Little Lucia: But they're awesome!

Sometimes you gather to celebrate birthdays, or weddings, or holidays, or sometimes you may just gather to be with friends, to show your support. Sometimes your friends may know each other and sometimes not. When you are the reason for the party it can be a lot to take in, when your child is the reason for the party it can be an overflow of emotions and the gathering is more than a party. It's a blessing, a beautiful celebration of the human spirit. It is a testament that friends will be there for good times and tough times. Friends can be there to lean on, to pick you up, to laugh with, or cry with, when you see a friend in need. Last year, Jason and I were swept away at the St. Lucia White Party and this year, even as I played more of a role as a host, we were swept away again!

I was so happy, so proud, so amazed at the gathering of friends, at the emotions expressed and at the giving to the cause. White suits, white dresses, white shoes, even white hats, our friends, some old and new, and some friends of friends came together for our daughter's syndrome, Pallister-Killian Syndrome. They came to raise money, raise awareness, and to support our family, to show their support for our Little Lu. Over 85 generous auction items, delicious food passed around by cute waitresses dressed in white, 2 flowing open bars, a round of Silver Patron, a bar full of all white candy, live Jamaican music, and our beautiful Little Lu amongst it all.

Jason and I shared a few words, including one of our favorite- a writing by Emily Perl Kingsley, Welcome to Holland. We put together a video about PKS and PKS Kids, and Jason talked about where the money raised at last year's party went. That money helped create a medical registry which enables doctors and families alike to be fully informed of health issues and treatments related to PKS. Last year's White Party also partially funded the 2012 PKS Face-to-Face Medical Conference.

I'd like to also mention a special guest at the party. Caroline Hammond, mother to 8 year old Christopher with PKS, was also able to attend. Caroline, it was so special to have you there..you have been through so much in 8 years and Jason and I are so happy you are in our lives through our 'God Appointment' in January.

We stood in front of our friends, over 225 of them, and shared a bit about what is now our daily life. We saw our friends listen, and we saw our friends laugh and cry. We saw our friends care more than we could have ever expected.

Thank you to each and every person for being there, really being there, to support a cause that was no part of any one of our lives over 17 little months ago. Jason, Lucia and I are here. We are in our world with a different and sometimes very difficult situation and our journey has just begun. The kids affected by Pallister-Killian Syndrome are extremely handicapped. And that makes our family one that will have to adapt. One that will look different, act different and even sound different. But after the St. Lucia White Party I feel so happy, so confident, so blessed that our friends are there to embrace that difference. Thank you for making us feel this way. Thank you for being a part of something so rare and so different. As Jason quoted from another PKS family, "Our lives aren't normal, but they're awesome!"

Thank you Traci Radcliffe, Aimee Beatty, Ryan Smith and Kara, the Killeas, Tom Quirk and Megan, the O'Donnells, and Cammie MacMillon, for flying on a jet plane to be by our side! And to my co-hosts, my friends, the St. Lucia White Party team- Elyse Slayton, Kim Hicks, Laura Huff and Megan Gilles, I love you girls so much. Thank you for turning this situation into a beautiful celebration!

Thank you to all that attended, to all that donated, to all that gave to the silent auction, to Pura Vida for sponsoring, to all that helped! TOGETHER, we raised over 30K and still counting!!!!!!! This money means so much to PKS families in need, to research for PKS, to future PKS conferences, and this money shows that you all care, that the human spirit is good. It's truly is quite awesome! God is good!

Andy, Tareq and Jase

Me and me Mom

let's hear it for Pura Vida for being the lead sponsor!

the Guerins

the Monihans

O'Dwyers & Nicholsons

Cammy, Sara, & Shane

Kimmy, Laura & Elyse

Aimee Beatty is in the house from TX!

Michael, Eddie and Otis

The Gallagher Girls- thank you Maura for the great aprons!

Oats, Jeannine, Laura, Corey and Scottie

Heils, Vali's

Ashley & Lee

Herman Wynter!

MC's- Lisa and Tonya

my awesome brothers- Andy and Joey!

hosts minus the caterer-Kimmy, stop working!

Winners of the IPAD3! the Winklers

White Candy Bar

the Killeas from New Jersey

Ana and Jenn

Garces'

Kara and Ryan

Sue, Katy, Tonya and Tate

Tim, Jane and Taryn

the beautiful greeters- Kelly and Julia!

Wafaies

part of the silent auction

Jordan, Darlene, Jane, Me, Taryn and LU!

Priests!

Ali Vali with some skills!

Lyn, Gretchen and Elyse

my dad and his girls

Cayla, Mark and friends!

Maria Tuschall and beautiful lu

Traci, Caroline and more..

and Saturday with Traci from CA!

Lastly, I'd like to thank Billy Potocnik for doing a donation yoga class to close the event weekend in beautiful Cheeseman Park. Perfect ending to a perfect weekend...soooo awesome!