Sunday, June 28, 2009
Well, the EBMRF picnic was today, and we packed up the minivan and went for a trek up to Malibu. It was at a cool outdoor shopping mall (although, much smaller and hipper than a "mall" per se). The weather was a little warm, but there was plenty of shade. it was extremely well run, with TONS of activities for kids. Ali got her face painted, planted flowers, filled a butterfly shaped glass jar with different colors of sand, made and ate a cupcake, and danced away the afternoon trying to master the hula hoop. She's got a ways to go with that. Free valet parking, free food, free giveaways...it was a nice event.
We got to meet several EB families from Southern California with kids from 5, 8, 10, 11, to a woman who is 30, all with DEB. Most were more severe cases than Bella, and it was a little frightening to see the fused hands, and flaky, bandaged arms (and legs) and two wheelchairs. However, we met two kids who looked and led rather normal lives, one of which lives in Irvine, the city next to ours!
We all exchanged horror stories of nurses putting tape on our babies' faces and how the docs don't know as much as we do about this bizarre and rare disease. Out of all of Southern Califronia, there were maybe 5 families from the region today, all who knew each other.
It is a small brotherhood/sisterhood/familyhood...community. The parents couldn't have been nicer to us, and each offered their help with anything.
Ang's high point however, was the help she received in the ladies room while changing Bella. Women were ogling and cooing over Ang's shoulder as she was changing Bella, and then one voice said, when hearing Bella squak, "That's my favorite sound in the whole world!" The woman stepped up and helped Ang clean/straighten up...who was this woman? Brooke Shields.
Yup, Malibu did have a few stars in attendance today. We also ran into Tori Spelling and Denise Richards. I was yaking it up with some guy at one point, and we were talking about the superiority of the balloon lady, and how we'd never seen anything like her work...a few minutes later, I see people taking pictures with the guy...I still have no idea who he was. The interesting thing about the social dynamic of the scene was that we live in Orange County, where at most high-end malls, no one makes eye contact because they all think they are the most important person there anyway and filled with self importance. At this mall, everyone was making eye contact with each other to see if the other person was someone they knew from TV. I never had so many strangers make eye contact with me...only for a second before they realized I wasn't REALLY Brad Pitt after all. I know, I know...A LOT of double takes...yeah, in my dreams.
All in all, it was nice to meet some parents who KNEW...one guy and I talked about what it was like having your wife in one hospital and your infant child in another...the feeling that no matter where you were, you weren't at the other. I remember walking the tunnel alone that connects St. Joe's and CHOC time after time in those first 3 days in a daze...it was so nice to meet someone else who had made that same voyage.
Ultimately, we learned today that you learn from other parents whose kids are older than yours...NOT from the medical establishment. Then, when a new baby comes along, we'll help its parents the same way we're being helped. That's what Leslie's trip out to see us was all about. Solidarity.
Thanks to those who encouraged us to make the trip today. We were on the fence, but your words of encouragement pushed us off. THANK YOU!
Oh, and to see a new video of Bella, Ali, and Mommy that is SUPER CUTE, go to
Good night and God bless. Tomorrow, we meet Bella's GI Doc!