My oldest son recently lost his ability to walk. Not only has he been dealing with the emotions that come with such a change, but our whole family has also been grieving the loss of his ambulation. My husband and I obviously knew it would be part of his progression, but the reality of it felt much heavier than we anticipated. Our other two children had to adjust to the transition as well, and it hasn’t always been easy.
My younger son is eight and also has Duchenne. I often worry about the effect his older brother’s progression will have on him emotionally. He knows each new change that comes his brother’s way will soon be his reality too. It seems to me that kind of torment would be so hard on a young child, but he doesn’t seem to mind. If it does bother him, you’d never know it from the way he handles it.
Ever since Mason was a baby, he’s had this indescribable light inside of him. All of my children are incredible in different ways, and I love them all unconditionally, but Mason has this way of inspiring me to love like he does. He loves his family with the kind of compassion that’s contagious.
When Duchenne entered our lives two years ago, I feared that such a heartbreaking diagnosis would diminish that light inside of him. Somehow, Duchenne has made that light shine even brighter. He was diagnosed at six years old, but never seemed surprised by the presence of his disorder. Both my boys seemed to know they were different before I did.
While my oldest would always ask very logical questions like, how will I go to the bathroom when I can’t walk? How will I play with toys from my chair? Mason tends to say things that leave us speechless. Questions that instantly bring tears to our eyes like, will I be able to run super-fast in Heaven? He once spoke of “the lovely view” below as we drove down the freeway. We only saw billboards and traffic, but he saw something beautiful out the window. He possesses this stunning ability to see the world differently than other people.
The other day he asked me a very simple question, but it took my breath away. Looking at me with his big brown eyes, he asked me how he’d be able to hug from his powerchair? As I walked over and demonstrated, I told him we would simply lean down to hug him. “No, I mean, how will I hug Logan when we are both in our powerchairs?” Most boys might ask how they will handle losing their ability to walk, but Mason just wanted to know how he’d continue to hug his older brother.
At that moment, I was once again blinded by that incredible light inside of him. It shines through his laugh, his selflessness, his kindness, and the way he loves others with every piece of his heart. It’s rare that someone so young can make you want to be a better person, but that’s what he does.
He can no longer lift heavy things, walk long distances, or get up from the floor anymore, but that doesn’t stop him from trying to help others. If his little sister gets hurt, tears fill his eyes as soon as he sees her cry, and he rushes to her side. His older brother used to fall often before he was in a power chair. It was very hard on all of us, but every time it happened, Mason was the first one there attempting to help him up. It didn’t matter to him that he didn’t have the physical strength to help; his heart led him to try. He may not be able to do a lot of things that other kids can do physically, but his ability to love and inspire is simply unmatched.
As a Duchenne mom, sometimes I feel sorry for myself. Sometimes I can’t help but think that we don’t deserve a life full of suffering. No one deserves the existence of Duchenne in their lives, but we don’t deserve the powerful love that surrounds us either. Mason is a constant reminder of the way God wants us to love each other. He is my constant reminder to find joy amongst the darkness.
We talked at bedtime one night about suffering. I wanted to make it clear that God doesn’t cause our pain, but He can use it for our good and His glory. He can take it and turn it into the vessel that changes us into the people we were always meant to be, but somehow, at just eight years old, Mason seems to already know who he is. He is not just a boy with Duchenne; he is a boy who loves his life. He doesn’t wake up and see obstacles; he sees opportunities to show love.
Two years ago, he almost lost his finger after it was shut into the hinges of our bathroom door. It was traumatizing for all of us. I remember crying out to God in the bathroom of the hospital to heal my baby’s finger. Not this too, I begged God. I felt so sorry for him. First Duchenne and now this, why does he have to endure this, I wondered. Mason never uttered one complaint. He cried, but never showed one ounce of bitterness.
Thankfully the doctors were able to stitch his broken and severed finger back together and send us on our way. On the ride home, we asked him how he was feeling. At just six years old, he replied with more wisdom than most adults possess. His incredible words will stay with me forever because they describe him so beautifully. “I’m just grateful I get to keep my finger.” He said.
I’m not sure he really understands the impact he has on those around him. His light is a gift from God, and I see it shine through him every day. It shines every time he embraces someone in tears, shows gratitude in dark moments, or attempts to help his brother – even though he suffers from the same disease. There’s an old gospel song with lyrics that remind me of my sweet boy. “This little light of mine, I’m gonna let it shine. Let it shine, let it shine, let it shine.”