I also have a child with Down syndrome, a daughter, age 3 1/2. And we too were shocked to discover, upon birth, that she had an extra chromosome. She was born around Christmas time, and one of the refrains that ran through my head was from “O Little Town of Bethlehem:” “The hopes and fears of all the years are met in thee tonight.” Initially, there was only fear. But eventually, we learned to have great hopes for her. And we found that it was in Jesus that we were able to find a space to hope in spite of the fears.

Penny, like Elijah, is learning to read. She is also learning that she has a past. She asks me to tell her stories about herself. She is particularly fascinated by her birth story and medical history. I tell it like this: “When you were born, the doctors were worried. They thought you were sick because you have Down syndrome. But they checked your heart, and it had some little holes, so they fixed them. And pretty soon we all realized we didn’t need to be worried anymore.”