Columns

Last June, my 2-year-old son, Alfie, had his first surgery to place a feeding tube. It has now been a year since the percutaneous endoscopic gastrostomy (PEG) tube replaced the nasogastric (NG) tube that previously passed down his nostril and throat. Alfie first had an NG tube for…

I stood behind my father in uncomfortable silence. The summer had come to a close, and another school year was preparing for takeoff. I didn’t want to make eye contact, because it was easier for me to let my dad handle the situation, and all would be well. However, I…

How would you respond if I asked, “Who are you?” While the question may seem simple, it is deceptively complex. A college professor of mine once asked the class this question. As students took turns answering to the best of their ability, the professor offered rebuttals replete with “what ifs.”…

Transitions are a part of life. We go through puberty as teenagers and our bodies change. We move out of our parents’ place to go to college or start a new job. We get older, some of us have kids, and our perspectives change. When…

Last week, I took my 2-year-old son, Alfie, for a walk-through at a local preschool. We are checking out all of the preschools in our area so we can find the best fit for Alfie when he turns 3 and is able to go.  I was…

Up, up, down, down, left, right, left, right, B, A, Start. Cheat codes were a vital part of unlocking certain hidden aspects of old-school video games. Entering these sequences in a specific order on the game controller would unlock otherwise unattainable features. I would use the controller button…

On April 1, I started full time at Bionews, the publisher of Muscular Dystrophy News Today, writing feature stories about the rare disease community. Since I first started writing articles in December 2019, my work has ranged from interviews with advocates, CEOs, and…

Growing up, I was never good at performing tricks. I couldn’t whistle, I’ve never been able to cartwheel, and I’ve always been terrible at juggling. Now, every day is the hardest juggling act of all.  One of the most important aspects of caring for…

I sometimes like to imagine a life in which I don’t have Duchenne muscular dystrophy, a progressive muscle-weakening disease. No boundaries would hold me in. I could travel anywhere I want and write an unlimited number of stories. This is an…

The glint of armor demands attention.  The jousting lance was slung to the side of a great black horse. The rider, shield in hand, mounted the stallion and paraded about a wooden bleacher. The horse coolly pulled one leg up, then the other, muscles rolling with each movement.