Right now, you’re probably putting your baby to sleep. You might be rushing to put him down so you can go get dishes done, laundry started, and dinner prepped. I get it; I do. I know you feel overwhelmed by the constant state of stress you’re facing. That growing to-do list in front of you seems to get longer by the second but listen to me closely. You need to slow down. You need to cherish every single second of the stage you are in right now because before you know it – it’s over.
I bought a shirt recently that says running on faith. I love it for so many reasons. Of course, it’s comfortable, but it’s also a reminder for me to shift my perspective. When I feel like I’m running on empty and I can’t make it one more mile, faith takes over. When I feel like I’m climbing a mountain and all I see is the huge trail ahead of me, faith tells me to just take one more step. Where my strength ends, God’s strength begins. It’s a life-changing way of thinking for me, especially as a Duchenne mom.
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.
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.
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.