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'.