Don’t Look Back
“Don’t look back, you’re not going that way.” This quote could have so many meanings to so many people depending on what they’re going through. For me, it made me realize that I spend too much time in the past.
The Little Things
Have you ever noticed that when you look back on memories from your past, it’s actually the little things that come to mind first? Looking back on my life, I don’t see a collage of all my big memories. Instead, I see a flash of little things that seemed somewhat ordinary at the time. However, it’s those ordinary moments that turned out to be incredibly memorable.
Hang On
Sometimes I feel like that poor little kitten in that famous poster. “Hang in there,” it reads, as the sweet little kitty tries to grasp that tree branch with all its might. Apparently, this poster is supposed to be motivational. I see it more as a reminder of how hard life is, especially as a Duchenne parent. It reminds me how isolating this life can be, and it makes me realize just how important it is to have support from others who truly understand.
A Normal Life
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.
Today
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.
Pouring From an Empty Cup
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.
Difficult Decisions
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.
What Hurts the Most
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.”