MSI Press Blog

  I recently told a pulmonologist that Doah—now nearly forty‑seven—entered this world with a zero percent chance of survival stamped on his chart. That was the official medical verdict. The unofficial one was harsher: the doctors called me immature for refusing to accept that he would die. They insisted that hope was denial, that advocacy was naïveté, and that my unwillingness to surrender him to their predictions made me the problem. Their solution was to remove him from me entirely. They tried to take custody so they could perform experimental procedures his own pediatrician warned were dangerous and unlikely to help in any meaningful way. The message was unmistakable: If you won’t give up on him, then we will take him from you so we can. I did what any mother who knows her child better than a prognosis would do. I removed him from the hospital, gathered what little we had, and took him out of state. The doctors we found there were not optimistic either—but they were willing ...

  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...