Sometimes I feel like a fraud. People tell me I’m strong and brave. They praise me and say I’m doing such a great job handling the circumstances life has given us. Even other Duchenne families reach out to me and tell me how inspiring I am to them. I feel honored by their words, but I also feel like telling them how much I struggle too.
Most days I don’t feel like much of an inspiration. Some days I feel strong and ready for another day, but not always. Some days I feel like I’m drowning, maybe treading water at best. Most days I wonder how in the world I’m going to handle everything on my plate.
Our family photo displays a happy family smiling and full of joy. From the outside, that profile photo you see portrays a problem-free life. We look like a perfect family, but behind the camera, I assure you we have struggles too.
I’m so tired of the façade that has been put on families to be happy, loving and perfect all the time. What’s wrong with being vulnerable and raw? What’s wrong with talking about your struggles? Doesn’t it help others to know that they’re not alone? It’s not a fair representation for others to have this massive expectation in place that all mothers need to always be patient, gentle and hardworking. It’s an impossible standard for any parent, especially special needs parents.
Guess what? I’m still strong, even though most days I feel so incredibly weak. I’m still brave, even though most days I feel the weight of the world on my shoulders bringing a kind of fear I can’t even explain. I may not be a picture-perfect version of a special needs mother, but I’m a real one. I’m tired, I’m human and I struggle sometimes. I think what makes families like ours an inspiration to others is the fact that we fight through those struggles.
I love my life. It’s hard, it’s messy and it’s exhausting – but I still love it. Life doesn’t have to be perfect to be wonderful. The kind of love I feel for my children is powerful. It drives me to fight for them, care for them and be there for them in a way I didn’t think was possible. Some days I feel like I’m at the very end of my rope. My energy is gone and I can feel the fatigue taking over. I start to spiral in my mind wondering how in the world I’m going to do this every day. When I don’t know how to keep going, that’s the moment when I hear God lovingly whisper in my heart, just one more step. As I keep taking those steps I look back and see how far I’ve come down this path.
Three years ago, when our boys were first diagnosed, I was in a dark place. All I did was worry and panic. I was blinded by fears of the future and constantly wondered how I would ever do some of the very tasks that seem so normal to me now. I can’t do this; I’d mumble to myself with each big change. “I can’t drive that huge van!” but now I do. “I can’t take all three kids, two in power chairs, to appointments by myself!” but now I do. “I can’t wake up multiple times a night to help when both boys are non-ambulatory,” but now I do. The list of “I can’t do that” goes on and on, but when I browse down that list from three years ago, I realize that God has been helping me do it all.
So, to those that think you need to be put on a happy face and stay strong every second of the day to be an inspiration, you don’t. Let go of expectations that no one has ever kept up with and take a deep breath. Stop fighting to put up a perfect façade. Stop fighting to be a perfect parent. Simply keep fighting each day to take the next step. Pretty soon you’ll turn around to find a path of steps you never thought you could take. Just keep going, because that’s what it really means to be an inspiration.