It’s been almost a year since my oldest son stopped walking. It seems like just yesterday that he collapsed in my arms unable to put weight on his legs. It felt so sudden and surreal. I kept thinking he’d take another step at some point, but he never walked again. The grief of that time was heavy for us all, but Logan led us through it with grace and courage.
Now we are about to face the same reality with our other son. He is only nine years old and yet his legs are starting to fail him already. With every step, he shifts his weight carefully from side to side. He wobbles to the bathroom and is now using his chair most of the day. The other night he came in to cuddle with us in the middle of the night. Mason is one of those rare souls that wears his emotions on his face. His sweet angelic face will tell me everything I need to know, so I knew he needed comfort.
When it was time to take him back to bed, I helped him up and followed behind him. Watching him carefully wobble as he walked cautiously back to his room. He stopped and looked up at me, “Mom will you carry me?” He whispered. I scooped him up and carried him to his bed. As I carried him, I could imagine him as a tiny little baby staring up at me, completely dependent on us for his care, and yet here he is nine years old in need of the same type of care. Pushing my emotions down, I kissed his forehead and went back to bed.
The next morning, he struggled to get out of bed. As I helped him get dressed and lifted him into his powerchair I noticed his face once again speaking to me without words.
“What’s wrong bud?” He didn’t say anything, just shrugged his shoulders. “You aren’t ready, are you?” He shook his head no as tears welled up in both our eyes. He knew what was coming. He watched his brother go through the same exact thing less than a year ago. I’m not ready, either buddy.” I said honestly as we hugged each other tight.
What stands out about that day is not the difficult emotions, though they do leave a painful scar on my heart, it’s what happens afterward. After we hugged, he wiped his tears and rolled off to join his siblings. He laughed, played Legos, and immersed himself in a pretend world of building. I stood there frozen with fear of the future, while he happily played like nothing even happened. I realized, as I do almost every day, that I need to let him lead us through this. I need to be brave like him.
If I’m being honest, I don’t always feel brave, especially during times of transition or difficulty. I go through the motions and encourage my boys to be strong, but inside I’m begging for strength. I think of my sweet Mason looking up at me with his big brown eyes asking me to carry him. I can hear his innocent little voice whisper in my head. “Mom, will you carry me?” Always, I think to myself, I will always carry you.
Ironically, these thoughts often lead me to a divine revelation. I remember the famous poem, Footprints in the Sand. The poem is about someone asking God why there’s only one set of footprints in the sand during the lowest times in their life. He simply replies, “When you saw only one set of footprints it was then that I carried you.” This is one of my favorite poems because it reminds me that I am not alone in this journey. Of course, my husband is by my side, but when waves of uncertainty or pain come rolling in, I can’t help but feel lost sometimes. That’s when I remind myself that just as I have vowed to carry my boys whenever they need me, God has promised to carry me.
I don’t know when Mason will stop walking. Each step he takes I watch and wonder if soon one of those precious steps will be his last. I’m not ready to go through that again. I can’t imagine both my boys being completely non-ambulatory. The emotion I feel when I think of the things my sons have to face at such a young age often brings me to my knees. Some days I feel like I’m frozen in a state of despair, but other days I feel strong. Some days I feel inspired to live life to the fullest, to cherish every second, and to show my love for my children with every task I do for them.
I carry my sons to the bathroom, to their beds, to their chairs, and to the couch anytime they need me. Caretaking is a privilege that I never want to take for granted. On the good days I know my faith is keeping me strong, and on the days that I feel the weight of the Duchenne world attempting to crush me, I know deep down that it won’t because just as I will carry my boys for as long as I can, God will carry me forever.