At the cellular level, every bit of David’s body has been affected by a chromosomal abnormality. It isn’t the way it’s supposed to be. The coordinates on the map are incorrectly labeled. The recipe has all the ingredients but in the wrong amounts. The computer coding has a typo and the program won’t run correctly. When David was born we saw his left hand had only two fingers. It was the first indication David had a genetic disorder. His body is broken, imperfect, and flawed. His soul on the other hand, is intact and whole. His soul resides in a body that simply doesn’t cooperate because it can not. His soul fights every day to live fully.
Before David was born, before I was married, I taught with kids in wheelchairs, kids with g-tubes, kids who were non-verbal, kids with autism. I worked with special needs kids, or I should say, I worked with typical kids trapped inside bodies with special needs. Every day they arrived at school at 8:30am, every day they left at 2:40pm and in between we lived life together; learning, growing and connecting. I knew each of my students well. I knew their physical needs and quirks, their preferences and personalities. I knew their souls and they knew mine.
When two people truly connect on a soul level it’s a kind of miracle. It’s much deeper than a physical connection. It takes time and energy. It takes patience and quiet. It’s a soul to soul, heart to heart connection. It’s the way an expectant mother bonds with her child before he’s born. It’s the way we can’t stop thinking about a friend–so we call up her up only to find out she really needed words of encouragement at that very moment. It’s a deep knowing cultivated over time. I can’t explain it, but if you’ve experienced it, you know exactly what I’m talking about.
We may be tempted to say the body doesn’t matter. The body is broken—who cares?! It’s the soul that truly makes us who we are. And yes, in part, this is true. But the body does matter. The body carries the soul. The body breathes and speaks and sings and moves. The body is the outward representation of the soul. The body works on our behalf to make our soul known. A soul needs a body and a body needs a soul. So we care for our bodies. We walk and run and try to eat healthy food. We brush our teeth and see doctors and have surgery to repair a heart defect. We buy clothes that fit and have our hair trimmed. We honor the soul by caring for the body.
Yesterday David worked on feeding himself. He carefully lifted a spoonful of lemon yogurt to his mouth, took a bite and placed the spoon back into the bowl. He isn’t able to scoop up another bite, so I do that part for him. Again and again, I fill the spoon, again and again he lifts it to his mouth and places it back into the bowl. Over months and years of working on this skill David continues to improve.
And we celebrate! Because David’s amazing, stubborn, beautiful soul is winning over a body that doesn’t work right. We celebrate because it’s a HUGE accomplishment. No, eating a spoonful of yogurt isn’t a huge accomplishment for most 14-year-old boys, but for this kiddo, who lives inside a body that doesn’t cooperate, it’s massive. It deserves shouts of delights and high-fives.
While my hands are clapping and I cheer for his success, a tear slips down my cheek. This sucks. I hate that my son has to fight moment by moment to live a full life with a body that fights against him. I hate that he has to work harder than most kids to communicate and eat and walk and sometimes just to breath. I hate that he sees seven different medical specialists. I hate that he’s had multiple surgeries and will likely have many more. I hate there are times he comes up beside me and takes my hand, looks at me with an intent gaze while he stomps his foot, hoping I’ll know what he wants. I offer him a snack and see the frustration cross his face. He stomps more and pulls on my arm. I offer him a cuddle and he pushes me away. I hate that he can’t tell me what he wants and I hate that sometimes I can’t read his soul well enough to guess.
But that soul. I love that soul. And I love that broken, imperfect, adorable body that holds his beautiful soul. A love that is deeper because our souls have struggled and grieved and found hope together.
Today I will put this necklace around my neck as a reminder of the love between his soul and mine. He is part of my tribe. He is my safe place and my love. I will do my best to care for his physical needs with patience and tenderness. I’ll help him scoop up spoonfuls of food again and again. I’ll help him put on his pants and button his shirt. I’ll cuddle him and kiss him. In return he will smile at me making my heart do flip flops. He will take my hand and show me what he wants. He will teach me how to be grateful. He will teach me to notice the beauty all around me. He will move through the day with bravery and determination. He will inspire others and spread joy to all who know him.
His soul knows mine and my soul knows his. At the end of the day, we are both souls living inside imperfect, broken bodies. Not just David, but me as well. And someday I know it won’t be this hard. Someday all with be made right and our bodies will be made whole. Someday heaven will come. Today we find beauty in this moment, hope for tomorrow and a deep love between our souls.
Lisa also creates her own beautiful handmade customized jewelry. You can shop her looks her at www.lisaleonard.com