A Mother's Guilt - Finding a Way Through the Darkness | DuchenneXchange

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A Mother’s Guilt – Finding a Way Through the Darkness

A Mother’s Guilt – Finding A Way Through The Darkness
A Mother’s Guilt – Finding A Way Through The Darkness
Kari Denysiuk
Mother

I Am a Carrier

I’m a carrier of many things. I carry my purse and my children, but I’ve also carried a tremendous amount guilt. It was such a heavy burden, it felt as if I carried the entire weight of the world on my shoulders and in a way, I did … my whole world anyway. I am a carrier of Duchenne Muscular Dystrophy.

From as far back as I can remember, I always wanted to become a mom. It was a dream placed in my heart as a young girl. It was my hope for the future and as time went on, I created a vivid picture in my heart and mind of what it would be like when I had children. I pictured the things we’d experience together and the love we’d share. Then, on October 24, 2013, my dream came true. I held my beautiful baby boy in my arms for the very first time. 

Nothing could have prepared me for the emotion I felt as I held him. In that moment, I knew I had discovered a love unlike any other – a love so incredibly powerful, it knows no bounds. A transformational love that shifts your entire perspective on life and all that exists in the world around you. A love that’s hard to describe, but easy to feel. Life was amazing.

Your Son Has Duchenne Muscular Dystrophy

Less than three years later, the unimaginable happened. My husband and I learned that our son, the love of our lives, has a fatal rare disease. The first time either of us heard anything about Duchenne was when the doctor said, “Your son has Duchenne Muscular Dystrophy.” The diagnosis took us by storm and without any warning. We felt completely helpless when we were told there was nothing we could do to protect our son. There was no cure or treatment. The state of shock that proceeded was unbearable. I felt as if I was outside my own body. I remember hearing the doctor’s voice echo through my mind as he continually said, “I am so sorry, I am so sorry.” I began struggling to breathe as I tried to gather my thoughts. I tried to find a word, any word to say, but I was numb and unable to move.

avery lives with duchenne

I Blamed Myself for My Son’s Diagnosis

Duchenne muscular dystrophy (DMD) is a genetic disease, so they tested me as well. The result revealed that I’m a spontaneous carrier of the disease. My DNA contains the same mutation identified in my son’s DNA – a mutation that causes Duchenne. The feelings of despair, guilt, sadness and anger flooded in all over again. As much as they assured me that it was not my fault, I blamed myself for my son’s diagnosis. I blamed myself for everything Duchenne is capable of and how it continually affects his life. How is that even fair? I desperately wished I was the one who’d bear the effects of Duchenne – not him.

The genetic test results affected our lives in other ways as well. I was three months pregnant with our second child at the time. We were offered many options of how to proceed, but to us, I was carrying another miracle and we were going to have and love this child all the same. In a time like this, we had no other choice but to put our trust in God. What else is a mother to do? We were blessed with our daughter, a precious baby girl, in 2017. Life with them is amazing.

denysiuk family

Healing is a Process 

Over the past two years, I’ve been able to work through many aspects of the guilt I was feeling. I know how fortunate I am to have the opportunity to be a mother – their mother. I’ve come to understand that, even through this diagnosis, we are truly blessed. To be clear, I absolutely wish DMD did not exist, but Duchenne does not define who he is.

I’ve thought about how I would feel if I never had the opportunity to meet him. I’ve thought about never seeing him smile or hearing him laugh. I thought about never being able to hug him or hear those sweet words “Mommy, I love you”. I thought about not being able to watch him grow and become the kind gentle soul that I know and love. Those thoughts broke me in a different way because I don’t want to imagine a life not knowing my son. His life matters. His life is worth fighting for.

Allowing guilt to occupy any part of my mind was not serving anyone. My children needed me – the best of me. And to be brutally honest, I needed to remind myself that this wasn’t about me – it was about my son. That is when I decided it was time to start letting go of all the guilt that was weighing me down. I needed to let go of all the things beyond my control and truly let God step in.

I decided to seek help from someone better equipped to help me work through the hurt and broken pieces. Working with a counselor has helped me understand the root of my fruit (look it up, it’s a real thing!). I’ve been able to work through self-limiting beliefs and develop new strategies and coping mechanisms.

It’s Time to Forgive Yourself

I admit there are times I notice feelings of guilt creeping in. When that happens, I try to think about what I would tell someone I love if they were in my situation. I’m sure I would look straight into her eyes and tell her,

“It’s not your fault and it’s time to forgive yourself. Your job as a mother is not to carry guilt, but to lead the way for your children, to fight for them and to guide them so that they can become the person they’re meant to be. Your job is to care for them, to create positive experiences with lasting memories, and to love them unconditionally”. 

 

It hasn’t been easy for me to share these thoughts with the world. The process has left me feeling vulnerable and with a puddle of “water” by my keyboard. BUT I believe it’s important to talk about the guilt that can easily swallow you up if you let it. I hope sharing my story creates more awareness and is able to help anyone experiencing similar feelings, understand that they are not alone.

I am a Mom

I am a carrier. I am a mom. It has been the greatest gift. My children are the reason I wake up every day with purpose, a purpose to make every moment matter. They have redefined my life and shown me what is truly important. I count my lucky stars that I get to be their mom – that I have the opportunity to love and learn from them every day. I’ve learned that everything I’m able to carry with me in my mind, heart and soul are mine to keep. I will always hold tight to the love that is hard to describe, but easy to feel. I know the powerful love that dwells deep within me and I know nothing can ever take that away, not even Duchenne… so, I carry on. 

 

Duchenne carrier mom with children