Columns

Welcome back to “Hidden Truths.” Over the past two weeks, I’ve had several meaningful discussions about what it means to have a neuromuscular disorder. Accordingly, this week I wanted to get a bit more personal and answer a question brought up by a friend: “How did it feel growing…

Three of my boys were diagnosed with Duchenne muscular dystrophy when they were small. We’ve spent many years preparing to be caregivers for them as adults with Duchenne. We remodeled our home, added ramps to the front and back of our house, and upgraded to a wheelchair-accessible van. The…

I love the everyday, ordinary moments of motherhood. Maybe I’m crazy, but the laundry (no matter how never-ending), groceries, menu planning, and chauffeuring of kids all bring me so much joy! Duchenne muscular dystrophy can be a thief of that joy. Duchenne is hard to plan for, and because…

In August, my 2-year-old son, Alfie, became a big brother. While bringing a new baby into the world is an important life event for any family, when you are already raising a child with LAMA2-related muscular dystrophy, there can be even more to contend with. For about six…

Welcome back to “Hidden Truths,” a column where I seek to describe and express my feelings about my diagnosis of limb-girdle muscular dystrophy. This week, I originally wanted to continue the discussion about questioning everything about my diagnosis and care management, which I discussed last week. However, because…

Being in a power wheelchair, getting fatigued more easily than the average person, and walking with a waddle-like gait are a few bullet points on a long list of Duchenne muscular dystrophy symptoms that make me self-conscious. But more than that, these realities of living with a…

It’s homecoming week here in Nebraska. Our local high school has its homecoming football game today, and the dance is tomorrow. I love homecoming. It’s a time of fun and excitement. The crowd at the football game always seems full of extra energy. The kids get dressed up and…

As I’ve described in my previous columns, knowledge is power. I feel very fortunate to have received my diagnosis of limb-girdle muscular dystrophy when I did. I was beginning physical therapy school and had just come to appreciate the power of questioning and research. That said, the topic of…

I saw a meme today that said, “I need a day between every day to recover from the day before and prepare for the upcoming day.” I could not have identified with anything more today. If you haven’t guessed it yet, I am exhausted. I was a single caregiver and…

Our family has encountered many challenges in our journey with Duchenne muscular dystrophy, and there will be more to come. If I were to ask the question, “What is the hardest part of Duchenne?” in a room full of parents whose children have the condition, there likely would be as…