I have deep scars all over me. I’m covered in painful wounds that have completely changed my life. Most of them are not visible to the eye, but I assure you they are there. Each scar has been left behind one by one from all the painful things I’ve gone through in my life. The loss of my older brother will forever leave a mark on my heart, one that I still feel every day. There are so many invisible scars, and they all hold a significant story, but the one that cuts the deepest is most definitely my Duchenne scar.
Two years ago, I didn’t know what Duchenne was. I wasn’t even familiar with Muscular Dystrophy, but when the diagnosis came, I had no choice but to become a Duchenne parent. Now I could probably write a book about this disease. I have watched it steal so much from my children, and its presence has changed us in more ways than one. The pain of learning that two of my children have a degenerative disease has left a scar so wide that it will always be part of me.
I used to desperately try to hide the scars that Duchenne has brought my way. I used to think that if I could just figure out a way to ignore the pain, life would be easy again. Now I know that the pain was never meant to break me; it was meant to transform me into someone new.
Pain is never meant to harm us. Pain always serves a divine purpose, whether we realize it or not. Suffering is not meant to destroy us; it’s meant to refine us into the people we were always meant to be. It took me a long time to realize that, but once I did, I was able to stop fighting the diagnosis, and once I surrendered to a whole new life, things got a little easier.
Without the scars that come with Duchenne, I wouldn’t be who I am today. It’s like Robert Frost once said, “Two roads diverged in a wood and I – I took the one less traveled by, and that has made all the difference.” I didn’t plan to take such a long, bumpy, and treacherous road. I never expected my life to follow a path like this, but now that it has, I have no choice but to embrace it. I’ve seen trauma, tears, and sorrow on this path, but I’ve also seen beautiful scenery along the way.
Duchenne may take you along a painful path, but it comes with a profound perspective. Without the bumps in the road, we wouldn’t cherish the good days like we do now. Without the scars, we wouldn’t feel the joy as deeply, and the laughter wouldn’t sound as heavenly. Without the diagnosis, our life would be easier, but not as meaningful as it is now.
The scars are not something I despise anymore. They have somehow become sacred to me. They are now life-changing reminders of all the love, memories, and moments that I will cherish forever.
I have a large and visible scar on my arm from my childhood. I was playing outside, pretending to be an Olympic gymnast when I fell. I scraped my arm on my way down from my makeshift “balance beam.” All these years later, I still have a huge scar on my forearm. The funny thing is, the scar doesn’t remind me of the pain I felt that day. It reminds me of a happy childhood. It brings back memories full of love, imagination, and joy.
I have deep scars all over me, some are visible, and some are not. I used to look at them with fear and resentment, but I don’t anymore. Now I see them as a sacred part of me. I see them as a reminder of my new life. The scars may never heal, but they will always serve a meaningful purpose. They will forever remind me of my divine calling, unfailing faith, and relentless love for my children.