Hands and Feet

This morning when I woke up, my five-year-old daughter was lying next to me. She had climbed up in my bed and started watching tv. She’s a very independent little girl with a mind of her own. I smiled when I saw her patiently waiting for me to wake up. Her abrupt comment took me by surprise after I said good morning. “Mama, when you die of old age, I will take care of the boys and I will cook for them.” Shocked by her adorable, yet heart-wrenching comment I struggled to respond. Obviously, that would not likely be the case unless this awful disease is cured in our lifetime, but that’s not a conversation to have with a five-year-old. “That’s so sweet baby, but you won’t need to be in charge of them,” I said.

After we went to get the boys up, I told them what she had said. They, of course, thought it was cute and laughed sweetly. “What food will you cook us?” asked my oldest son keeping the mood light. “Umm…. mostly steak and mac n’ cheese,” she said with a proud little smirk on her face. “Awesome!” they replied to her menu choices. Thankfully a conversation that could’ve been a difficult one, became a sweet morning moment.

I realized in that moment that God has not only equipped us for this life, He has also equipped her. She was born with a fire inside of her. She is nurturing, loving, kind and so very funny. She was born to bring people joy. She was made to be a help to others and a light in this dark world.

She was only about two years old when both of our sons were diagnosed with Duchenne, and yet she has always wanted to help. If I was trying to keep them hydrated, she would follow them around with their cups, telling them to “dwink more.” As our lives continued to change, she kept amazing us with her ability to adapt and help along the way.

When I did their stretches at night, she would awkwardly push their legs up as high as she could. She’d grab their ankle trying to hold it up, grunting at the weight of each leg. As I took over, the boys would laugh hysterically at her attempts to help. Every doctor’s appointment she insisted (and still does) to go “with the boys.” She always wants to be by their side.

She’d help pick things up for them, run to get me if they fell or needed help, and lift things they could no longer lift. When Logan stopped walking, she constantly insisted he give her power chair rides, which somehow took away some of the grief and made us smile. We’d all laugh as we watched him race around the house with our giggly little girl on his lap, forgetting, if only for a moment, that our son had just lost his ability to walk.

In the early years after the diagnosis, we got a lot of questions from the boys about the future. Mainly they just wanted to know how they would do certain things as their body got weaker. “How will I get around?” “How will I take a shower?” “Will I be able to drive a car?” Most of the questions had simple answers, like telling them they would use a power chair instead of walk, but some questions were much harder to answer. Some left us unable to explain things at an age-appropriate level, so I’d simply say that we would take care of them. “We will be your hands and feet,” we vowed with every ounce of our hearts.

I’ve since realized that God made me with a nurturing spirit for a reason. I don’t mind dressing my boys, carrying them to the bathroom, turning them over in bed, or bringing them their meals. I’m honored to be the one to shower them, care for them and love them in a way that most moms are only able to do when their children are little. God made my husband fit for this life too. He is strong, smart, reliable, and always knows what to do in difficult situations. He calms me when I panic and I like to think I encourage him when he needs it too. There is a reason God put us together as husband and wife.

I may be a different kind of mother than I thought I’d be, but I know now that I wouldn’t want it any other way because this is my God-given purpose. He knew what my children needed from me, so he gave me a love for caretaking. He gave me empathy for others and he gifted me with a love for my children that is beyond my wildest dreams of motherhood.

To this day I still use that phrase quite a bit. “We will be your hands and feet.” I say it to them when hard conversations arise. I say it when my husband and I break down at the thought of watching them lose more and more abilities. When I’m having a hard day, I let it serve as a reminder to focus on the honor that has been bestowed upon me. When I haven’t slept, when I’ve gotten up so many times my back aches, or when I just need a break, I remember my promise to them and it helps me push through. It helps me stay strong and turn to God with my weary heart.

After that adorable conversation early that morning, I realized something beautiful. God made my daughter for a divine purpose too. He gave her so many gifts that we’ve seen and some that we’ve yet to even witness yet. He gave her the gift of compassion. He made her brave, sweet, and full of joy. She is the first to hug me when I’m sad and she’s always willing to hold her brother’s hands before another infusion.

I don’t know what the future holds for us, but I do know that God will equip us just as he always has. I know what the internet says about the lifespan of someone with Duchenne and I know that realistically we may sadly outlive our boys. That knowledge haunts me and I pray every day for a cure. Our future may be uncertain right now, but I do know that our young daughter will never have to carry the responsibility of our sons’ future care. She will have her own life to live and her own dreams to follow, but the fact that her heart is willing at just five years old means that she is truly an extraordinary little girl.

I don’t believe that God makes mistakes. He makes us all with special gifts and a beautiful purpose to fulfill. It’s no accident that Duchenne is in our lives and it’s no accident that our sweet girl loves her brothers with such a maternal passion. I can’t help but feel blessed watching her love them the way she does. All my children inspire me every day to be a better mother, a better caretaker, and a better human being. I’ve always wanted to do something important for God, little did I know he would bring that important task to me in such a way. He blessed me with the most amazing children to raise and I promise to always be their hands and feet every step of the way.