10/26/2011 05:53 pm ET Updated Dec 26, 2011

Explaining Down Syndrome, To My Daughter, And Myself

A few months back, I mentioned to our daughter Penny that she would be meeting another little boy who had Down syndrome, just like her. She didn't say anything in response, but later on that day, when Penny was at school and William was getting ready for a nap, he said, "Mom, what down syn mean?"

"Down syndrome, sweetie. Not down syn."

"I know drum," he replied. "What down syn mean?"

I nodded slowly, realizing that he was envisioning making music, and grateful that he didn't have a concept of "sin" on hand. So I said, "Well, it's all one word, and it doesn't have anything to do with an instrument." I searched a mental map for words to explain a chromosomal anomaly to a two-year old. I began, "It means Penny has an extra part in her body," but I realized that sounded as though she might grow a third arm. Then I said, "It's something that makes Penny special."