For all my talk of the world-changing power of sharing our stories, there are some stories that I have trouble sharing, because they’re too hard to write about, or because I worry about the impact of sharing them, or because they’re not my stories, and even if I have permission to share someone else’s story – like, say, Tanner’s – sharing someone else’s story is always an enterprise that pitches me into a state of anxiety. What if I tell it wrong? What if I don’t do it justice? What if it provokes the kind of ugly reaction that I’m comfortable receiving on my own behalf but which sends me into emotional turmoil when it involves others, and especially those whom I love?
I’ve had these worries about sharing my sister’s story, the story of what it’s like to be the mother of a disabled and dying child. I still have those worries. And so there is much that I haven’t told, haven’t shared, even though Chrissie has said that it would be okay, even though so much of that story is so important, so worth being shared. Because I am, sometimes, not so brave. But my mom is. She decided (with the blessing of my sister) to tell the parts of the story that I haven’t been able to, the parts about guilt and shame and anger and mental and emotional breakdowns and how when you have a suffering child the suffering extends beyond what you can imagine and how that’s hard to talk about because shouldn’t you contain your suffering on your child’s behalf? Shouldn’t you be able to hold it together?
This is a story about not holding it together. It’s a hard one.
(Meanwhile, there’s this, which is is happier. You could join me to stand for Tanner and all boys with Duchennes and, for that matter, all the children – and people – who can’t stand and speak for themselves.)