Duchenne Gave Us a License to Live Our Own Way
My family stands out. I’ve shared that with you before.
The sheer number of children is enough to make us different. But three boys with Duchenne muscular dystrophy (DMD), often seen in their wheelchairs, make us even more for the eye to take in.
Standing out was hard for me at first. When the boys were young, they walked or were in strollers, so no one could tell they had DMD. It was easy to blend in. But when we bought mobility scooters for all three boys with Duchenne, we started to stand out.
Sometimes people were rude to us. They would say things about how lazy kids are when they can’t even walk, insinuating that they used the scooters for a reason other than a medical need.
The people who stared but didn’t say anything didn’t make things easier, either. I was always — and still am — thankful for the kind eyes and smiles of those who realized there was a reason the boys were using devices. Some asked questions and wanted to learn.
Learning to adapt
I don’t remember when it started to get easier for me. My natural disposition is to be a wallflower. I like to sit back and observe, not be observed. But I had a gradual mental shift somewhere along the way. Today, I sometimes notice others watching us curiously, and sometimes gawking. Other times, I don’t notice at all.
I think things improved when the boys were older and started to use power wheelchairs. Of course it shouldn’t be that way, but the power chairs clued in the public that the boys had a medical diagnosis, and people have typically been kinder to us when we are out and about.
The power chairs have been positive game changers for us. I dreaded the day the boys with Duchenne would need them, but when we brought the first one home and could see the freedom and independence it gave our son, we loved it immediately.
That said, they come with challenges. Not everywhere is accessible. There are steps, narrow doorways, and aisles the chairs can’t navigate. They are heavy, and some chairlifts can’t handle their weight. Many places have a ramp to enter, but once inside, there are steps. Challenges are everywhere for power chair users.
People often ask the boys, “Do you have a license to drive that?” Take it or leave it, appreciate it or hate it, it’s the line they hear most when out in public.
Of course they don’t need a license to drive, but Duchenne has given us a license to do things our way.
Getting creative with life
I am an artistic person.
In school, I took all the arts classes. I had more than one teacher along the way who encouraged us to take our artistic license out when writing or creating. I loved those teachers!
Duchenne does not come with a handbook. No two children are affected the same way. The only way to navigate a world not made to accommodate the disease is to do life the way it works for us.
I’ve embraced the power in that. If a field trip doesn’t work for the boys, I pull them out of school and we do something extraordinary. If all the accessible stalls in the parking lot are full and we need somewhere to unload, I make my own parking space. When getting to the only working elevator takes us through a back hallway or other route off the beaten path, we make it an adventure.
We get to make a life that works for our family’s shapes and sizes and wheels and motors. It doesn’t have to look the way anyone else does it.
It’s not always easy to live with Duchenne. But focusing on the positive helps a lot. My positive approach to the obstacles and the challenges of three sons in wheelchairs is that it has given us a license to do it our way.
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.