Columns

The title of this column comes from a meme I saw this week. Its message found me at a time when I needed to hear it. My three sons with Duchenne muscular dystrophy have appointments at Children’s Hospital Colorado the first week of December. (Yes, we must take three…

We form our identity from the world around us. That includes factors like our relationships with parents, siblings, and friends, what we look like, our sexual orientation, and our religious beliefs, among others. For me, one unspoken taboo is my disability. I use a wheelchair because I can barely walk,…

Halloween is over, and I’m happy to say we all got through it. While it was one of my favorite holidays when I was a kid, celebrating it with children with Duchenne muscular dystrophy has made trick-or-treating challenging in ways I never dreamed of. This week, I’ll be writing…

Welcome back to “Hidden Truths,” a column that seeks to offer an honest look at living with a neuromuscular disease. I not only like to present my own experiences, but also to challenge others to examine themselves and think outside the box. I believe that by questioning and searching for…

I have shared many times in this column that I have three sons with Duchenne muscular dystrophy. People sometimes think I’m an expert on the subject. But the truth is that my boys are unique, and Duchenne has affected each of them differently. Their disease progression and weakening muscles…

Sir Isaac Newton’s third law of motion states that for every action on an object there is an equal and opposite reaction. In 1686, his law was groundbreaking, but in 2021, we take its simplicity for granted. There is a consequence for every action taken. When a bullet discharges…

On a Facebook page that documents our family’s journey with Duchenne muscular dystrophy, I recently posted about how invitations to birthday parties and friends’ houses are not typical for my three boys with Duchenne, especially with them using chairs full time. However, the post celebrated the fact that my…

Over the past few weeks, several people have asked me how I can be in a good mood nearly all the time when so many issues surround me. So, this week, I want to elaborate on my thought processes, and try to explain positive thinking, why I am the way…

I think all moms need strong shoulders and extra arms. We carry purses, diaper bags, backpacks, and discarded jackets. Duchenne moms carry more, including sometimes our kids and their equipment, although I’ll admit that power wheelchairs are great for carrying bags without tipping over, unlike manual chairs and strollers.

As my Duchenne muscular dystrophy has progressed, it’s become untenable for me to live on my own without outside help. We’ve begun seeking professional caregiving assistance while my parents are away on vacation or work trips. It’s nothing major — mainly help with cooking, cleaning, getting into and out…