What's in a Name?

I know we've mentioned it to Peter before, but he either didn't completely understand or maybe he just didn't care. Recently, however, he seems to have had some sort of epiphany about himself. It’s like he finally realized that there is actually a name for his differences. We have never made a point of defining his birth defects in a very formal way. I mean, really, whatever it’s called is not going to change the treatment and care he requires. It’s funny how all of our family and friends have now heard of Goldenhar Syndrome, but that Peter himself has never actually identified with the name. Well, not until recently.

Last week we were able to attend the one-day symposium at the CCA Retreat in Louisville. Peter and Jacob both participated in some workshops about communicating and handling public situations. They were specifically designed for their ages, which was really great. I’m so glad that they were able to talk with other children that have to overcome the same social obstacles they do. It had to be both comforting and empowering.

At ten, I know this increased since of self is just beginning for Peter. More than anything, I think that our medically-challenged kids as well as their sibs possess an enormous amount of compassion and acceptance for others. By attending events like the CCA Retreat and seeing other children in the hospital frequently, our kids have a completely different definition of what “normal” really is. I can personally attest that Peter is extremely sensitive when hearing of anyone else’s misfortune, almost to the point where we can’t share as much information with him as we would like for fear of upsetting him too much.

Attending the CCA Retreat last week with Peter at the age of ten was very different from the last retreat we attended when he was seven. I think learning that he is not so unique after all, that he is not the only one dealing with surgeries and clinic appointments, and that he is not the only one handling stares and questions in public was somewhat humbling. It’s really the perfect venue for him to “check in” with himself and figure out where he fits within a community and family like CCA where different is normal and really no big deal.

I was happy to hear what Peter said when introducing himself at one of the workshops. He said, “My name is Peter Dankelson. I have Goldenhar Syndrome, and it sucks.” It’s simple, true, and, I think, perfectly healthy feelings for a ten-year old boy.