Fellow Redbud writer Kelli Trujillo interviewed me for her blog this week, and in one question she asked: When you first stepped into the journey of having a newborn daughter with Down Syndrome, you write about how you were faced with the reality that your daughter may not ever meet some of the expectations or hopes you’d originally had for her. Can you share a bit about that? And for any of us in each of our own situations, do... Read more
Louise Kinross’ take on “after-birth abortion: “I Say Gobbledygook!” The Brain on Love, a fascinating account from the NY Times Opinionater blog about how love physically changes us. My favorite paragraph: When two people become a couple, the brain extends its idea of self to include the other; instead of the slender pronoun “I,” a plural self emerges who can borrow some of the other’s assets and strengths. The brain knows who we are. The immune system knows who we’re... Read more
Peter has a two week spring break. It involves some grading and commenting and preparing for the upcoming term, but it also involves a chance to rest. We took advantage of the graciousness of many family members and a babysitter and got away, just the two of us, for five nights, which, come to think of it, might be the longest time we’ve been away since Penny was born. (We also took a “special adventure” into Princeton, five miles down... Read more
We were in the San Juan airport on our way to four days of vacation (just Peter and me!) when I received an email that read, “A Good and Perfect Gift wins Christopher Award!” At first I didn’t believe it. But I kept reading, and I realized it was real. It was a wonderful way to start a vacation. According to their website: First presented in 1949, the Christopher Awards were established by Christopher founder Father James Keller to salute... Read more
When our daughter Penny was a baby, I took her into Panera Bread at lunchtime. One of the women who worked there approached me. She said, “I love looking at your baby.” Penny has Down syndrome, and I’m never sure what to make of a comment about her appearance. But the woman went on to say, “I have a sister.” Her eyes filled for just a minute, but her smile returned as she looked at Penny. “Back in Morocco. I... Read more
I’d love to meet some of you face to face, so I wanted to let you know about the times I’ll be speaking in the next month: Lawrenceville: Tonight, March 21, I will be leading a discussion about being a parent of a child with special needs in an age of exceptionality at the Special Olympics Headquarters of New Jersey. 6:00-8:00 Princeton: Saturday, March 24, I will be reading from A Good and Perfect Gift at 2:10 at the Princeton... Read more
Two hours after our daughter was born, she was diagnosed with Down syndrome. The pronouncement shocked and saddened me, but I also felt confused. I thought all people with Down syndrome looked the same: Flat nose. Thick neck. Epicanthal fold of skin around the eyes. Short stature. Cherubic expression. But I couldn’t see it. When I looked at our daughter, I saw pudgy cheeks and deep blue eyes and long eyelashes and a full head of black hair. I didn’t... Read more
There’s a verse from Psalm 46 that summarizes the relationship between the practice of religion and the practice of spirituality: “Be still, and know that I am God.” It’s a prayer, an admonition, an encouragement. The two poles of this verse — be still, know God — together they offer a different way than the frenetic pace of my daily life. They offer the promise of rest as a result of trusting in someone greater than myself. But it’s hard... Read more
I’m sure some of you have skimmed the comments over on the Huffington Post from last week’s article about Down syndrome and wrongful birth. But for those of you who haven’t, here are some of the best and worst, and one of my responses. (I should add that my response here is very matter-of-fact. I wrote a post in September of 2010, in the aftermath of a series of posts on the Motherlode blog about prenatal testing, in which I explained... Read more
Over the course of the past five years, I’ve read news reports of a series of “wrongful birth” lawsuits in which parents won millions of dollars for the ongoing care of their children. In each case, the parents claimed they would have had an abortion if they had known ahead of time about their child’s disabilities. There was Ana Mejia of Florida who was awarded $4.5 million after her son Bryan was born with no arms and one leg. And... Read more
Thin Places-Faith, Family and Disability
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