A moment to remember

Lucia and my dad, her grampa

It's been a really good week and Tuesday was an especially great day.   Many times, a good day can be measured by a smile from Lu.  Look into my eyes little Lu and show me your sweet smile, that melts our hearts, and its a good day...make it two or more big smiles and perhaps a giggle and its a great day.   On Tuesday my parents came over for a good part of the day to visit.  I have been blessed to have such amazing parents and this little blog is an ode' to my pa.  My dad, my pa, a grampa to my lubird.  My dad is gentle, wise, generous, funny, creative, smart and on and on and on..  He is one of the kindest souls I know.  If you have had a chance to spend time with my dad, Butch, you know what I mean.
I have very tangly hair, it easily tangles, and it's very time consuming and difficult to untangle- still to this day..  Growing up, I remember when my dad would sometimes see my messy tangles and motion me to come over and sit on his lap, and he would gently and thoroughly comb through my hair until every tangle was gone.  At first the tangles hurt a bit but by the end it was such a safe, secure, and soft feeling and was a father daughter moment I'll always remember..
This Tuesday, I witnessed a grandfather granddaughter moment that I'll always remember. My dad leaned over beside Lucia and starting talking to her about how it was time to rub her back- (he is the world's best back rubber to his little grandkids).  He was talking and rubbing her head and running his fingers through her fine hair, looking deep into her eyes, and her into his.  She was staring back, and feeling her grampa's touch and she started smiling.  Lucia smiled and smiled and then giggled, and giggled again, then she started talking, and talking and smiling more..it had to have gone on for a few, maybe even five minutes..and it was one the MOST beautiful few minutes I have ever seen.  I watched and smiled, and shed some happy, happy tears and I smiled and watched and smiled and watched as two of my favorite people in the world bonded so beautifully.  It was a moment I will never forget.  My dad, my pa, the grampa to my bird.  I could not ask for a better dad, and now I see how lucky my child is and how lucky SHE FEELS! Thank you dad for being the dad you are to me and the grampa you are to my Lu.  You touch our lives in more ways than you can ever imagine.   Someday I know you'll untangle her little hair for her too.   I love you Pa.

part of the special moment- Lubird and her grampa who likes to call her Louie :)

Thank you Uncle Phil, Aunt Helen and cousins Celesta, Nora and Leah for an amazing, most delicious Christmas care package!  Thank you Aunt Courtney and Uncle Jon for Lu's pretty hoodie and baby legs.  Happy Birthday Aimee Beatty and HAPPY BIRTHDAY to my sweet nephew, Hudson- 6 YEARS OLD!  And Maria LePugh Pugia- we can't wait to see you!
Thank you Grammy and Grampa again for being here for the holidays and loving on our sweet Lubird.

My dad with his other granddaughter, sweet Charley

Dad giving Lu a backrub and his sidekick, Henry, the PUG!

Christmas

silent night in church

Gifts, traveling, baking, planning, decorating, special family and friends for the most special day of the year.  Christmas comes and goes and every year is different, but a baby's first Christmas is one a parent will always remember.  Santa is reborn, holiday outfits, a new stocking, more lights and gifts, parents turn into children again and the Christmas spirit is rekindled in a different way.  Our new little one, her first Christmas, just one day shy of being 8 months old on Christmas Day.
I have always looked forward to the Christmas eve service, singing the traditional carols, and Silent Night..my favorite..and from the picture above, one of Lucia's favorites too.  Jason and I see our little girl in many different lights all the time.  Some days she is alert, some days not so much.  Some days she will give us several smiles and be engaged and active, other days..not so much.  We had actually had a bit of a rough week..Lucia was not being as connected and smiley as others and sometimes..it just brings us down.  But Silent Night..Holy Night..Lucia was there, really there, looking around, smiling, beaming, looking with both eyes at the lights, looking with her big blue eyes all around during the service and songs and it made our Christmas..our little light was enjoying all the lights around her and our hearts were glowing bright.   We had a beautiful Christmas Eve.

Christmas day..many generous gifts...many magical moments with family that we'll never forget..    One year ago, today..rubbing my belly, knowing that our lives would never be the same again.  And little did we know, how much our lives would change...how we would be given a precious little baby to love more than we could ever, ever imagine.  We are so in love with our gift named Lu.  Thank you to our families for the beautiful Christmas celebrations.  Thank you baby Jesus for being born!  Thank you God for giving Lucia the strength to enjoy the Christmas Eve services, and the special moments with family on Christmas day.  Thank you for so many things.  Our baby, no doubt, enjoyed her baby's first Christmas, and that is something we'll never forget.
Peace and love,

Jules, Jason, Lucia, Frieda and Blue

happy lubird on christmas day

christmas lu legs

It's beginning to look a lot like Christmas!

our Christmas tree

Grammy and Grampa arrived TODAY from Ohio for Christmas, with their pug, Henry, en tote too-Rejoice!  Over a month of phone calls back and forth to the pharmacy, insurance companies, and pediatricians, Lucia was finally approved TODAY for an important, (yet very expensive for insurance), RSV bacteria fighting shot- Hallelujah!  Having skipped a birth announcement, not on purpose, we busted out our Christmas cards, and they are in the mail TODAY, with Lucia looking pretty as a princess!  Lucia also had a much needed dirty diaper TODAY, which put her in a good mood!  There is snow on the ground,  our cactus, Henry is adorned by ornaments and lights, including a very special painted wooden cross from Lucia's friend, Shaw Richter.  Little Lu also received an amazingly beautiful sterling silver Saint Lucia necklace from the O'Donnells-THANK YOU.  And mommy did some online Christmas shopping for the first time this season.  It is beginning to look and feel a lot like Christmas.

necklace from Bonnie and Dick O'Donnell

engraved with Lu's name!

Wooden cross from Shaw Richter

We just took our nightly bath and Lucia gave her mommy and daddy at least three beautiful smiles...ahhhh...the light is shining bright tonight.    Jesus is the reason for the season, and we hope and pray that our light will shine bright this week and throughout the New Year.  
Thank you Richters for the cross, thank you O'Donnells for the very special necklace engraved with Lucia's name.  Thank you sister Courtney for purchasing two Lucia Light t-shirts and thank you so many for your beautiful Holiday Cards!
Five Days until Christmas...Have a blessed, merry and bright Christmas.
Love,
The Dawkins Family

Happy St. Lucia's Day!

Santa Lucia 

Lucia's Italian boyfriend, Giacomo,  (Giacomo was born with PKS this June, we met via the PKS kids website) sent a message to Lucia last night via Facebook- it said,
"A few hours to St. Lucia's day!  We are thinking about the most beautiful Lucia in the world! How is she? A lot of hugs!"  
Thank you Giacomo and your mom, Samantha!  Lucia is doing really well...and now, thanks to you,  we have another day to celebrate our special daughter- TODAY!!!
I looked up the meaning of St. Lucia Day and here is what I found:

"For Italians, the day begins with a bowl of cuccia—wheat berries simmered with milk and sugar.

It’s St. Lucia Day, December 13th, and the traditions that come with it are many.

St. Lucia was an early Christian martyr of Syracuse, on the island of Sicily. After her wealthy mother recovered from an illness, Lucia and her mother distributed their riches to the poor in thankfulness, and at night to avoid the Roman cops.

Lucia’s non-Christian fiance did not take kindly to this redistribution of wealth, and he denounced her to the pagan Roman authorities, who tortured her.

Miraculously, when neither boiling oil nor burning pitch had the power to hurt her, she was blinded and slain with a sword. Her martyrdom [allegedly on Dec. 13, 304 A.D.] is recorded in ancient sources and in an inscription found in Syracuse.

Because Lucia could not be burned by fire, she is celebrated as a saint of light."

What an amazing story and woman St. Lucia was...Jason and I loved the name, Lucia, after honeymooning on the island of St. Lucia, but it is turning out to be perfect in so many ways.  

Happy St. Lucia's Day Giacomo and your family!  Thank you for sharing this special day with us, we too wish we were together to celebrate!  Thank you Katie Shean for purchasing TWO Lucia Light T shirts!  Thank you Shirley Miller for your kind words on Sunday, means so much.  Thank you Wendi for doing a family photoshoot on Sunday- we hope to get our Christmas cards done soon!  And "Mama"in Indiana, Lucia sends her light to you with the loss of your husband, Ed.   We hope to meet you someday!   

Now, its time to fix a delicious and special breakfast feast to celebrate, St. Lucia's Day!  Oh, and we'll make a little extra so we can hand out some treats to others today too!  

Looks whos feeling strong without oxygen :)  

So goes life..

Getting so strong!

I finished my third and final day of clinicals today, which was training in a nursing home. Four school days left to go and I'll be through with the CNA course- YAY!  Thank you Summer Larsen for telling me about this program.  I have enjoyed it but I miss being the stay at home mommy that I've been since Lu was born!
The nursing home was bitter and sweet. I've always enjoying working with seniors, they can be so cute, and wise, and interesting, and feisty, and loving, ...but so many were so affected by dementia and specifically Alzheimer's and it was quite sad at times.  Life goes by so fast..I thought of my grandparents, my family, my friends, myself, even Lucia as an old lady.  Little Lu.. a baby in diapers, dependent on others, innocent to the surroundings of the world, and many of those there were exactly the same way..in diapers, dependent on others, innocent to the surroundings of the world...so goes life.  Some were just there for 'rehab' so not there to reside...just to get better and then go home... A glance down a hall and you would see residents in wheelchairs or walkers,  CNA's (nursing assistants), RN's (nurses), possibly a doctor, cleaning staff and many THERAPISTS!  The therapists worked these residents- teaching them different tasks-some to stroke victims, teaching them how to speak, walk, eat, comb their hair, put on their shoes..anything and everything they needed.  Therapists are awesome.  After my day at the nursing home, Lucia had her her therapies-Occupational on Wednesday, working on eating and some sitting, and Physical Therapy today, working on more sitting, rolling, tummy time and tracking...and I LOVE what they do for Lu.  I look forward to her therapies every time.  They may make her upset b/c the 'work' is not easy, but they are helping her and they are helping us help her.  They are guiding her to do things on her own so she can get strong enough to sit unassisted, to swallow without aspirating, to move and be curious enough to want to move...she works SO hard and by the end I'm tired too!  We have requested Speech to start soon too.  The more the better.
The one therapy that is not hard for Lucia is her new swimming therapy.  She is totally independent and free to move her limbs as she wants!  Sometimes she moves quite a bit and sometimes not so much but LuBird loves her bath and I love taking it with her.   It's a BirdBath - and it's SO FUN!

Thank YOU Therapists everywhere for helping people- big and small- from 1 day old to 100 years old.  Thank you Coco and Reese for coming over last night to hang out and telling us about your therapies and experiences to help amazing Reese, who has Glutaric Acidemia Type 1 or GA1.  Your email and advice and encouragement have been just what I needed, so many times.  Thank you neighbors for letting us always borrow your thermometer, when we think Lu feels a bit too warm AND for your delicious Christmas cookies!  Thank you Callie Chapman and Marissa O'Malley for purchasing Lucia Light tee's for PKS Kids and your kind messages-made my day!  Thank you Deb Mooers for your donation to PKS Kids!
Congratulations to Ken and Britney for the arrival of their new son, Kendall Jack IV! And Henry Redmond, Lucia sends a kiss your way and to your parents too!

Free to move about the cabin as you wish little Lu!

CNA's in training... 6AM shot at the nursing home on Tuesday

A Big DA DA for Big DA DDY!!!

Lu has said her first word!!! It is "Da da"!!!!!  She'll just sit around and say "da, da, da..." and it's aw aw AWESOME!  She hasn't quite figured out the meaning of DaDa but it sure is making her Daddy proud regardless...those details can be figured out later..  We know we are blessed by so many things that Lu is doing.  Having Lucia's Private Duty Nurses has made us realize this even more.   Talking to them and learning just a little about some of her other patients that they care for..we feel so fortunate.  The reason one nurse was assigned to us was that she "was looking for more work AND she wanted to care for a healthier baby, an easier baby" and they thought of LU!  Lu is the healthier, easier baby that they thought of!   We know that she is amazing and not hard, but just hearing that made us realize how lucky we really are.  The nurses don't share much, of course, but I have learned that their other patients, pediatric patients, may have trachs, or are vent dependant, or may even be classified as 'hospice' (expected to have less than 6 months to live)....

We will continue to listen to the beautiful song of DADADADA and perhaps sometime a ma, ma, ma may just flow out of her cute little lips too!  We realize that babies are a gift and everything about them is beautiful and magical and we are in love with our girl named Lu! Sweet Tweets Da Da!

Cousins! Sweet lil Charley giving Lu her paci, and Hudson watching over...