A Practical Guide to Down syndrome
“After this, story, then calendar…then goodbye song,” she says before looking up with an eager smile, “THEN LUNCH!” Each day during virtual preschool, this is how Grace repeatedly rushes through every step in her visual schedule in anticipation of her favorite part. We all want to get to the good stuff. Or the better stuff.... Continue Reading →
I have thought about writing this post many times, but I didn’t want to add to so much of what is entering my brain as noise these days. Namely: The virus which must not be named. Forced homeschooling.Toilet paper.The shoe-in for the words of the year (nevermind that it’s only March): social distancing. What the... Continue Reading →
I have slept 72 nights in children’s hospitals, all of them as an adult. The longest stint, 58 nights, was our first. It all started days before Grace’s three-month birthday. I handed her barely eight-pound body over to a cardiac anesthesiologist for the surgery we’d been awaiting with dread since we received her congenital heart... Continue Reading →
I’m so EXTRA! These were the perfect words adorably emblazoned on the shirt a friend made* for my daughter, Grace. Grace is extra adorable (my unbiased opinion), empathetic, and persistent. She also happens to have an extra chromosome. As parents of kids with Down syndrome, we are eager to share that this makes our children... Continue Reading →
