On a rough day, insight into my sons’ life with DMD, wheelchairs
Coping with inconveniences, inaccessibility, frustration, and unintended cruelty
My husband, Jason, and I are parents to seven children: Lexi, 23; Max, 19; Chance, 17; Rowen, 16; Charlie, 14; Mary, 10; and Callie, 3. This week we’re traveling with five of them: Max, Rowen, and Charlie, who are our three sons with Duchenne muscular dystrophy (DMD), and our two youngest daughters.
We’re visiting the children’s hospital in Colorado so that the boys can attend their clinical trial and comprehensive neuromuscular clinic appointments. This trip has helped me find words to describe what it’s been like for my sons to use a wheelchair in public.
We got off to a rough start on Tuesday, which made me more in tune with the comments made to and about my sons that morning.
It all started when Charlie was using the hotel bathroom. Rowen and Max were awake and ready; in fact, Max was parked directly on the other side of the bathroom door when his younger brother yelled for help.
Still partly ambulatory, Charlie usually gets up, opens the door, and yells for his dad or me to help him. This time, however, Jason and I were in another room, getting ourselves and the girls ready, and Charlie was uncomfortable getting up in the bathroom and yelled for help early. Jason and I couldn’t hear him.
When we walked into the other room, Charlie was freaking out, afraid we were leaving him in the bathroom. I asked Max why he hadn’t told us that Charlie was yelling for help. And once Charlie realized Max had been outside the door the entire time, he started yelling at him.
Max screamed back, “Charlie, I’ve been in a bathroom longer than that, and I didn’t cry.” Except that when he said it, he creatively used several colorful words and called Charlie names.
We intervened and had stern words for Max’s behavior and the language he’d chosen to use in front of us.
The situation didn’t completely diffuse, but we managed to calm it down some. We went to the hotel restaurant for breakfast and made it through the meal. Max didn’t smile once, and he didn’t converse with any of us.
They mean well. But.
As we got up to leave, an elderly person pointed a finger at Max, all cutesy like he was 8 years old instead of 19, and said, “I wish I had one of those,” indicating his wheelchair.
I held my breath because given Max’s mood, he was unlikely to hold his tongue. However, he waited until we were out of earshot before saying, “Yeah, well, I wish I didn’t!”
Those are challenging moments. Max was right, but if we stopped to correct everyone, we’d never make it through the day.
When we went through security at the hospital, the guy who checked their backpacks with the wand looked at me, yelled over my sons’ heads, and said, “There are three of them. That’s awesome!”
How awesome that was, given the start of the day!
We made it to the check-in desk, where we had to give the patient names and the appointments to get clearance into the hospital. The person recognized us and said, “Oh, I love this family.”
“Love” seemed like a strong word. Jason and I got our visitor stickers, and as we walked away, we overheard, “They are so sweet.”
I told Jason, “You should’ve seen us this morning.”
After a long and stressful morning, we laughed and finally started our day at the hospital.
What sticks with me most about the day is not my sons’ antics. Let’s face it: They’re teenage boys making it through a tough day and an ugly diagnosis. Instead, it’s the multiple ways the wheelchairs affect my sons’ lives.
Not only is their need for wheelchairs a direct result of the degenerative disease they deal with every day, but the world isn’t accessible. And when we travel, those challenges are multiplied because there are three chairs. People say cruel things without even realizing their meaning or impact. Many people have trouble seeing past the chairs, or they assume the chairs mean they are young, simple, and sweet.
Perhaps the most frustrating thing is that when my three sons are together, using their wheelchairs, people have a compulsive need to comment on it.
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.
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