What Hurts the Most
Sometimes difficult moments sneak up on you as a Duchenne parent. Conversations you didn’t expect to have so soon, moments that knock the wind out of you with their presence, and events that just feel like a punch to the stomach. The sudden loss of an ability that seemed so far in the future shows up without warning and takes your breath away. My husband and I refer to these moments as “gut punches.”
Our first gut punch came with the diagnosis. All of our hopes and dreams for both of our sons’ futures changed so drastically in a second. We went from ordinary parents to Duchenne parents overnight. It’s impossible to explain the emotional pain we were feeling during that time in our lives. There are simply no words to describe how it feels. However, in time, we learned to accept our new lives and create new hopes for the future.
I naively thought that the diagnosis would be the part that hurt the most. I thought that once we accepted our new lives, we would be able to handle everything ahead with courage. Sometimes we do, but other times, small things sneak up on us and make us realize that those gut punches will always come our way. Sometimes they’ll be moments that bring anxiety or fear, and other times they may be major events that change everything.
I think that’s one of the hardest parts as a parent of children with a disease like Duchenne. Every time you adjust to a new change, something else happens, and you feel that same familiar jab in your stomach. You can read all day long about what to expect along the way, but until your son actually goes through those things, you truly have no idea what it feels like. I learned that recently when our son stopped walking.
We knew our oldest son would eventually lose his ability to walk, but not at ten-years-old. We knew his legs were getting weaker, but the pain I felt when he collapsed in my arms one morning, unable to walk, simply cannot be anticipated. You can’t prepare for grief like that. Thankfully our son overcame his grief quickly and accepted his new life graciously, but my husband and I struggled to overcome the grief we felt. The emotional pain of watching your child weaken is just too much to bear at times. Thankfully God carried us through the hard days.
The gut punches aren’t always huge events like the loss of an ability; sometimes, it’s a simple question. “Mom, can I be an FBI agent if I’m in a power chair?” “Mom, do you think they’ll EVER cure our muscle disorder?” Sometimes it even comes from the most innocent sources, like when our four-year-old daughter said, “I wish you could walk,” to her older brother.
The other day my son and husband were playing a hockey video game together. Our son scored a goal and smiled so big when his dad reached out a hand to him for a high-five. My heart broke when I saw how hard it was for him to lift his arm up and slap his dad’s hand. My husband’s eyes locked with mine as I held back tears.
Sometimes those same tough moments are somehow intertwined with joy too. Moments when your child blows you away with their bravery and perspective on life. How can you not be amazed when your son asks why God would give him a muscle disorder and then says, “Oh, probably because he knew we’d have such a great life.”
There are gut punches constantly on the Duchenne journey, but there are also so many incredible moments. Moments that are honestly so much more special because of the hard times. The pain somehow works like a lens that allows you to see life differently. It’s like a telescope that only some of us get to possess. The rest of the world sees things one way causing them to take so much for granted, but we’ve been given the gift of perspective through this disease.
Beauty is everywhere when you see from such a significant viewpoint. Kindness is more apparent. Hugs are sweeter, laughter is louder, and the smiles on your childrens’ faces bring more joy than ever before. Suddenly it becomes clear that life is meant to be lived with intention and gratitude, even in the midst of the most painful of circumstances.
I think what truly hurts the most is not those gut punches that Duchenne brings your way, it’s actually the fear of their absence. Time becomes so precious that you crave any moment with your child, even a difficult one. Every day ticks by so quickly, forcing your mind to rush ahead into an uncertain future.
It’s so important to learn to control where your thoughts drift off to. You have to try to take those thoughts captive when they come. I’ve realized that instead of focusing on what hurts the most, I can focus on what I love the most. I love so many things about my life, but what I love the most is who I get to share it with.