The Truth About Two
I had a meltdown today. I cried, I yelled, and I mumbled to myself, “It’s not fair.” I’d love to be able to say that I bravely face each day with unbreakable courage, but I’m human. I am brave, I am courageous, but I am also vulnerable, fragile, and exhausted. I’m tired of the roller coaster I live on, full of ups and downs, joys and sorrows, and everything in between. Life seems to have me trapped in a cycle of change, grief, acceptance – repeat.
My meltdown came shortly after my son’s meltdown. That’s the thing about being a Duchenne mom; it’s hard to hold it in when your child needs to let it out. My youngest son has been having a hard time dealing with his weakening body lately. This morning he dropped a Lego bin he thought he could still lift. I ran to help him, but it was too late, and the entire bin fell to the floor, splattering Legos everywhere. He stormed off crying, feeling defeated by a small plastic bin that to him felt like just another reminder of the things he could no longer do. I calmed him, held him, and then went to clean it up.
The mess was not what upset me; it was the reminder of Duchenne’s power over us. I lifted the drawer with one hand and easily put it back, yet he could no longer hold it up. I sat there sorting tiny Lego pieces with tears in my eyes. You see, I’ve been through this stage before with my other son. I recognized these emotions because I watched him go through the same thing. It was hell to watch him suffer through it, and yet here I was again, watching my youngest son walk the same path. I can’t do it again, I thought to myself.
People often wonder what it’s like to raise two sons with a degenerative disease. It’s a hard question to answer because it feels impossible to live through, let alone explain. There are no words to express how it feels to watch one son weaken and lose his ability to walk, only to have another son following the same pattern right behind him. My boys are only two years apart, and sadly the disease seems to be affecting them both rapidly.
As I wiped the tears from my eyes and put the Lego bin back in its place, I stood up and went to check on my son. When I walked into the living room, I saw the most beautiful sight. My oldest son was hugging him from his powerchair while his little brother rested in his arms. He was crying on the only shoulder in our home who truly knows what it’s like to suffer with Duchenne. He knows what it feels like and chose to comfort him. My tears subsided, and my heart fluttered with pride. My thoughts shifted from “poor me” to how lucky am I to be their mom.
Every day I watch my boys fight one of the most challenging diseases in existence. Of course, we see them show frustration and shed tears sometimes, but we mostly see joy and courage. Most of their days are spent playing, laughing, and enjoying their lives. Not only do they inspire the world around them, but they also inspire us to live like them. They motivate me to get back up after a moment of sorrow and brush it off, just like they do. They inspire me to watch for what comes after the moments of despair, to look for the light in the darkness.
I’ve started to notice that each time something weakens in our home, something else grows stronger. Our compassion, perspective, and love for each other intensify with each passing day. We are closer as a family because of Duchenne. We are empathetic, kind, and loving people because of the path we’ve been forced to travel. We are different people because of this disease. I’m comforted by the fact that what was meant for harm, God has used for good.
Having two sons with Duchenne is unbearable at times, but it’s also the only life I know. I wouldn’t say it’s our normal, because nothing about this disease feels normal, but it is our reality. It’s heartbreaking, but it’s also heart-changing. It’s full of unfair realities, but it’s also full of unconditional love. It’s drenched in tears of sorrow, but also full of tears of joy. It’s brutal, but it’s also somehow a blessing. My children teach me how to live with intention. They teach me how to love fiercely. They show me how to shake off the moments of sorrow and wait for the light to shine through, and let me assure you, it always does.