I have a confession to make. Sometimes I focus way too much on the negative things in my life. I see a family riding bikes and my heart sinks, my boys can’t do that anymore, I think to myself somberly.
The doors opened, and we all went in and pressed the appropriate button. The doors closed, and he just stared at him. The old man shook his head and looked at me. With a thick heavy accent, he said, “too young.” I smiled awkwardly, unaware of what he meant. “Too young for a chair,” he said sadly. I nodded quietly, but when my eyes met his, he pointed at my son and asked, “What’s wrong with him?”
I don’t often find myself wishing for a normal life. I love my life, and I don’t see the point in trying to envision what could’ve been had Duchenne not entered into our lives. I try to accept my life just as it is and find joy in it, but somedays I do have moments of sorrow.
I live with one foot in the future. My life is a constant dance between hope and fear. I have the privilege of raising three incredible children, two of which have a degenerative disease. My days are full of joy, but they are also full of the most agonizing kind of pain I’ve ever experienced. I watch as day after day my boys grow weaker and weaker. My daughter is gaining more and more abilities as she grows stronger, while her older brothers are continually losing abilities they once had. Duchenne is a cruel form of torture.
It felt like we were thrown into a raging unfamiliar sea with no idea how to swim. Drowning in emotions, grief, and paperwork, we struggled to adjust to our new life. We were being asked to make decisions about things we knew nothing about. It was overwhelming, to say the least.
People often wonder what it’s like to raise two sons with a degenerative disease. It’s a hard question to answer because it feels impossible to live through, let alone explain. There are no words to express how it feels to watch one son weaken and lose his ability to walk, only to have another son following the same pattern right behind him. My boys are only two years apart, and sadly the disease seems to be affecting them both rapidly.
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.”
There’s a small decoration that sits on my desk. It reads, “begin each day with a grateful heart.” Some days I stare at it and smile as thoughts of happy memories flood my mind. I hear my kids laughing and playing. I picture family vacations and experiences that we’ve shared together. Some days, I feel such intense gratitude for my life that it overwhelms me. Tears fill my eyes, and I thank God for the beauty that surrounds me.
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.