9/14/16
Inspired by the New York Times articles on disability, my mother wrote a piece (non-published) about my time parenting a disabled child which led me to write this post:
Am I parenting a disabled child? Not in my mind, or maybe not yet. I'm parenting a dying child, one for whom there is no hope. There are no treatments to hunt down and no therapies to stave off the inevitable and yet at the moment, my 1 year old should be toddler is in fact still a baby. Friends and strangers on the street see her see only her unruly mop of hair and shining eyes, they don't see the lipids building up upon her brain slowly leading to the tipping point of inevitable decline. Her disability is hidden from sight, for the moment. I have yet to experience the thing many parents with disabled children endure: casual bystander asking inappropriate questions, or worse, the person I know avoiding the topic completely. I haven't had to fight the early intervention system for every last ounce of therapy or do battle with the school system to ensure my child had the appropriate environment in which to grow. There is no growing for Talia, only decline. I still fight for her, but know that each intervention she receives is only about maintaining skill rather than learning new ones. As Emily Rapp illuminated in her op-ed in NY Times, there is a certain freedom to this diagnosis. I can parent Talia free from many of the anxieties over decision making that haunt parents. It doesn't matter if she eats a cookie every day, watches tv with me constantly or sleeps on her stomach. If what we do makes her happy, it makes us happy- and that's all we've got right now.
I feel a certain freedom that parents of profoundly disabled children don't have. I don't spend nights worrying about Talia's life 5, 10 or 15 years from now. While she was getting diagnosed I was having premature panic attacks about her living as an adult in assisted living homes and getting prematurely depressed about the point when the child becomes a disabled adult and funding for services disappears. The system of support for children with disabilities is a tangled thicket of some good intentions and way too few resources. It's a world I will inhabit for a short while.
Side note:Talia has a ridiculous habit of giggling through every terrible doctors appointment or serious video about preparing for the worst. Like she wants to remind me that she's still here, still aware and still capable of bringing joy to herself and to me.