Nights are the hardest for me as a Duchenne mom. The worries, the stress, and the exhaustion seem to catch up to me as soon as my head hits the pillow. I try to gear up for the night ahead, knowing that I will still be needed throughout the night. I feel honored to be a caretaker to my beautiful boys, but that doesn’t take away the exhaustion that it brings. By the end of the night, I feel like my strength is completely depleted, and yet I must get up every time I’m called.
That day felt like the end of the world. Depression took over and brought me to a dark place I didn’t recognize. A place where getting out of bed was suddenly difficult, and sobbing in the shower was normal. Everyone else seemed so different from us now. I didn’t understand how the world could keep turning or how the sun could keep rising. How could everyone continue living like normal when our lives had just so tragically been flipped upside down?
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.