Networking at Myrtle Beach
July 11, 2008 11:00 AM

In 1985 there was a movie named Mask, starring Cher, based on a real-life story of a facially disfigured teenager. Since that time, Cher has remained involved with disfigured kids and is the National Chairperson of the Craniofacial Children's Association (CCAKids.org).

Along with other events, this association holds a retreat each year for children with any number of disfiguring syndromes. They just held their 18th Annual CCA Retreat and Juliana was able to attend. It was held at a convention center in Myrtle Beach and was attended by about 85 families. There were group activities, such as a visit to the Ripley's Aquarium on Friday and a trip to the beach on Saturday. In the evenings dinner was in a huge ballroom (three ballrooms with the dividers removed), followed by a talent show on Friday night and a dance on Saturday night. Most of these families have been coming to the retreats for years and have come to know each other already, but it didn't take long for Juliana to make a lot of new friends.

It was the first time Juliana had actually seen and played with other children with trachs, feeding tubes, hearing aides, etc. She quickly befriended a little girl a couple of years younger than herself, pushed her around in her stroller, and even tried to suction her. The girl has her hearing aides on a headband like Juliana does, but her headband is red (Juliana's is black), so Juliana refers to her as "my friend with red ears."

The favorite activity of the two girls was to run—the three ballrooms opened up to a space comparable to three football fields, and they loved to just run from one end to the other. Juliana was watchful though. If she thought her friend was venturing off too far she would come and get her friend's dad, taking him by the hand and pulling him out of his chair. Watching them run reminded me of how my son loved to run at the beach when he was that age. Kids like these don't often get to show their exuberance like that, as they learn not to draw attention to themselves. They love going to these functions where there are so many children like themselves.

On Saturday night the dance floor was full. There was a disc jockey playing a variety of music, including line dances. Juliana would watch the dance for a few minutes, then join right in. She loves to dance.

I was so proud of her at her dance recital a few weeks ago. It was probably the first time she had been more than a few feet away from someone she knew and trusted with the suction apparatus. She had to stand with her group, in the wings, in the dark, waiting for the curtain to go up. Tami was close by, with the suction, but Juliana couldn't see her. She did fine, just what she was supposed to do, followed her little group onto the stage and did the dance steps she had learned. Amazing!

Juliana also loves to play dress up. She has several "Disney" style princess gowns. Sometimes she goes upstairs to get her pajamas on, and comes down with a princess gown over her pajamas. She also loves boots. Once she came down with a princess gown over her pajamas and Kendra's fireman boots on. She's quite imaginative!

Finally, it looks like there actually will be a follow-up documentary. It's in the works! Filming hasn't started yet, though. We'll let you know.

—Jeanne ("Party")