Merry Christmas!

Christmas is a wonderful time of year.   For a week or so, things seem to slow down, you enjoy friends and family, and appreciate the things that so often are missed as we race through life.   Last year at the Christmas eve service, I remember holding Lu during Silent Night and Jules and I couldn't believe our eyes.  Lucia was unusually aware of her surroundings as she looked around the room full of candles and seemed inspired by the music.  It was amazing.   Back then, Jules and I would cling to each one of those moments.  The moments where Lucia would acknowledge her mom and dad with a smile or a giggle as they were so few and far between.  Last Christmas seems like a lifetime ago!  

With a special kid, you watch closely for any small achievement and go wild when it happens.   This year seems to have been full of milestones both large and small.  Lu smiles and giggles almost daily now.  She rolls from her stomach to back with ease (almost ease).  She drinks from a bottle.  She screams when she's mad (its funny how happy her cute little temper tantrums make us).  She plays the piano.  She plays her drums.  She uses her legs in the saucer thing.  She uses oxygen only at night.  She stares into her mother's eyes and occasionally, after careful consideration lets out an "AAAAAAAWWWWW".   Her hair is almost long enough for a ponytail.  She loves music.  She will sometimes smile when I come home from work.  She'll bang on almost anything.  She sits in her bumbo.  She enjoys sitting on my lap at a dinner party watching our friends and family eat.  She loves taking a bath with Jules.  She loves going on a jog with the me and dogs.  She loves it when I tickle her face.  She loves to be in warm water.  While maybe small, these things are huge.  

Little Lu was also able to travel the world this year.  She went to Mexico, Philadelphia, Ohio, California, Washington D.C., Seattle, New York, Hawaii, and South Carolina.  Seriously?  Yes.  She met friends from all over the world at the PKS Kids Conference.   For Jules and I, these friends became family.  

In addition to traveling, our friends hosted the second annual St. Lucia party and raised over $40,000!  It's mind blowing knowing there are so many people that care for our daughter.  Lucia's cousins seem to especially care for her.  There is a baby in Juliet's belly that will also love his or her big sister.  

Thinking of the future can be hard at times but I know that Lucia and her friends are Angels.   I know this Christmas that God has a plan for us all.  Last year at this time, we prayed for smiles and giggles.  This year we are so grateful for those smiles and giggles and pray that our Lucia continues to be our happy little girl.   Merry Christmas

Love, Jason, Jules & our little Lu

White Christmas

Little Lu has been busy celebrating the holidays.  We've been baking cookies with cousins,  attended a mother-daughter tea party, a Christmas caroling dinner, a PJ drive party (aka Project PJ started by Kim-so great) , Denver Zoo Lights, and tomorrow she will meet Santa at the Anchor center for the first time!  Saturday night she stayed in with her first paid babysitter, as Jason and I went to an adult party, and to no surprise-she got along great.

cookies with cousins

lu and dee dee-who gave her the piano!

sweet irma and dee dee at christmas caroling dinner

all dolled up 

tea party! (bad double-chin angle for lubird-sorry bird)

Tonight we decided to whip up some chocolate and sprinkles covered pretzels and little Lu sat pleasantly, as she almost always does, in her little chair amongst the festivities.   We gave her some chocolate sauce and decorated away for about an hour or so.   I loved looking over and seeing her sing her little songs, make her sweet and funny faces, and just be by my side, my little angelic bird.

I thought about making cookies for many years to come and imagined her sitting there, looking and acting just about the same.  Little Lu, our precious little Lu.  She's so crazy sweet and having her by my side, with her being...just her, makes me smile.
I think about all the sweet children from Newtown that will not be able to join in Christmas ever again, and as we all feel, there are no words, so awful.  I think what a horrible time, for that to happen-ever, anytime, but right before Christmas, to always be remembered the most then, ruining Christmas for so many families.  But then I thought, maybe with all the love and family and friends around the holidays, maybe it can help make things seem just a little less painful, around that time.
So especially thankful for our little girl.  I'm so thankful for little children everywhere that are innocent and sweet as chocolate covered Christmas treats.  Next year, we'll have another little one to join in on the spirit and blessing of Christmas, a little boy or girl to sit beside our Little Lu.
Snow is finally in the forecast, but snow or no snow, I pray it's a white Christmas, as pure and peaceful as it can be, for everyone.

Lucia next to our cactus Henry, our Christmas tree

Behind these walls

Behind these walls is a place for parents and children to come together- to feel safe, to feel welcome, to make friends, to learn and to grow, and be so proud of your child as they achieve anything new.  Behind these walls you see children who can not see, who are visually impaired and often completely blind.  Children with syndromes, children born without eyes, albinism, children who see only by touch, many children who suffer from seizures, and many who have a list of other complications. Children that the average person doesn't see every day or even in a lifetime. Behind these walls is a place of refuge.  A place of no judgements, no shame, and a whole lot of love.  The Anchor Center for Blind Children is a beautiful place where many children start their journey, as early as a couple months old.  Parents are just beginning to cope, to try to understand, to pick themselves up and re-enter the real world with their very special child.  Just months into a diagnosis or condition and the Anchor center welcomes ALL families and children who can use their help.  The Anchor Center has been an anchor for our family.  I look forward to it every Monday and Wednesday.

We rotate through 3 different centers for 30 minutes each- motor room, sensory room, music-every other week, explorer room, light room and when weather permits, an activity in the well groomed outdoors, complete with sidewalks of Braille words and a greenhouse full of fragrant and tactile plants.   Once a month they hold a parent center where the children are taken care of by the staff and the parents have the full time to listen on a topic, or share a discussion.  The staff includes teachers of the visually impaired, speech, occupational, physical and music therapists; a family resource coordinator, developmental psychology consultant, teaching assistants and many volunteers, including an opthamologist.  The Center also hosts special events-like next Tuesday a special Christmas party with Santa and real reindeer for the kids-can't wait for that!

 There was an event this past Saturday called  'Dad's Panel'.  Both parents were encouraged to attend and staff and volunteers watched the kids.  I honestly thought it would mostly be good and insightful for Jason, (didn't tell him that :) ) but now I know it was for me too... Three dads of Anchor Center graduates each told their stories- about their child, how the Anchor Center helped, and life after the Anchor. 

Life after the Anchor Center.  The Anchor Center is for infants up to 5 years.  I know Lucia is not even 2 but hearing these words from one of the dads, 'I hate to break it to you, but you won't find ANY place as good (i think he even said half as good) as here".  I teared up hearing that.  I am SO THANKFUL that we even have the time we do at the Anchor Center but thinking about our little bird off in a school, where we'll have to advocate for her to get even a small fraction of the help she gets now...oh gosh, did it make me sad and nervous.   

It was a great few hours, listening to three wonderful dads, all with differently diagnosed kids, and all with stories filled with good, the not so good, the funny, and so much love.  One dad has 2 completely blind boys and they do MANY things with their dad including practice shooting guns and riding scooters-all under his supervision of course- but how cool is that dad?! 

Yes, behind the walls of the Anchor Center is truly an awesome place.  And although she is just over 1 1/2 years old, you bet I'm going to begin looking at programs for her for when the time comes.  If/when we move I want to be sure our Lubird has the right options.  I think we know now how truly lucky we are at the Anchor Center and finding another place like it may not be in the cards, but we can always try to plan ahead for our bird to continue to fly as high as she can!   Thank you Anchor Center for ALL you do! We LOVE YOU!

Awesome Donna-Therapist working with Lu

 The Anchor Center is funded by private donations and services over 400 kids a year!  www.anchorcenter.org

PKS Awareness Day

Today, December 4th, is recognized as International PKS Awareness Day.  Pallister-Killian Syndrome is represented by 4 short arms (a duplication of the normal single pair) of the 12th chromosome.  So, 12/4 was chosen as the date.  So far, about 5 states recognize this day, thanks to efforts by PKS Kids parents.  Someday, hopefully next year,  I can get Colorado and Ohio on board too!
The aim is to bring awareness, education and support to PKS Kids.  Recognizing another rare syndrome, and educating others, will hopefully create support, not just financially but socially too.    There are SOOOOO many rare syndromes, and so many special people, if we can all, including myself, just be more aware and open, then maybe someday it won't be so awkward or even scary to see those that are different.  As Jason once said,  they wouldn't be "special" if they were typical or not rare.  Simple, true, beautiful and bit sad, all at the same time.
I thought this would be a good time to share the video we made for the St. Lucia White Party 2012.  Jason and I made it to do just this- bring awareness, to educate and show those there what they were supporting!  It makes me cry every time-make sure you listen with the music.  If it doesn't pull up it's 'St Lucia White Party 2012 large'  on 'you tube'.

The little things can be HUGE

I remember seeing pictures of one of Lucia's little PKS friends, Isabella from Alabama, sleeping on her side.  I thought to myself "Wow! Isabella rolls and sleeps on her side! That's really cool."  I have also watched videos of Isabella bouncing like a maniac in her bouncer.  And as it is with all special kids- to see one achieve something new is so BIG- something that might be so little to most, it's amazing!    We have watched Isabella bounce and bounce and bounce and I have sent them a video or two back, "here's Lu hanging out in her bouncer...maybe someday Isabella can teach Lu her tricks".
Well.... Lubird has been enjoying sleeping on her side and rolls from side to side all the time! And Lu has shown us that bouncing most certainly may be in her future, which makes us think that standing might be too!!!!!!!!!  In the video below you will see her do some amazing things..here are a few...

she holds her upper body up-and did so for about 30 minutes!
she busts out laughing while playing and touching some toys!
Lubird bears weight, straightens her legs and does a wee bounce...TWO TIMES!

http://youtu.be/h74UFI3ZD2o

The little things are HUGE and she has made us so HUGELY HAPPY and proud with her new bouncer skills!  To see her play in her little station is fun in itself, to see her discover new skills...awesomely HUGE! Thank you for the inspiration Isabella. God bless you little LUBIRD!

Giving Thanks and...!

Little Lu, Little Lu, How we love thee Little Lu
Little Lu, Little Lu, You're our only girl, the one and only you!
But Little Lu you know we have a secret and the time has come to share
It's about someone special, probably not so rare
Little Lu's mommy is 3 months pregnant today
a little baby brother or sister is on it's way
WE'RE PREGNANT! WE'RE PREGNANT! IT'S WONDERFULLY TRUE!
THERE'S A BABY IN MY BELLY and next June, it is due!

Jason, Juliet and Lubird Dawkins would like give out a BIG tweet that we are expecting a baby!
Little Lu is going to be a BIG SISTER!

We are so Thankful for our baby bird, she is the light of our lives, and we know that her younger brother or sister will be her best friend.  They will learn so much from each other.

I am so thankful for our baby Lu, and so thankful for our baby to be.  And so thankful for us to be able to grow our family.  We love you Lucia.  We give thanks for you every day, and the amazing little girl you are, and we are especially thankful on Thanksgiving Day.

Happy Thanksgiving!

Love, God Bless

Juliet, Jason, Lucia, Frieda & Blue & wee baby too

Wait for YOU!

I've been slacking.  Slacking on blogging about my little bird and slacking on taking time for myself to exercise.  Tonight I did a yoga class, making it 2 days in a row and making it the first classes since the St. Lucia White Party weekend benefit class that my friend, Billy taught-making it TOO LONG AGO!  I already feel better!  I know that when I feel better, I can be a better mom, a better wife, a better friend and a better person.  As I stretched and moved, and focused on my breath and my movements, I felt a sense of calm and a sense of rejuvenation.  Since having Lucia,  every time I have taken a yoga class I think of her.  I think of how incredible the human body is.  How it can move, how it can balance and how strong it can be.  I think of how hard the movements are for kids like Lucia.  I dedicate each class to my baby Lu and I relish the feelings of the poses as we practice and flow.  I leave the class with a deep appreciation of how complex our bodies are, and I leave knowing that I want to move Lucia and teach Lucia how to use her body as best she can!
Little Lu works hard.  She uses her mind, her body and her awesome spirit to try to achieve what are the littlest things, so little we don't think about them, achievements.  Sitting, seeing, eating, bearing weight to stand, using arms to push.  Those are all soooo challenging for Little Lu and will be monumental when she one day is able to achieve those goals.  Lucia keeps a busy schedule to help achieve some of these goals, and she also loves the friends she has made, included with each appointment.  Physical Therapy 6x a month, Occupational Therapy (eating, using hands, playing) 4x a month, Speech (mostly eating right now) 2x a month, the Anchor Center every Monday and Wednesday from 9:30-11 where she plays alongside other kids and works on vision therapy with lights, sensory skills, and music class. And also the alternative therapy called ABM, which helps her make brain connections to her body, which we do 8x a month.  She is making progress, and although there may be some steps forward and a few steps back, she is working hard and most importantly, she seems to enjoy it most of the time.   One of the songs the teacher played in tonight's class was I will wait for you by Mumford and Sons.  It was the only song that I really listened to in the 75 minute class.  My little Lu,  I WILL WAIT FOR YOU, however slow moving that journey may be, there is not doubt that your daddy and I will wait for YOU!
The life of Little Lu is not so typical, but it's sweet and, at times, although it seems complex,  its actually quite the opposite, it is very simple.  She is as precious and laid back as ever and she is growing and getting more and more beautiful every day.  19 months old!
I am going to make an effort to continue to practice yoga regularly again.  I am going to do it for myself, because when I feel better I truly know that I am a better person and when I am a better person, I will be a better wife and mom, like my husband and daughter deserve.  I'm giving myself a little pep talk there :)  There is nothing I want more in life than to be the best mom I can to this little bird.
Tonight the teacher told us that she was 17 weeks pregnant.   I tried to do the math but then with a hunch, I just decided to ask her due date.  She replied, April 26th.  I shared with her, that was the date my daughter was born! and thanked her for a wonderful class.

me and my beautiful lu!

I'd also like to make a special shout out to the other little lady in my life.  My Lady Frieda turned 11 years old this week! I Love you my Lady Freeeeeds!

And Shanna,  we are thinking about you...and the loss of your sweet, sweet dad. He will live on through you.

Souls set free

end of the balloon release at Reyes' Memorial service-pink was his favorite color

Today I went to a memorial service for a 4 year old, Reyes Che Casias.  Reyes was the grandson of our next door neighbors, and he passed away from a rare form of Leukemia.   Prior to his diagnosis in February 2012, Reyes was a typical little boy who did typical little boy things, wrestle with his older brother, play outside, pretend to be a superhero, which earned him the nickname "Sonic".  Reyes passed away too soon, at the innocent age of just 4 1/2 years old.  Despite the unimaginable sadness of losing a child, it was a beautiful service and a celebration of his life.
As I sat at the service, I thought of another small child that passed away a few months ago, Hayley Randell.  Hayley was not a typical child, she had PKS.  In her 4 years of life, she was never able to run around with other kids, or play dress-up, or even communicate her wants and needs.  As most kids are with PKS, Hayley was severely disabled from head to toe.  She passed away from a heart complication and she too, passed away too soon.   I also thought of our other next door neighbor's daughter, Sophia Chappel, who passed two years ago, at just over 1 year old.  As I thought of Hayley and Sophia and Reyes my heart began to smile.  I realized that they all would soon be friends.  Friends in Heaven free to run and jump and play together, as equals.  Where there are no handicaps, no Leukemia and pain to overcome!  I know they will meet and they will live in eternity, free to fly, free to laugh, to live in happiness forever!

At Reyes' service today this was written in the program and I thought it was so beautiful, I'm going to pass it along to Hayley's family too.

Miss Me-But Let Me Go

When I come to the end of the road

And the sun has set for me, 

I want no rites in a gloom filled room

Why cry for a soul set free?

Miss me a little-but not too long

And not with your head bowed low,

Remember the love that we once shared

Miss me-But let me go.

For this journey that we all must take

And each must go alone, 

It's all part of the Master's plan

A step on the road to home. 

When you are lonely and sick of heart

Go to the friends we know, 

And bury your sorrows in doing good deeds.

Miss me- But Let me Go...

The pain of losing a child is something I could never imagine and something no parent should ever have to endure.  I'm so sorry for the loss of Reyes, and Hayley, and Sophia, and Maelynn and so many more...I know they are playing together, with their 'souls set free' in Heaven, and happy forever.  

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