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.
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.
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.
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.
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.
Nights are the hardest for me as a Duchenne mom. The worries, the stress, and the exhaustion seem to catch up to me as soon as my head hits the pillow. I try to gear up for the night ahead, knowing that I will still be needed throughout the night. I feel honored to be a caretaker to my beautiful boys, but that doesn’t take away the exhaustion that it brings. By the end of the night, I feel like my strength is completely depleted, and yet I must get up every time I’m called.