“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.
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.
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.
We live in a culture of noise. Everyone wants to talk, but it seems like only a few want to actually listen. I’ve learned so much from being a Duchenne parent. Many other Duchenne parents reach out to me, and I know that the most helpful thing I can do for them is to simply listen. I don’t tell them how to feel or give them unsolicited advice. I just make sure they don’t feel alone.
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.
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.
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.
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.
My children inspire me on a daily basis. They make me want to be a better person. They inspire me with their words, their actions, and their amazing ability to fight a disease like Duchenne with such grace. I work hard every day to serve them with love, humility, and compassion. I want my children to feel loved unconditionally. I never want them to feel like their needs are a burden to me. I strive to have a servant’s heart.