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.
Every day is full of beautiful moments of joy and gratitude, but every day is also full of moments of sorrow and fear. Every Duchenne parent is familiar with this painful paradox. It’s just a part of what it feels like to have a child with a degenerative disease. We rejoice with them daily, but we also mourn with them through the difficulties they face. Sometimes at the exact same time.
My children inspire me on a daily basis. They make me want to be a better person. They inspire me with their words, their actions, and their amazing ability to fight a disease like Duchenne with such grace. I work hard every day to serve them with love, humility, and compassion. I want my children to feel loved unconditionally. I never want them to feel like their needs are a burden to me. I strive to have a servant’s heart.
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.
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.
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.