The World of Duchenne

I live in two worlds.

One is the world we all live in. Everyone is familiar with how to navigate this world. There are endless maps, books, and guides to help people find their way around. Support is freely available to anyone trying to learn how to thrive here. I still live in this world, but it’s no longer my home.

My new home is a far more difficult place to live in. Very few people are familiar with this world. I never expected to live here, and sometimes I feel lost trying to find my way. There’s much less support available to those that live here. I didn’t enter this world by choice, but here I must remain, in the world of Duchenne.

Finding support as a Duchenne parent is hard, but essential to our sanity. Very few people walk this path, which makes this journey lonely at times. Few people understand what it’s like to have a child with a degenerative disease. There are sleepless nights, constant appointments and endless worries here. There is something extremely isolating about this life. Every day I’m surrounded by parents and children from the other world. A world where physical strength is exalted. A world where weekends are full of sports practices and birthday party invites to trampoline parks. Constant reminders of things my boys will never be able to do in a traditional way. Constant reminders that we live in a different world now.

After my sons were diagnosed, I was put in touch with another Duchenne mother. I was relieved to talk to someone who understood what I was going through. I was even more relieved that she didn’t overwhelm me with intimidating medical information. She just listened. I didn’t have to explain how lost and scared I felt; she just knew. I didn’t have to tell her that my heart felt shattered and broken. I didn’t have to explain to her how alone I felt walking this new path because she’d already walked it. She was proof that I would eventually find my way around this new world. Her wisdom was just what I needed and I clung to her words like a warm blanket.

In my nine years as a mother, I’ve learned that every parent is different. What may help me, might not be what another parent needs to hear. It’s tricky to find the right words or actions to support any parent, especially a Duchenne parent. One thing I think all parents can agree on is that we need kindness above all.

Supporting someone who lives in my world is not about grand gestures. It can be as simple as choosing a restaurant that’s accessible for the next family function. Last Easter, my mother-in-law hid my sons’ eggs at eye level so they could participate in the egg hunt without the risk of falling down trying to pick them up. It was such a simple act, but it meant the world to me. Anytime I see someone trying to view life through my sons’ eyes, I feel such tremendous relief to have another advocate in our corner. People often think small acts of kindness don’t make a big impact, but to those who live in my world, they make all the difference.

Kindness sounds simple enough, but it’s not as prevalent as it should be. When my oldest son was in first grade, he came home visibly upset one day. My heart sunk when he told me that a boy pushed him down at recess. We knew he struggled to keep up with his friends on the playground, but we didn’t know about his diagnosis yet. It broke my heart to hear someone was mean to my sweet boy. I didn’t know what to say… until I heard the rest of the story.

After the boy pushed him, it understandably caught him off guard and he fell. He sat for a second after hitting the ground. When he looked up he saw two of his friends with outstretched arms waiting to help him. “Leave him alone,” they shouted to the bully as they helped him to his feet. As I held back tears myself, I hugged him. I encouraged him to remember the kindness of his friends, instead of the mean spirited behavior of the bully. I told him to focus on the good part of the story.

I could sit here and describe all the negative things that have happened to us, but I don’t want to focus on those parts of our story. I could speak of all the horrible incidents of bullying and cruelty I’ve heard other Duchenne parents have faced in their lives, but I don’t want to. They say kindness is contagious, so that is what I choose to spread.

It’s the beautiful moments tucked between the hard ones that help me survive this world I now call home. I don’t focus on the insensitive comments we hear, I focus on the kind moments. I focus on the strangers that hold doors open for us when there’s no handicap button. I focus on the amazing family that left anonymous gifts on our doorstep that first Christmas after our boys’ diagnosis. I focus on the little boy who passed us in a hotel and when he saw my son in his wheelchair said, “I hope you feel better.”

I focus on the people who show up for us, even when it’s hard. The friends that check on us, the family that advocates for us, and the people who take the time to ask about our boys; they are the people who help us survive this world. When my best friend drops everything to just listen to me cry, I feel loved. When my new friend drives across town to bring me coffee and keep me company, I feel supported.

My mom has been a huge support to me. She’s been at my side since day one. If I need to cry, she cries with me. If I need encouragement, we pray together. If I need a break, she drops everything to come over. She doesn’t tell me how to feel, she just shows up to be whatever I need. And when I think I can’t handle the next hurdle; she reminds me that my strength lies in God’s hands. She is the definition of unconditional love and support. She is, as my three-year-old daughter calls her, “our helper.”

I joined a women’s Bible study recently. Only a few of the ladies there knew about my boys. I figured I could use all the support I could get, so when the lesson ended, I shared my story. My voice shook as I spoke, but when I looked up I saw something beautiful. As I gazed around the room, I couldn’t help but notice almost all of the women had tears in their eyes.

As I said goodbye to my new friends that night, they all had such encouraging things to say. Encouragement and kind words were spoken one by one, as I headed out the door. The final one to hug me was my friend’s mom. I’d only met her once before, but I remembered her big, bright personality. Based on her extroverted nature, I expected her to have a lot to say, but she didn’t. “I’m not even going to say anything. I’m just going to hug you,” she said as she hugged me tightly.

What those women so effortlessly showed me that night was empathy. No one told me how to feel or what to do, they just let me share my heart. Empathy can be shown in so many ways. It is shown by listening or offering affection. It’s about sharing in someone else’s joys and sorrows. It’s something so easy to show and often doesn’t even require a single word, yet its impact is powerful. Empathy is about giving someone a shoulder to cry on, an ear to vent to and a hand to hold. Until you’ve walked a difficult and lonely path, you’ll never truly understand the power of empathy.

The best way to support someone who lives in the world of Duchenne is to empathize. Learn a bit about this world. Seek to better understand what it’s like to live here. If you try, you’ll gain valuable insight on how to support someone walking my path. Imagine what it must feel like to watch your child struggle to do things that other kids do without any effort at all.

You don’t need to live here in order to show kindness to those that do. You don’t need a map or a medical degree. There’s no need to have an eloquent speech prepared. All you need is the ability to show love and kindness. If you’ve never walked in my shoes, don’t pretend to understand my steps, just walk beside me. The world of Duchenne may not be your home, but it’s mine and it’s so much harder to navigate alone.