Sunday, June 28, 2009

EBMRF Picnic

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 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/ 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 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 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!

1 comment:

  1. Comments from Care Pages site:

    Posted Jun 30, 2009 10:23pm
    by Leslie Rader

    Hi there

    I'm glad you had a good day and learned from other families!

    Posted Jun 29, 2009 11:43pm
    by Danae Thomason

    She looks beautiful! What an incredible day for you all.
    Posted Jun 29, 2009 10:12pm
    by Kelli Kelly

    What a fantastic day for you all! Did you see Courtney Cox?!
    Posted Jun 29, 2009 1:06pm
    by Sheila Marchetta

    Glad you went to the picnic. There is something very special about being with people "who get it." Love the pictures. How beautiful Ali looks with her face painted. In fact Ang, Bella and you all look great!
    Always praying, and especially about visit with the GI doc.
    Love you all,
    Posted Jun 29, 2009 12:34pm
    by Robin Setto

    Dear Tim, Angelique, Ali and Bella,
    No matter what you are going through in life it is good to know that you are not alone and that was proven to you at the picnic! All of you are so strong to put yourselves out there! You so deserve good people around you as your family is one of the good ones! Our intense prayers continue, stay strong...
    Michael and Robin Setto
    Posted Jun 29, 2009 12:32pm
    by Russ Baldwin

    We are glad you have found such a great support group. Praying, Praying, Praying.
    Russ & Jen
    Posted Jun 29, 2009 11:56am
    by Carolyn Rhinehart

    I am so very happy that you decided to attend the picnic. I knew that you would enjoy it. What a beautiful family you are. I love you.

    Posted Jun 29, 2009 11:23am
    by Cathy O'Neil

    Keeping you in song and prayer!Love, Cathy
    Posted Jun 29, 2009 10:01am
    by Conde Rogers

    You can hear the healing love and miracles in you all. Love, Conde
    Posted Jun 29, 2009 9:07am
    by karyn reddick

    Tim and Angi, I continue to pray each day for all of your little family. Bella is really blessed to have been born with you as her parents. Please take good care of each other. I am so happy that there is a support network. You are in God's hands and God's work is evident in your spirit. Karyn
    Posted Jun 29, 2009 8:42am
    by Jan Pflaum

    Isn't it amazing how many good, kind and sweet people there are out in this world. You don't quite realize it until there is a crisis and BAM, they show up out of the wood work,what a blessing...........
    We are so excited about your trip yesterday, meeting all those wonderful and helpful people, you now have a bigger support system.
    It is Monday, and we hope you have a good week, somehow we feel it is getting better for all of you everyday. Give hugs and kisses from Uncle Bill and I to your two precious angels. We think of you often and keep praying for you and your family. Love, Uncle Bill and Jan
    Posted Jun 29, 2009 7:10am
    by Albert Alva

    ever onward and upward
    Posted Jun 29, 2009 1:09am
    by mary amen

    So happy you had a great day. You all deserve it! Next thing you know those days become weeks, months and years. :-)
    Posted Jun 29, 2009 12:46am
    by Barbara Reuer

    God sends us messages everyday ... I'm glad you listened and followed through. Look at the great "support" network you have created for yourselves. ...Brooke Shields, well that's pretty good. :-)