Every day is full of beautiful moments of joy and gratitude, but every day is also full of moments of sorrow and fear. Every Duchenne parent is familiar with this painful paradox. It’s just a part of what it feels like to have a child with a degenerative disease. We rejoice with them daily, but we also mourn with them through the difficulties they face. Sometimes at the exact same time.
Two weeks ago, on what felt like an ordinary day, my ten-year-old son took his last steps. We had no idea that day would be one of those “lasts.” The day before he walked to the bathroom, he walked into the kitchen, and he was able to stand by himself. I didn’t know that the next day when I’d attempt to lift him to a standing position, he would buckle in my arms, unable to bear weight on his legs. Just like that, he couldn’t walk anymore.
We all remember that day. Sometimes the very thought of it can bring us to our knees in agony. Other days it simply acts as the line of demarcation, dividing our old life from our new one. Diagnosis Day is a day we never forget because what follows is a completely different way of life. Among the Duchenne community, this day is referred to as D-Day. Most of us have the date etched in our minds like a scar we cannot erase.
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.
Nights are the hardest for me as a Duchenne mom. The worries, the stress, and the exhaustion seem to catch up to me as soon as my head hits the pillow. I try to gear up for the night ahead, knowing that I will still be needed throughout the night. I feel honored to be a caretaker to my beautiful boys, but that doesn’t take away the exhaustion that it brings. By the end of the night, I feel like my strength is completely depleted, and yet I must get up every time I’m called.
Every day we have a choice to make. We can live in fear by letting negative thoughts consume our minds, or we can take charge of them with determination. We can take our thoughts captive and purposefully focus on joy, or we can let the pain take over, but the choice is ours to make.
I have a confession to make. I love being a mom, and I’m honored by my role as a caregiver, but sometimes it exhausts me to my core. Sometimes I don’t feel like being patient. Sometimes I don’t feel like being gentle, kind, and loving. I care for my children every day, and I wouldn’t change that for the world, but it’s also really hard.
Duchenne, you have no idea how much you’ve changed our lives since diagnosis day. It started with a simple blood test and ended with a phone call that brought me to my knees. I cried out to God, begging Him to heal my boys. I begged God to take you out of our lives, but sadly you’re still with us. It’s taken me a long time to accept that fact.
Every day I wake up surrounded by moments. Some moments are ordinary, and some are unforgettable. My favorite moments are the ones full of laughter, joy, and unconditional love. I’m not blessed with these beautiful moments because I have a perfect life, or due to a lack of suffering. Quite the opposite, actually, I have plenty of painful circumstances in my life.
“Be strong,” people keep telling you, but they don’t know how it feels to hear the doctor confirm the diagnosis you feared most. They don’t know that his words keep haunting you like a song you can’t get out of your head. Duchenne Muscular Dystrophy you keep hearing over and over again. They don’t understand the trauma that takes place inside a mother’s heart when she hears that her child has a degenerative disease. They don’t, but I do.