“Don’t look back, you’re not going that way.” This quote could have so many meanings to so many people depending on what they’re going through. For me, it made me realize that I spend too much time in the past.
Years ago, I wrote a book about motherhood. I tried to give helpful advice. I spoke of real-life experiences and talked about how to survive the chaos that engulfs you as soon as you become a parent. Then like a tsunami we never saw coming, our two boys were diagnosed with Duchenne. Suddenly, I didn’t know how to be a “regular” mom anymore. Suddenly I was a Duchenne mom, a special needs mom, and a homeschool mom. I felt like a whole new mom. I felt like a fraud. I couldn’t relate to normalcy anymore.
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.
I have a confession to make. Sometimes I focus way too much on the negative things in my life. I see a family riding bikes and my heart sinks, my boys can’t do that anymore, I think to myself somberly.
I may be a different kind of mother than I thought I’d be, but I know now that I wouldn’t want it any other way because this is my God-given purpose. He knew what my children needed from me, so he gave me a love for caretaking. He gave me empathy for others and he gifted me with a love for my children that is beyond my wildest dreams of motherhood.
When it was time to take him back to bed, I helped him up and followed behind him. Watching him carefully wobble as he walked cautiously back to his room. He stopped and looked up at me, “Mom will you carry me?” He whispered. I scooped him up and carried him to his bed. As I carried him, I could imagine him as a tiny little baby staring up at me, completely dependent on us for his care, and yet here he is nine years old in need of the same type of care. Pushing my emotions down, I kissed his forehead and went back to bed.
Some days I wake up determined to face my day. Some days I feel motivated to do everything with a good attitude. I aim to view each day as another opportunity to make memories, live life to the fullest, and be grateful for what I have. Some days I breeze through my days of caretaking, motherhood, teaching, and serving with joy and purpose, but other days I have trouble just making it to the coffee maker.
Yesterday, I felt defeated. It was as if I was hiking up a steep hill wearing a backpack full of heavy rocks. Each rock represented something different. One was lack of sleep, another represented anxiety. One was depression, fear, exhaustion and the heaviest one that always seems to be making its presence known goes by the name of Duchenne.
Right now, you’re probably putting your baby to sleep. You might be rushing to put him down so you can go get dishes done, laundry started, and dinner prepped. I get it; I do. I know you feel overwhelmed by the constant state of stress you’re facing. That growing to-do list in front of you seems to get longer by the second but listen to me closely. You need to slow down. You need to cherish every single second of the stage you are in right now because before you know it – it’s over.
I bought a shirt recently that says running on faith. I love it for so many reasons. Of course, it’s comfortable, but it’s also a reminder for me to shift my perspective. When I feel like I’m running on empty and I can’t make it one more mile, faith takes over. When I feel like I’m climbing a mountain and all I see is the huge trail ahead of me, faith tells me to just take one more step. Where my strength ends, God’s strength begins. It’s a life-changing way of thinking for me, especially as a Duchenne mom.