What’s Wrong With Him?

Every day is full of moments to educate, advocate, and share the source of my strength with others. I want to be a light for those suffering. I want to offer hope to those in a similar situation, and most of all, I want to lead people to God with my story. Some days I wonder if I’m doing enough to reach these daily goals of mine. The other day a short conversation caused me to wonder if I’m handling things the way I should.

Our boys had a check-up at the cardiologist. As usual, we had the whole family in tow. Both boys were in their power chairs, my daughter was walking hand in hand with her Daddy, and I was following behind with my trusty medical binder. As they headed up to the sixth floor, I stayed back with Mason to take the next elevator. You’d be surprised how small some elevators are and how difficult it can be to accommodate two power chairs, even in a medical building.

As we waited for the next elevator, an old man stood beside us waiting as well. I could feel his eyes on us, and I tried to portray a smile through my mask, but he just stood quietly watching my son sit in his chair patiently waiting. The doors opened, and we all went in and pressed the appropriate button. The doors closed, and he just stared at Mason. The old man shook his head and looked at me. With a thick heavy accent, he said, “too young.” I smiled awkwardly, unaware of what he meant. “Too young for a chair,” he said sadly. I nodded quietly, but when my eyes met his, he pointed at Mason and asked, “What’s wrong with him?”

To be honest, I wanted to cry. I wanted to tell him a better way to ask that question. I wanted to go into Mama Bear mode and tell him not to point, but I knew that an unkind response would not educate or advocate. I did worry about my son’s feelings, but he seemed unphased. I simply replied, “He has muscular dystrophy.” As the doors opened and we exited the elevator, the old man watched us leave, shaking his head sadly. I knew he meant well, but his words stung, and I couldn’t shake them.

I stopped in front of the doctor’s office and asked Mason if the man had hurt his feelings. He shook his head no and said he didn’t really hear him anyway. Still, my heart ached a little. Maybe I handled it fine, and that man will now go home and look up muscular dystrophy. Maybe he will even donate to help kids like Mason. But, looking back on that day, I wish I had said more.

There was a woman holding her daughter in the elevator with us, headed to the same floor. I could feel her cringe as the old man muttered those words. He was an old man, though, and with his thick accent, who knows if he was able to articulate himself in a better way. At least he spoke to us instead of just staring. Still, I kept thinking about it later.

It’s not as if I wanted to share the science behind, “what’s wrong with him,” but I wanted to make sure Mason knew that I saw nothing wrong with him. I wanted to say, yes, he can’t walk very well, but you should see him build a lego kit, tell a joke, or overcome an obstacle like a superhero. I wanted to tell him how scared Mason used to be to use his power chair in public because he felt embarrassed, but here he was, navigating the tiny elevator and slim hallways like a pro. I wanted to say that Duchenne is what prevents him from walking, but nothing will prevent him from bringing the world joy and inspiration.

I realize now that I handled it the best I could. I was caught off guard. I was anxious about the appointment, and I wasn’t prepared to share my life story with a curious old man. My husband assured me that I handled it fine, and we continued on with our day. But even as we went to dinner to celebrate the good news that the cardiologist gave us, no change is good news, I still kept thinking about his words. Wrong. What’s wrong with him?

Genetically, I realize my boys are missing some very important exons, causing their muscles to deteriorate. I realize how wrong that is, but I want to tell the world what’s right about my sons. I want to shout about their courage, their bravery, and their kind hearts. I want to share how much my boys inspire me every single day.

So, to the old man in the elevator who meant well but hurt my feelings, I’d like to share some more information with you. The boy you met that day is not just his disease; he is so much more. My son is amazing! His legs may be weak, but his laugh is full of contagious joy. His heart may need to be monitored for damage, but his faith is rock solid. He may fall down sometimes, but he always gets back up and keeps fighting. Instead of just telling you about his diagnosis, I should have told you about his beautiful soul. Next time I’m asked to explain, I will have to share a bit more information. I will say he may not be able to walk, but oh, you should see him smile.