As a proud contributor for the DuchenneXchange blog, Christi is passionate about advocating for her children, and everyone who is affected by Duchenne Muscular Dystrophy.
To learn more about what Duchenne is, read here.
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 and journey as a Duchenne parent keep reading, and please don’t forget to subscribe.
Christi Cazin is also the author of Living on Coffee and Prayer.
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...
“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.
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 real gifts are not the presents we buy and wrap anyway. The true gifts are the moments that you’ll never get back. It’s those early morning cuddles that your children will remember. It’s the frosting covered table after baking cookies that will stand out in their minds over the years to come. It’s the night you all stayed up late to watch Christmas movies together that will bring a smile to their faces. It’s the smell of hot cocoa, the sound of laughter, and the simple family traditions that they’ll talk about one day.
My marriage is a fairy tale. Not the kind you read about in children’s storybooks where all the hard stuff only happens before the happily ever after, but the real kind. The kind with ups and downs, joys and sorrows, and is much more realistic than the storybooks describe. My prince charming doesn’t own a white horse, my carriage is a giant mobility van, and the only maid in our castle is me, but our lives are still beautiful.
Duchenne, you have no idea how much you’ve changed our lives since diagnosis day. It started with a simple blood test and ended with a phone call that brought me to my knees. I cried out to God, begging Him to heal my boys. I begged God to take you out of our lives, but sadly you’re still with us. It’s taken me a long time to accept that fact.
I know the threat of this virus is real, and some of us are terrified for the safety of our loved ones. I know this virus is incredibly contagious, but I’ve learned that fear is even more infectious. Fear is what brings panic and mass hysteria. Fear is what drives us apart. Fear is what causes us to honk at each other in the store parking lot. Fear is what makes us try to push ahead of one another in line.
There is a beautiful quote by Mr. Rogers that comforts me in hard times. “When I was a boy, and I would see scary things in the news, my mother would say to me, “Look for the helpers. You will always find people who are helping.” God is all around us, you just need to know where to look. Look for Him in the courage of the doctors and nurses. Look for the helpers, look for the sunshine, look for the kind acts of others. Look up, and you will see so much more than suffering. Where is God during our trials? Simple. He is everywhere.
I don’t just want to say I love you, I want to show it. I want my children to feel like a blessing to us, not a responsibility. It is my honor to care for them, and I always want to make sure my actions echo that sentiment. After all, “love is a verb, and without action, it is merely a word.”
There is no parenting manual for Duchenne parents. There are no perfect words to say that will take away the heavy emotions that come with this disease. All we can do is walk alongside them at their pace.
When my two sons were diagnosed with Duchenne, I was already grieving the loss of my brother. I was drowning in depression and despair. I didn’t feel like I had a choice when it came to my thoughts. My mind would race in circles from one fearful thought to the next. I felt like the walls were caving in around me. I thought I’d never be able to take a deep breath again. I thought I was weak and broken, but since then, I’ve realized that my weakness is what makes me strong. My brokenness is what makes me brave. There is beauty in our broken places.
Without the scars that come with Duchenne, I wouldn’t be who I am today. It’s like Robert Frost once said, “Two roads diverged in a wood and I – I took the one less traveled by, and that has made all the difference.” I didn’t plan to take such a long, bumpy, and treacherous road. I never expected my life to follow a path like this, but now that it has, I have no choice but to embrace it. I’ve seen trauma, tears, and sorrow on this path, but I’ve also seen beautiful scenery along the way.
We all remember that day. Sometimes the very thought of it can bring us to our knees in agony. Other days it simply acts as the line of demarcation, dividing our old life from our new one. Diagnosis Day is a day we never forget because what follows is a completely different way of life. Among the Duchenne community, this day is referred to as D-Day. Most of us have the date etched in our minds like a scar we cannot erase.
I’m not sure he really understands the impact he has on those around him. His light is a gift from God, and I see it shine through him every day. It shines every time he embraces someone in tears, shows gratitude in dark moments, or attempts to help his brother – even though he suffers from the same disease. There’s an old gospel song with lyrics that remind me of my sweet boy. “This little light of mine, I’m gonna let it shine. Let it shine, let it shine, let it shine.”
I’ve learned that a grateful heart does not equate to a constant grateful mood. I always have a heart full of love, gratitude, and appreciation – even on the bad days. When my son stopped walking, I felt such sorrow for him, but I also felt grateful that he didn’t have to worry about falling anymore. I felt compassion, admiration and a kind of love for him that grows with every breathe I take. Along our journey, I’ve realized that all of the hard moments eventually end up leading to beautiful ones.
I’m that mom who lives two lives. I rejoice for the beautiful moments we are blessed with, but I also cry for the things Duchenne steals from us daily. This disease has taken a piece of my heart, a part of my sanity, and some of my hope for the future, but it’s also given me something most people will never have. It’s given me the ability to cherish moments that I otherwise would’ve missed. If pain is God’s megaphone, then I am honored to be able to hear Him louder than I did before Duchenne entered my world.
People often wonder what it’s like to raise two sons with a degenerative disease. It’s a hard question to answer because it feels impossible to live through, let alone explain. There are no words to express how it feels to watch one son weaken and lose his ability to walk, only to have another son following the same pattern right behind him. My boys are only two years apart, and sadly the disease seems to be affecting them both rapidly.
Three years ago, my two sons were diagnosed with Duchenne. I didn’t even know what it was before the doctor mentioned it as a possibility. Then came the official call letting us know that our lives would never be the same. It felt like we were thrown into a raging unfamiliar sea with no idea how to swim. Drowning in emotions, grief, and paperwork, we struggled to adjust to our new life. We were being asked to make decisions about things we knew nothing about. It was overwhelming, to say the least.
I realize now that I handled it the best I could. I was caught off guard. I was anxious about the appointment, and I wasn’t prepared to share my life story with a curious old man. My husband assured me that I handled it fine, and we continued on with our day. But even as we went to dinner to celebrate the good news that the cardiologist gave us, no change is good news, I still kept thinking about his words. Wrong. What’s wrong with him?
Sometimes I feel like that poor little kitten in that famous poster. “Hang in there,” it reads, as the sweet little kitty tries to grasp that tree branch with all its might. Apparently, this poster is supposed to be motivational. I see it more as a reminder of how hard life is, especially as a Duchenne parent. It reminds me how isolating this life can be, and it makes me realize just how important it is to have support from others who truly understand.
Have you ever noticed that when you look back on memories from your past, it’s actually the little things that come to mind first? Looking back on my life, I don’t see a collage of all my big memories. Instead, I see a flash of little things that seemed somewhat ordinary at the time. However, it’s those ordinary moments that turned out to be incredibly memorable.
You have no idea how fast these days go by. Someday you’ll wish you could go back and rock that little baby a bit longer. One day in the not-so-distant future, you will feel guilty for focusing on that never-ending to-do list so much. Little do you know that one day, you will get a phone call that will change everything in an instant. One day the floor will crack beneath you in such a way that nothing will ever be the same again.
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...
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...
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.
Every day I wake up surrounded by moments. Some moments are ordinary, and some are unforgettable. My favorite moments are the ones full of laughter, joy, and unconditional love. I’m not blessed with these beautiful moments because I have a perfect life, or due to a lack of suffering. Quite the opposite, actually, I have plenty of painful circumstances in my life. When people hear my story, they don’t envy me. The reason I have the profound privilege of waking up surrounded by these precious moments is simple, it’s because I’m a parent.
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.
I love it when people ask how we are. I love it when they ask about my kids. I like being able to share what’s really going on in my life, it makes me feel loved. I’m an honest person who has always had trouble hiding my emotions. I’m the type of person that doesn’t know how to be anything but genuine. When someone asks me how I’m doing, I won’t say “fine” if I’m not. I don’t always want to talk about my difficulties, but when I do, it’s crucial I have someone in my life that will listen.
This week my two sons got their very first power chairs. It was a day full of smiles as they raced through the house and tested their chairs’ ability to lift up and down, turn corners, and navigate their bedrooms. My sons are only eight and nine years old, and yet this day is already here because they fatigue so quickly. It was such a blessing to receive these fantastic chairs. They will give my boys more independence and more rest for their muscles throughout the day. It is an absolute blessing in every way, but it’s also incredibly bittersweet.
Someone recently asked me what I do to show intentional gratitude in my life. A question that should’ve been simple was somehow difficult for me to answer. I’ve always considered myself a grateful person. I grew up in a happy home with wonderful parents and siblings. God has blessed me with a life that I’m proud of, full of wonderful memories. I’m married to my best friend, and we have three incredible children together. My life is full of things to be grateful for, yet I couldn’t answer the question.
There’s a quote by Orson Welles that I recite to myself sometimes – “If you want a happy ending, that depends, of course, on where you stop your story.” In the middle of a bad day, I remember that this is not the end of our story. When trauma strikes or transitions arise that break my heart, I remind myself of all the chapters we have left to fill with wonderful memories. Our story is already overflowing with love, courage, joy, and beauty – and it’s not over yet.
I see you cry in the quiet of the night as your worst fears haunt you like a bad dream. I see you put on a smile in an attempt to hide your pain from the world. You feel ashamed, afraid, and misunderstood. I hear you politely answer questions with your usual, “I’m fine.” Some days you are fine, but some days you can’t breathe. You’ve convinced yourself that no one cares how you feel. You think they won’t understand, so you hide it like a shameful secret. You think it makes you weak, but you couldn’t be more wrong.
God tells us that His power is made perfect in our weakness. That means that my weakness is not a fault or a deficiency on my part, it’s a human characteristic. It’s an opportunity to allow God’s power to fill in where I fall short. When I finally stop my cycle of worry, I come to the realization that my strength will come as I need it, not before. That allows me to take a deep breath, focus only on the day in front of me, and carry on with faith.
It’s an honor to care for my children, but I often fear others won’t have the same outlook when it comes to interacting with them. I worry about them being mistreated, bullied, or overlooked because of their disability. I fear they’ll become defined by their limitations when, in reality, they should be defined by their courage. I don’t want people to see their disability as who they are; it is simply a small part of who they are. I want people to see past their wheelchairs and into their hearts.
Two weeks ago, on what felt like an ordinary day, my ten-year-old son took his last steps. We had no idea that day would be one of those “lasts.” The day before he walked to the bathroom, he walked into the kitchen, and he was able to stand by himself. I didn’t know that the next day when I’d attempt to lift him to a standing position, he would buckle in my arms, unable to bear weight on his legs. Just like that, he couldn’t walk anymore. Once again, our lives changed in the blink of an eye. The words “non-ambulatory” flashed through my mind like a neon sign I couldn’t turn off. My son can’t walk; I kept thinking to myself, trying to process the news.
A wise person once said, “In the end, it’s not the years in your life that count. It’s the life in your years.” I can’t guarantee my life won’t include pain, sorrow, and heartache, but I know for sure that it will include wonderful memories. I know, without a doubt, it will be full of endless amounts of love, laughter, and joy. I know that our years will be completely, beautifully, memorably, and utterly full of life.
As a Duchenne parent, there is so much that I wish other people knew. There are so many misconceptions and incorrect assumptions that make life even harder for someone like me. Most people in my life are incredibly loving, supportive, and understanding. Their presence means the world to me, but there are moments I wish I could make things a bit clearer for the rest of the world.
A diagnosis of Duchenne means constantly grieving. You grieve the losses of strength. You grieve the changes that are always taking place, and you grieve the life you expected to have before the disease showed up and stole a part of your soul. Grief just becomes part of life when you have a child with a degenerative disease. Watching your child suffer just changes you in ways that no one else can truly understand unless they’ve walked this path.
The other day I was in the worst mood. Everything trivial felt heavy and exhausting. Laundry, dishes, homeschool, work, cooking, and cleaning piled up and left me weary. I was tired, worn, and just sick of my own thoughts. The dog chewed something; I yelled. Someone made a mess; I sighed like I was trying to let the neighborhood hear me. I cringe thinking about how ungrateful I sound, but it’s true. That day I was whiny, irritated, and full of self-pity. It was one of those days.
I live with one foot in the future. My life is a constant dance between hope and fear. I have the privilege of raising three incredible children, two of which have a degenerative disease. My days are full of joy, but they are also full of the most agonizing kind of pain I’ve ever experienced.
I saw a quote recently that resonated with me in a powerful way. It read, “Listening is an act of love.” What an amazing way to describe it! Listening is not just hearing words that are spoken. It’s an act of beauty, friendship, and love. It’s an intentional attempt to comfort and empathize with another. Listening is a way to understand what someone else is walking through. Listening is the only way to get to know someone else’s story. Unfortunately, in my world, I’ve noticed how rare it is to find people who listen in such a way.
This morning I woke up exhausted. My back was sore from lifting, my eyes were red from lack of sleep, and I had a whole day of parenting and caretaking ahead of me. Some days are like this. Somedays, I’m running on fumes and wondering how I’m going to handle this life I’ve been given. I love the role I’ve been blessed with, but it’s still hard. I’m a mom, a wife, a daughter, and a friend. All of those titles bring me joy, but my life is still really, really hard.