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 watch as day after day my boys grow weaker and weaker. My daughter is gaining more and more abilities as she grows stronger, while her older brothers are continually losing abilities they once had. Duchenne is a cruel form of torture. To endure such a process feeling utterly helpless is the worst feeling in the world. I’d give anything to prevent them from suffering.
While one foot seems to prance through each day with a renewed sense of gratitude and perspective for the things I have, the other is stepping ahead into a future that is unknown. A future that is not just uncertain; it’s terrifying. I try to keep from jumping ahead in my mind, but it’s so hard not to wonder what life will look like down the road.
Some days I feel like I’m doing a good job at staying focused on the present moment. I play a board game with my five-year-old and smile as I watch her giggle and beg for another game. We have a playdate with friends or cousins, and life feels beautifully fun again. As we homeschool, I feel a huge sense of gratitude for our ability to stay home together. I tell my story at Bible study and, although it often feels like someone else’s story, I feel supported and encouraged to keep fighting for joy.
Other days, random moments sneak up on me and take the air right out of my chest. I’ll be resting or trying to sleep, and suddenly the silence is too much to bear. My thoughts take over, and suddenly, I’m wiping tears from my eyes over something that is not even a surprise to me. I know my boys have Duchenne, I’ve known for three years, but it still hurts my heart with each passing day. I know my oldest can no longer walk, but it still has this strange ability to hit me hard at random moments.
One day I was driving to the store after a very hectic week. We had just moved into a new home, and the chaos of moving was catching up to me. After taking a break from unpacking and organizing everything for our family of five, I ran to the store when suddenly this vivid vision came into my head. Without warning, without reason, and with no apparent trigger, one thought appeared like a movie scene, and it instantly knocked the wind out of me.
The image that appeared so clearly was an empty room. It was a bedroom with an empty made bed, dusty furniture. Everything was still, and I could almost feel the pain in the room. It was my son’s room that I was seeing so clearly. Out of nowhere, this vision took control of my mind. I broke down sobbing until I could barely drive. I parked and sat crying heavy tears about something that wasn’t even real. I cried until I felt the fear leave my mind. It’s been about two years since that day, and for some reason, I still remember that vision, and it haunts me.
What I’ve realized is that fear can only take over my mind if I let it. Of course, moments of fear will come that take my breath away. Naturally, I will have moments that force me to wonder what lies ahead of us on this Duchenne journey. Those moments, however, don’t need to steal my hope. They can actually help me to stay in the present if I use them as a reminder to live for today.
Some will tell you their hope lies in science, in a cure. I pray for a cure constantly, but my hope is not found there alone. My hope lies solely in God’s hands; only He knows the future. Only God is able to prepare for my purpose. He never promised to prepare me for the future right now, though. He gives me just enough strength for today. It’s like my favorite book, The Hiding Place describes, God doesn’t give you your ticket until right before the train leaves. I may not know what my future holds, but I do know who is in control of that future. I trust that He will give me the strength I need when I need it, all I have to do is focus on today. So, no matter how many times I need to refocus back to today, I choose to live by the wise words of Corrie Ten Boom. “Worry does not empty tomorrow of its sorrows; it empties today of its strength.”