Wednesday, August 29, 2012

beautiful birds



Sometimes the birds just appear.  We're back in Denver, after a great trip in Ohio, and Little Lu and I decided it was a great day to hit the mall. The Denver forecast was mid 90's, perfect temp to seek AC indoors, I wanted to buy a couple things-one being a one piece swim suit-I'm a mom after all, and Lucia seems to enjoy the lights and scenery!   I haven't been a big fan of mall shopping for quite some years, but if Little Lu likes it, then we love it!

After walking about for about an hour, returning a purchase, and asking for a few silent auction items for the St. Lucia White Party.. we were about done.  By the end, we had received a donation from a generous manager at Michael Kors (thanks to my mom meeting her earlier in the month and sharing a bit about Lu and PKS), made a new friend who happens to live just a few blocks away from us, ran into an old friend from Adam's camp, bought Lu a new perfect pair of cute Gymboree jeans adorned with colorful birds, and received an auction donation from Nordstrom,   No suit for me but overall a successful trip to zee mall.

As we were about to leave,  I decided to sit on a bench by the elevator of the store.  Lu needed some mama loving and mama needed some Lu love.  I lifted her out of the Bob, she sat on my lap for a bit, then I laid her out on the big bench and we just enjoyed each other.  Lu locked eyes with me for the longest time, I tickled her and she giggled!!! She smiled at me and she brought joyful tears to my eyes and huge smiles to my face..she's so good at both of those things!  We sat on that bench for close to an hour, just she and me, and happier, we could not be.  She looked so sweet lying on that bench that I wanted to snap a pic.  As I stood up and looked at Lu, my eyes were immediately drawn up.  Above us were four beautiful black and white large paintings..of birds.  It was our spot, to just be together, in a mall, or anywhere in the world.   It was a beautiful moment with my Lubird amongst the birds randomly hanging in a store, where we just happened to sit.  So simple, so fabulous, so sweet...Tweet Tweet!!!!

Thanks Lubird for a fun day...Thanks mom and dad for a GREAT visit.  Thank you second cousin, Corey Hicks, for your prayers every day for Lu, even though you just met her last Saturday.  Thank you all our family and friends for being, just, so, so loving and caring.  We are so blessed indeed!

One month from today is the Second Annual St. Lucia White Party for PKS! can't wait, lots to do, wooo whoo!

How beautiful are those paintings?! 
Lu and lots of visitors and lots of love=a lucky, lucky Lubird!

uncle Dennis

Karen Lamb and Lu-why so stressed little lu

Amy Montgomery Hootman with our daughters! emily and lu

Sue Shackleford

Alpacas! Coffee Pot Farm owner Kathee

Aw cousins why must I sit and smile?! Paloma and Elena

The Kirk Girls! Aunt Kathy, Elena and Paloma

Aunt Dawn and Big girl LU!

Cousin Mike, Cousin Ben and Uncle Fred

Ben's Ava watching Lu

Aunt Peggy, Uncle Dennis, Cousin Freddy and us


Grammy and Lu lovin

Hicks Family Reunion at Great Grandma Hicks' house recently renovated by Freddy Kinsey


Wednesday, August 22, 2012

Home Sweet Home

leaving on a jet plane- thanks Elyse for the cute dress!

Last Friday,  Little Lu and I made our way back to Ohio for a family reunion, to see some friends, to celebrate my brother Phillip's 30th birthday, and to just have the feeling of home sweet home.  Such a safe, secure feeling to sleep in your own bed from growing up, to eat home cooked meals- and they are no joke in Ohio-(i've been living in sweats and a large dress...), to snuggle into the family room couch, to walk down memory lane and just relax.  No doctors appointments, no therapies, no feeling of needing to do housework, yard work, and life's little home-works..just the feeling of hanging out with the fam...so very nice.
at Dia getting ready to head hoooooome!

As I've gotten older and come back to Ohio, or maybe its having little lu, I most definitely appreciate and see our little town of New Philadelphia in a brighter light.  My grandparents lake and cabin, Marsh Lake, is sooooo beautiful and peaceful. I always knew "the lake" was great but I realized and loved it more than ever this trip.  The Tuscora Park where I once frolicked, rode the merry-go-round, played tennis, rode bikes, watched high school football, ran track, graduated,  amongst other kid stuff and more growing up , looked like a picture perfect place to do ALL of those things.   Before it was just my hometown park..nothing special,  just where I lived.  New Phila is and was a great place to raise a family and I'm happy to say it was my home.  It's really great to bring my daughter back here and share some of my life as a little girl with her.
Lu loves this chair my parents have!

Anna Hicks and Lu before the saturday reunion

zzzzzzzzz-my mom and lubird snoozin

Peaceful Marsh lake

fishing with my pa at the lake-i needed a lot of coaching-it had been a long time..
ah little lu!

Anna Sugarman is back!- getting her snuggle on with the lubird

Lu swinging at our city park-Tuscora

AND not only was this a trip down memory lane, but Little Lu and I hung out with two very special girls, Kristen and Isabella DeSantis, who live just a little over an hour away in Canfield, OH.  Isabella was born on September 26th, 2011, (5 months after Little Lu) and was also diagnosed with Pallister-Killian Syndrome.  Kristen and I connected on the pkskids website and decided we MUST get together.  Lu and I had the best time and as Kristen told her husband, "we could talk for 2 months straight and still never catch up on everything we want to talk about".   I can't say enough about how great it was, they are, and how I know we'll be forever friends.  Now I just have one more family to visit when I come home.  LOVED them!
Kristen DeSantis and her Isabella and us..

Thank you Marsh Family for a great reunion, thank you Isabella and Kristen for making the drive to see us, thank you Anna Hicks and Anna Sugarman for visiting too!  God bless these special girls in our lives.   We're only half-way through our trip...and I"m looking forward to more visiting, relaxing, sleeping in, and MORE 24 hours a day of seeing Lucia without her oxygen...the beauty of low altitude.  There's no place like home, sweet home! But we do miss you daddy, husband and our doggies too!

Our hearts are so sad for our friend, Megan Gilbert Gilles who lost her amazing father, Wayne Gilbert, last week.  The Gilberts are such a special, thoughtful, fun, and giving family..

megan and her dad at her wedding April 1st, 2011

Sunday, August 12, 2012

sometimes..

lubird in a red saucer at the Central Park playground


Today at church, I looked over at Jason, while he was tenderly holding Lucia, and saw a few tears roll down his cheek and so then, just because,  a few rolled down mine...I saw him hold his girl and feel happy but sometimes it just happens and it just hurts.  You're so happy because she's so beautiful but hurts because she's so weak.  She's getting so big and growing up,  but yet still seems like a baby.  Later, I asked him what he was thinking about when he got sad holding Lu and he responded, "I wasn't sad, sometimes I just look at her and I like to cry".  We laughed when he said that because it's so true. It's not that there has to be a sad moment or anything, we just love this little human and she relies on us completely, and tears, they sometimes just come.  It's not a bad thing, it's just a thing that may happen when you have someone like a girl named Lu in your life.    Oh this girl named Lu! Lu, Lu, Lu...you have us wrapped little Lu.  We adore you more and more every single day.  Here are some of the latest happening's of Little Lu with an assortment of pics from the week in review!






We are so grateful to God for every single smile and beautiful little giggle, and smiles and giggles continue to be more abundant than they were the past few months..let's keep that up!

Playtime with PUMPKIN!
Mandy Lester, Speech Therapist, working with Lu and a lollipop!

At her pediatric check-up.  "Lucia may be consuming more bottle than recommended"..a little high on the charts..22.4 oz OUR little pumpkin!


A cool new chair, called "my little seat"...i think this might be GRAND!

daddy and Lubird at church
A great visit with my parents, a fun weekend with friends, and always a beautiful day with my littlest best friend, my daughter, Lucia Elizabeth.  Smiles, giggles, and sometimes even some tears.  No doubt every day with Lu is special and bright..and sometimes those few tears seem to just clean out the cobwebs to make for an even brighter day.

Monday, August 6, 2012

Lucia's going for GOLD!

Toys, toys, toys.  Noisy toys, light up toys, crinkly paper sounding toys, funny sounds, colorful, black and white, big, GIANT and small, sweet dolls, ugly dolls, keyboards, drums, balls, wrist or ankle, baby dolls, stuffed animals, you name it, we have tried it.  We have tried to get Lucia to respond to toys, to reach, to activate a light or noise...we have seen her swat and sometimes hit, but not consistently and not 100% sure intentionally...until now!  Lucia received a toy piano from her great aunt DeeDee and boy oh boy does it tickle Lu's fancy!  Maybe its the spirit of the Olympics or the new therapy of ABM, or maybe she just loves to play a piano...whatever has inspired her she has won a GOLD medal in toy piano playing for tots!   For the past week she hits the keys, they light up and make a noise, and she hits it more, and more and we cheer and cheer and laugh and cheer!   I can't tell you how many times in the past few days Jason or I have been alone with Lucia and set her up to play and when she starts to hit the keys, Jason will YELL, "Jules, Jules, you have to come see this!! This noise is ALL LU, JULES!!!"   Or if Jason is out of the room, "Jase, get in here,  HURRY! Lu's playing the piano by herself! She's doing it!! HUUUUURY!"  We come running in, we watch and clap and get tickled pink, and we beam with joy.  We are so proud of our girl named LU! And what a time to start than when her grammy and grampa are in town from Ohio.  They have seen Lucia do several piano recitals in the past few days.  Grammy caught this one on video on our way back from the pool on Saturday.




also can be see on you tube titled, "Lucia Dawkins playing the piano" or this http://youtu.be/zVYxYCKgEGI

What an indescribable joy to watch your child achieve GREAT, AMAZING things!   Lu, you have earned your GOLD medal for team USA!   She is looking at us, she is playing with a TOY, she is even sitting better, but most importantly she is happy and giving us smiles again.   Amen, Praise God!  WAY to go Lubirdace, taking after the pianist Liberace...hee hee!

We LOVE YOU LUUUUU!!!