Teaching My Kids About Duchenne

No parent should ever have to tell their child they have a degenerative disease. There is no parenting book in the world that will prepare a mother to tell her two sons they have Muscular Dystrophy. How do you tell your six and eight-year-old sons that their lives will never be the same again? There is just no possible way to prepare your heart for such a task, but after I got that dreaded call that’s exactly what I had to do.

After I hung up with the neurologist it took me awhile to pull myself together. I could hear my three children playing together down the hall. I didn’t want to overwhelm them with too much information, but I also knew they couldn’t accept their new lives if they didn’t know the truth. There’s a saying about suffering that I’ve always held onto in difficult times; the only way around the pain is through it. In my experience the only way to come to a place of acceptance is to face the pain. The only way to climb out of a dark place is to first accept where you are.

“You have a muscle disorder. It causes your muscles to work differently than other peoples.” I said as gently as I could. I waited for them to cry and ask difficult questions, but they didn’t. Only one simple question came my way. “Mom, is that why I can’t do the monkey bars?” My eight-year-old son asked. “Yes buddy, that’s why” I said, holding back tears. And, that was it. They went back to playing together as if nothing had changed.

That first conversation taught me something important. Even though I felt shattered by the news, they weren’t shocked at all. They already knew they were different. They knew they struggled to keep up with their friends on the playground. They just didn’t know why. The reason, as difficult as it was for me to accept, gave them a sense of relief. It gave them an answer to a question that had always been there.

From that moment on I knew that I didn’t need to be afraid to talk to my children about their disorder. I didn’t need to hide Duchenne like a giant elephant in the room. I didn’t need to tell them to be brave, because they already were. I didn’t need to lead them through this journey, because they would clearly be the ones leading us.

At our first clinic appointment, our local MDA representative told us to be honest with our boys about Duchenne, but in an age appropriate way. So, that’s what we’ve always done. My husband and I try to be gentle but truthful with our kids. We don’t jump ahead to things they aren’t ready to hear, but we don’t lie to them either. When they ask us questions, we answer them to the best of our ability.

All three of our children have accepted this life with tremendous grace. The other day, as I helped my oldest son get out of the shower, he asked me how he would take a shower when he’s not able to walk anymore. I was surprised by his question, but he wasn’t upset just curious. I told him that we’d just get him a rolling shower chair. “Cool, can I have a snack? He said and walked to the kitchen. No sadness, no anger, just acceptance and apparently hunger.

My three-year-old daughter even asks us questions about her brothers’ muscle disorder. I had to sit her down and explain it to her one day after she pushed one of her brothers. I took two cups out of the cabinet, one glass and one plastic. I told her to throw the plastic cup on the ground, she did and laughed. Picking up the glass cup, I said now “What if we throw this one?” She said, “It would break.” I said “Exactly, we can’t throw this one because it’s fragile. Your brothers’ muscles are like the glass cup and your muscles are like the plastic one. You have to be gentle with them.” I’d like to say that thanks to my clever explanation that she never pushed them again, but she’s three so that’s not true, but it helped.

My daughter loves to help me stretch them and help them up. She even runs to pick up toys they drop, knowing they can’t bend down safely. She loves them and wants to be just like them. Sitting at the dinner table one evening after we got home from one of the boy’s Make a Wish trips, she asked us why she doesn’t get her own Make a Wish trip. I explained that they get a special trip because of their muscle disorder. She folded her arms and sighed, “I never get to have a muscle disorder.”

Obviously, there are hard moments in our lives too. Sometimes our boys get frustrated that their bodies won’t do what they want. Sometimes they feel discouraged, angry and sad, but it’s very rare. Sometimes they have a dark moment, but they don’t stay there for long. I believe in letting them feel the way they feel. I struggle with anxiety and depression. When I’m having a tough day, I don’t want someone to tell me to snap out of it. I don’t want someone to tell me to be brave. I just want someone to sit with me in my sorrow. I want compassion and patience. When my boys have a tough moment, I pray with them and try my best to comfort them, but I don’t tell them how to feel. They will climb out of that darkness on their own, when they’re ready, they always do.

I overheard my sons playing together one afternoon. My oldest son got frustrated with something they were trying to do. “We can’t do that!” He yelled to his younger brother. “Not with that attitude,” my seven-year old boldly replied. This adorable conversation describes my boys perfectly. They were created to be fighters. They have this bright light inside of them that’s impossible to ignore. They don’t focus on what they can’t do, they find a way to do it differently.

There is still a lot about Duchenne that my boys don’t know. As they come to us with questions, we’ll be honest with them at their pace, but my main goal is not to talk to them about muscle deterioration and the complicated medical side of things. My goal as their mother is to make sure they know how incredibly loved they are. My job is to listen, encourage and sit beside them in their joys and sorrows.

No mother should have to talk to her kids about Duchenne, but I do. I have no choice. This is the life we were given and we are determined to make it a beautiful one. I used to dread conversations with my boys about their disorder. I used to worry about finding the right words, but I don’t anymore. I trust God to guide our steps and give us the right words at the right time.

Every conversation starts with a difficult question, but then comes the part where my sons take my breath away with their ability to choose joy. One day they will ask us questions that I’ve feared since that first phone call, but I’m confident that even then they will amaze us with their courage.

If the only way around the pain is through it, my boys will take the lead – but I will make sure they don’t go through it alone.