Adventures in Hilton Head

Being a mom to this little Lu is quite the life!  Lucia and I just returned from a great family vacation in Hilton Head, SC.  Last year, my friend Megan's aunt, donated a week at her beautiful condo on Hilton Head Island for the St. Lucia White Party.  My brothers family won it and redeemed it last week.  My parents decided to meet them down there...so Lu and I could not resist some fresh ocean air and time with family too!  Although we live in Denver with my brothers family, it's sometimes hard to spend quality time together.  Hudson, Marco and Charley are always so sweet to Lu but we understand that it must be confusing for them at times to see how different she is.   S,o when they have a chance to spend extended periods of time with her it's really nice to see them interact.  They see her when she's sleepy, when she's happy, when she wiggles, when she eats, and more!  Once you spend a day with Lucia or a special person, I think it's hard to not see how truly beautiful they are and see that they have feelings and likes and dislikes and personalities just like typical people do...they may just express it differently.  Anyway, it was GREAT.   

Lucia also got to meet some of my close friends.  My best friend from growing up, Brande Lamb and her partner Brandi Mackenzie drove over for the weekend from Asheville NC to meet up with us and meet Lu for the first time.  Brande and I met when we were just 2 weeks old...and remained close friends since we could remember, she's like family. So having Lucia meet Brande and her partner was inevitable, but they made it happen last weekend.  Thank you so much Brande and Brandi for your visit!  

Other highlights of the trip included introducing Lu to Megan's mom, Margot Gilbert, who lives on the beautiful island and Courtney 'Coco' May!  Courtney was the amazing friend that did donations to PKS in Lu's honor in lieu of gifts for her 3rd old daughter, Alden this summer.  It was such a bonus to see both Margot and Coco!   

Margot Gilbert and Lu

Courtney and her kiddos Alden and Thomson

Lucia had many NEW adventures on the island...I'll let the pictures speak for themselves.  

A great week of family & fun!  We landed back in Denver yesterday, October 26th 2012, for Lucia's 1 1/2 year birthday AND her daddy's birthday!  Lucia and I missed you so much while we were away and realize even more how lucky we are to have you be husband and daddy in our little family.  We love you so much!  Happy Birthday Sweetie! 

And lastly we'd like to continue to say prayers and send strength to Shanna's dad and little Reis Casias.  We'd also like to extend our prayers to a close friend who was just diagnosed with breast cancer-we know she'll be ok, but her life will be forever changed.  And with a heavy heart we say good-bye to Maelynn Keefer, who passed at just the tiny age of 3 months old from complications with PKS.  She went through countless surgeries and fought for her life with her parents by her side EVERY moment of her little life.  She is now free to fly in Heaven!  Count your blessings.    As my friend, Dawn Sierens Fable just posted on fb, "My mom always reminds me that 'each day is a gift.' So very very true."   So true, no doubt.

The Squiggles has arrived!

Our first official piece of 'equipment' , the Squiggles stander, has arrived for our special little lady and boy is it cute!  It has pink padding, a mod desk for playing, and the best part is...Lu seems to like it!!!! We don't know if it will indeed improve her ability to bare weight, or improve her bone density, or help with the development of her hips..there are mixed reviews about all of those things.  However, one thing for sure is that it gives her a new perspective, a bird's eye view, if you will :) , to see out the window, to look down at her dogs, to stretch her legs, to socialize, and one day to be at the same height as her peers in school! I can't believe I'm mentioning our little Lu in school- so exciting, cute and a bit scary to think about...but that day will come.   We do about 2 10-15 minute sessions per day, sometimes shorter, depending on her mood.  The stander will grow with her, and has wheels to push her around so this little Lubird can be on the move.  Lucia 'needs hightops' to help support her ankles, so we now also have the cutest high top shoes to complete her standing ensemble.  We're so proud of you Lubird!  Our hope is that she will start to push with her feet, straighten her legs(her knees stay a bit bent now), and one day she may STAND when she is out of the stander!  Right now we're just watching her get used to the contraption- she even hits her favorite toys when she's in it- a little computer and her piano.  Check out the little lady in action!

proud parents-first day

first day-ok, if you need your bottle to be happy we'll give in..

looking out the window

getting used to my new shoes!

Thanks Rebecca for all your help with the Squiggles!  Thank you cousin Jim, wife Lara and family for visiting us on your Thirst Relief tour!  Thank you God for giving us access to medical equipment like this and for all her therapists to help, guide and cheer Lucia on along the way!

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