2013

Why Down Syndrome Matters to YouWhat effect would a "cure" for Down syndrome have on our culture at large? What would it communicate about what and who we value? About what and who we are and want to be?

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 ...

What I've Learned About God from Singing to My ChildrenWhat have your children taught you about God?

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, ...

"The Discipline of Place" and Things to Read this WeekThe discipline of place, the books I'm loving, and a smattering of articles on faith, family, and disability.

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 ...

Reversing Down syndrome and the Golden Rule"What mega-vitamins are you taking to overcome your deficiencies?" Lawyer, bioethicist, and blogger Mark Leach considers what the golden rule has to do with treating Down syndrome.

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 ...

Down Syndrome Research, Hope for My DaughterMother and blogger Leticia Velasquez considers whether she would use gene therapy to mitigate the effects of Down syndrome for her daughter Christina: "How does her future look right now? Difficult, unless there is a medical breakthrough."

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 ...

My Exceptional ChildIt is my privilege as a mother to be the one who knows why and how my kids are exceptional, even if no one else ever sees it.

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. ...

I Don't Love Tina Fey and More Great Stuff to ReadBossypants, Power, Ruthie Leming, and a host of articles to read, in all your free time...

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 ...

The Damaging Language of "Cure" and Down SyndromeOnce again we’re hearing news of a breakthrough in research on drug therapies to enhance the cognitive processing of people with Down syndrome. And once again, the discussions seem to fixate on the controversial notion of a “cure.” Why do we keep having the same conversation? A guest post by Columbia Univsersity Professor and author of Raising Henry, Rachel Adams.

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 ...

Should We Try to Cure Down Syndrome?In honor of Down Syndrome Awareness Month, a series of posts to address the problems and potentials of research to mitigate the effects of Down syndrome.

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 ...

Five Reasons I'm Glad My Husband Went Away for Twelve DaysI didn't yell at my children during the twelve days my husband was away. It was a miracle. Seriously.

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 ...

What I'm Reading and Tweeting (Sep 27, 2013)Novels, memoirs, articles about faith, disability, and culture, and what I listen to on my drive home from dropping the kids off at school...

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 ...

Small Acts of Gratuitous Love: Friendship House in Durham"Our life together has already been filled with quite a bit of joyful gatherings: cookouts, magnet-making projects, cleaning alongside one another, playing card games, praying the Psalms, ping pong at Fullsteam, and most recently a baked ziti feast... It is becoming terribly clear that my flourishing is bound up in the flourishing of each of my fellow community members."

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 ...

"Laughter is Carbonated Holiness"

Anne Lamott said it, not I, but I know the truth of which she speaks.

The wheels came off the vehicle that is our family yesterday. Marilee was up late and awake early. William was up for an hour in the middle of the night in eager anticipation of the tooth fairy. I was restless ...

His Face is Aglow with Hope: How the Lion, the Witch, and the Wardrobe Shaped Our Difficult Day

It is Sunday. Peter is away for the night. It has been a hard day. Marilee has a fever and an ear infection. William misses his dad and has erupted into tears more than once. Penny has been unable to control her impulses–she can't get a door to close so she slams it again and ...

What I'm Reading and TweetingThe books on my bedside table and recommended articles from the past week...

I finished reading Wonder, by RJ Palacio, which I loved. I won't take the time to review it in full right now, but it is the story of a young boy named Auggie with a severe facial deformity who enters 5th grade at a local private school in Manhattan. You can imagine what it's ...

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