My son, Samuel, died five hours after his birth; he had trisomy 18. The five hours my wife and I spent with him were some of the most significant of our life together. They were a gift to us at the end of difficult pregnancy and a peaceful entry into the long paths of grief.

This post is one in a series addressing the question of whether we should try to "cure" Down syndrome. Margaret (Gary) Bender reflects upon Flowers for Algernon and her daughter Alex, who has Down syndrome. 

I have a vivid memory as a fourteen-year old sitting on my parent's ...

As a part of a series of posts in honor of Down Syndrome Awareness Month, and in response to recent media reports about a potential "cure" for Down syndrome, blogger and minister David Zahl contributes an essay today about bioethics, science fiction, and what it might mean for ...

I didn't think much, if at all, about Down syndrome before our daughter Penny was born. But in the seven years since her arrival, I have come to believe that disability, including Down syndrome, offers a window into the human condition that bears close attention. As I have written ...

My kids have taught me a lot about God. It mostly happens when the lights are out.

The bedtime routine is almost over. Penny has taken her sweet time putting on her pajamas. I say, "Penny, I am starting to feel angry but I don't want to yell at you." She turns slowly in my direction, ...

I finished The Little Way of Ruthie Leming. I thought it could have been even better than it was, but I still ultimately recommend it. This was my favorite line: "St. Benedict considered the kinds of monks who moved from place to place all the time to be the worst of all. They ...

Nine years ago, my daughter Juliet was born. She had ruby-red lips, dark eyes, and Down syndrome. While I haven't considered changing the first two characteristics, I have paid attention to possible treatments for the last one.

Earlier this year, researchers announced that that ...

It was billed as an amazing breakthrough, a harbinger of hope, when researchers at University of Massachusetts managed to 'turn off'' the third copy of the 21st chromosome in a petri dish last summer. But the jubilation was not universal.

Many parents of children with Down syndrome ...

There's a sign on the way home from our daughter Penny's school that reads: "Slow Down. Exceptional Children Live Here." When I first noticed it, it bugged me. I saw it as a disrespectful play on signs warning cars that a child with blindness or deafness lives in a neighborhood. ...

First of all, does anyone have a catchy title for what is becoming a regular Friday feature of what I'm reading, listening to, and thinking about?

Secondly, the books: I've finally gotten into The Little Way of Ruthie Leming, by Rod Dreher. It's a lovely book, though I found ...

When Amy Julia Becker asked me to write a post responding to the question "Should Down syndrome Be Cured?" I had a strong feeling of déjà vu all over again.

Haven't we debated that question already?

A few seconds on Google revealed that yes, we have.

In early 2010, Lisa Belkin ...

For some, this question holds an obvious answer. Down syndrome is an abnormal genetic condition that leads to suffering. It needs to be cured, plain and simple. For others, the question itself (not to mention any attempt at an answer) is offensive. It implies that people with ...

Peter returned late last Thursday night after twelve days in Korea and China for work. And while I hope he never has to go away for that long again (um, honey, are you reading this?), I'm also kind of grateful that he did. Here's why:

1. I missed him terribly, starting ...

Where I live, we don't get consistent cell phone service. Every day, I drive my kids to school for twelve minutes, and we talk and listen to music and observe the changing leaves and babbling brook. For the twelve minutes back, I used to try to listen to NPR, though the signal ...

On Sept. 22, Friendship House, a home that offers Duke Divinity School students and people with intellectual or developmental disabilities (I/DD)  the opportunity to live together in community, officially opened. In each of four apartments, three students live with one resident ...