I went from lifting 150 pounds to carrying the weight of Duchenne
I am grateful that I am strong enough to carry the weight of it all
I met my husband, Jason, when we were both student athletes at a small college in our hometown. He played football, and I was on the track team.
Before we had children and settled into adult life, Jason and I enjoyed going to parties. We had so much fun together. One night stands out in my memory — a party held in a garage-type building with a bench press and weights. That evening, the guys at the party were trying to one-up each other to see how much they could lift.
As a shot put and discus thrower on the track team, I was strong and lifted as much as the football team. Knowing this, Jason started saying, “My girlfriend could lift more than you.” The guys started getting annoyed. “Show me, then,” they said.
I usually avoid attention, but I wanted to prove a girl could be just as strong as a guy. Jason put a plate on each side of the bar — 135 pounds. I made easy work of a few reps. Then he added 15 pounds, telling them I was lifting my body weight.
Lifting 150 pounds may not have been quite my body weight. At nearly 6 feet tall and with plenty of muscle, I weighed more than that. Still, seeing the grin on Jason’s face and hearing the other partygoers gasp made the little white lie worth it.
The weight of Duchenne
Today, Jason and I are married with seven children: Lexi, 24; Max, 20; Chance, 18; Rowen, 16; Charlie, 14; Mary, 11; and Callie, 3. Max, Rowen, and Charlie all have Duchenne muscular dystrophy (DMD).
My track career ended 25 years ago, but it feels like I never stopped lifting heavy weights. Instead of physical weights, now I carry the emotional weight that DMD delivers.
Being a parent and a caregiver, and sharing these responsibilities with another person, is challenging. My husband and I don’t respond to parenting sons with DMD in the same way. Jason handles the business at hand. He tackles the first task and, once it’s done, moves to the next.
On the other hand, I need time to process and feel everything before I’m ready to take care of business. Planning for challenges means I often imagine the worst, so I’m prepared if it happens. I fear being in a situation with my sons where I won’t know what to do. This contrasts with Jason’s approach, which has shaped our journey together.
This difference in our responses is something we’ve had to navigate together.
My desire to be hyper-prepared compels me to think through challenging scenarios. Often, this makes me grieve something that hasn’t happened yet. Watching my sons live with a progressive muscle-wasting disease weighs heavy on me.
Max, Rowen, and Charlie keep losing muscle. They lose both fine and gross motor skills. Clinical trials, new therapies, and advanced care have not stopped the disease. It still progresses. It is tough not to dwell on the result. There is no cure.
Max will have heel cord surgery soon. It’s not very invasive, but every time someone goes under anesthesia, there is a risk, and that’s even greater with Duchenne. Thinking about this is like adding another weight.
We also are helping with a public relations campaign, hoping to get the clinical trial drug our sons are on approved. Opening up and sharing my family — my most prized possessions — so publicly takes effort.
Our sons are becoming young men, and we wonder what is next for them. Will they live independently or work? Will they stay with us? This journey is excruciating. Every step feels like an obstacle, and we hear “no” too often, despite our advocacy.
It’s all so heavy. I am thankful that Jason and I can still have fun together, even with DMD. I am grateful that I am strong enough to carry the weight of it all and still be a loving, joyful presence for my family.
Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.