Ashley, my youngest daughter, has a genetic condition so rare it is still considered “incompatible with life.” Yet today, Ashley is twenty-five, and she hasn’t just survived. She rides horses and she competes in jazz dance recitals with her many friends with intellectual disabilities. When she gets a new dress, she twirls while modeling it for strangers, as if she is on Next Top Model. At age four, she made the front page of our local newspaper because she was so darned cute gritting her teeth as she pulled her walker toward the finish line in her first Special Olympics race. Surely, she is a great example of persevering.
The stabbing pain in my abdomen jolted me awake at 3 a.m. Four broken bones, giving birth to two babies, gallstones – all minor aches compared to this. At the hospital they found no reason for my pain. The blood tests were normal. I had no fever. They sent me home.
I am sitting in the all-too-familiar waiting room of my local emergency department on a Saturday night in July. I am here with my daughter, Ashley, who is nineteen but could pass for a typical twelve-year-old—until she starts to talk. Ashley has a rare genetic disorder. On the good days I laugh and say that she will make a great ventriloquist because she talks without ever moving her lips. This is not a good day. She has a fever, a wet cough, and she snuggles up against me.