Diagnosed with Duchenne
I remember the day I became a mother like it was yesterday. I remember vividly how it felt to hold my precious newborn for the first time. I remember the tiny fingers and tiny toes. I can almost smell that heavenly newborn skin aroma when I think about it. Oh, how I love that smell.
I love being a mom. It’s not my only role, but it’s by far my favorite. The day I became a mother will forever stand out in my mind, because it transformed me in an instant, but there’s another day that changed me too. It was a day I became a different mother and I can recall it just as vividly. It changed me into a mother I never expected to be, and the mom I am today.
On May 7th 2018, my phone rang. I was expecting this call, but expectations never prepare you for moments like this. I could tell from the sound of the doctor’s voice it was the moment I was dreading. My two sons and young daughter (8, 6 and 2 at the time) were playing happily in the next room. My hands shook as I held the phone to my ear. Then I heard the words I had feared for weeks, “I’m so sorry, but it looks like both of your sons have muscular dystrophy.” As I hung up the phone, I collapsed to the floor crying heavy tears that stung as they fell.
I felt blindsided. We had no family history, no major symptoms, and no warning at all. Only now when I look back do I see the symptoms. They were minor, but they were there. I just didn’t want to see them.
Both our sons met all their typical milestones. They weren’t born premature. They crawled and walked at a typical age, and besides a bit of speech therapy, they developed normally. They could run, climb, and play just like the other kids on the playground. They just did it a bit slower. We assumed it was normal, considering not every child is athletic.
It wasn’t until our oldest son was about seven, that we noticed he seemed to be struggling with stairs. We’d always lived in two-story homes and he always climbed the stairs by himself, but suddenly it seemed harder for him. He started to pull himself up with the banister.
One day when our oldest was almost eight he was standing in the kitchen. He suddenly collapsed to the floor out of nowhere. My husband and I both saw it happen and looked at each other puzzled. There was something off about the way he fell. He didn’t trip or stumble, his legs just seemed to buckle at the knee. I convinced myself that physical therapy would be the answer we were searching for. It has to be, I thought, and scheduled an appointment with his pediatrician.
My husband went with me to the appointment. We told the doctor about the stairs and the strange fall. Looking over his chart, he calmed our fears assuring us that his growth was normal. We breathed a sigh of relief, and started to leave, but he stopped us. He asked our son to do one more thing before we left. He asked him to simply sit down on the floor and get back up. Using his hands to help him to his knees, our son stood back up. I figured he passed this strange test, but then I looked at the doctor’s face. I saw fear in his eyes.
“What is the worst case scenario?” we asked the doctor boldly. That’s when we heard those life altering words for the very first time. “Muscular dystrophy,” he said. Instead of leaving with a referral for physical therapy like we expected, we left with a referral for BOTH of our sons’ to see a neurologist.The date was April 19th and it was the start of it all. We’ve never been the same since.
When we got home my husband watched a video that showed the progression of the disease from birth. From that moment on, he just knew deep in his gut. Before the diagnosis, before the genetic test, and before the phone call he just knew. We held each other praying through our tears. In the sixteen years I’ve known my husband, I’ve never seen him cry like he did that night.
Somehow I had this unexplainable peace. I felt this fierce determination to trust God. Only God could’ve given me that kind of peace in a moment like that. If this was part of our story, I knew God would guide our steps. That night we held our children tighter than ever before.
As I laid there trying to sleep, my mind raced. I stayed up reading about muscular dystrophy on the internet. As I read words like degenerative and fatal, my heart shattered into a million pieces. It was like the wind got knocked out of me and never came back. I didn’t sleep at all that night.
As the days passed, I continued to feel God’s presence through the pain. My eight-year-old came to me one day, before the official Duchenne diagnosis, and asked why he needed tests and blood work. I calmly told him that the doctor wanted to rule out muscle disorders. I expected him to worry or ask difficult questions, but he didn’t. He thought quietly for a minute, looked up at me with his big brown eyes and confidently said, “Mommy, this is just the way God made me.”
It’s been a little over a year since that life-changing call and our lives are dramatically different than they were. Today we live in a one story home with multiple wheelchairs in our entryway, and medications in our kitchen cabinet. Our children are now homeschooled. Everything is different. We have a new life and a completely new perspective on life.
This diagnosis has changed me in so many ways. It didn’t make me a perfect mom, but it made me a better one. I’m more patient, loving and gentle. Trivial things don’t matter to me anymore. My faith has grown by leaps and bounds, and I love my children with a fire deeper than ever before. The pain is still there, but so is the beauty.
Every storm brings a rainbow with it. That’s how I’d describe our new life. It started with a dark cloud named Duchenne, but once the skies cleared we saw a beautiful rainbow shining through. It made us appreciate ordinary moments, and cherish every single day. It gave us gratitude and hope. This disease will continue to bring us storms in this life, but I’m confident that God will keep letting beauty shine through too. I may not understand the purpose of all these storms, but I know that we will grow because of them.
I never expected a rare disease to enter our lives, but now that it has our only choice is to accept it with grace. What I did expect out of life was joy, laughter and unfailing love, and I still have all that. This life won’t be easy, but with God by our side we will keep looking for the rainbow after the storm. I think my son said it best when he said, “At least we get to go through it together.”