"Thank You Lucia!"

My sister in law, Ashley, called me earlier this week and had a glowing sound in her voice.  She said something like this "I just wanted to call and say thank you Lucia for introducing me to a beautiful world!" She went on to tell me about two people she had met that day.  That afternoon, Ashley was walking in her neighborhood park and saw a man pushing his son in a wheelchair.  With her daughter and Tank the pug by her side, she approached and introduced herself to them.  Tank was very loving, sweet, and of course, extremely entertaining, as pugs tend to be, and it brought a smile to the handicapped boy.  Ashley visited with them for a little while and was so happy that she did.  The boy was non-verbal but seeing him smile and seeing his dad appear touched that she made the effort to come over made Ashley's day.
Then later, Ashley was out for dinner with her family and saw a disabled woman,also in a wheelchair, at the table close to theirs.  At some point she picked up Taylor, their 11 month old daughter, and stopped by to say hi to the woman and her family.  They smiled and the woman's family talked to the girls and thanked them for coming over to say hi.
Ashley told me, before Lucia she would have never done that.  "Lucia has opened up a whole new world" to her and she loves it.  She loves that she isn't scared or hesitant anymore.  She loves that the people she met were excited she came over and no doubt, it really made her day as she sounded extremely lit up and happy on the phone when she called me.  Brought tears to my eyes.
I know growing up, there was no one like Lucia in our lives either, and I too was scared and hesitant to approach someone different, especially if there were other 'typical' people around-what the heck?! Who knows, but I know now that what Ashley did by 'getting closer' just with a simple friendly interaction is a beautiful thing, and yes, I agree with Ashley too, a more beautiful world.
Thank you Ashley for sharing and Lucia, our Lubird, thank you for being you and being ours!

Tank the pug and Kayla as a baby (now almost 3)

Ash and Little Lu

Sweet Taylor that day at the park

Last weekend we also had the pleasure of cousin Imogen visiting with her parents, Courtney and my brother Jon.  So cute to see all the munchkins together.

Love you Kim and Court!

not sure why these pics are so small..?

And we would like to welcome Lincoln Zapata into the world-almost a week old! Lincoln was born to my sweet friend Katie Shean and Dave Zapata, and he is having a rough start.  You are in our prayers sweet Lincoln and we hope they get you feeling better VERY soon.

10 Seconds!

One

Two

Three

Four

Five

Six

Seven

Eight

Nine

Ten

and some...


A little over Ten seconds!  That is how long our Little Lu 'stuck' a sitting position last week and we have been close or as good to that, every other day or more since! In about 6 weeks she will turn 2 and how amazing if she could sit by 2!  It's just a number and just a milestone, so no big deal if not, but watching her progress...rocks our world.  

More smiles, more giggles, more babbling, and now closer to sitting than ever before.  More in love every day.   Our little girl also had a sleep study last Monday and got hooked up to all sorts of fun things...we don't have the results yet, but I'm not worried..just a routine check-up.  Have to share her pic though..you look great LU!

TWEET TWEET! as her daddy likes to say 'She is so stinkin' SWEET'!

Thank you to all the girls that purchased Stella & Dot jewelry for PKS Kids and Lu.  Thank you Jeanine Levinson (our favorite mommy and me yoga teacher) for the fun wrist and ankle jingle bell bracelets.  Thank you Anna for sharing your experience with my Mom!  Thank you cousin Jim, Lara and family for your stop in Denver-always great to see you and we're loving the oils!

second cousins!

Isabella Desantis and family, you are in our prayers every day.

And starting tomorrow, for the weekend,  all the Hicks cousins will be together for the FIRST time!
Hudson, Marco, Charley, Lucia and from San Francisco..Imogen-yippee! So excited to spend time together!

And not to forget the wee baby girl in my big belly!  You are kicking up a storm and we can't wait to meet you, love you and welcome you to our world in less than 12 weeks!

Until next time, Lu is just going to be kicking back....

Thank you God for our sweet bird.  We love her so much.

I choose beauty.

It's been a great couple weeks.  On February 13th, my friends Kirsten and Megan, hosted a Stella & Dot Jewelry party with a portion of the proceeds going to PKS Kids.  There is an online continued sale happening all of February-so thankful for my friends and their support of our little Lu. To view the collection or shop the Trunk Show online click on link http://www.stelladot.com/ts/wxdm5

And Lucia has been very happy, giggly and SO chatty!  Jason and I have talked about how we could listen to her sweet songs for the rest of our lives, oh it is the most beautiful music to our ears!  And tonight, we just returned to Denver from a 'babymoon' in Arizona.  Yes, you can find about any reason to have a party, ie. gender reveal party, or a take a vacation, a babymoon (a trip before a baby comes and changes your life).   We had a 3 night stay in Scottsdale with great weather, plenty of relaxation and quality family time.  It was probably our last vacation with just the 3 of us for a long time, and it was really nice!

While on our trip, we, of course, introduced Lucia to many people we met.  She received so many compliments- "what a good baby she is", and "she is so cute".  We also noticed something we haven't before, people are noticing that Lucia is different.  Maybe we just haven't noticed before, or maybe she's just getting bigger and that time has come.  Whatever is it, it doesn't matter, and I can't say that it hurts, it's just different.  Lucia has a rare syndrome that affects her vision, hearing, brain, heart, lungs, stomach, muscles, and on and on and yes, it affects her appearance, her facial features too.   Jason and I are so proud of our little girl.  We are proud of her accomplishments to drink a bottle, to smile and giggle, to roll, to play with her piano, to make her loud and sweet noises, and we are so proud of her beautiful face and sweet and soft body.

I had someone ask me a simple question about Lucia.  I can't recall what it was, but my response was one that would normally invoke another question, but instead they smiled and looked at Lucia as though they almost expected it, expected something to be different.  That was when it started to sink in.  Then, on the way home from the airport, Jason said what I had been thinking, "I think people can tell that Lucia is different."  He went on to say that a young boy at the airport was staring at her..   My response was just what I think, 'people like to stare at beautiful things'.  I choose beauty.    She is our beautiful and rare bird.   She is the sweetest thing we have ever touched, held, seen or known, and she is ours.

What makes the world go round is our uniqueness and in Lucia's case, she is rare and that is a beautiful thing to us.

This Thursday marks International Rare Disease Day, falling on the last day of February (last year is was on the rare day of February 29th).   A day to celebrate differences, a day to celebrate the beauty of every person, a day to maybe reach out to someone and show your support, and a day to not be afraid of our differences.  I already put this video on Lucia's blog last year but I wanted to include it again, as it is so real.   It's called "Get Closer" and the name says it all.  

http://youtu.be/zFWr-CKMWGY

Don't alienate someone because they look different, embrace the differences as hard is it may seem.  Maybe that someone could turn out to be your best friend, or soulmate, or someone who just teaches us about the human spirit.. and that is most definitely a beautiful thing.

Perfect timing for LOVE!

As our doctor visits have slowed down, it's nice to be reassured, every 3-6 months or so, that Lucia is doing well, or heading in the right direction.  Today we had a cardiology visit, a follow up from 6 months earlier.  When Lucia was 1 day old, cardiologist Dr. Jane Nydam visited Lucia in the NICU and found she had high pressure in her lungs...around 80.  That was the first 'marker' something was not quite right with our new baby girl.  Dr. Nydam has always been very sweet, reassuring, smart, thankfully uses layman's terms, and in the end has always made us feel good.  We have visited her practice about 6 times and Lucia's heart has continued to improve.  Her hole has closed, her pressure has continued to go down, and some other minor defects have not changed for the worse, and shouldn't ever be a serious problem. Today, after her routine ECG/EKG, Dr. Nydam told me that Lucia's pressure in her lungs (pulminary hypertension) has elevated from a 30 (6 months ago) to a 40.  This could be due to a number of reasons....it may be that she has some fluid in her lungs.  The fluid may just be a simple result of Lubird being sick a couple weeks ago...no big deal.  We are going to go back in 3 months this time, instead of 6, to make sure it has NOT continued to increase.  Then, she also mentioned that the cause could be aspiration (swallowing food into her a lungs) or that she may need more oxygen all the time.  BIG BIG sighs.  I try to assume the best when I see that Lucia seems good, but there is always a part of me that is scared to hear what the doctors may see and say... the dreaded 'possible aspiration' or more oxygen...  BUT for now, I need to remember that she was sick, and that could just be the issue.  I pray she is back down to a 30 or even better a 25 on our next visit.   I look at our precious bird and don't want to do anything but love her, in the least medically assisted way possible.
I sent out a little video of Lucia talking this week and my dad called back and left a message about how great her little video was, how 'she really wanted to say something', how she is like their beloved child-like pug, Henry (a dog could not be more spoiled or loved than Henry) and how "everything they do is the greatest".  They are just here to love, and to be loved in return is all they want.   We love her so much and pray our Lucia continues to improve, and grow, and allow us to love her and have her feel the love. This video is one of my favorites! She is so full of intention and truly does have something important to say!

Tomorrow night, my friends, Megan Gilbert and Kirsten Vali, are hosting a Stella & Dot Jewelry party for PKS Kids.  "Lucia's Love Bunch" on Valentines week.  I continue to be amazed at the love surrounding this little girl.  It could NOT be better timing really, a not so perfect cardio/heart visit, followed by a Lucia Love party...and Valentine's Day-what could be better medicine for a heart!

Happy Birthday to my Dad today, February 13th.  Thank you for your messages and encouragement and so much love for our Lu.  Thank you to all those that are shopping for Lucia and PKS Kids with the jewelry party-going on all month here-  http://www.stelladot.com/ts/wxdm5 

Thank you Sebas and Javi Garces for the special Valentine card in the mail for Lucia (her first valentine!) And THANK YOU Bob and Kara for coming down on Sunday to meet our family.  Kara is just about 5 months older than Lucia and also has PKS. More to come on these new friends.  It was soooooo great meeting them, she is doing amazing and couldn't be cuter!

You kids truly are "the greatest". 

LOVE our LU!

http://youtu.be/wSn9MQ_1uLU
(above video of our lubird just doing her sweet thang)

I know I've said this, but I love this baby bird, our baby Lu, our Lubird, LUCIA!  She seems to have had a full recovery from her bug last week and this week she has been full of giggles, baby babbling, smiles, some new attitude and lots of LOVE.  I love her noises, her coos, her long winded vowel sounds.  I love the way she makes crazy sounds with her tongue, her lips, her cheeks- and then giggles because the sound vibration must tickle her.  I love watching her hold her hands, clap her hands and pat her belly.  I LOVE this LU!  I love how she entertains herself.  I love how she rolls from side to side.  I love how I can trick her into sitting better if I put my fingers in her ears like a little ear massage.  I love how she YELLS when she is hungry!  I love the PKS Kids forum of all the silly & sweet things our kiddos do.  I love the bottom of her soft feet, they are like little satin pillows!-they REALLY are!  I love how she cuddles up next to me when I pick her up.  I love how I have to pry open her grasped hand hold to buckle her in her car seat.  I love this BIRD!  I love how Jason and I love her more each day.  I love kissing her cheeks, her lips, her belly, her soft head.  I love watching her wiggle around.  She is so content and so beautiful.   I love feeling her baby sister kick in my belly and daydreaming of how her little sister will look after and love Lu.  I love this LU!

The life of a 21 month old is typically hectic and full of chasing, baby-proofing, maybe even disciplining but with this Lu, all we do is love.  She goes where we take her and she has been singing more and more along the way.  I would love for her to go places when she wants, on her own,  even sit up on her own, but for now...we just love and watch and play and relax..we do work her out too!

That's it, that's all, I just wanted to update about YOU, little Lu!

You truly are a dream come true!

Eyes so blue, like the Colorado sky,

I love you so much it often makes me cry.

Lubird, Bluebird, watching you,

is like watching a beautiful bird bloom, through and through.

Lil sick baby bird

not feeling so well

Our little bird has caught a bug.  I know that kids get sick, and fortunately she has not been sick really AT ALL in her wee life, but this past week she has been under the weather.  Coughing, congested, little fever, little fussy, and vomit 2x :(  .  One throw up was last week and today she had a big one in the car (her first time to get sick in the car)  When she was just 1 month old we were given strict instructions..use the nebulizer, inhaler, vibrating compression vest, suction machine, all 2 or more times a day, and then we have her oxygen and feeds..  We followed those instructions for a little while and then made the decision they weren't necessary all the time.
Today, we had a regular check-up with her pulminologist, the fabulous Margarita, and she got to hear Lucia cough and not look her usual self...needless to say, Margarita gave me the beat down and told me to get on the routine while she is sick.  So, tonight we got after all the business and we'll continue doing so until she is well.  That includes oxygen during the day, sigh.

visiting Margarita with a stern look.  

As I dusted off the medical equipment and brought it out to Lu, I was so thankful this wasn't our everyday routine.  I was also thankful we do have all this expensive sh*&-... to use during sick times and hopefully prevent the sickness from getting worse.  I've also been dabbling in some alternative holistic meds, essential oils, and she is getting those too.   We are giving her all the bells and whistles to rid her from this bug.

When she gets sick, I get a sick feeling in my tummy and start wondering... are her lungs ok, have her oral feeds been safe, a whirlwind of questions buzz through my head and then Jason either assures me that she's fine, or I think it through and realize that she IS fine.  
Kids get sick, and Lucia has been a ROCK STAR so far..just a little bump in the road.  I'm sure next year around this time, I may be tending to 2 under the weather girls (can't help but smile as I write that),  and it's just a part of life.

under the weather but still so sweet (in her boy cousins snazzy pj's)

Lucia, let's shake this bug and get you back to your therapies, and un-coughing, good oxygen level self.    Sweet dreams little girl (she's nested up next to me since daddy is gone on business this week).  I love you so much my sweet, sometimes fragile, but maybe not as fragile as I my think,  baby bird!

morning cuddles w/ dogs in mom and dads bed

We miss you daddy, good bye to my dad from his visit and hello to my mom if you're reading this on your pura vida trip!  And Anna, hello in Thailand!

We're having a ......!!!!!!

We know it doesn't matter, girlie pink or boy blue.  

We know they will love our little lady Lu.  

A brother or sister, it was out of our hands

We just knew we wanted a sibling for Lubird land 

We're halfway there...in June a new baby will be here

to have, to hold, and to love- another blessed year!

And now, five months in, we know what it will be 

watch the video, of our "gender reveal party"

the inside of a cake was baked to be pink or blue

only the baker and the ultrasound Doctor knew..

Jason thought he KNEW but that turned out to not be true!

(warning: scrolling down further will reveal the sex)











It's a GIRL, It's a GIRL!
Hip Hip Hooray Little Lu
We know you will love her and she will love you SO much too.
Sisters!!!  Something I never had, growing up with four brothers..Jason and I are so excited!

Thank you family and friends for sharing this special occasion with us! We are so happy that my brother Phillip and his wife, Anna, could also be here from Ohio.  Thank you Cake Crumbs Bakery for making the special and VERY delicious cake! And thank you Darren and Colleen O'Donnell for donating your WINNINGS (bets were placed and raffle was drawn for guessing the sex) to PKS Kids!

SISTERS!!!! I LOVE PINK!

Aunt Anna & Uncle Phillip

Sweet Dylan

It's been a little while since I've written on Lucia's blog.  I have wanted to write, to say I'm sorry, to say how sad we are, but I also was a bit speechless.  Our new friend, the one with the PKS child, that found Lucia's blog, and wrote to us about hope, they lost their son.  Dylan was just a little over a month old and he lost his fight with Pallister-Killian Syndrome.  I know that PKS has many, many complications, from head to toe, but I honestly forget sometimes, how lucky we are that Lucia is, at this moment,  so healthy and happy.
I was strolling Lucia and walking our dogs when I received the email from Dylan's mom, Amy Beaton.  I was shocked, speechless, sad, even mad at myself for thinking that everything would be ok with their son.    I'm not sure what he exactly passed from but I just didn't expect it.  When I saw Dylan's picture he looked so much like our Lu at that age, so angelic, so beautiful.
We are so sorry Beaton family, from the bottom of our hearts.

Dylan Andrew Beaton

Lucia has been cruising along so far this New Year and no news is good news.  I would like to say congratulations to a good friend on the birth of their 3rd daughter this weekend! Jennifer Goggin Welch was a dear friend and roommate in college and although she now lives in Hong Kong with her family, she has been an amazing friend and support since learning of our Lu.  Thank you Jenni for your friendship, your words of encouragement, your most generous donation to PKS Kids and for all you are.  I love you Jenni!

The Welch Family w/ 1 daughter...now a family of 5!

Mario, we are sorry for the loss of your close family, Janie, although she beat the odds and put up such a fight, it just didn't seem long enough.
Giacomo, Giacomo, where for art thou, Giacomo! Our family is so proud of your latest accomplishment of STANDING unassisted! Although Giacomo and Lucia are less than 2 years old, they are deeply in love, and one day, I know they will tie the knot, be it in the USA or Italy..  I can visualize Lucia's strong husband by her side...no joke!!!

Giacomo from Italy standing!

This week we also saw a video of a sweet PKS girl saying 'I love mama' to her mama for the first time at age 7- a DREAM come true to hear your child say those words!

We are forever praying for health & happiness for Lucia and her friends...and we are so proud of many accomplishments-big and small-they bring us so much joy.

Beatons, We can not begin to imagine what you are going through and pray for peace for your family.

Love,
The Dawkins

Hope INDEED!

our beautiful angel

Happy 2013!  Jason, Lubird and I had a wonderful family filled blessed Christmas and rang in the new year with friends and our kids. I have missed my Lucia so much in the past week because I was one of many to catch the cold/flu bug that has been going around.  I am so used to kissing my sweet Lu all day long, taking baths together, putting her hands on my face, cuddling together every morning in bed and we have not done that for a whole week (so nervous I'll get her sick) and it has been TORTURE!  But other than that it was a wonderful, love filled White Christmas and beginning of a New Year!

Christmas and Lu's fabulous fancy dress from her nanni

Since having Lucia,  I have mostly felt that time has not flown by..but now that she's 20 months, close to 2 years old, had her 2nd Christmas, has a mouth full of little sweet teeth, a head full of hair, I will say that the time is going faster.   She is getting bigger, almost 26lbs, and as I've told Jason, keep increasing your weights at the gym, because we need to stay strong for our bird!  Thinking back at her first year, things seem so much different.   The first year of Little Lu's life was slow, but also a bit of a blur at times, and full of so many emotions.  Although she is still small I think we know our Lucia so much more.  I feel much more aware of the person she is and will become.  Last year at this time our calendar was full of Dr visits, and tests, and many scary unknowns.  This year, I take each day as it comes and don't have any immediate worries of outcomes.  Little Lu, our Beautiful Light,  has a path, a journey that is so different and so special than any I ever dreamed and I know, as Jason said, that God has a plan.  I want to continue to open doors, and to push our Lucia up her path with my whole heart and soul, but I feel more confident, more grounded, lighter than I did last year.  She has shown us her sweet, inspiring, spirit and Jason and I are here to water and carry her as much as SHE wishes.  I have fallen in love with our girl named Lu over and over again, she has made me have a deeper love for my husband as I see the daddy he has become, and she has spread her wings around us to show the world as a brighter place.

daddy and his daughter

I'm so excited to continue this journey with our Lu, with my husband, and her new brother or sister in the upcoming year.  I pray for her happiness, her laughter, her strength, her health, and her love.  As I logged on to Lu's blog tonight there was a message, it read:  

Merry Christmas and Happy New Year

Your blog gives me hope, our son was diagnosed on October 16 with PKS while I was 33 weeks Pregnant . We are just beginning our journey . Is there any way I could email you some questions I have. Thank-you ...

The message brought back a tidal wave of emotions.  I pray for Lucia's friends and for families that are just beginning their journey of having a child born with PKS.  We are so thankful for our family, our friends and our network of PKS Kids families, as they too have shown us, there is hope INDEED and a love that was never imagined has been born.  Thank you for messaging us, we CAN'T WAIT to get to know you and your special son!

My friend Raina shared this beautiful picture with me-it's perfect

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'.