MSI Press Blog

  Emergencies don’t always come with flashing lights. Sometimes, they come with silence. My son—45, living with CHARGE Syndrome—was eating in a booth at Fosters Freeze when he began choking. He stopped talking and sat perfectly still, rigid. A super example of hyperactivity, he does not know to sit still; this was not normal. Then, his body turned rubbery. His skin changed color. His eyes locked and rolled back. He wasn’t breathing. We were the only customers. I asked twice— please call 911 . No one moved. And so, I stopped speaking. I stopped asking. I did what decades of caring for him trained me to do. I tried to save him. He was wedged into the booth. I couldn’t lift him out—I couldn’t fully lift him at all. I managed to pull him partway out, enough to get his head hanging down over the bench. I hit his back, again and again, and waited for breath to return. It took minutes. I’m not sure how many—time doesn’t tick normally when your child is blue. Eventually, his lungs be...

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...

  There’s more hope these days when it comes to cancer—if it’s caught early, you’ve got a fighting chance. But people still die. Every year, every month, every day. Carl did. And recently, I stumbled across an article I wish had found its way to me before he died. It was written by Barbara Karnes, and it laid out something I hadn’t heard said quite so plainly before: “We die the way we live.” That line stopped me cold. Because she’s right—at least about Carl. He was an introvert to the core. Even after his diagnosis, there were no late-night heart-to-hearts, no raw confessions, no leaning into each other with the kind of aching honesty I craved. He simply couldn’t go there. And that silence—it wears on a caregiver. Carl was also an ostrich. I don’t say that with judgment. It’s just... true. All through our life together, I handled the hard stuff. He stayed sunny, cheerful, often by refusing to acknowledge the storm clouds altogether. Denial was his way of coping. It was how he kep...