...to Dream

Pajamas are one of my favorite outfits on Lu, on Scout, on all little babies and kids.  Matching tops and bottoms made of soft cotton, one pieced closed toe flannels, even summer shorts with matching tank tops...they just radiate innocence, sweetness and warmth-inside and out.  We've been lucky to have been given so many great hand-me-downs, from Tallie Barrett, cousin Charley Hicks, Elizabeth Bobilya, Graclyn Lee and I'm sure a few more.  I love sharing the clothes and knowing our sweet girls have worn the same...BUT it's fun to buy new too.  Lucia is growing up AND growing and this weekend I bought her a simple and soft set of pj's from Costco (Sams and Costco truly do have great pajamas).  I grabbed a light blue and pink flamingo set-2 tops and a bottom.
Last night she wore her flamingo print top and bottom...birds on a bird :)   Tonight I put the other tee on her.  Lu always looks so beautiful but seeing her in new soft pj's is an extra special burst of beauty.  "I (heart) to Dream" was the print on the shirt.   I looked at Lu in her tee and bottoms as she talked her talk and looked around the room with her big blue eyes and hands grasped together.  I looked at her and read her shirt and wondered...I wondered about HER dreams.

Does my bird dream of flying?  Does she dream of swimming?  Does she dream of her sister and doggies?  Does she dream of me?  Does she dream of holding hands with friends and skipping through the playground?  Does she dream of dancing and riding freely on her therapy horse Andy?  Does my bird dream of me?  Does she dream of playing dress-up with her cousin Charley or jumping off the diving board with her cousin Kayla?  Does my bird dream of riding bicycles with her sister Scout and ringing a little bell?  Does my bird dream of me?  Does our bird dream of running along side her daddy at CrossFit or playing with their bars and weights?  Does my bird dream of visiting her friends around the world and swinging with her boyfriend Giacomo?  Does our bird dream of a speaking and sharing stories of her dreams?  Does she dream of being a famous pianist and performing on stage or the next White Party?  Does our bird dream of singing in a choir with a brightly colored robe?  Does our bird dream of me? Does she dream of sitting and standing and handstands and feeding? Or sparkly cupcake baking and dress sewing and flower painting? Does our bird dream of me?  Does she dream of signing or saying the words  I. Love. You?

I dream that she does and I dream that she will and I know whether here on earth or one day in heaven YOU, our Lu will do all you have ever hoped and dreamed.
I dream of her beauty.  I dream of her soft skin, her blue eyes, her button nose, her full lips and pillow feet.  I dream of her songs and I dream of her smiles.   I dream of her being her sisters biggest fan and her sister the same.  I dream of growing old with our Lu for the rest of our lives.  I dream of her innocence and her angelic presence.  I dream of her every day.  
I pray that some dreams may come true...I guess that is what dreams are all about.  I hope my bird truly does 'love to dream'.  We're here.  We're a team of a mom and dad, two sisters, two dogs and many amazing special and loving therapists to help the dreams become reality..big or small.
I Heart to Dream about Lu.

cousins pj pic-lu,kayla, scout, taylor Cmas 2013

Just the way you are

I've started to write and then I don't finish...I've been enjoying my babies, because babies don't keep! But here is a little catch up and then some..

On the PKS Facebook page a friend of mine, mom to a little girl Lucia's age with PKS, posted a few lyrics from a Bruno Mars song.   "When I see your face there's not a thing that I would change cause girl you're amazing, just the way you are!  And when you smile, the whole world stops and stares for a while, cause girl you're amazing, just the way you are..."  and she wrote, " Thanks Bruno for summing up so nicely how I feel about miss Willow today".   I read that post and it melted my heart.  Melted my heart that Debi feels that for her Willow and melted my heart because it's also perfection for how I feel about little Lu.  

Debi and little Willow

I read the post and looked over and admired my girl who was just looking around smiling and holding her hands...I curled up next to her on our shag rug and sang the lyrics to her.  I teared up telling her and she turned her head away, I hugged her tight and said "Luuuu, your mom is a goof, but I just love you so much, and I started to cry a little more" then Lu laughed out loud! Then I laughed out loud and she did back about 4 times.  It. Was. So. Cool.
I believe that our bird knows what goes on, understands what we say and how we feel.   I think she probably also thinks we are a bit crazy in how much we love and adore her..and smother her..  I know she likes it, loves it, but it's sometimes hilarious how we treat our Queen Lu, her majesty!
A couple days later was Valentines Day.  Jason and I had a delicious dinner at home with our girls and then watched a movie in bed.  After the movie I told him to go cuddle his sweet bird.  I remember how my dad would often buy me a box of chocolates, or flowers or a sweet card on Valentines Day and it always meant so much.  Lu is definitely a daddy's girl too.  He went in and cuddled her and I joined shortly after.  We laid on each side of her and kissed and hugged our bird.  My heart pounded for the love I have for her and I also thought how it would always be a Valentine of three...  She would always be with us, her daddy her boyfriend, her mommy her admirer...and for a while at least, her sister the cupid that is bounding around us !

pretty in pink getting her little vest treatment

sweet doggies

And speaking of Love, the annual (third annual) "LuLove Stella & Dot Jewelry Party for PKS" was last Thursday.   It was hosted by my friend Kirsten Vali and held at Megan's house.  I can't express how giving Kirsten is for donating 75% of her commission to Lu and she really insists and LOVES to do it.  And Megan is always quick and enthusiastic to host.  It is such a special night for me and fills me up to be surrounded by my friends.  My sister in law Kim, who is not one to spend money on herself, splurged with a beautiful fun and big necklace.  She told me she bought it for Lu- she would have never spent that money just because..   Gosh, love it.  Thank you friends.  The 'trunk show' goes on until the first weekend of March.  If you'd like to shop for a cause- here is the link.  http://www.stelladot.com/ts/ap8w5   

some of the girls from the night!

And one more thing... LUCIA HAS BEEN INVITED TO BE IN A FASHION SHOW FOR A CHARITY EVENT!  The Colorado Avalanche wives do a charity and there is a fashion show with kids that have "overcome medical challenges" Her ortho Dr. Laurel Benson and kidney Dr. Mindy Banks thought of our Lu.  So proud.  If you're reading this and are interested in attending- we are able to get family/friends tix of $100 instead of the regular $250.

Lu you're amazing just the way you are!!!   xoxoxoxoxoxoxoxoxoxoxoxo

Dust go to sleep

So they say...time flies when you're havin fun!  I can't believe our little Scout is already 8 months old AND I also can't believe our sweet Lucia will be 3 years old in just 2 1/2 months.  Even though the days can seem long, time is definitely going by fast and it's mostly very fun, and I try not to complain..  The girls have been healthy all winter up until this past week when a little cold has set in..hoping it doesn't stay long! Scout learns new tricks daily and is a constant source of entertainment.  Lubird has been pretty content other than a few tough nights of some molar pain..   We've seen her orthopedist and her 'hips are developing nicely' as Dr. Laurel Benson says.  Her cardiologist, another favorite, Dr. Jane Nydam still sees pulmonary hypertension but not enough to treat with anything.. so that's good too.  AND our Lucia passed her latest hearing test for the most part.  Of course it's tricky to test hearing when your child does not turn to sounds and is non-verbal, but her latest test looked pretty good-Rejoice!  Lu continues to be sweet and often smiley, sometimes giggley,  and she has been working hard at sitting. I believe that one day it will just click and she'll sit, just like that. You can do it bird!   Next week we will start going to weekly swim therapy at National Jewish Health- a heated therapy pool where she'll work with a physical aquatic therapist... I'm super excited for this as I think the bird will love it too!

Lu getting her ABR hearing test

sitting with a special device-A SWASH

getting ready for bed-our beauty

Speech therapy with Mandy! (with food-hence the dogs)

Scout playing kitchen in the waiting room at the audiologist

As for Lu's little sister, she is crawling, pulling to stand, enjoying spilling the dog's water bowl, trying to eat their food, loves to dart for the toilet, thinks her daddy is the bee's knees, loves to smile, fall, eat paper, play with her sister, favors guacamole mostly but is dabbling well with other foods, has sprouted out two front teeth and two little lowers, has the cutest hoarse voice (from her cold) and she continues to amaze us with her strength and big personality.  Soldier Scout is marching ALL around, looking for trouble!  She's so much fun. 

toppled into the clothes basket!

playing with her sister

Our bird and our soldier=fun blessed days.  

When my days sometimes seem tough-tough to get us all out the door, tough to do therapy with Lu, tough to get Scout to take a nap, tough to wash my hair, it sometimes just takes a walk in the fresh outdoor with my girls and my dogs to realize how good it all is. 

The simple life is not a bad thing.  And writing that down makes it all seem ok.  I am going to try to embrace the simplicity of our daily lives and live that to the fullest.  Be it a day where all we get done is swinging in the park, or a day of playing in the kitchen with bottles and pots and pans, or just a day when all we do is eat and change diapers and take a bath..it's a day with my little ladies and that is a beautiful thing!  

I have a pretty awful memory but I clearly remember this poem that hung on our wall growing up as a child. It went like this:

"Cleaning and cobwebs can wait for tomorrow, 

for babies grow up, we've learned our sorrow

So quiet down cobwebs, 

Dust go to sleep

I'm rocking my baby and babies don't keep".  

Slow down my two sweet babies...Simply put- I love you little munchkins!
I pray that our lives can always be this simple and sweet.....

She Laughs!

Every 6 months,  since Lucia has been receiving in home therapy/early intervention at 2 months old, we have a IFSP (Individualized Family Service Plan) meeting with her 'team'.  Her occupation, speech, and physical therapists and the care coordinator all come together at our house for about 1-2 hours.  We discuss how Lucia is doing, what goals have been met or not met, and what new accomplishments we think we could do over the next 6 months.  The goals have not changed much in the last 2 years.  We have accomplished a lot too-drinking from a bottle, sitting for longer periods at her special desk.. but many of the goals now seem like they will be a miracle.  Anyway, we love our therapists and we love how creative and determined they are with Lu.  They come up with new ideas and methods and keep things fresh and innovative.  While having the last IFSP, the care coordinator asked me a question and Jason happened to walk into the room so I asked him to respond.  Jason kind of chuckled as if "seriously, I need to answer this?".   He wasn't being jerky at all, it was more of a well Lu is Lu and she just does her thing..  I then realized that how Jason responded was how I wanted to now respond..I don't need to butter up or sugar coat her progress.  And it was then that I realized what my 'for now' goals truly were, at least part of them.

I shared with her therapists that I want Lu to be happy.   I want her to smile more.  I want her to laugh more.  And I would love to hear a belly laugh and find a way to get her to laugh consistently.  I shared that I love their efforts SO MUCH.  However, I don't want them to do new things just to do new things.  Let's all accept the fact that Lu is a simple beautiful bird and she does things on her time.  Let's work on the same things over and over every week and enjoy that hour together.  

Maybe it's a new year, maybe it's Lu's nutritious diet, including omega 3 fish oil that is feeding her brain, maybe it is her new little sister...but she is making progress.  She is happier, and laughing and truly enjoying life more than she ever has! I will now say...with confidence... that those goals are being met with beautiful bells on! 

She has been loving her therapy ball and EVERY day for the past 10 days she giggles and smiles on that ball- consistently ! HUGE.  SO HUGE.  

I've waited for the day where I lose track of how many times a day Lucia smiles and wasn't quite sure that day would come.  I've also waited for the day when we could get Lu to do a belly laugh and again, wasn't quite sure that day would come.  But, IT HAS COME AND IT'S INDESCRIBABLE how happy it makes us.  Her light overwhelms us with joy!  BIRD!!!  here's the proof! the end is the best part.  

http://youtu.be/61mWkxA-i0E
That is what i'm talkin' about! 

Goal of happiness-check!  Goal of more smiles-check! Goal of laughing, including belly laugh-CHECK! Let's keep it going Lu.  Love you more than ever before.  Scout, you crawler, stander, little go-getter smiley little one- YOU too are rocking our world!

Happy New Year

2013 has been a great year for our little Dawkins family and we have so much to be grateful for.  In June, Little Lu became an older sister to Scout Lumiere.  We decided to have a second child in part so that someone would be around to "look out" for Lu once we are old or dead.  Hence, the name Scout.  Being extremely protective of our Little Lu, it took me a month or so to truly warm up to our newest little girl.  However, as she grows up a bit everyday, her personality has begun to flourish.  She has me completely wound around her finger.  I couldn't be happier with her never ending smile and her constant pursuit of trouble.  She will be a wonderful little sister for Lucia.

Also this year, we had the 3rd annual St. Lucia Party to raise money for PKS Kids.  Once again, over 200 friends and family showed up in full force to support our beautiful Lu.   Many travelled from all over the country to attend and more than $50,000 was raised to support medical research, the PKS Conference, and Family Giving Grants.  We are so lucky to have such awesome friends and family.  

Shortly before the St. Lucia Party, Juliet called me at my office one afternoon and told me she had found a perfect house for our growing family.   We had searched for the better part of a year for a ranch style home that would be a great place for Lucia to grow up in.   We have had a few months to settle in now and we love it.  

This year we continued to get to know dozens of PKS families from all of the world.  Sharing stories, common struggles, and often (too often) supporting one another during hospital visits or worse.  Billy, Dillon, Gabby, Akeela, and Sterling are among the PKS Kids that earned their angel wings this year.  While devastated, their families have been courageous and inspiring.   We will never forget the kids and are comforted that they are watching over their PKS brothers and sisters here on earth.

A few weeks before his 90th birthday, my Grandpa passed away this year.  Poppy was a true friend, was funnier than anyone I've ever met, and lived to be with his family.   While he loved all of his great grand children, I know that he kept a special part of his heart for Lucia.   I think of him every day and I'm blessed to have been part of his life.   As he used to say, "Watch out, or I'll kick you in the como se llama".

As for Lucia, I continue to fall more in love with her every day.  While we didn't make any great achievements this year,  she does her best at therapy, horse back riding, or just hanging out.  She moved into her own bedroom including a queen size bed, fancy furniture from great parents, and pink stripes across the ceiling.  She seems to love her little sister and doesn't mind all that much that Scout has a great time climbing all over her.  

Personally, I feel like the luckiest guy on Earth.  I have two beautiful girls and a wife who is my best friend and also happens to be gorgeous.   Her love for her family (including our dogs) is unmatched by anyone I have ever met.   I love Jules more today than the day we were married in Mexico!

May 2014 be a great and healthy year for each and every friend and family!

Believe

Sitting on her own, bearing weight to stand, taking a few steps with a walker, holding her own bottle, eating solid foods.  These are dreams that Jason and I have for our little girl Lucia.  We work on these goals.  We work with therapists and we work on our own.  We situate Lucia in special seats, she has a special stander, we even have little orthodics for her feet to help her lay them flat.  I like to give her a new perspective, a different sensation, by using these special things.  I do hope they will also help her gain strength and motivation to do these positions on her own.  I hope, I dream, I pray, and I practice. I try to teach our Lu.  Today I was having breakfast with my girls, listening to Christmas songs on the radio and a beautiful song came on and it hit me.  I realized that lately I have been missing a key ingredient, one of the most important key ingredients to helping Lu. This ingredient is one that must come with passion, and heart and soul.   Josh Groban singing BELIEVE from the soundtrack Polar Express!
"....Believe in what you feel inside, and give your dreams the wings to fly.  You have everything you need, If you just believe"!!!!!!!!!   www.youtube.com/embed/nZ19mW-TMRk

I BELIEVE THAT LU CAN SIT!  I BELIEVE THAT ONE DAY SHE WILL STAND! I BELIEVE THAT ONE DAY SHE WILL TAKE SOME STEPS.  I BELIEVE THAT SHE WILL ENJOY FOODS! I BELIEVE YOU CAN DO THIS LUBIRD and I WILL HELP YOU!
A fire has been relit inside of me and I hope to transfer that flame to our bird, to my husband, to our Scout.  A flame that will always stay lit and will grow and burn brightly as long as it may.  A flame with love, hope, faith, and a flame that shows WE BELIEVE!
Our Lu has no doubt shined her light upon us and happiness trumps all on our hopes for Lu but...I too believe she can do more while of course still being happy.  We want to give you wings to fly, and we believe!
More than ever it is the season to believe.  Remember that magical feeling of believing in Santa, well now that I am grown up, I still want to feel that magic.  Anything is possible if you believe.
I love you bird and I believe in you.  I believe in me. I believe that our family can do this.  Like the lyrics said, "you have everything you need, if you just believe"!
I could listen to this song over and over again-  I think I will!   I'll sing and dance and practice and prance to the words of this song-let's do it Bird!
Believe!

Lu with THE Santa at Anchor Center

Scout's first give from Santa

     

Her awesome Physical Therapist, Grace Jory, working on sitting 'find your middle Lu"

And to our dear friend Isabella,  we believe that you will feel better soon baby girl.  Keep smiling and you will get through this.  You will!  Love you sweet girl.  

Soldier Scout

"You've probably been told this but Scout is going to be an extraordinary young woman." Naturally as her mom and dad we think she already is...but she is just the wee age of 6 months so I wasn't really sure what she was talking about.   Marsha, mother-in-law to Darren O'donnell, Jason's best friend since middle school continued on.  "As a teacher I have seen a common denominator with certain kids." She went on to say that there would be students in her class that would be compassionate, and a certain level of understanding for others and would just seem different, in a good way.  She would later find out that they had a sibling with special needs.  "The common denominator of these extraordinary students was having a sibling with special needs."  Marsha had been a high school teacher for 35 years.  Hearing those words, thinking about our Scout, our Lu, our Scout with our Lu, just warmed my soul.  Of course having Scout was a gift to Lucia, to us, but thinking about it as Lu being a gift to Scout...something I had not thought about much lately.
Scout turned 6 months old yesterday-December 4th, sharing a half birthday with International PKS awareness day- pretty cool!  PKS Day is 12/4 due to the duplication (making 4 instead of 2) of the short arm of the 12th chromosome.
Although Scout is only 6 months old, we can not imagine our life without our "Soldier Scout".  She is strong, so smiley, always looking for a mission, always checking things out... "Soldier Scout's a marchin"we like to say...  She came into our lives and it's been like having a first child all over again.  Lu is our rare bird, lady of leisure.  Scout is our smiley soldier, a little go-getter.   She moves, she eats, she cries, she reaches and holds and plays with toys.  She tries to grab anything and everything she can and put it in her mouth.  She sits in the orange high chair that intended for Lu but didn't really work out for Lu.  She looks into our eyes, she follows and tracks, and laughs and smiles...  Jason and I often feel out of our comfort zone with Scout, in a good way no doubt, just different.

first supper!

morning cuddles in bed

Right after Scout was born a good friend stopped by our house.  Taryn Wilson, a most thoughtful friend, ran up to our front door and dropped off a gift.   I didn't even get to thank her in person that night because she took off so quickly so she "wouldn't disturb our new family"-you come in next time Taryn!  I opened up the door and saw a beautiful bouquet of tulips.  Next to the vase of tulips was a bottle of red wine.  I opened up the card and it read something like this...
"You have your Holland and now you have your Italy too."A bunch of tulips for Holland and an Italian bottle of wine for Italy...Wow.  Awesome Taryn.
We love our journeys, as different and challenging as they may be we are enjoying each and every day with our girls.  The bigger our Lu gets the more she seem to be the little sister.  The bigger our Scout gets the more miraculous she seems.  We already think Scout is extraordinary, of course.  And as our family grows, the more we will realize even more how it all goes back to a girl named Lu.  A girl named Lu that has touched us in a ways that are indescribably extraordinary.  Thank you Colleen and Darren for hosting a great gathering the day after Thanksgiving.  I felt so much love that afternoon-with Lu, with Scout, with new baby Evelyn and all the long time friends, like family.  Thank you family on both sides for a great Thanksgiving Day!
It was a very thankful Thanksgiving week.  And thank you God for our girls, our extraordinary Lu AND Scout!

thanksgiving brunch-nathi, andy, kim, joey, us

Sweet Josephina Luevano-so great with Lu & Scout

LU!!!!

Ana, Ashley, Sara

Bonnie O'donnell loving on Lu