If someone asked me what it’s like to be a Duchenne parent, I’d tell them that it’s a constant contradiction. It’s an odd combination of joy and sorrow. It’s an unsteady balance of firsts and lasts. It’s a strange paradox of pain and happiness, sometimes all at once. Being a Duchenne parent is full of every type of emotion life can offer.
When I first became a mom, I was excited by all the “firsts.” Their first steps, their first words, and all the first milestones that made me melt with love for my children. Then, I was thrown into the world of Duchenne, and suddenly a lot of those joyful firsts shifted to painful ones. The first blood draw, the first hospital stay, the first fall, and the first difficult question we had to answer. It felt like every time we adjusted to a new way of life, change forced its way into our lives once again.
Suddenly I was noticing some of those same firsts were shifting to “lasts.” I was caught off guard by these lasts because they seemed to come our way so much faster than we expected. The last time they rode a bike, the last time they could climb a ladder at the playground, and the last time they could get up from the floor by themselves. These lasts made me sad, mostly because I wondered if we cherished the days before enough. The thing about firsts and lasts is that you rarely see them coming. Sometimes you expect them, but most often in the world of Duchenne, these moments take your breath away with their abrupt appearance. They blindside you in a way that nothing else can.
Two weeks ago, on what felt like an ordinary day, my ten-year-old son took his last steps. We had no idea that day would be one of those “lasts.” The day before he walked to the bathroom, he walked into the kitchen, and he was able to stand by himself. I didn’t know that the next day when I’d attempt to lift him to a standing position, he would buckle in my arms, unable to bear weight on his legs. Just like that, he couldn’t walk anymore. Once again, our lives changed in the blink of an eye. The words “non-ambulatory” flashed through my mind like a neon sign I couldn’t turn off. My son can’t walk; I kept thinking to myself, trying to process the news.
To be honest, he’d only been walking a little bit each day, so I suppose I shouldn’t have been so surprised, but I was. He is only ten; I kept repeating in my mind. No matter how much you prepare yourself for a moment like that, it still hurts. It’s a shock to your system. It’s a surreal feeling that is impossible to explain. I’d look out the window and see kids running by with their friends, families riding their bikes together, and people walking by completely unaware of how lucky they are to simply be able to walk.
I wasn’t bitter; I was just grieving. Grieving the loss of his ability to walk, grieving the life I wanted for him, and grieving the new changes to our routine. He was too, but like most young boys, their grief doesn’t always look like ours does. We saw anger, a bit of frustration, and disappointment in him, but then like magic, he just seemed to move on. He accepted it in the most courageous way.
Instead of lamenting, he handled it with grace. He went from mourning the things he couldn’t do to bragging about all the things he could do. He started to talk about how fast he could go in his power chair compared to someone running on foot. We’ve adjusted well to his new needs since that day. He doesn’t seem to mind all the new things we have to help him do. He never complains, and aside from the occasional display of frustration, he is a very happy child. He is a hero with a heart of gold, and it shows even in the darkest of times.
His brother is two years younger than him. I worry that he lives in fear of the day he too will be unable to walk. How difficult to watch someone weaken knowing that the same thing will happen to you. I always worry that this thought will torment him, but he never seems afraid. He somehow radiates with compassion, joy, and a love for life that most people would envy. He is an inspiration, just like his older brother.
The other day my ten-year-old son laid in bed watching tv early in the morning, waiting for the rest of the house to wake up. My eight-year-old being the early riser that he is, got up and walked to his brother’s bedside. “Do you need anything, Logan?” he said, completely unaware of how selfless of a question he had asked.
When my son told me what his younger brother had done, I just about sobbed in front of them. My eight-year-old cannot get up from the floor, he can’t walk for long distances, he can’t run anymore, and he can’t lift anything remotely heavy – and yet he offered his help. All he saw was an opportunity to help his older brother, who could no longer walk; little did he know how beautifully this act describes him as a person. In that moment, I was reminded of God’s love. He always brings us beauty in the darkest of places. As one of my favorite quotes reads, “There is no pit so deep that God’s love is not deeper still.”
Recently, I asked Logan how he feels about not being able to walk anymore. He didn’t cry or get angry; he looked around for a second and thought about it, then simply said, “At least I can still do all the things I like to do.” Then he went back to playing Legos with his siblings. As I watched them, I realized that every time something like this hits our family, we grow closer. I wouldn’t wish Duchenne on anyone, but I do feel quite blessed by the beauty it brings our way. Without the dark, we wouldn’t see the stars, without the rain, we would never see the rainbow, and without the hardships, we wouldn’t treasure the joys in the same way.
They say when someone loses their sight, all their other senses intensify. Well, in the case of Duchenne, I think the same is true. My son may have lost his ability to walk, and sadly my younger son’s last steps still lie ahead, but their ability to love, laugh, inspire and bring joy to others has greatly intensified. Duchenne has taken a lot from us, but it will never take our ability to cherish each other with a deep, immeasurable, profound, and unconditional love that some people will never have the privilege of knowing.