My Parents Have Helped Me Overcome Duchenne MD
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A 7-mile hike with a 1,000-foot elevation gain was on the schedule for our second day of camping at Point Mugu State Park near Malibu, California.
I was with our small Boy Scout Troop 911, which operated out of my elementary school in Huntington Beach. It was a bonding experience for the dads and boys that went along, this upcoming hike even more so.
For the average person, the hike would’ve been a moderate challenge. But for someone with Duchenne muscular dystrophy who used a small, blue scooter with rubber wheels, it seemed impossible.
My dad refused to let me miss out on the excursion. He threw me, then 13, onto his shoulders, and away we went.
It was by no means easy, but we got to the top of Mugu Peak Trail and were greeted with vast panoramic views of the Pacific Ocean.
This wasn’t the first or last time my dad carried me to victory. In Argentina, we climbed down the slippery rocks of Iguazú Falls. In Vietnam, we traversed the limestone caves of Hạ Long Bay. In China, we walked atop the Great Wall of China.
My dad was always there to help me get to where I needed to go. He calls himself my arms and legs. When I got older, he was also there to give me life advice. My mom was there, too — helping me stretch, cooking dinner, and getting me ready for school, all while running a nonprofit to help find a cure for my disease.
My columns on topics like avoiding comparison, seeking discomfort, and being creative come from me, but they rest on the shoulders of my parents, who have taught me much of what I know and shaped me into the person I’ve become.
None of us get to choose our parents, and I feel blessed beyond all measure to have gotten mine. They’ve taught me how to live outside the bounds of Duchenne, poured endless love on me, and supported me when my body, mind, and spirit could not.
I don’t give them enough credit. I’ll share part of what they mean to me here, but it barely scratches the surface. They’ve created an example I hope many parents — whether their kids have Duchenne or not — will follow.
Finding out that your child has Duchenne brings unimaginable pain, heartache, and tears. My parents had their moment of grief, but they moved forward and learned everything they could to help me.
The outcomes of this disease vary widely. My parents didn’t know how long I’d live, but they were adamant about putting time, money, and energy into my education. I did what all of my peers did because they knew I was capable, and with their pushing, would live past the dismal life expectancy for those with Duchenne circa the 2000s. It was never a question of whether or not I’d go to college — just where and when.
Because of my parents, I never felt like I was incapable of getting a job, going to school, or traveling to a foreign country because of my disability. Time and again, we found a workaround. And as I’ve gotten older, they’ve put the responsibility on me to figure it out.
They’ve never missed an opportunity to say, “I love you.” My parents have spoken these words many times, but they’ve also demonstrated their love through action. They are kind and forgiving, but also push me to be the best and healthiest version of myself. That meant making me eat vegetables when I didn’t want to, limiting my video game time, and encouraging me to go to Washington, D.C., when I got an internship at The Washington Post.
My parents helped me to develop my personal mantra: Focus on what you can do, not on what you can’t. I couldn’t do sports, but my mom signed me up for screenwriting classes, a book club where we competed with other schools on reading comprehension, and technology camps. My dad and I joined the Boy Scouts, and my parents pushed me to become an Eagle Scout, the highest rank that only 2% of all scouts have achieved.
They’ve never treated me any differently than they would a physically typical child — I just did different activities. Duchenne was never an excuse to get out of homework!
To be clear, they never forced me to do anything detrimental to my health or well-being. In fact, they often told me to stop working so hard and rest.
In some ways, I hated riding on my dad’s shoulders to participate in hikes like Mugu Peak Trail. I was a teenager and wanted to be right next to my friends. But looking back on it now, I forged a strong bond with my father and rarely missed out on anything because of his willingness to help me. It’s a perfect metaphor for how my parents have loved, pushed, and strengthened me.
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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Comments
MM
Thank you for writing this Hawken... my boy is 6 and I hope we can raise him the way you have been raised. You are a true inspiration for all of us impacted by duchenne directly or indirectly. Please keep up the wonderful work, your posts gives parents like me hope week in week out. Thank you once again!