‘I barely found words to reply. Hot tears streamed down my face. I hung up the phone and dropped to the ground.’: Mom shares how life changed with sons’ Duchenne diagnoses

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“On May 7th, 2018, the neurologist called my cell phone around seven at night. As I sat down slowly, I listened intently to the doctor’s words. I felt sweaty, sick, and scared. My heart began to flutter painfully. He spoke quickly, but I barely found words to reply. Hot tears streamed down my face. I hung up the phone and dropped to the ground. I sobbed like I never had before. This is what it feels like to instantly know your life will never be the same. This was the day my sons were diagnosed with muscular dystrophy.

Something stunning about that night hangs in my mind. When I stopped crying and opened my bedroom door, I found my three beautiful children playing happily together. Giggles, laughs, and silly voices filled the air as I struggled to continue standing. They were still my beautiful happy children, just as they had always been. My life may be different, but their ability to laugh had not been taken. Their joy was still there.

Brothers with Duchenne sit next to sister for sibling picture.
Courtesy of Christi Cazin

The next day we were admitted to the hospital for tests. I watched my innocent little boys endure needles, tests, and IVs like tiny superheroes. The nurses showered them with gifts and told them what amazing boys they were. ‘They really are,’ we’d smile.

I look back on those days in disbelief. It almost feels like someone else’s story, not ours. It seems like one day I will just wake up and go back to the life I had before. The life where everything felt perfect; and the one where I got upset over trivial things like bills, traffic, and a cluttered house. Oh, what I’d give to worry about things like that again.

To my surprise, life kept going. I remember wondering how the world could just keep turning like nothing had happened. Don’t people know that our life would never be the same? Don’t they know that just trying to catch my breath is now an act of God? Nothing is the same and nothing will ever be the same. Along with the pain however, came something beautifully absent from a life without suffering. God gave us the gift of perspective.

All of a sudden, very little bothered us or mattered to us anymore, and just about everything seemed trivial. Our love for each other felt deeper. Our children mattered, our family and friends mattered, and unshakable faith mattered, but a messy home, a parking ticket, a silly argument, and a spill on the floor failed to matter at all anymore.

Duchenne parents cuddle on the couch with their two sons with Duchenne and their daughter
Courtesy of Christi Cazin

Perspective always comes at a cost, but its presence is truly breathtaking. I pray as time passes we can keep the beautiful gift of perspective, even when pain is present too. I pray God will help us find joy each and every day, and so far He has.

One of my favorite Bible stories is found in the book of Esther. She becomes queen and saves her people from an awful fate. It’s a truly beautiful story about God’s ability to use ordinary people like you and I to do extraordinary things. After our boys were diagnosed, I couldn’t help but think about this story. It made me think about my own purpose.

I’ve always felt my children were given to me, but I’ve now realized I was given to them. God knew exactly what He was doing when He created me, and when He created them. My story is not that of a helpless victim. Quite the opposite in fact, I am the daughter of a king. I’m called to a higher purpose. My purpose may not be to run a country or to save lives like Esther did, but it’s amazing nonetheless. My purpose is to be my children’s mother, caretaker, and their ultimate cheerleader. My purpose is them.

‘Perhaps you were created for such a time as this.’ Esther 4:14”

Couple takes family picture with three children sitting on their bed.
Courtesy of Christi Cazin

This story was submitted to Love What Matters  by Christi Cazin of Mama Needs More Coffee. You can follow her journey on  InstagramFacebook, YouTube, and her website. You can also purchase her book on Amazon. And you can learn more about Duchenne Muscular Dystrophy hereSubmit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more from Christi here:

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‘When we got our mobility van, I felt intense gratitude, but also overwhelming anxiety. Every day is a painful paradox.’: Special needs mom shares dealing with complex emotions

‘There’s so much I wish others knew. So many incorrect assumptions make life even harder for someone like me.’: Special needs mom clears up biggest misconceptions

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