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.
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.
Christmas has always been my favorite holiday. My childhood Christmases were filled with the most wonderful memories. I’d wake up to the smell of bacon and run to the kitchen to hug my mom. Then, I’d eagerly wait by the window for my grandparents to arrive. As soon as they came, we’d beg to open presents, and then have the most amazing breakfast.
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.
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.
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.
“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.
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 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.
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.