Sometimes I almost forget Callie has SMA. Other times, I can think of nothing else. When she takes my earrings, puts them up to her own ears and grins, I wonder if she’ll reach 13–the age I’ve arbitrarily set as being old enough to get her ears pierced.
I’ve already accepted that she won’t walk. And I don’t mind that much. Some days, I feel certain that a treatment will be developed that can at least prolong her life. Other days, I think that’s a fantasy.
I look at Callie and can’t imagine life without her–the way she dances by nodding her head or by wiggling like a worm if she’s lying down; the way she shakes her head and says “No!” when she sees Peter coming to take her toys; her rendition of “Wheels on the Bus.”
Early in her diagnosis, I wondered to a friend why we couldn’t be a regular family–the people whose idea of a catastrophe is spilling coffee on their best suit. To which my friend replied, “But are they really the lucky ones?”
Not long after that, I was in the grocery store and saw a little girl about Callie’s age. She had some of Callie’s features and even had 3 older brothers like Callie does. I stood there, mesmerized. It was like visualizing a parallel universe in which everything that mattered in my life was fine. I watched her eat a cookie, turning this way and that.
I thought of Callie, who rides in a baby seat at the store because she can’t sit up in the cart for more than a few minutes. I noticed the girl’s sandals; I knew she walked. I thought of Callie, unable to move her legs. I watched the girl and her family walk out of the store. I thought of Callie. And thought it was possible that I was the lucky one.