Thursday, June 7, 2012

Heart Heroes, Unite

Last weekend, we raced from Sierra's preschool graduation down to Orange County for the annual California Heart Connection picnic (the events actually overlapped by an hour or so - so much for our new house rule "we will not be over scheduled" - hey, this mama is a work in progress - we'll get there eventually). This was our second year at the event, and it was SO fun. It was even more fun this year than last year, since we knew so many families there! So fun to watch these little CHDers getting bigger and stronger every year, continuing to defy the odds every day. It was really neat not just to spend time with close friends, but see old friends from our many hospital stays, and provide inspiration for parents just starting this journey with their little infants, dependent on feeding tubes and oxygen. The whole thing was good for my soul. And for the kids, of course. Sierra ran like mad with the older siblings, and Bodie LOVED it. Absolutely LOVED it - especially this little heart monkey they had for the heart kiddos. :-)
Me and the kiddos, enjoying the festivities...

We got to see lots of old friends. Here are the miracle boys, Bodie (2), Trevor (5) and Townes (3). Both of these adorable little dudes are post-Fontaners and I love how these guys all look like they could be brothers! (one of the dads standing around watching actually thought Bodie and Townes were brothers!)

Bodie finally got to meet sweet Lorelei, who has HLHS like Bodie and is just a few days younger than him. She and Bodie were at CHLA at the same time for quite awhile, but her mother Sabrina and I didn't actually meet until both kiddos were home. She's gearing up for her Fontan this Fall, so prayers sent her way would be much appreciated.

We tried hard to get the kiddos to hug and smile for the camera. Like I said, we tried... and we got Lorelei looking confused and Bodie picking his nose. Awesome. I guess the upside is we got him to stop emptying the coolers and moving the 20 packs of soda long enough to take a picture.
We finally caught a pic of them hugging - and then they promptly lost their balance and landed in a heap on the grass! Haha!

Is there anything more special than a fellow CHD sibling? Sierra with Townes's big sister Evelyn (the girls are 2 months apart in age and are great friends). I cannot tell you how much I love these girls. When they get together, fun and screaming ensues every single time. They are the epitome of what it means to have girlfriends at 5 years old. Love. Love. Love.

We also had an opportunity to take some time to do a special balloon release for sweet Travis, who should have been there at the picnic with us. He went to the picnic in 2010 and his absence was definitely felt both last year and this year.

Our little CHDers (Townes, Grace, Bodie and Trevor) gathered with Jeni...
They released the balloons...
And the balloons promptly went up in the air and stuck in the nearest tree...
...and stayed there for the remainder of the picnic. It was perfect. Travis LOVED trees. And it was as though he was saying "hey wait a minute! I'm supposed to be at this picnic. Like heck I'm leaving! I'm staying right here just as long as you guys are." Best.thing.ever. :-)

We love and miss you every day Trav.

Thought I would close with a pic of Bodie with one of our favorite HLHSers, Jeni. Jeni is 26 (almost 27!) years old with HLHS, one of the oldest living survivors of the Norwood surgery, and just an all around amazing Christian woman. We feel so blessed to have her in our  lives.

 IThis has been a rough week to be involved in the CHD community. I feel like every time I log into Facebook, I am reading about CHDers struggling with Norwood recovery, or battling effusions after the Glenn, or being rehospitalized post-Fontan. More than one has been on ecmo this week and one is passing as I write this. My heart has been so heavy all week. So it is weeks like this that I am especially grateful for events like this, for an opportunity to watch our CHD warriors run together, laugh together and play like typical kids. An opportunity to meet their dads, to hug and laugh with their moms. This weekend was all about HOPE and SUPPORT. To have families walk this journey with us that we are so close to is an amazing thing. And that makes weeks like this totally, completely, 100% worth it. :-) 


  1. What a great time! I love that the balloons hung around. That's just awesome! I'm glad you shared Jeni too. Seeing her is definitely an inspiration!

    Glad you all had fun!

  2. What great pictures. Sounds like a great time. Glad to see Jeni was there. I have heard interviews with her. What a story!

    All the best,
    George Landes

  3. How neat! Loved all the pictures! Jeni is awesome!