My mom sent me an article about a girl in Charlotte who has a rare implication from jaundice. She was getting ready to have a surgery that would create deep brain stimulation to hopefully help control her chaotic movements and help her learn to talk. Prior to surgery, she was a lot like Catherine – but she smiles.
I read this article the same way I do a lot of articles like this one, with a panel of questions.
- Is there anything I can learn that will help Catherine?
- Should we do something so public to help Catherine?
- Do they have the best surgeons? Should we consider going there for some procedure? Same with therapists.
- And ultimately, is this kid enough like Catherine to even really matter to me?
Well, in this case, she was except for that one important point that nagged at me the whole way through the article, which got nearly two full pages in The Charlotte Observer. In photo after photo, Lexi was smiling. And the doctors and nurses and family members surrounding her were smiling. And you could tell they played off each other’s energy with that smile. In fact, the mom even talked about how the smile was what kept her going.
So what about those kids who don’t yet smile? Catherine doesn’t smile. Not really. She has a facial movement we refer to as a smile, but unless Brian is rubbing her head, she doesn’t really do it in response to a social interaction that one would normally expect to cause a smile. She doesn’t do it when she hears my voice. Nor when I hold her. Nor when I tell her how beautiful she is. Her affect is nearly always the same. When Catherine smiles, it’s usually in response to some physical sensation that must feel good to her – or be so intense that she can’t help the facial response.
And so I concluded the article with the last point that usually rattles around in my head, probably unfairly so, but this is an honest admission: Do they have it as hard as we do?
There, I said it. Well, I wrote it. And right now, no one even knows this blog exists, so no one may ever read that. Or I may open up with just that must honesty about life with a child that doesn’t smile. I think if I could have one single thing happen, I would have Catherine smile.
I don’t say that to take anything away from the struggel the Haas family faces. You can follow the story at their Caring Bridge site. Lexi really is a beautiful girl, and I wish the very best for her. Who knows, maybe they are paving the way for Lexi to talk and Catherine to smile one day.