welcome to DuchenneXchange

- a positively charged Duchenne muscular dystrophy community.
  • join today!
rareBlog

Dear Duchenne

Dear Duchenne

Dear Duchenne,

It’s been less than two years since you entered our lives, but the damage you’ve caused is devastating. You came without warning and completely flipped our lives upside down. You took our typical care-free days and turned them into days of worry, fear, and stress. I never imagined I’d have to watch my two sons weaken over time, but because of you, that’s exactly what I’m forced to endure.

Duchenne, you have no idea how much you’ve changed our lives since diagnosis day. It started with a simple blood test and ended with a phone call that brought me to my knees. I cried out to God, begging Him to heal my boys. I begged God to take you out of our lives, but sadly you’re still with us. It’s taken me a long time to accept that fact.

It’s all because of you, Duchenne, that I’m forced to watch my boys struggle to do things that most people take for granted every single day. While other boys climb trees, my boys can no longer climb stairs. While other boys play sports, my boys are unable to put their shoes on by themselves. Duchenne, you’ve changed everything, and I hate that you have stolen so much from us.

You’ve Taken So Much From Us

My sweet boys can’t do so many things because of you. They fall often and tire so easily. They’ve endured multiple blood draws and tests that most kids will never have to experience. When they fall, we can’t just slap a bandaid on them, we have to monitor them for breaks that could take away their ability to walk forever. We have to look for signs of fat embolisms that could take their lives.

Every day we stretch them in hopes of prolonging their ability to walk and avoiding contractures. We diligently try to prevent illnesses because anything respiratory can be life-threatening for our boys. Duchenne, because of you, everything feels like a battle.

Two years ago, our boys could still do everything the other kids on the playground could do, just a little slower. They could still run around and play without falling. Now they need wheelchairs just to go to the grocery store.

They weren’t on multiple heart medications before you came into our lives. They didn’t need help getting dressed, bathing, or getting up from the floor. We didn’t even know your name. Two years ago, our lives were like everyone else’s, but not anymore.

Some days I can’t help but look at my beautiful children and weep. Some days my husband struggles to bear the weight of it all. Some days my boys get frustrated that everything has to be so darn hard for them. Some days my daughter wonders why her brothers fall down so much. Some days we feel defeated by you, Duchenne.

We Were Given Even More

Thankfully what follows the bad days are the days that define us, the good ones. Days where we choose gratitude over pain. Days full of laughter, love, and moments that take our breath away. Days where our children completely blow us away with their awe-inspiring words.

Words like…
“This is just how God made me.”
“There’s still plenty to do in a wheelchair.”
“Mama, I’m fine, don’t worry.”
“In Heaven, I won’t have a muscle disorder, so I’ll be able to run super fast.”

It took me a while to stop being angry at you, Duchenne. It was difficult, but I decided to start looking for the good things you’ve brought into our lives. We chose to homeschool because of the difficulties you bring to our daily lives, and we truly love how much it’s simplified our days. We moved into a one-story home that finally feels like home and has made life so much easier. Because of Duchenne, we’ve been on two Make-a-Wish trips. Both were truly incredible, once in a lifetime experiences.

“When we are no longer able to change a situation, we are challenged to change ourselves.”
Viktor Frankl, Man’s Search for Meaning

Because of you, we are different people now. We’ve learned to view our lives as an honor. We’ve learned to appreciate the little things. We treasure the deep conversations we’ve had because of the diagnosis. Now, we cherish every hug and every laugh.

Because of you, my marriage is stronger. We’ve learned to lift each other up whenever we fall. We’ve learned that God’s plan is to bring good out of life’s most difficult trials, whether we understand those plans or not. My faith is stronger because of you Duchenne.

Because of you, I read one more bedtime story, choose my battles wisely, and never say no to another cuddle. I never take for granted the moments that we laugh together, play together, and pray together as a family. Because of you, I’m a better mom.

I wouldn’t wish your presence on my worst enemy, but I cling to the perspective that’s been given to us because of the way you’ve affected our lives. God only knows why you’re part of our story, and I don’t know if I’ll ever be glad that it had to be this way, but I will always be grateful for my children exactly as they are.

Duchenne, you’ve taken so much from us, but you’ve also brought us something incredibly valuable that I don’t take lightly. You’ve helped us find our divine purpose. We have the honor of caring for the most incredible children.

Through the storm you brought, we found a rainbow.
Through the fear you sent our way, we found renewed faith.
Through the hurt, the pain, and the suffering, we found the most important thing of all – HOPE.

“You intended to harm me, but God intended it for good…”
Genesis 50:20 NIV