We spend our summers in Madison, Connecticut. I forget the peacefulness of this place every year until we drive up and see the water and smell the salty air and feel the breeze. It is what the Celtic Christians called a thin place—a place where heaven and earth touch, where God seems more readily present, more easily accessed. It is easier here to pray, especially prayers of praise and of gratitude. It is easier to carve out time to read... Read more

A year ago, I read a book by Michael Berube called Life as we Know It. Berube is a professor of English, and his son Jamie has Down syndrome. His book contains philosophical and practical reflections about Down syndrome in general and about Jamie in particular. In one chapter, Berube discusses the sociology of Down syndrome. He explains how our “scientific” understanding of Down syndrome has changed over the past century. For example, parents who had a child with Ds... Read more

All this talk and information about Down syndrome has left me thinking about language. People struggle (myself included) to know how to talk about Penny. I remember when she was first born and I would say that we had expected a “normal” child, which implied that Penny was abnormal. Then I learned the word “typical” and it helped me not to feel that I was maligning my child by calling her abnormal by implication. I also remember calling her a... Read more

I have been reflecting more and more about my sense that I know “why” Penny has Down syndrome. I’ve concluded that I was wrong in much of what I previously thought. In general, we’ve heard two “reasons” that Penny has this extra chromosome. One is because we, as her parents, need a child who is not a high-achieving, intellectual, varsity athlete, etc. In other words, we need her as a rebuke to our type-A personalities. The other is that we,... Read more