The Weight I Carry – Confessions of a Carrier

I thought I was prepared for the results. For months I waited and worried about that call. I tried to prepare myself as best I could. I expected it, and yet the reality of hearing those words hurt much more than I anticipated. Feelings of shame, guilt, and fear came rushing over me like a sudden wave the moment I heard those four words. Spoken so bluntly from the other end of the phone were the results I’d waited to hear for over a year. “You are a carrier,” he said.

Suddenly he was asking me about my own muscular symptoms and recommending I get regular tests done on my heart. Suddenly we were discussing the possibility of my sweet young daughter being a carrier too, and just like that, all the work I’d put in to prepare myself for this moment failed. Emotions took over and my prior expectations didn’t matter anymore. If Duchenne has taught me anything, it’s that emotions are not optional. They demand to be dealt with whether we want to feel them or not.

I suppose I shouldn’t have been shocked, but I was. Just eighteen months prior, our boys were being tested for Duchenne. They weren’t even diagnosed until they were six and eight years old. We didn’t see it coming, not even a little. No family history and no reason at all to believe they had a degenerative disease. The amount of shock we felt that day was indescribable, and hearing that I had passed it to them seemed to open up that wound all over again.

“Do you plan to have more children?” the doctor asked. We had already decided to be done with our family before Duchenne entered our lives, but the question still hurt. I felt like I was in trouble, like I should have known my own genetic makeup before choosing to have children. It wasn’t my fault that I was a carrier. I knew that deep down, but feelings of guilt tormented me nonetheless. As silly as it sounds, I felt like less of a woman.

Endless “what if” questions kept racing through my head as I struggled to process the news. What if my husband wishes he’d married someone else? Someone who could have children without a genetic disease. What if he looks at me differently now? If anything, I think the news made him cherish me more, but useless thoughts like this continued to taunt me. He assured me daily that he’d choose me to be his wife over and over again, but my insecurity was taking over. I felt like everywhere I went, the words “carrier” were written on my forehead for all to see.

I would watch my boys struggle to get up from the floor or climb onto the couch and leave the room in tears. I felt responsible for their pain. I began to wallow in pointless thoughts like this for a while. It was exhausting. As someone who struggles with anxiety and depression, this is what we call a trigger. The news caused my depression to worsen until I realized something crucial.

Every time I sat dwelling on my own painful circumstances or feeling sorry for myself, it was like I was subconsciously wishing for a different life. Every time I dreamed of a life without Duchenne, I was unintentionally imagining a life with different children. Suddenly I was grateful that I didn’t know I was a carrier until all of my children were born. What if we chose not to have kids? I couldn’t even imagine a world without them in it. I love my life and I’d choose these three children of mine over and over again, no matter what.

Underneath the hardships we face lies a beautiful life. A life full of joy, laughter, and three inspiring children who make me who I am. I believe that simple thought helped me move forward and heal. It allowed me to shake off all those feelings of guilt and shame and replace them with acceptance. I realized that being a carrier is only a small part of me, just like Duchenne is only a small part of my boys. It’s not who they are, and if the only way I get to be their mother is in the shadow of Duchenne, then I gladly accept.

God has a plan for our lives that is greater than my finite mind can fathom right now. Duchenne may cause us pain and suffering, but it also allows us to see life through a different lens. We see love, joy, and beauty in unexpected places because of this disease.

I would gladly erase this disease from existence if I could. I’d walk through fire if it meant my boys could be spared from the effects of this disease. I’d take it from them in a heartbeat if I could, but I can’t. I can’t fix it, and I can’t change it. All I can do is make the most out of life. I can live with intention. I can choose to view this life as an honor because, ultimately, that’s exactly what it is.

I still have days where I struggle to overcome useless thoughts of guilt and fear, but I know how to move past them now. I’ve learned that emotions have a purpose in our lives, and we shouldn’t ignore their presence. They help us heal and become who we are meant to be. I can’t change the fact that I’m a carrier, but I can surely change the way I carry it with me each day, and I refuse to let it weigh me down.