|Sculpture Garden, Norton Simon Museum|
I've got a whole month of Sophie days ahead -- no school and no Communicamp this year. It's hard thinking up things to do with her, and there's some rigamarole involved given the stuff I have to schlep. I'm not complaining, but if I were a man I'd do some mansplaining. There are definitely days when I'd rather let her roam around her room, picking up toys to mouth, aimlessly, but those days leave me feeling not so much guilty, but rather inadequate. I know she needs attention and stimulation, but I don't feel like doing it. You don't need to assure me that I'm a good mother and couldn't possibly be with her constantly. You don't need to tell me that no one could possibly do that and do it for twenty years. I know these things. I just feel a bit querulous, and my sense of humor is elusive in the face of -- how do I say it -- the perpetuity of it all. I have this theory about our cellular/genetic makeup -- how as mothers we're made to withstand things like babies screaming for hours and pooping their pants for years, or needing to bathe and feed and entertain them, even when it's boring. Our wiring is beautiful in that we are able to do these things, sometimes very well and sometimes not so well, because we also know, on some deep cellular/genetic level that it isn't forever. Colicky babies eventually stop crying. Every baby eventually sleeps through the night. Toddlers get potty-trained, learn how to talk and eventually play by themselves. Ultimately, if all goes well, they leave you for their own lives.
The thing about caring for a severely disabled child is that the whole paradigm shifts -- we aren't so much wired to endure the necessary level of caregiving but have to figure out how to endure it for -- well -- ever. And no, it might not be forever, literally. Some of us fear that our children will die sooner rather than later. We also fear that they'll die later rather than sooner. Not a day goes by that I don't feel grateful for the time I do have with Sophie. I am skilled at holding paradox -- despair and delight -- cursed and blessed -- gravity and humor.
At Hedgebrook I had the opportunity to share a bit of my writing with the other residents, and after reading a chapter about the early days of caring for Sophie -- the immense crisis, the hell of it all -- the writer asked for my feelings, for me in the events. Surely you felt something, she asserted, a writer needs to show those feelings, and I felt the tiniest bit defensive. I've been thinking a lot about that feedback and questioning over the last several weeks. I don't articulate myself during crisis, nor do I identify every feeling as it occurs. I am, rather, in it, doing it. When I write it I want that to be conveyed -- not so much the necessary dissociation that occurs but the attention to the present moment that leaves no room for analysis. Lorrie Moore wrote in her story "People Like That Are the Only People Here:"
How can it be described? How can any of it be described? The trip and the story of the trip are always two different things.
The trip and the story of the trip are always two different things. I'm trying to tie these things together -- the love and the loathing -- the present and the perpetuity -- the trip and the story of the trip -- and convey what it means on a cellular level, when all paradigms have shifted.
I've lost my thread.
I took Sophie to the Norton Simon Museum this afternoon with a friend of mine. I have lived in Los Angeles for eighteen years, yet I'd never been, and it was just fantastic. The museum is very small, but the collection is pretty amazing, and the sculpture garden was gorgeous. My friend and I wandered around and caught up with one another, and Sophie was fairly content, so it turned out to be not just a lovely afternoon but one that assuaged my needling thoughts of inadequacy and caregiver fatigue.