4 Things I Never Worried About Before Duchenne
Living with DMD brought a host of concerns for this columnist and mother
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Are there curbs or cutouts? How many stairs are there? Is there an elevator? Is there space for multiple power chairs? How big is the bathroom? How far is the parking lot from the entrance?
What do all of these concerns have in common? Unfortunately, they’re things I never paid attention to before becoming a mom to three sons with Duchenne muscular dystrophy (DMD).
When my sons were diagnosed in 2011, our world was flipped upside down. It was like we woke up as one version of our family and went to bed as another. We’d finally learned why our boys had big calf muscles and couldn’t walk far without tiring. Everything changed once we were living with Duchenne. Things I’d never thought about before became part of every daily decision I made as a caregiver.
Following are a few issues I never had to consider before DMD.
1. What’s on the floor? Is there a rug? Could it slip? Is there a frayed section or upturned corner that could trip the boys? What about backpacks, toys, or shoes?
I’m conscious of this at home and out in public. Even when I’m aware of our surroundings, my sons have tripped and fallen. Most recently, my 13-year-old with DMD, Rowen, caught his baby toe during a transition. I was right there holding him, and he still fell and broke his toe.
2. How heavy are everyday objects like books or laptops?
My family attends Mass together every Sunday. My 17-year-old son with DMD, Max, is an excellent singer, but his hymnals are getting too heavy. His little sister Mary or I will grab it for him, and he rests it on his lap for Mass instead of passing it back and forth, expending extra energy and strength.
3. Will a power chair fit in this space? How many power chairs will fit?
I do this no matter where we go — hospital waiting rooms, exam rooms, elevators, restaurants. Even if our destination meets accessibility protocol, three power chairs take up much more space than one.
Making room for three chairs is tough at home, too. One unexpected difficulty of Rowen transitioning to a power chair full time was that I had to remove a chair from our dining room table. As a result, the space sits empty unless Rowen is eating or using the table. The missing chair was hard to accept aesthetically, but it was even harder on my heart as a mother. How will I feel when my other two sons with DMD start using their chairs full time?
4. The kindness of other children.
OK, I did notice kind kids before, but it didn’t mean as much as it did after DMD came into our lives. These kids are helpers and good friends who see past my boys’ chairs.
This week, my husband packed lunches because I was out with a stomach bug, but Dad forgot to pack forks. When my youngest son, 11-year-old Charlie, realized this, the boy sitting next to him at lunch went to get Charlie a fork so he didn’t have to navigate the middle school cafeteria mess. That’s a good kid.
I’ve been fortunate over the years to witness several small acts of kindness that improve my boys’ days, and I appreciate that kindness as much as you can imagine. People say that having children is like having a piece of your heart walking around outside your body, and it’s true — even more so when your children are vulnerable. When I see kids with kind hearts, I love them immediately.
What would you add to this list? Please share in the comments below.
Note: Muscular Dystrophy News 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 or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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