When it was time to take him back to bed, I helped him up and followed behind him. Watching him carefully wobble as he walked cautiously back to his room. He stopped and looked up at me, “Mom will you carry me?” He whispered. I scooped him up and carried him to his bed. As I carried him, I could imagine him as a tiny little baby staring up at me, completely dependent on us for his care, and yet here he is nine years old in need of the same type of care. Pushing my emotions down, I kissed his forehead and went back to bed.
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.
he other day I was in the worst mood. Everything trivial felt heavy and exhausting. Laundry, dishes, homeschool, work, cooking, and cleaning piled up and left me weary. I was tired, worn, and just sick of my own thoughts. The dog chewed something; I yelled. Someone made a mess; I sighed like I was trying to let the neighborhood hear me. I cringe thinking about how ungrateful I sound, but it’s true. That day I was whiny, irritated, and full of self-pity. It was one of those days.
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.
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.
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.