I’m That Mom

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.

I understand; I used to have one of those moms to tell people about too. Did you hear about “so and so”? Did you hear about their diagnosis, their accident, their loss? I’d read their story and pray for them, cry for them, but deep down, I’d feel relieved that I didn’t have to face what they were facing. I felt so sorry for that family that was facing such difficult circumstances, and then my story became like their story, and everything changed.

I remember talking to other moms at school before the diagnosis. We’d talk about school activities, sports, milestones, and hobbies. Fun topics would lead our conversations. We didn’t talk about rare diseases. There was no talk of muscle deterioration or clinical trials. We didn’t talk about life expectancies or the latest Duchenne research. My life was simple, but not anymore. Now I’m a Duchenne mom, and those topics flood my mind rapidly. As other moms talk about their hopes and dreams for the future, I hold back tears and cling to a different kind of hope. I hope for a cure. I pray for a future without fear. I pray fervently for as many days with my children as I can get.

Sometimes I feel like I have a hard time relating to normalcy. Some days I feel like I’m from a different planet. My friends and family are phenomenal at listening to me, supporting me, and loving me exactly where I am on this journey, but I know they feel sorry for me. I feel sorry for myself sometimes. My life is hard. My reality is difficult to fathom, let alone walk through. My future is uncertain and full of unknowns. There are times when I try to relate to conversations in my own way, but when I start to speak about my circumstances, I swear I can feel the air drain out of the room. I don’t mean to bring anyone down, it’s just my life – it’s all I know.

Please don’t misunderstand me; if my friends talk to me about their child’s sports practice, I’m happy to listen and show my support, because that’s what my friends do for me. I am never offended by someone talking about their children’s interests or successes, even if I can’t relate. Does it hurt when I picture another child running to second base while their parents cheer from the stands while my boys’ muscles are slowly deteriorating? Of course, but it has nothing to do with my joy for their child’s moment. I want to be a friend that encourages them because that’s what my friends do for me without fail. I never want my loved ones to walk on eggshells to talk to me. My moments of grief are always secondary to their moments of joy.

To be honest, my boys were never interested in sports anyway, even before the diagnosis. Of course, my daughter can still play any sport she wants, but that doesn’t replace the feelings of grief for what my boys cannot do.

The issue is never the thought of sports or physical activities that brings tears to my eyes, it’s the toxic habit of comparison. Comparing your life to someone else’s will only set you up to feel bitter, which I never want to be. If I ever feel that way, I remind myself of the thousands of moments of joy in my life. I remind myself that God chose me to be a different kind of mother, and I want to rise to my calling, not spend my time wallowing in what could’ve been.

My children are exactly the way they’re supposed to be. They are the bravest, kindest, funniest, and most loving little souls I’ve ever known. They don’t complain and wallow in self-pity; they smile and play. They live life the only way they know how, with all their hearts. They lift me up when I’m down, and they make my life so very full. It is truly an honor to be their mom, even if I am “that mom.”

I’m that mom who lives two lives. I rejoice for the beautiful moments we are blessed with, but I also cry for the things Duchenne steals from us daily. This disease has taken a piece of my heart, a part of my sanity, and some of my hope for the future, but it’s also given me something most people will never have. It’s given me the ability to cherish moments that I otherwise would’ve missed. If pain is God’s megaphone, then I am honored to be able to hear Him louder than I did before Duchenne entered my world.

Being that mom hurts, it stings, and it causes me deep pain sometimes, but it’s also full of incredible moments. It allows me to sift through the chaos of life and focus on the important stuff. It gives me a stunning perspective on life. It’s given me a love for my children that I believe surpasses what’s humanly possible. I may be the mom I never thought I’d be, but I’m grateful for the gifts that come along with it. I’m proud to be who I am. So, the next time you hear my story or one like it, mourn for a moment, but then don’t forget to rejoice too. Don’t forget to celebrate the beauty that is most definitely hidden behind the brokenness.