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 ...

  Lizzie’s academic efforts had always met with success. She started reading at two, and everything accelerated from there. By the time she reached elementary school, the teachers had no idea what to do with her except move her along. She skipped second grade. Then seventh. It was the only tool the schools had in those days—and perhaps even today—for a child who learned faster than the system could teach. Then came eighth grade. Or rather, it would have come, had she stayed in Arlington, Virginia. Instead, just as the school year began, twelve‑year‑old Lizzie boarded a plane with me for a months‑long research trip to Russia and Siberia. In Moscow she attended School No. 77, the school for the MosFilm studio kids—children who had grown up around directors, cameras, and expectations. They were bright, worldly, unimpressed by an American girl who read at college level. Lizzie, who had always been the standout, was suddenly just one more capable student in a room full of them. Then...

  Doah’s tracheotomy changed everything. With that tiny tube in place, he could finally breathe more easily and more continuously. Our world narrowed to one primary concern: keeping the airway clear. Plugs were our nemesis, but I learned to manage them, and for a while, that was enough. Then came the day he decannulated himself—far too early, far too suddenly, and entirely by accident. I’ve written about that moment before: the shock, the scramble, the impossible calm that mothers somehow summon when the stakes are highest. Because he was able to breathe on his own, the doctor made the call not to re‑trach him. Instead, he looked at me with a seriousness that settled deep into my bones and said, “Keep your CPR skills sharp. You’re going to need them until he grows and the subglottic stenosis takes up less of his airway.” He was right. I used those skills more often than any mother should ever have to. The hardest part wasn’t the CPR itself. It was the fact that when Donnie was at w...