Lifting me higher!!!!!

She smiles.  She laughs.  She gets tickled.  She giggles.  

She loves to hold hands.  She loves music-classical, rap, heavy and LOUD!

All these amazing things are happening more and more and more and more..thank you God for allowing our girl to shine SO bright! This is what it's all about! Check her out! The song lyrics couldn't be more perfect "your love keeps lifting me higher"!!! #washparkband

https://youtu.be/y9Tkp0-JU_c

Thank you mom for a GREAT girls trip to the mountains and for capturing that moment.

Feeling very very blessed.  

paddle boat for five please!

Girls Trip!

loves her sisters chair

loving the music

p.s. lu has decided - after 4 years!!!- she doesn't need oxygen at night anymore-not even at 7,500 feet elevation! Bird!!!!! Say Whaaat?! You keep on lifting us higher Lucia!!!! 

Introducing Charley and Lucia!

Little Lu, Little Lu,

so many adventures did you do!
Sister Scout, Sister Scout, 

oh yes you sure partied about!

The girls and I visited my hometown of New Philadelphia, Ohio before and over the 4th of July...here's a little recap- so many special memories!

Hicks Reunion, rides and ducks at Tuscora Park with grammy, The Farm at Walnut Creek (Amish Country style Jurassic Park-so cool) , fishing with grampa for the first time on Marsh lake, taking the girls to my elementary school playground, backyard fireworks, catching fireflies, s'mores and sparklers with cousins, First Town Days festival full of fresh squeezed lemonade, french fries soaked in vinegar, frog jumping contests, and....the winner of the 2015 Fourth of July best moment award is....Charley Hicks and Lucia Dawkins dancing in the First Town Days Talent Show!!!!!   That's right!

Lu and cousin Charley ready for the show!

Charley can no doubt dance and she and Lucia took the stage together, adorned in two outfits from my childhood dance recital days.  We sprayed their hair pink, decorated Lu's stroller in red, white and blue, and the two of them stole the show (at least in our eyes)!!!!

Lu smiled SO much in this outfit! Is she a pageant girl?!!!

Charley practiced her dance about 100x in my parent's house, backyard-about everywhere, different every time, and she put on a spectacular show with her somewhat unchoreographed routine to the tween version of Uptown Funk by Bruno Mars.  When it was showtime, Jason and my brother Joey lifted Lucia onto the stage and when she and Charley came out... the crowd went wild!!! #brunomarsbackupdancers

Truth be told I felt like a full fledged pageant show mom!  Sweaty palms, heart racing, cheeks hurting from smiling and tears of so much happiness and a heart bursting with joy!

Charley danced around Lucia and, as planned, she pushed Lucia around in a circle on stage and the crowd cheered like she was taking flight!  Actually she did almost take flight or a bite as her stroller almost rolled off the stage but...it all added to the excitement of their show!

They may not have placed but it was a moment that was full of fireworks and huge WINS in our eyes! SOO crazy proud of our Charley and Lu! Check out Lu's arm at the end of the performance :)

https://youtu.be/RxcobVhAwVA

Another highlight was getting the chance to meet an online friend, grandmother and caregiver to a little 23 year old girl named Ashley who has PKS- the amazing Linda Jones!  Linda lives about 40 minutes from my parents.  She is a remarkable woman, with so much on her plate,  who just recently has gotten connected w PKS Kids..before she and her family were in the dark about others affected by this rare and disabling syndrome.  We loved finally meeting you and Ashley, Linda! It was obvious how much love you two share. You are truly an inspiration to so many of us parents.  And Kristen Desantis-always so awesome to see you and Bells! Wish we all lived closer to each other.  

Isabella, Ashley and Lu- PKS sisters

Thanks mom and dad for a nice visit and watch out New Philadelphia, the Hicks granddaughters might just be back next year with more moves, twists and turns...it was too much fun!

First Fish with grampa!! Thanks Dad!!!

South School-swings for Lu too!

Brande and Brandi came back too!

the intense audience

Charley-born to dance!

visiting the Hootmans! 

Our angel

God bless the USA! 

Happy Birthday Scout!

Our Scout turned TWO today AND our Lu had her last day of preschool. What a double special day it was.  Lu had a special part in her class graduation ceremony, leading her friends during circle song time.  My mom was there with me and we both had tears of joy streaming down our faces.  She sat before her peers as the music played, the kids sang and her teacher helped Lu use little bells to lead the group.  When the teacher called her name to lead the song all the classmates cheered so happily and loudly! They truly love their classmate, Little Lubird.   It was BEAUTIFUL!  Our Lubird has just been amazing in the last couple weeks...so many smiles, happiness, feeling good and healthy.  

And now about Lu's little sister...her little 2 year old sister.  Wow, it seems just months ago I was getting ready to welcome her into the world and now here we are with a spunky, hilarious, adventurous little person.  Having our special bird and then having a girl like Scout is completely a trip- like two different trips, but in the same vehicle.  Jason and I have said it many times how Scout amazes us daily.  The way her little brain works and the things she does... Diapering her baby dolls, learning to sing little songs, making forts in her room, picking out her outfits and shoes, discovering bugs, helping with chores...Jason and I are often telling each other- 'you gotta come see this' at the little things she does- it's so cool.  At night she makes her round giving everyone a kiss- "muuuuwah" and hug- before she goes to bed,  disder/sister, boo/blue, dandee/candy, dada...and then off to bed to read 'dis one", then "dat one" on picking out her books..  

Early every morning she wakes and we bring her into our bed.  She wraps her arms around my neck and nestles onto my chest like she never wants to let go, and she drifts back to sleep. When her sister wakes, usually about an hour after her, she hears her voice and runs in to see her "disder" with huge enthusiasm. Scout cheers when Lu works on standing and she gets worried when she cries.  She loves her sister.  Our neighbors have a trampoline in the backyard and we often see Scout climb the fence and peek over with a "Heeeeey"!  If the kids are outside they will lift her over the fence and play for a bit.  It's music to our ears to hear little Scout laughing and playing with the little neighbor kids.  I would love for our bird to be able to fly over and join them too.

Our little girls.  A Scout and a Little Lucia.  I love these girls.  I love to see their relationship develop and I love to see them both grow and learn on their own little journeys but traveling side by side..  Happy Birthday to you my beautiful little Scout.  And congrats little Lu on your first year of preschool! You two keep me busy and keep me smiling with a heart full of love.

Happy Birthday

A few days ago, Jules called to tell me that Lucia had been honored at school.   The entire elementary school meets every Monday for assembly and on this Monday the school had a contest "Crazy Hair Day". The kids chose the winner by cheering for their favorite contestant.  Jules sent Lucia to school with a 1980's mullet wig and she was nominated by her classmates to represent the preschoolers.  When the teacher stood behind Lucia, the whole school cheered and clapped for our little Lu-she won for the entire school!   It probably seems silly, but Juliet teared up when she was told the big news.  Seriously, it feels great knowing that a school full of kids would cheer for our little girl, no matter how trivial the reason. This got me thinking, how lucky are we!!??!

Lucia turned 4 years old April 26th.  Each year, Jules and I enjoy throwing a party for our Lu's birthday.   Each year, we talk about trying to limit the size of the party by inviting only people who we would call Lucia's friends and each year the party has grown and grown!!!   It seems almost inexplicable, but we somehow served 100 hot dogs and worked our way through 4 cases of beer (by the way, Jules has warned me every year that most people don't drink beer now a days!).   Anyhow, her party was amazing, kids were running around everywhere and Lucia seemed to cherish the attention.  

                      

While she didn't smile when we sang her Happy Birthday, she couldn't stop smiling when her best friend and pen pal Rose would stand next to her.   I'm not kidding, every time Rose would walk up and hang out with Lucia, Lucia would bust out in a huge smile.  

Probably once a month I am caught off guard by a comment like, "I don't know how you and Juliet do it".   Those type of comments are always a surprise to me as Lu and Scout give me more joy than I ever imagined was possible.  Lu and our family are surrounded by amazing friends, teachers, family, and mentors.  Thank you to each of you who make life so great for our family and Little Lu.   So lucky to be part of this little family and to have a daughter like our perfect Bird.   

                  School birthday 

Almost FOUR!

In just 2 days our Lucia will turn FOUR years old.  Four years ago I gave birth to my first child, a beautiful, sweet, innocent pure angel.   When our baby came into this world we had no idea the impact she would make on our lives, and on so many she meets.  I get choked up just thinking about the love she has created.  At this moment I feel like I remember every single day of her life and the time we have spent together.  The typical milestones are not a part of these moments, they are mostly filled with cuddles, carries, therapies, and love.  Our Lubird has had her own milestones of course!  Eating, being able to stand more, smiles and laughter, going to school and making friends, fighting sickness', are all a part of HER milestones and we treasure these moments more than we ever thought possible.  In the past month Lucia has been put under anesthesia for dental treatment- giving her beautiful new capped teeth, a few other fillings and a nice set of x-rays to know exactly how her mouth is working.  She did great!  Then we had another sleep study to check in with her sleep apnea.  I really didn't even see the need for it, as I always just feel she will need oxygen in Mile Hi Denver altitude, but it's always good to know and re-evaluate if needed.  Her severe sleep apnea, (at one point looking so bad a trach was being considered) has improved drastically!  Her pulmonologist still suggests wearing oxygen at night but her apnea episodes are so much less than they were!  Wow Bird!!!!
In 6 years we will celebrate her 10th birthday and I don't imagine too much will have changed from now.  I could not love this bird more and I can only imagine that love growing, for both of my girls.
Now Lu- let's celebrate YOU.  Cupcakes with your little classmates tomorrow, a giant bash on Saturday (so many people in her life it's hard to stop the invites) , and then Sunday a family day to do whatever your little heart desires.
So in love with this girl, my Lu!!

I hear you

Thank you for talking to my child when you have an appointment to see her.  Thank you for talking to my child when you are working with her.  When you touch her, move her, introduce a new object to her, do something medically to her, walk in the same room as her or meet her, thank you for talking to HER.  She hears you.
We just got back from a oh so nice vacation to Turks & Caicos with some friends-thank you Killeas!- and while there we made some new friends too.  I can clearly remember most of them including Lu and it made me so happy. I told Jason that I realized something- I think Lucia attracts good people to us.. I truly do. It may have been a simple  "Hi Lu" or "Bye Lu" but it meant so much.  She is a very loving, outgoing, LIVING special little person and she LOVES to be included...even when it's the little things, as simple as a hi or little foot squeeze.

Thank you for talking to and believing in my child.
Therapies will always be a part of our lives with Lucia and some we enjoy more than others.  Last week we met with an awesome new speech pathologist.  Lu tried out a device we hope may serve as a pathway for her to communicate.  The therapist could not have treated Lucia with more respect and hope.  Instead of acting like I was the only person in the room (as people often do), she sometimes made me feel like Lu was the only person in the room and I LOVED that.  Sarah was there to work with Lu and Lu was there, because I brought her there of course, but I believe she just wants people to believe in her, give her a chance!  Sarah believes!  We are going to start this new therapy 1-2x a week and see how it goes.

Thank you for pushing and being my child's cheerleader!
A couple weeks ago Lu's physical therapist Grace texted me- she wanted to try out a gait trainer with Lucia.  That text made me smile from ear to ear and made me so proud of my bird.  Grace will push Lu and she will present new things when she feels she is ready so I don't instigate too much when it comes to PT equipment.  So, when Grace felt Lu was ready for a gait trainer it was a big deal.  A gait trainer is similar to a walker but it has a bicycle seat to provide support. We hope Lu will gain mobility using it and one day we can move to a walker.  Grace from day one has talked to Lu, coached her, pushed her and believed in her and she has helped Lu accomplish so much!

Not only can my child not talk back but she is legally blind so talking to her creates her view, creates her vision of you and the world.   Talking to her, loving her, being nice to her makes YOU BEAUTIFUL in her eyes. This is ALL my Lucia needs to see you as a beautiful person. She may not respond with her voice, she may not turn her head or even show a sign of listening but she knows and she hears!

Hey Lu, Hi Lubird, I'm going to pick you up Lu, Check out this caterpillar Lu, Want to try this pudding Lu?,  Your daddy tooted Lu not me, You have the softest feet Lu, I'm going to give you a little poke in your arm but it won't hurt for more than a second, Let's go outside Lu, I'm sad about your friends being sick Lu, This is how you sign "eat" Lu, This is a red rose Lu, You have the prettiest eyes Lu, Move your head to hit the button Lu so you can tell us more music, Your sister is sooooo silly Lu,  Do you hear that airplane Lu?, This is sand Lu, This is the ocean and there are fish and whales and all sorts of amazing creatures in there, Thanks for being my friend Lu, I want to hug you Lu, Bye Lu, It was so great to meet you Lu,  God loves you so much Lu, I Love you Lu.

We may never know for sure what a nonverbal person is capable of understanding.  How sad would it be to not be included only because you were not able to communicate back?  Our Lu- SHE IS HERE! She is a part of this world and she is shining her light every single day.  Talk to the light.  Talk to her and I know her light inside ignites brighter every time.  Talk to her and she will communicate if you give her a chance.  She is an amazing listener, friend and sparkle that I can't imagine my life without.
Thank you to everyone who includes my Lubird. I promise it is making a big impact on her life and I hope it does on yours too.  She hears every single word.

                        I hear you!