Duchenne Siblings: A Vital Part of the Hero Team
I witness bravery every single day. I watch my two sons fight a degenerative muscle disease called Duchenne. I watch them struggle to do simple things that most people take for granted. I could go on and on about how courageous my boys are. I could write a novel about how much they inspire me, and someday I will, but this is not about them. This is about the other hero in my home who inspires me, my daughter. This is about all the siblings out there that show the rest of the world how to treat someone with special needs. This is about them. This is about their impact, and the light they bring to this world.
My daughter may not have a disability, but she fights the same battle. She may not suffer from Duchenne, but that doesn’t mean she isn’t affected by its presence in our home. She’s surrounded by it every day, and as most loved ones know, that’s a very difficult and emotional task. It’s heartbreaking to watch someone you love suffer. It’s painful to watch them struggle to do something that you can do with little to no effort at all. Siblings aren’t exempt from suffering because they don’t share a diagnosis. They are part of the same family; therefore, they’re part of the same fight, and I think it’s important that we recognize them for their bravery too.
When my sons were diagnosed with Duchenne Muscular Dystrophy, I became someone else. As painful as it was, I believe God used that time in my life to transform me into the person I was always meant to be. I believe my daughter will also become whom she’s meant to be as she walks this road. She is already one of the most compassionate human beings I’ve ever known. She’s not just a sister and a daughter; she’s a spirit lifter. She’s a cheerleader, a hand holder, and a nurturer. She picks up toys that her brother’s drop, knowing they can’t bend down safely. She also absolutely insists on helping with their daily stretches, which they find hilarious.
My nine-year-old son fell the other day. Thankfully, he wasn’t hurt, but since he’s no longer able to get up from the floor, my husband rushed over to help. When he got to the dining room, our daughter was already there standing at her brother’s side, trying to help him up. At just four years old, she obviously can’t lift her sixty-pound brother, but that didn’t stop her from trying. I rarely ever see her consider her own needs before attempting to lend a hand. It’s just who she is, and I’m so proud to be her mom.
A few nights ago, she ran into my bedroom and handed me a note. Unbeknownst to her, I was crying. The day before, one of my son’s heart tests revealed some mild progression for the very first time, and I was struggling with the news. When she walked in, I quickly wiped my tears as she proudly handed me a little scrap of paper. One yellow note covered in scribbled pencil marks was all it took to turn my sad tears into happy ones. “Oh, thank you,” I said. “What does it say?” She smiled and said, “It says I love you, and Jesus loves you.” I can only imagine the impact this little girl will have on the world someday if she is already capable of bringing this much joy to our little family.
I don’t think siblings get enough praise for their mighty contribution to their families or to this world. They’re dealing with needs and wants of their own, yet they often push them aside for the sake of their sibling. They attend tedious appointments and therapies too. They sit in waiting rooms, pharmacies, and hospital rooms too. They are part of this special needs hero team as well. They aren’t just cheering on the sidelines; they’re in the battle.
One night I walked into my son’s room to say goodnight and help him into bed. He needs help getting comfortable due to his muscle weakness. I stopped and stood in the doorway when I heard giggling. What I saw took my breath away. I watched as my daughter attempted to lift her brother’s legs one by one into a comfortable position, and cover him with blankets. Then she leaned in and kissed him goodnight. “Night, love you!” She said before rushing off to her other brother’s room. Duchenne may bring painful moments to our lives, but it also brings us moments like this, moments that will stay with me forever.
At the beginning of this diagnosis, I was so focused on the sorrow it would bring to our lives that I failed to see what else would come with it. I didn’t realize it would change us all for the better. The impact Duchenne has on our lives is incredibly heavy, heavier than I can bear sometimes, but the beauty it brings us is even greater. The way it’s transformed each of my children into braver, stronger, kinder, more compassionate human beings is truly incredible.
About a month ago, my son collapsed and couldn’t walk for days. We hoped it was just muscle fatigue, but we feared it was the end of his walking abilities. As you can imagine, it brought out intense emotions in all of us. I came into his room and found him sitting in his power chair quietly. As he sat with his head hanging down, he told me that he felt left out watching his siblings run around and play without him.
I tried to encourage him to join them from his chair, but he just wasn’t ready for a “motivational mom speech” yet. He hadn’t walked in two days, and I honestly wasn’t sure he’d ever be able to again. I walked away when I felt my strength begin to fade. I sat alone in my bedroom, praying through my tears when suddenly I heard all my kids laughing. I rushed out to see what was going on. I found him racing down the hallway in his power chair with none other than his little sister. “I’m gonna beat you!” she laughed.
All weekend she somehow kept him smiling. Over and over, she’d beg him for “rocket ship rides.” She’d climb up on his lap, and he’d proudly recline his power chair all the way back. Then he’d pretend to take her to the moon. That weekend was emotional for all of us. We were grieving what we thought was the loss of his ability to walk. Thankfully after lots of rest, he was able to walk again. That weekend should bring back painful memories, but it actually makes me smile. It makes me remember the laughter, the courage, and the deep love we all showed to each other that weekend. And thanks to my little girl, it’s the power chair “races” and “trips to the moon” that stand out as precious memories.
I know someday, my daughter will endure more than just picking up her brothers’ toys and holding their hands for blood draws. I know that her future may hold trials. I know she will have to overcome obstacles and heavy emotions because of the presence of this disease in our lives. She will have her own dreams to pursue and her own life to live, all while watching her brothers fight for their lives. That’s no easy mission, but I believe she was created for it. She was created with a divine purpose, and she was born to fight, just like her brothers. She is my beautiful, brave little warrior, and she inspires me every single day.
If you have a sibling with a disability, please listen closely. You are a fighter, a warrior, and a vital part of the hero team. You are inspiring the world around you. You show this world how to treat people that are different. Your bravery is beautiful. Your courage is stunning. Your presence in your family is cherished, valued, and more appreciated than you’ll ever know. You’re not hidden behind the needs of your sibling, quite the opposite actually. Just like my daughter, you shine. You bring light to the darkness. Never doubt that your impact on this world is nothing less than breathtaking.