Every Duchenne parent remembers diagnosis day vividly. Everything changes that day. Your mind is suddenly consumed by fear, uncertainty, and endless thoughts about the future. Your heart somehow begins to beat differently. You look at your children and see them through a whole new set of eyes. Life is just not the same anymore, and it never will be.
That day felt like the end of the world. Depression took over and brought me to a dark place I didn’t recognize. A place where getting out of bed was suddenly difficult, and sobbing in the shower was normal. Everyone else seemed so different from us now. I didn’t understand how the world could keep turning or how the sun could keep rising. How could everyone continue living like normal when our lives had just so tragically been flipped upside down?
God gave me peace somewhere along the way and made my focus shift to my purpose. I woke up one day with eyes of gratitude and determination. The sunrise that once angered me with its lack of awareness of my pain, now looked brighter than ever before. My children’s laughter, birds chirping outside, and the sound of rain on my window sounded like beautiful music that I failed to hear properly before. I realized that my world had indeed ended that day because a new one had to start.
My sons are now eight and ten years old. They are significantly weaker physically than they were two years ago when they were diagnosed, but their spirits are stronger than ever before. What I’ve learned since that day is that my boys already lived in the world of Duchenne, they just didn’t know what it was called. They knew they were different. They felt a sense of relief to finally have an explanation for their difficulties. Now they knew why they couldn’t run as fast as their friends or climb as well on the playground. They knew they were created this way; it was my turn to pay attention to my purpose. My purpose is to be their mom, caretaker, advocate, and number one fan.
My ten-year-old son is in the late ambulatory stage of the disease. He can walk, but it’s incredibly difficult for him. He rests a lot these days. His feet turn in when he walks, and he can barely put his heel all the way down as he steps. We fear he is close to being in his powerchair full time.
As I helped him into bed the other night, we talked about his struggles. Every transition with this disease comes with physical difficulties, but it also comes with deep emotional struggles that are not acknowledged enough, in my opinion.
He knows he won’t be able to walk much longer. As I spoke, I tried to think of the right things to say to him. I always want to comfort and encourage my boys, but I also want to be sure to validate any tough emotions they may be dealing with. He ended our conversation with one sentence that made me realize just how incredible my boys are.
“Mom it’s not the end of the world if I can’t walk,” he said bluntly. It’s not his disease that makes him inspiring, it’s his response to it that inspires others. I think that’s what makes both my boys so special. They truly have no idea how amazing they are. Even when they do get frustrated with their bodies, they don’t stay in a dark place. They shake it off and go back to living their lives to the fullest.
There’s a quote by Orson Welles that I recite to myself sometimes – “If you want a happy ending, that depends, of course, on where you stop your story.” In the middle of a bad day, I remember that this is not the end of our story. When trauma strikes or transitions arise that break my heart, I remind myself of all the chapters we have left to fill with wonderful memories. Our story is already overflowing with love, courage, joy, and beauty – and it’s not over yet.