Being a parent to a child with Duchenne is something I wish more people understood. There are so many misconceptions out there that make life harder for families like mine. Most people around me are loving, supportive, and caring, and I am so grateful for them. But sometimes, I wish the rest of the world could understand just a little bit more.
If you don’t understand Duchenne, you won’t truly understand me.
My life isn’t typical. Duchenne is a huge part of it. If someone close to me doesn’t take a little time to learn about my son’s disease, it’s hard for me to open up. I don’t expect anyone to know every medical detail or research term. I just need a basic understanding of how the disease progresses. That small knowledge makes it easier for me to be myself around someone.
I’m not judging anyone.
Sometimes, friends or family will start sharing something about their lives and stop mid-sentence, worried it sounds trivial to me. I just smile. I know my life is hard, and I would understand if someone compared their life to mine in a way that felt ignorant, but most of the time, that’s not the case. I want to listen to you vent. I want to support you, just like you support me. And I get upset over small things too; we’re all human. We all have struggles, and no one should feel ashamed of them.
You don’t have to walk on eggshells around me.
I know it can feel awkward when you talk about taking your kids to the park or going hiking. I promise, I won’t cry or feel offended. I already know the world is different for us. You’re not reminding me of my child’s disease; it’s always on my mind. I am not upset by your stories. You can be yourself around me.
If I open up to you, it means a lot.
It’s not easy for me to talk about my struggles. My days are full of both joy and sorrow. So if I share my challenges with you, it means I trust you. It means I don’t feel judged. It’s a compliment when I can be vulnerable with someone, because I can’t do it with just anyone.
There are no perfect words.
Some of my friends worry they might say the wrong thing when I open up. I understand, and honestly, I think it’s sweet that they care. There really aren’t perfect words to comfort someone who is hurting. What matters is that you’re there. Offer love, friendship, and understanding. Show that they’re not alone. That’s all they need.
Don’t tell me how to feel.
The worst thing you could do is tell me how I should feel. Even other Duchenne parents feel differently at different times. We all handle things in our own way. What I hope for is that my friends listen with empathy, even when I’m struggling to love myself. One of my favorite quotes says it perfectly: “When you can’t look at the bright side, I will sit with you in the dark.” To the friends who know me beyond my smile, who share my pain and support me, thank you. Your presence means more to me than you will ever know
