Life Stories: In Response to Deborah Minter

Abstract

I have not had to make any decisions about my ten-year-old Jamie that involve fifty-fifty chances that he will lose his bowel function. I have not had to consult with him about his death, contact the Make-a-Wish Foundation, or submit him to chemotherapy. Jamie has Down's Syndrome and will have Down's Syndrome all his life, but on most days, for most purposes, all that means to his mother Janet and to me is that he's sometimes hard to handle, sometimes impervious to danger, always impervious to the benefits of fruits and vegetables, always willful. He does reasonably well with his fourth-grade homework in spelling and math, but has no idea how to write a paragraph describing the differences between his school and an Amish school. And no matter what time we put him to bed at night, no matter how strenuously we've tried to wear him out all day, he will be awake, chirping, and in our bed before seven the next morning.