While the rest of the country is snowed in, my friend Jennie and I decided to take her three kids and my two to the Ventura, California Beach for the day. It was beautiful. Sunny. Clear blue skies. In the eighties. The kids had a ball digging and dragging buckets of water from the ocean up onto the sand over and over until they had exhausted themselves.
When it was time to go home, Jennie took a load of stuff to her car first in preparation for possibly needing to carry her seven-year old Conner back from the beach. Conner is severely developmentally delayed due to a birth defect. In addition, one day last year at school, his heart suddenly stopped. For half an hour, the emergency workers mcm online tried to get his heart to start, and when our local hospital couldn’t stabilize him, he was flown to the UCLA Medical Center, where he spent several months. The depravation of oxygen increased the delays he already had.
When I finally had a chance to sit down with Jennie, she explained that the thing she hated the most was the pity: people pitying her as if she were burdened with some cross to bear. “I stood over my child for half an hour, believing that he was dead,” she said quietly to me. “Every day that we have with him is a gift. We wouldn’t change him into a typical child if we could. To us, he is perfect just as he is. He is mcm shop Conner.”
Heading back to our cars, we struggled over the sand, laden down with beach toys, chairs, umbrellas and bags. Jennie was ahead of me, and when I got to the staircase that lead down to the street, she had left the two chairs she was carrying at the top of the landing. Oddly, there was a group of about ten older women gathered at the top of the stairs. Conner was standing in the middle of the street, having lost his pants at the beach, his knees knocked together, sobbing as Jennie tried to have one of the women pass her the chairs from the landing down to the street. “Jen,” I said, “I’ve got the chairs. Don’t worry about them.” “You’re sure?” she asked, always graceful under pressure. “Positive,” I answered. Jennie turned around and lovingly scooped Conner up into her arms and proudly headed down the middle of the dead end street. Conner’s lanky seven-year old body wrapped around her small five foot one inch frame, his knobby knees and elbows jutting out mcm backpack small to the sides, safe in his mother’s arms.
I could hear the women clucking and cooing. “Poor baby… He’s exhausted.” I wanted to believe their empathy was strictly for a tired child, not for a disabled child and his brave mother, but I suspected the latter. I thought to myself that a lesser person in this situation might explain, “Well, he was born with ___.” I simply had the urge to take them all out with my beach bag.
It was then that I realized that I couldn’t explain Conner’s condition even if I wanted to because I could no longer remember what it was. I was stunned. Jennie and I had talked about it many times when we first met but over time less and less. Jennie is one of my best friends in the world. I certainly didn’t forget because I don’t care. I realized in that moment that I couldn’t remember because I don’t think of Conner as “Conner who was born with ___.” I simply think of him as Conner. I greet him the same way I greet her other children. I treat him the same way I treat her other children. I think of him the same way I think of her other children. He is a beautiful, perfectly whole child just as he is. For a moment, I felt what she explained in the coffee shop that day. I wouldn’t have him any other way.
What makes me the saddest is that when I am with my children, I get insider smiles and acknowledgement from other adults, indicating that they know how lucky I feel to have such beautiful children. When my children do something cute or say something remarkable and someone overhears, I get that look. Jennie deserves to get that look about her beautiful Conner because that is how she feels for him, but I wonder if she primarily gets looks of pity or condolence.
This makes me want to tear the world apart and piece it together into a better place. Conner and Jennie deserve a better, smarter place.
Think beyond the obvious. Life is not so black and white. No Child is perfect and one with substantial challenges is no less special or lovable than one without. Every person is equally lovable and valuable no matter what their challenges.