When my son Charlie was born, the primary thing I noticed were his eyes. They were technicolor blue like the kid from A Christmas Story and surrounded by a fringe of the longest lashes I had ever seen. I was so sucked into their orbit that I forgot to blink. When I did, I registered his enlarged tongue, the reason we were in the emergency room in the first place.
The tongue would be the thing that kept us in the neonatal intensive care as we problem-solved how to help him breathe safely so we could get him home. Ten weeks later, we left the hospital on a late spring day with Charlie’s new tracheotomy bobbing up and down like a tiny, dapper bowtie each time he turned his head.
I took him for a walk when we got home. His wide blue eyes reflected the wide blue sky that hospital life had hidden from him. Though those eyes are more green than blue now that he is ten, the shape still holds and it came straight from me.
As Charlie continues to age, I notice these subtleties in his body that reflect my side of the family more often. He has my nose with the bump at the bridge. He has my mouth with the specific curve of my upper lip. And his feet mirror the same square toes that are almost all the same length. We have a gap between the first and second that is perfectly suited for flipflops.
He also has my family’s body shape – long, lean, built for movement. I see my nephews in him, diving for a ball on the tennis court, running the 5k for the Turkey Trot on Thanksgiving morning, leaning into a pitch in baseball. This is where I stumble. Because Charlie’s cerebral palsy has altered that course for him. I see the shadow memories of what his body can do and for the briefest flicker of time, I grow sad that Charlie cannot experience it.
And yet…
He loves his wheelchair. While we wait for the school bus to pick him up in front of our house, I sprint down the sidewalk, pushing him fast, faster!, until the wind blows our hair back and he howls with laughter. The kid was built for speed. He was also built for horseback riding, something we would never have discovered had it not been for the therapeutic equestrian program in our small town. Also, Charlie took his first steps in a pool, the aquatic therapy another beautiful way he freely moves with grace and strength.
Charlie’s body is a time capsule of all the activities of the generations before him. I see the races run in the curve of his calves and the aces served in the broadness of his shoulders. But Charlie’s body is also purely Charlie’s. He has done things the rest of us never have – the riding, the swimming, the maneuvering of a wheelchair that I would surely crash.
Charlie’s body was perfectly designed for him. This is where memory fades and the present takes over. There is no regret for what could have been, because what is is pure magic. He is elegance and precision and a continual reminder to me that we can be grateful for what our family has passed down to us even as we marvel in the new things we achieve that they could not. Our bodies are memories. Our bodies are also uniquely our own.
Jamie Sumner is a special needs mom and author.
Jamie-Sumner.com
Author of the middle-grade novels:
