When 5:00 rolls around, I want a glass of wine. Especially if it’s winter and I’m home alone with our children and it’s dark outside. I started to notice this desire a few months ago. I had this niggling warning in the back of my brain about it, but I pushed it away every night. It’s only one glass, I told myself. At least most of the time . . . Then, in early December, I was staying with an... Read more
I read a lot about prenatal testing, especially now that a company called Sequenom has developed a test that purportedly can definitively (well, with 99% accuracy) detect Down syndrome via a maternal blood sample as early as 10 weeks. Usually in the “mainstream” media, I read articles that herald advances in prenatal testing as a way to “prevent” children with disabilities from being born. ABC News reported the test as a way to avoid amniocentesis, and therefore as a way to... Read more
Reed and Aaron showed up at 11:00 last Sunday, just as we were getting home from church. They left around 5:00. Six hours of zooming in on our family life–eating Sunday brunch, reading on the couch, heading outside for a walk. We had no idea if a photo of our family would be included in the magazine, and we certainly didn’t expect to take up most of two pages (if you are not a subscriber to TIME, go to a... Read more
So the doctor told us to expect a 5-7 day recovery. But Penny woke up on Saturday morning (after 17 hours of sleep, including the time under anesthesia) with her eyes wide open. “Does anything hurt?” She shook her head. Two hours later, I listened to her narrate what happened. “I went to Target and buyed a Dora video. Now I sitting in my chair watching a movie. It was my present from mom. I got a little poke. I need... Read more
I woke up this morning because Penny came barreling into our room. “I want to cuddle with you, Mom,” she said, glasses perched on her nose, wearing her footed pajamas, a barrette already in her hair to pull back the bangs she’s growing out. I tried to convince her to let me go back to sleep, but I finally agreed that today was a good day to cuddle. “How are you feeling, Pen?” I asked. “A little nervous,” she said,... Read more
If you live in New York City, Princeton, Raleigh, Durham, or Basking Ridge, NJ, I’m coming soon to a venue near you. Visit my Events Page for more details. (Though note that right now there isn’t up to date info on NYC, and Raleigh’s has changed from March 28-30. The woes of maintaining a website…) If you listen to the radio, listen live to a six-minute conversation between Susie Larson and me about A Good and Perfect Gift. It will... Read more
We don’t celebrate Valentine’s Day in our house. We feel rather curmudgeonly about the amount of money spent on the holiday (billions and billions of dollars) and the amount of paper wasted on all those little cards sent to school for Penny’s and William’s classes. And we try to sprinkle some romance throughout the year. I much prefer flowers from my husband at random, and, yes, that does happen (though very infrequently, I must admit). But tonight held this moment... Read more
There are weeks when I can’t help but write blogposts, and then there are weeks when my brain is too frazzled to put two sentences together. This week is one of the latter. William has had a fever. We have a new babysitter. Peter stayed home sick yesterday too. We’re gearing up for Penny’s surgery. So I haven’t been able to come up with anything interesting to say about Valentine’s Day or Whitney Houston (not that you would expect me... Read more
Some of you remember that Penny took ballet when she was 4. You might have read about her recital (Ballet Recitals, Carelessness, and Grace Part One and Part Two). It’s a long story, but she’s just really started dancing again, and I wrote about this renewed joy for the “My Great Story” feature of the National Down Syndrome Society. I’m writing about her dance class, yes, but also about how I continue to learn to let go of fear and... Read more
Number one on my list this week, because it combines individuals with disabilities, families, adoption, hope, and some amazing dogs: “Wonder Dog” from the New York Times. Number two, because it is a beautiful meditation on aging and being young, and because my beloved 91-year old grandfather broke his pelvis last week and is suffering through the beginning of recovery: “The Man Love Raised” by Mama Monk So I wanted to quote pretty much this whole essay, but instead I... Read more
Thin Places-Faith, Family and Disability
Ad-Free & Subscriber Log-In