The True Inspiration Behind the Curtain
People are usually caught off guard when they find out that I have two sons with Duchenne muscular dystrophy. They say things like, “I don’t know how you do it?” or “I could never handle that.” They call me brave and strong before they even know me. People compliment me for simply surviving in the world of Duchenne. My faith may be strong, but I assure you, I am weak. The truth is, the ones who are really worthy of these comments are actually behind the curtain. My children are the inspirational characters in our story, not me.
Children are far more amazing than they realize. I’m not sure they can even understand how truly inspiring they are. My boys say things constantly that leave me in awe of their strength. I don’t think they have any idea how many people are being affected by their story. They have no clue how many people are lifting them up in prayer on a daily basis. Someday I hope they are able to understand what an impact they’ve made on this world and, most of all, on me.
When someone calls me inspiring, I smile. I politely thank them, but to be honest, I don’t feel inspiring at all. I feel exhausted, afraid, and weak. I’m just trying to follow my little tour guides through this difficult journey. My kids are the ones that have changed the way we live since this diagnosis entered our lives. They are the ones that made us slow down and admire the sunset. They changed the way we hear the sound of laughter. My boys taught us how to be grateful for the simple things in life. They showed us how to cherish ordinary moments instead of rushing through them. They showed us how to let go of trivial things and truly live again. They are the ones that inspire us, not the other way around.
The other day I walked into the bathroom to find my oldest son staring at himself in the mirror. Due to the progression of his disease, he walks with his shoulders back and his belly out, a very common stance for those with Duchenne. “Mom, would I stand up straight if I was normal?” Shocked to hear him imply he wasn’t normal, I wondered how to answer. Yes, he’s different, but it broke my heart to hear him use a phrase like “if I was normal.” I watched him as he turned to the side and looked at his arching back. I held back tears until I saw his face. He didn’t look sad at all.
I answered his question the only way I knew how. “I guess so, buddy, but it’s a normal way to stand when you have Duchenne.” As I tucked him into bed, our conversation continued. “So, will I just keep tipping backward until I can’t walk anymore… like I’m playing Limbo?” He said, laughing. “I don’t think it works like that, buddy. I think your legs will eventually just get too tired to walk anymore,” I said bluntly. After reluctantly saying these very mature words to my nine-year-old son, I tried to change the mood. “But you can still have an amazing life in a wheelchair,” I said, trying to lighten the conversation. Then as all three of my kids do on a daily basis, he said something that took my breath away. “Oh, I know, there’s still plenty to do in a wheelchair.” He said with a smile. I walked away with tears in my eyes in complete awe of his courage.
Every day I wake up and fight to choose joy. It’s a constant battle to focus on faith instead of fear. Some days I cry. Somedays, I struggle to even fathom a future with Duchenne in it, but by the grace of God, I keep fighting. Not because I’m inspiring, but because my kids are. They delight in the simple things that so many of us take for granted. They somehow see a world full of beauty and wonder, not limitations and sorrow. They rarely ever complain about things they can’t do. They just enjoy the things they can do.
Each day I watch my boys struggle to do things that most kids their age do with ease. It feels like every time I look at them, another ability is slowly being ripped away from their innocent grasp. It’s a sight that could easily bring me to a place of fear, bitterness, and pain. And, sometimes I do give in to those emotions, but then I turn and look at my three amazing children. I see them smile. I hear them laugh. I watch them play. They inspire me to stop looking for what our life is lacking and start noticing our endless blessings.
We bought a full-size mobility van recently to accommodate our boys’ needs. It was a tremendous blessing to be able to buy something that makes life easier for us, but it was quite an adjustment for me. I was really nervous about learning to drive it. My first time behind the wheel, it felt like I was piloting a commercial jet. As I sat breathing like I was in labor, I started hearing my children cheering me on in the backseat. “You got this, mama!” “You are doing great, mommy!”
I have so many stories like this. Inspiring stories that show their bravery, acceptance, and love for others. Like the time my boys were in the hospital (at just 6 and 8 years old) and had to get IV’s for the first time. My oldest son volunteered to go first. We could tell it was painful as they struggled to find a vein in his wrist. He held back his tears and walked into his brother’s hospital room next door. “It wasn’t that bad,” he told his little brother proudly to ease his fear.
Or the time my youngest son ended up in the emergency room with a partially severed open fracture, after getting his finger completely slammed into a door. He almost lost his finger that day. Thankfully the doctor was able to stitch it back together and put him in a cast. It was a traumatic experience for all of us, yet on the drive home, the only thing our sweet little boy said was, “Mommy, I’m just grateful I get to keep my finger.”I have way too many stories and conversations like this to fit into one blog post.
I think most parents like myself would agree that our kids are the inspiring ones in our lives. Whenever I see those parents, I’m moved by their strength as they see their children go about living with Duchenne, but deep down, I know their source of strength is not their own. If they are anything like me, their strength comes from above. My strength comes from God, but I believe He uses my children to model true bravery.
I’m not sure we’d be the same people we are today without the presence of pain in our lives. Duchenne is not something I wanted, nor something I’d ever wish on anyone, but its impact on our family has been powerful. Its impact brings a perspective that just can’t be found on a typical life path. My boys are not their disorder, but they are more incredible because of it. They are more loving and more inspiring because of its existence in our lives. They are not inspiring because they have a disease, they are inspiring because they handle their disease with grace and acceptance.
Next time someone calls me inspiring I think I’ll correct them. I’ll reveal the true inspiration behind the curtain. If I appear brave, it’s because my children are brave. If I smile, it’s because they smile. They are the ones that wake up every morning and live life to the fullest, regardless of their limitations. They make me want to be a better person. There’s a quote that I love by Maya Angelou, and it describes my kids perfectly. “Nothing can dim the light that shines from within.” I’ve realized that God gave them a light to shine. As their mother, I get to witness that light every day, and that will always be one of my greatest privileges. It’s that light that inspires the world around them, and nothing, not even Duchenne, can dim it.