for as long as she may like

A few seconds here, a few minutes there...that is where we will start.  "May she come to enjoy the view so she may one day stand on her own for as long as she may like."  author-over the moon proud mom of one lubird elizabeth dawkins 

I love to put her knee socks on her beautiful feet and legs.  I love to place the softest feet in the world in the little molded orthodics.  I love to fasten the pink Velcro straps around her sweet calves.  I love to gently push her feet into the hilariously wide and short bright white shoes.  I love to work with her to sit up tall while on my legs.  I love to prompt her that we are going up to stand.  I love it when she pushes her feet to the ground.  I love to see her stand with just a bit of deep support around her wee bird waist.  I love my standing bird!  I love my standing bird!

With the support of new braces (just helping keep her feet flat and a little support around her calves) our Lucia is learning to stand.  Learning to stand.  She IS learning to stand.  Wow. Glorious.  Praise my God.  

It's not every time. It's not all day.  BUT, for a few times a day, for the past 10 days, our Lucia has shown us that she CAN and WILL stand up tall.  Sometimes Lucia will show us a trick and then choose to not show it again...for example, about a week before her 2nd birthday she sat pretty much unassisted on her own for 10 seconds and then a week later for 30 seconds.  Since then, not again.  Oh well...  So..when Miss Lubird stayed standing when her awesome physical therapist helped, I got crazy excited - yes, but wondered if it was just a one time deal.  Well..it does not appear to be a one time deal! Let's keep doing this Lucia! Stand my daughter and see the world on your own two feet!    

the first official stand with Grace

 "May she come to enjoy the view so she may one day stand on her own for as long as she may like." 

I love this beautiful, tall bird.  Oh, I love her and her little sister so.  

Happy Special Mothers Day

A few days ago, I met a guy for coffee that a mutual friend introduced me to.  It was obvious he is a very smart guy, he is the president of and oil and gas company, and had just finished writing a book to be published in October.  We discussed his book a little then got to talking about our families.   I mentioned Lucia and he went on to ask several of the questions (good questions) that I have come to expect when someone finds out about PKS for the first time.  What is PKS? What does it mean for her?  Does it go away?  In a matter of fact/audio taped fashion, I answered each of the questions and described Lucia's condition then noticed a look of deep concern, perhaps border line shock on his face. 

As best as I can remember, I responded to his look with, "I'm sorry,  I didn't mean to describe a dire situation, in fact,my girls and  I have an amazing life.  I look forward to waking up and peaking into Lu and Scout's bedrooms and seeing their beautiful little bodies sleeping,  then kissing my sleeping wife goodbye before I go to work.   Most of all though, I look forward to coming home to see my wife and little girls every night.  I'm telling you, it's a great life."  

On my way home from this conversation, I began to think about what on Earth I would do without Juliet?   She is a mother that has an endless supply of love for our kids and I.  She is there to ensure  that they are loved, fed, dressed, entertained, and cared for.  She carries giant binders full of medical information to the six or seven doctors that Lucia sees regularly.   She organizes and schedules physical  therapy, occupational therapy, speech  therapy,  horse therapy, swimming therapy, whatever else we think may help Lucia.  She orders oxygen, medical tape, nasal cannulas, sensors for Lucia's pulsox., and blood pressure medicine.  She deals with the endless insurance bills, letters, and questionnaires.  She plays with, walks,  and scolds our insane weimaraners, Frieda and Mr. Blue.  Of course, this was all before we had Scout.  Now we have two beautiful  girls.  While Scout doesn't require all of the medical attention, she has a deep passion  for emptying drawers and playing with toilet bowls.

A little  over four years ago, Juliet and I were married in a tropical storm just south of Cancun Mexico.  After four years, I can confirm getting married in the rain is good luck.  I married a woman that is patient with me after long and cruddy work days, laughs at me and with me, encourages me, and is almost always smiling.   What would I do without Juliet?  I don't have the slightest clue. 

Juliet, I thought I understood, but I had no idea who I was marrying four years ago.  Thank you lover and best friend for making our home such a wonderful place to live.   Happy Mother's day to the most beautiful woman in the world.

Love Jason.

The Smile

She's THREE -that's over 1095 days old!  My father in law Mario sent me a text message on Lu's birthday morning last Saturday and it said "looking forward to year 3 and what new smiles she brings.".   There is no question our number one wish is for Lucia to be happy.  We of course dream of many things for her future and development but no doubt that we first and foremost want her HAPPINESS!  I think that is probably every parents wish..  She is a pleasant little girl but she doesn't give out too many smiles on her own, we could always use more....
Her birthday celebration began how her Saturday mornings often begin, Crossfit with daddy! Jason and I planned to have Lucia baptized on her special day too- A Birthday Baptism in the Park.  We believe Lucia IS our angel on earth..and this was something that we had been wanting to do..just waited for the right time.    Lucia's music therapist, Sara Wise played her guitar and sang 2 songs, Jason and my dad each gave a nice prayer, our minister Michael Hidalgo of the Denver Community Church baptized Lu and we had intimate gathering with family and a few friends.

After the baptism, we went back to our house to celebrate with champagne, BBQ, cupcakes and a little bird birthday cake my mom ordered from Cake Crumbs bakery.   Lucia was in a pleasant mood.  Her cousins were there along with some of her friends, including 3 others with PKS- really nice having all the kids together .   Just when a few people were about to leave, my niece Charley asked when we were going to do the cake.  The timing of her asking couldn't have been better- Thank you Charlita!  "Let's do it right now!" I said.  So we gathered guests, had Lucia in her new cool Stingray seat in the center of the room and we lit the candles-all three of them!  We sang.  We sang Happy Birthday to Lucia and I walked the little bird cake with bright candles to my girl.  As I got closer it happened.  Lucia's face lit up with pure joy and love.  She smiled and smiled and shined her spirit like we have never seen her do!  We could see every little lower tooth that she usually hides.  She loved the singing, she loved the attention, she loved being the birthday girl and she could NOT hide it.  She KNEW exactly what was going on!  It was THE SMILE heard round the world, at least in our world.  Thank you God for that most beautiful, never-to-be-forgotten, firework explosion, tulip filled, awesome, GLORIOUS moment.  LUCIA!!!! You were the most beautiful I have ever seen you.  It's been said "A smile is the light in the window of your face" Her light was beaming from her soul.  Jason and I have watched the video over and over.  In the moment we think she stuck that smile for about 10 seconds - a record breaker! http://www.youtube.com/watch?v=dInigFqwTJ4&sns=em

THE SMILE heard round the world!

Grammy and Scout

Carolyn and Chris, Bob and Kara from Rifle came down, and Elisabeth and Jeremiah from Aurora were all part of Lu's special day!

Three seems to be looking like a good year.  We met with the Denver Public School placement team and were happy with the evaluation/assessment for pre-school. Last Thursday we all met again for Lu's IEP ( Individualized Education Plan). When kids have special needs - they receive an IEP. We are happy with the plan! Lubird will attend Palmer Elementary School- about 1 mile away.  Her teacher is a male musician/special ed/school psychologist now pre-school teacher-shazaam-sounds pretty darn great!  There are two para-professionals as well. The classroom should have 7 typical kids and 7 w special needs.  Bird will attend Monday-Friday for 2 1/2 hours.  She'll receive therapies and help from the teachers and I'm sure her peers as well!  I'm actually so excited for her! Come Fall I might be a nervous Nelly but for now I think it will be great! 

After her special birthday with the best smile explosion it was a wish come true!  Keep smiling Lu.  Keep shining your sweet, gentle, soft soul.
One more bit of action happened on Lucia's birthday...her little sister started to walk!  Yes our strong Soldier Scout is officially marching!  It was a good, good day.  And Mario, I'm so glad your text came true.  I hope and pray that Lubird will keep bringing us more and more and more smiles! God Bless our Bird!  God bless our beautiful Lucia!

http://youtu.be/ughE9xTw_L8

Scout with her St. Lucia party dress on - playing with Lady Frieda's tail

Sisters trying out a bike trailer on birthday morning.