After much anticipation it was finally the day for the CCA picnic. CCA is Children's Craniofacial Association which is a wonderful organization that provides education and support to children and their families who like me have a craniofacial syndromes. Please check them out at ccakids.com! September is Craniofacial Acceptance month and CCA had families sponsor picnics in their communities. The CCA picnic closest to us was in Los Gatos which is 2+ hours away. Although it was a long drive, it was well worth it. We went to a great park and met six other children and their families. One little girl has a facial cleft, a 2 year old boy has craniosynostosis and a 2 1/2 year old girl has Treacher Collins Syndrome. The biggest surprise, though, was when I got to meet a girl in the second grade named Casey who has Nager syndrome just like me! I was officially the only child at the picnic with a trach although at least two of the children had a trach at some point. But you should have seen all the Mic-KEY buttons! Our picnic was hosted by Courtney and her son Seth - thanks guys for inviting us!
We started out the picnic with all the kids riding on a small steam engine. It was my first time on a train and it was so much fun! Then Mommy took me on my first carousel ride. Despite the expression on my face, I loved it! In fact, as soon as the ride stopped I started signing "more". The group headed back to the picnic area and I got some play time on the slide and swing. Later, Mommy and I talked to Casey for a little while. She is also a patient of Dr Schendel's and will be having similar surgery as I will soon as well. Casey was fascinated with my trach and kept touching it but I didn't mind at all. She just had her trach taken out about a year ago. She showed me her button and I showed her mine. She also had the same surgery done on her right hand as I did so we compared our hands since they looked exactly the same - three fingers and a thumb! She showed us her BAHA's that were implanted behind her ears and then told us about all 9 of her surgeries - she's been a busy girl. She had to leave to go to a swim lesson (yes she is swimming now that she doesn't have a trach) and we had a long drive back home. Mommy sure wishes we lived closer to everyone because in the short time she got to talk to the other parents it was clear that we all have a lot in common, but she will try to get email addresses so we can stay in contact.
We had a great day and hope to make this a yearly event!
Peyton Nicole Smith