Duchenne

Welcome

Christi Cazin is the author of Living on Coffee and Prayer.

She’s also proud to be a regular contributor for the DuchenneXchange

It’s very near to her heart to write about her journey as a Duchenne mom. If you’re interested in learning more about her families diagnosis story or journey as a Duchenne parent keep reading, and don’t forget to subscribe.

guest posts

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...

Dear Newly Diagnosed Duchenne Mom

“Be strong,” people keep telling you, but they don’t know how it feels to hear the doctor confirm the diagnosis you feared most. They don’t know that his words keep haunting you like a song you can’t get out of your head. Duchenne Muscular Dystrophy you keep hearing over and over again. They don’t understand the trauma that takes place inside a mother’s heart when she hears that her child has a degenerative disease. They don’t, but I do.

The True Inspiration Behind the Curtain

People are usually caught off guard when they find out that I have two sons with Duchenne muscular dystrophy. They say things like, “I don’t know how you do it?” or “I could never handle that.” They call me brave and strong before they even know me. People compliment me for simply surviving in the world of Duchenne. My faith may be strong, but I assure you, I am weak. The truth is, the ones who are really worthy of these comments are actually behind the curtain. My children are the inspirational characters in our story, not me.

The World of Duchenne

I live in two worlds. One is the world we all live in. Everyone is familiar with how to navigate this world. There are endless maps, books, and guides to help people find their way around. Support is freely available to anyone trying to learn how to thrive here. I still live in this world, but it’s no longer my home. My new home is a far more difficult place to live in...

Teaching My Kids about Duchenne

No parent should ever have to tell their child they have a degenerative disease. There is no parenting book in the world that will prepare a mother to tell her two sons they have Muscular Dystrophy. How do you tell your six and eight-year-old sons that their lives will never be the same again? There is just no possible way to prepare your heart for such a task, but after I got that dreaded call that’s exactly what I had to do...

Duchenne Siblings: A Vital Part of the Hero Team

I witness bravery every single day. I watch my two sons fight a degenerative muscle disease called Duchenne. I watch them struggle to do simple things that most people take for granted. I could go on and on about how courageous my boys are. I could write a novel about how much they inspire me, and someday I will, but this is not about them. This is about the other hero in my home who inspires me, my daughter. This is about all the siblings out there that show the rest of the world how to treat someone with special needs. This is about them. This is about their impact, and the light they bring to this world.