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.
Sometimes I have visions from the past, like watching my oldest son wander out of his bedroom in the morning back when he could still walk and saying, “Good morning.” Somedays, I try to remember what it felt like to ride bikes out front or go to the park and watch them climb, run, and jump. They can’t do those things anymore, I already know that and accept our new reality, but sometimes it’s hard.
We still get to play out front; it just looks different now. We still go to the park sometimes, but we watch our daughter climb while the boys zoom around in their powerchairs. I don’t feel bitter or sad when I see other kids do things my boys cannot do; I’m happy that other children don’t have to deal with this disease. I do, however, have small moments of wondering what it would be like if they didn’t have a degenerative disease. What would that look like?
Then I realize very quickly that I’d have to erase all the good memories too. I’d have to delete all the happy moments that have occurred over the past three years since their diagnosis. We have a new home that we love. We’ve been on two Make-a-Wish trips where we made so many wonderful memories. We’ve become different people with different priorities and perspectives. That part I wouldn’t want to give back, so I don’t wish for a normal life. I just have days where it’s hard not to let the painful parts take over my mind.
Somedays, I forget to focus on the good because I’m human, and that’s okay. I’m allowed a day to wallow here and there as long as I get back up. I don’t wish for a different life. I just don’t want my children to suffer, but I’ve learned that suffering often creates beauty, strength, and character in a person. Just like I am a different person now that I’m a Duchenne mom, my children are too. Without the things they’ve walked through, they wouldn’t be who they are today. A butterfly doesn’t become its true beautiful self until it goes through the process of changing.
Lately, I’ve been working out to get stronger. I want it to be easier for me to lift and care for my boys as they grow. I notice that working out is more about determination than anything else. I think the same can be true of training our minds to get stronger. If I let my thoughts spiral into a what-if mentality, then I’m setting myself up to fail. Ultimately, I don’t want my focus to be on what’s missing; I want it to be what I’m gaining each day.
Without Duchenne, I’d miss out on the intense bond that comes with being my son’s caregiver. There’s a beautiful relationship that develops when someone is completely dependent on you for help. I’d miss the trips, the experiences, and the memories we’ve made since this disease came into our lives. I’d miss the wonderful friends I’ve made along the way. I’d miss the traditions we’ve made, like going to get cheeseburgers after every doctor’s appointment. I’d miss the gratitude I feel for waking up each day and getting to be not just any mom but their mom.
I still have moments where my mind wanders and spirals into dark, toxic places, but thankfully God always helps me climb out of it. Depression may show up, anxiety may take a toll on me, but God never lets go of me. He sustains me and reminds me to keep fighting the good fight. He speaks to me through my friends who encourage me, my family who comfort me, and my children who teach me what it means to love unconditionally. I may have moments and reasons to wish for a normal life, but when it comes down to it – I want my life. I want a life full of love and joy, and even on the hard days, that’s exactly the life I have.