The Chance of Having Only One Son Without Duchenne MD
My husband and I have four sons, but I spend most of my energy in this column writing about the three who have Duchenne muscular dystrophy (DMD). I often wonder what the chances are that three of our four sons have the disease?
When my oldest son, Max, was diagnosed, we learned that each of our boys would have a 50% chance of inheriting DMD if I was a carrier, which I eventually learned I am. Our second son, Chance, is our only son without the disease, and we picked out his name long before we knew about Duchenne.
Chance has never known life without his brothers’ disease. He was 3 when Max was diagnosed. In some ways, Chance helped us understand that Max wasn’t developing typically.
When I was pregnant with Chance, I hoped Max would start walking before the baby came. I was worried about carrying Max in one arm and a baby carrier in the other. Looking back, I should have been more concerned about why Max wasn’t walking at 17 months. It seems like it should have been more obvious.
Chance started walking, then running and climbing, but Max still couldn’t do those things. That’s when we began to wonder if something was wrong.
Growing up in the middle of three brothers with DMD, Chance naturally helps them. Early on, he constantly pushed their strollers, lifted heavy things, and picked up stuff they had dropped. As the disease progresses and his brothers grow weaker, one to the point of being unable to walk, Chance grows stronger. He now provides caregiving, and can be their legs and lift and transfer them when needed.
He also provides stress relief. We try to be positive, but living with Duchenne is stressful. It’s frustrating for the boys to grow more dependent as their peers and siblings grow more independent. However, Chance always knows the right time to tell a story or crack a joke, offering much-needed laughter and ease.
Chance is now a high school freshman and a talented athlete. He spends more time away from his brothers to attend practices, workouts, lessons, and camps.
This is how it should be, but I worry that the coaches and teammates who haven’t seen him with his brothers don’t really know him. His life can be challenging, but Chance has a big heart and gives more of himself than he could ever receive. Plus, he’s protective of his mom.
Chance is in the middle of a growth spurt. He’s surpassed 6 feet tall, and I’ve ordered him size 13 baseball cleats. He is physically strong and often mistaken for much older than his 14 years. But he is my only son who’s growing bigger and stronger.
Raising Chance alongside his brothers allows us to know what it’s like to have a healthy son. My husband is able to coach and teach him about sports. I love watching Chance compete and am glad that his size and strength help him to do what he loves well.
Sometimes I wonder what it would be like if his brothers could do sports and grow bigger and stronger, too. What if they were all over 6 feet tall? It would have been fun to watch our boys play on teams together. I imagine hearing their names over the loudspeakers as part of the starting lineups.
I wonder what a life without Duchenne would be like. And then I feel guilty because I love all of my boys precisely as God gave them to me. I would choose Duchenne every day and have them just as they are, rather than know life without them.
However, the reality is that without a cure in their lifetime, there may come a time when we are living without them.
I am thankful that Chance is an athlete because his teams offer brotherhood. It will be crucial for Chance to have those connections, because there could be a day when his brothers succumb to their disease. He will benefit from having the supportive relationships he’s forging through his sports career.
Our Chance came in the form of our only son without Duchenne. He is growing into a man who will face heartache he may not yet understand, but his journey, which is so intertwined with his brothers’ journeys, is one of love in action. Whether he’s competing or caring for others, his biggest, most appreciative fans will always be his family.
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