How Duchenne MD helps my family live better
Ensuring my sons with DMD have a childhood filled with love, joy, and laughter
The toddler was crying, hungry for a snack, standing just behind me as I sliced pieces of watermelon. But I was smiling. The big kids were in the pool, and I knew they’d be delighted to have watermelon on the deck.
I cracked open the sliding glass doors and yelled, “Watermelon!” The oohs and aahs I expected came from the swimmers splashing in the pool.
However, I was sad for a moment because two of my children, Lexi, 22, and Chance, 16, weren’t at home to enjoy the sweetness of the summer day. The thought was fleeting, as I figured they’re getting too old to enjoy this anyway.
Then I realized that my three kids in the pool, Max, 17, Rowen, 14, and Charlie, 12, are close to the same age and stage in life — but their social lives have been affected by their Duchenne muscular dystrophy (DMD). Because they’re at home more, I try to make it special.
That got me thinking — probably too deeply for my own good, but that’s how my brain works. Do I go out of my way to make their childhood magical in case childhood is all they get? The answer is yes. And I wondered, is that wrong? No. Everyone should live every day like they’re still a kid.
‘Live Like You Were Dying’
I didn’t always parent this way. Before DMD became a part of our life, the kids went to day care and I went to work, and at the end of the day, we followed a very typical routine. But Duchenne makes us live better. It reminds me of Tim McGraw’s song “Live Like You Were Dying.”
When the boys were diagnosed with DMD in 2010 and we were told they would need help with all the activities of daily living as teenagers and may not live to see their 20th birthdays, I quit thinking about high school graduation, college, dating, and driving.
Instead, I focused on the present. We celebrated birthdays and holidays without the promise of a next one. We started to serve the kids’ favorite foods. We made sure music and laughter were abundant and we took many pictures.
Every year, we plan the “best nine days of summer.” The kids decide what we do in that time. We visit food trucks and watch movies with neighbors in our driveway using the garage door as a screen; we stay outside late, wear glow sticks, and catch lightning bugs.
When we realized Rowen was beginning to lose his ambulation, we drove from our landlocked state of Nebraska to the coast so that the kids could say they had walked in the ocean.
Giving our sons with DMD a magical childhood is a silver lining of the disease and a gift to our entire family. We should all cater to our inner child. It makes us happy. And that’s why I was sad that Lexi and Chance were missing out on watermelon and a pool day.
The experiences I try to create don’t make Duchenne less of a monster, but the love, laughter, and fun we experience is a therapy that makes living with DMD better. Check that — it makes living better!
We have lived like Max, Rowen, and Charlie might only get to experience childhood, but in the meantime, the boys have started doing all those things I stopped focusing on years ago. Max will graduate high school next year and is figuring out what he wants to do for college. Rowen is about to start high school, and Charlie will be a teenager soon. And now they have an incredible foundation of love and adventure to influence the subsequent phases of their lives.
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 or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.