How is Disabled Babby Formed?

“You know, if you believe things badly enough, you can make them true.”

“There’s nothing you could have done differently[.]”

Superbabies Don’t Cry

This article brought back a lot of memories of my own pregnancy, and how I felt right up to the moment when my OB-GYN came in to tell me that it was all going wrong and that they recommended an emergency c-section. It also brought back the months and months after E was born, when I was casting about for explanations, for help, for something solid that I could sink my confusion, my shameful grief, and my rage.

Just to meander a little: the article isn’t really about this, my pain, my and A’s struggles, E’s struggles. But it livened up that old thing I keep coming back to — while the imagined E still lives in my brain, he’s never existed physically here on earth. E is who he was born as, and he has never been anyone else. To keep wishing things would be easier for him, that a magical cure would “fix” him, is understandable from my point of view, sure. But it’s not going to happen, because there is no way to “fix” him. Treat the seizures? Yes. Treat the muscle tightness? Of course. Do the vision exercises, read to him, go to PT and OT and speech, yes, yes, yes. But these are, in the terminology of all our great healthcare folks, to help him achieve the most that he can on his particular developmental arc. These are not going to thicken up his corpus callosum, or roll back the damage done by the infantile spasms and the stroke and brain bleeds.

To want the best of everything for him is not weird. But if it stands in the way of accepting who he actually is, if I twist it into seeing him as not a person but a potential, then it is wrong. He is himself.

One last note: I was disappointed to read that quote from Peter Singer, whom I admired for his views on the suffering of animals. I’ll have to look more into that.

(hat tip to @sasha_feather for the link!)


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