MSI Press Blog

  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...

I didn’t come to know the terrain of emergency through cancer. I came to know it through my children. My daughter was born with spina bifida. Her VP shunt—a fragile lifeline—meant living with the knowledge that acute hydrocephalus could strike anytime, and quickly. At one ER visit, I found her given morphine for neck and head pain. Her shunt was failing. I shook her awake, reprimanded the doctor, taught a neurosurgical resident how to check the shunt, and arranged for her transfer to a research hospital that could actually manage her care. Instinct and persistence—not protocol—saved her that day. Her care, intense as it was, became easy-peasy compared to my son, born three years later. He’s now 45, perhaps the oldest living person with CHARGE Syndrome. His first two years were a breath-by-breath battle—choking, clogging, CPR of varying lengths (the longest: twenty minutes), and daily resuscitation that blurred into routine. I stopped counting most things. But I do remember five comic...