There hasn’t been many moments in my life where I’ve felt like turning around and giving a complete stranger a piece of my mind. But it happened once. In a checkout line of all places.
It was a while ago, Jarvis was sitting up in the seat of the trolley and I was facing him. He was smiling up at me and then began smiling at the people behind me, who when I glanced back were a mother and a pre-teen aged girl. Jarvis kept smiling at them and then I heard it. Muffled and whispered but it hit me like a a tonne of bricks. The mother says to her daughter “there is something wrong with that little boys face. Have a look.”
I felt my whole body stiffen. I knew what I heard, but still couldn’t quite believe it. That firstly a mother would be encouraging her daughter to look for what’s ‘wrong’ with my son’s face and secondly that this is worth pointing out in the first place.
Although I was angry at the time, I have to believe that her words came from a place of curiosity and a lack of awareness. That she perhaps had never seen someone that smiled with only one side of their face.
That’s where Craniofacial Acceptance Month comes in, an initiative of America’s Children’s Craniofacial Association, reminding us all that beyond the face is a heart.
The Association gives hope to children and families with a number of craniofacial disorders, including facial palsy which is what Jarvis has. Its website was one I came in contact with when I was googling the condition in the dark of the night, trying to come to grips with it in that early haze when Jarvis was a newborn. It was one of the most informative sites, with a whole pdf booklet on Facial Palsy. I still remember reading that booklet for the first time and hitting the line that moved me to a flood of tears …
“Occasionally a child discovers that smiling frequently causes a facial imbalance. For that reason, he may avoid smiling altogether.”
For now, Jarvis is completely unaware of his facially imbalanced smile. But I hope he already knows the effect of that smile on me and all the people who love him. That smile of his, no matter how different, is pure joy. I can’t imagine a world without his smile in it and I really hope he never feels that the world doesn’t need his smile.
So September is a great to time to be reminded to celebrate ALL smiles and ALL faces as being perfect just as they are.
For further information, visit CCA Kids website.
Another great resource for those interested in finding out more about Facial Palsy is the Facial Nerve Palsy site, which I contributed to as a member of the Courage to Smile facebook group.