Our little family

Jason loves to cuddle up next to me and Lu and say "look at our little family, i love our little family".  After he says that, I smile because it's so true, we love this little family.  We often get asked, "do you think you'll have any more kids?" Sometimes,  it's a "oh geeze, do you think they are scared to have more kids"  tone.  We may let them know that our chances of having another child with PKS is not a concern, it doesn't work that way...it's totally random and occurs for no known reason.  Our chances of having another child with PKS are no greater than anyone else having a child with PKS.    Sometimes, it's with more of a, "we think you should" or "you deserve to have a 'normal' child" tone.  And sometimes, people just ask like they would ask anyone with any kids.  The truth is we do talk about having more kids, but not because Lucia is different.   It is unimaginable to think Lucia or any child with a handicap would believe they weren't good enough, just the way they are!  We are completely,  perfectly fulfilled with our unimaginably amazing Lucia!!  We used to talk about having 2 or 3 kids but sometimes you're thrown a curve ball and the game changes.  Well, our game did change and we feel like we hit a home run!  When we answer the "another kid" question, we answer with what our real answer is,  "we'll wait and see".  

sitting like Lu 

What we do know is we are SOOOO in love and whole heartedly completed with our girl named Lu.  Her sweet little lips, and eyes so blue.  Tonight, as I put little Lu in her crib, she was so content and kicking her legs, looking around with her big blue eyes, and she just exuded happiness.  I was cuddling and tickling her and said, "do you like your family, do you like this little family you chose".  I know the answer is yes.  I know she is happy!  I know she loves me!  I know she loves her daddy!   I know this is the perfect fit!!

Maybe if Lu was a typical child we would feel the same way, we'll never know, but that doesn't matter.  We know that Lucia would be a great older sister, and we know it would be amazing to have more, it's not that.  We just know that we do not need a 'typical' child to heal us or fix us or help us.  This little Lubird sings us the most beautiful songs, and teaches us the most beautiful story of love.

As Jason loves to say to Lu, "you're so perfect, you're so nice, you're so wonderful, you're so beautiful, and that's why you're the most popular girl in school." He's so right, Lu you are a dream come true!

Shanna, we are praying for your dad to keep fighting and be strong!  And little Reis Casias, we are thinking about you all the time and praying that God is with you and your family through this most difficult battle and suffering.   And Little Lu, thank you for being YOU!

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!

me, kimmy, mom, lubird, traci and laura

traci and billy, kimmy, traci

ahhhhhh

Success!

The Second Annual St. Lucia White Party honoring Little Lu benefitting PKS Kids was a HUGE, FABULOUS, BLISSFUL SUCCESS in SOOO MANY WAYS!

I'm still on a high, still on overload and still so overwhelmed by all the love...but I wanted to blog JUST THAT, right now, about the amazing night.  More to come, for sure!

Love to my loving, caring, fun, beautiful friends who made this possible!

Little Lu, you make us so happy...  

Can't Wait!

Almost 2 full weeks away... As sad as it is for vacation to end, it's always nice to come home.  Home to our dogs, home to our comfy bed which usually gets bombarded by our dogs, home to Lucia's nursery and cozy crib, home to our big soft couch which also usually gets bombarded by dogs, home to our humble little abode, and home to plan for a party that is just 1 week away!
The St. Lucia White Party.  The St. Little Lu White Party.  It's about a little girl that came into our life a little less than 17 months ago.  My dear friends and co-hosts of the party have been doing more than I can say...and Jason and I couldn't be more excited.  There will be live music from Jamaican native- Herman Wynter, Caribbean cuisine by the Saucy Chef-Kim Hicks, a Candy Bar by Elyse Slayton, a most generous array of silent auction items, open bars, raffle items, information about PKS Kids, and some other festivities throughout the night.  And beside us, amongst friends, the guest of honor-our little girl.  Our little St. Lucia.  Little Lu, Lubird, our Light.  I love planning this party with my friends-Kim, Laura, Megan, and Elyse.  I love seeing the guest list grow.  I love helping design the perfect White Party for PKS Kids.  I even love asking for silent auction item donations.  And I love that this is all because of a little angel named Lucia.  I'm blown away so many times by the generosity, the excitement, the help, the planning...it sometimes seems like a dream.  It's truly amazing.
One week from today we will have the Second Annual St. Lucia White Party to help raise funds, awareness and spread the love about these precious kids affected by a crazy syndrome called Pallister-Killian Syndrome.  We can't wait.  I'm so proud of my little girl.   I love you Lucia. I love all that make this night possible...

Fall 2011 in her White Attire

Fall 2012 giving a beautiful smile! She's growing up

Thank you Jon, Courtney, and beautiful baby Imogen for a great visit at your home-you're a family!  Thank you Aunt Katy for a perfect but too short of a visit in your home. Thank you also for your donation- it was so great to finally have you meet Jason and Lucia.  Thank you Mario and Linda for a PERFECT paradise vacation.
Thank you Richter family for the Bee Mighty t's www.beemighty.org- check it out! And last but not least- thank you Lizzie and Lucy Bobilya for the new cozy pj's for lubird!