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.
Our lives can feel isolating, exhausting, lonely, and misunderstood. We are allowed to power down and be still sometimes. Those days can actually let out deep emotions that we’ve pushed down, emotions that need to come out. After a good cry, a restful day, and a whole lot of grace, you’ll feel lighter and ready to face life again.
As a Duchenne parent, there is so much that I wish other people knew. There are so many misconceptions and incorrect assumptions that make life even harder for someone like me. Most people in my life are incredibly loving, supportive, and understanding. Their presence means the world to me, but there are moments I wish I could make things a bit clearer for the rest of the world.
I’m the mom you tell your friends about. When the topic of suffering comes up in conversation, I’m the one you talk about. It’s my story you tell, my prayer request you share, and my circumstances you speak about. I’m that mom whose shoes you would never want to walk in. I’m a mom that I never thought I’d be.
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.
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.
At that moment, I was once again blinded by that incredible light inside of him. It shines through his laugh, his selflessness, his kindness, and the way he loves others with every piece of his heart. It’s rare that someone so young can make you want to be a better person, but that’s what he does.
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.