A Letter to My Daughter’s IEP Team

As we prepared for Grace's kindergarten IEP meeting last year, we were all coping with a very new, terrifying global pandemic. Several of the staff hadn't even been able to meet with Grace for evaluations because schools had abruptly closed just weeks before. More than ever, I felt the need to humanize her for the... Continue Reading →

The humble joy of an unorthodox Christmas

**Special note: this post includes lessons I learned while my infant daughter was hospitalized at Christmastime. If you have an ill loved one or are sensitive to related content, you may want to skip this one! ** Christmas this year won’t look like Christmases past. Hopefully, it won’t look like Christmases future, either. But there... Continue Reading →

You do You

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 →

How I Became a Hospital Mom

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 →

So Extra

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 →

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