MSI Press Blog

When the kids were little, we drove from Pittsburgh to Daytona Beach, Florida, to visit Donnie’s grandmother after Grandpa died. We spent some lovely days on the beach. Lizzie and Shane ran straight into the surf like they had been born with gills. Noelle, determined as always, figured out how to wade with her braces and crutches. (When we got home, we had to explain to the bracemaker how the ocean had “mysteriously” demolished them. He was not amused. Noelle was.) Doah, only a couple of years old, couldn’t run with the others. He still had his tracheotomy, so he and I sat in the sand building castles while Donnie supervised the older kids. It was one of the rare moments in those years when I felt relaxed — truly relaxed — because most of our time was spent in hospitals, clinics, or managing medical equipment at home. Sitting there with him, letting the sun warm us, I allowed myself to believe that everything was under control. And then the ocean reminded me that nothing is ever under ...

  Some lessons children learn on their own. Others they learn from siblings. And then there are the lessons they learn that you wish—deeply, fervently—they had not. When Shane was ten, he and Donny decided they were going to hike the Appalachian Trail. Not talk about it. Not dream about it. Actually do it . And they did—more than a thousand miles of it, step by determined step. Doah, eight years old but developmentally closer to four, was enthralled by the entire enterprise. He watched the preparatory hikes every morning as Donny and Shane marched up and down the little knolls behind our home in Arlington, Virginia. He helped select and mail the care packages of freeze‑dried food to the post offices along their route. He listened to Shane’s journal entries with rapt attention. But what fascinated him most was not the gear, the miles, or the adventure. It was the bathroom logistics. When he learned that hikers simply “pee in the trees,” something lit up inside him. This, apparently,...

Doah is, by nature, a remarkably robust person. He almost never complains. People who know him well often remark on how much discomfort he tolerates without a word. But there is one situation where his patience vanishes instantly: when he cannot breathe well. Doah has sensory overload, something first identified by his pediatrician, T. Berry Brazelton, during our Boston Children’s Hospital stay  in 1980. Most of the time it sits quietly in the background of his life. But when he is sick— especially with something like bronchitis— and breathing becomes difficult, the overload can come quickly. And when it does, patience disappears. The echoes of his earlier airway struggles— the tracheotomy and the subglottic stenosis— are never very far away. Add depleted oxygen levels to the mix ( he is on oxygen 24/ 7 now), and even a routine respiratory illness can push his system past its tolerance point. When that happens, Doah does not wait politely. He demands that I fix the problem. ...