MSI Press Blog

  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. ...

  The Right Doctors at the Right Time Doah’s story is threaded with miracles, but some of the most important ones came wearing white coats—two young physicians who were not yet famous, not yet the giants they would become, but who saw what others missed and dared to think differently. When the doctors in Pittsburgh had given up on Doah—when they told me I was immature for refusing to accept his death, when they tried to take custody so they could perform experimental procedures his own pediatrician warned were dangerous—we packed up and left. We went to Boston, to Dr. Arnold Colodny, listed as one of the two top GI doctors in the USA at the time. Dr. Colodny? He had been Noelle's doctor when we were living in Boston. And we loved him. Her did so much good for Noelle! So, I picked up the phone and called him. If we showed up in Boston, would he take Doah? Yes, he said, not knowing we were planning to steal Doah from the hospital, metaphorically fly to the airport, and literally fly ...