When someone learns for the first time that my 4-year-old daughter has a rare disease called cystinosis, their face will usually morph from happy and pleasant into one of concern and pity. While I appreciate their compassion and willingness to express their condolences, sometimes I find myself annoyed by their reaction. Particularly when they don’t … More 5 Reasons Why Raising a Child with a Medical Condition is Kind of Incredible
We had a very successful trip to Bridget’s neurologist. And not just because we survived it without Bridget setting off any alarms. I have to confess, out of all of Bridget’s doctors, her neurologist is my favorite. We’ve had her since she was a fellow (no, not a Jenner) and saw her through getting her … More Sight Word Exercises to Help Your Non-Verbal Child Communicate (bonus video!)
I feel like people toss around the idea of bravery a lot when they are talking about children with medical challenges. As I am laying here in a hospital crib, at four am, pinned under a sleeping Ezzy, unable to sleep myself….this is what I find myself thinking about: What does it mean to call … More What Does it Mean to Call My Daughter Brave?