my problem and loss, and I hope it does not affect my daughter's ability to feel happy and fulfilled.
That is why I grasp for books, counseling, others, my faith to help me in accepting it as fully as possible. This different life.
http://www.braininjurydialogues.org/credits.html
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