My lady Frieda

Twelve and a half years ago I was given the gift of a little wrinkly puppy, a girl weimaraner, which I chose to name Frieda, "my lady frieds".  Over the next seven years we were pretty much inseparable.  My lady truly was my best friend, my companion, my room mate, the love of my life, my girl.  We walked every morning before I went to work, she would see me off and would be there to greet me with bouncing bells on as I returned to be by her side.  It was wonderful to come home and be with my Frieda.   She made me feel like the luckiest girl and I know the feeling was mutual.  I would sing to her every time I came home and more and she would crazily wag her funny short/long tail, and wiggle and dance and sing along with me and often hump my leg-to show her love :) .
 In 2005 Frieda moved with me to Los Angeles where the escapades took full force and continued.  In the unfamiliarness and no doubt craziness of LA-she escaped many times in search of me, when I had left the house.  Thankfully we were always reunited unharmed.  She braved highway type streets, broke through screens, opened bolted doors, unlocked gates, and more to find me when she felt she could not be left alone.  My lady loved me and I too loved my lady.  In attempts to 'find myself' and holding various jobs   I even attempted a couple business' with Frieda as the leading lady "My Friend Frieda.  Friendly dogwalking service and more"  and "The Hound Lounge.  distinctive designer dogbeds".  When visiting Denver on my year away, I rarely flew back to visit because we did everything together and it was too hot to fly a dog on a plane, so we happily drove the 12 hours together each way.
In May of 2007 we met Jason and his dog, anther blue weimaraner, Mr. Blue at a dog walking fundraiser in Washington Park.  Jason started to win me over when I saw how he treated his dog and also my Frieds.  I'll never forget taking a trip to Indiana shortly after we started dating, and talking to him on the phone.  It was about 10PM Denver time and he was out walking the dogs in the park, letting them run through the waters of a river by his apartment.   He took them on hikes, bike rides, and more.   I knew right there he was a special person and I wanted to spend more time with this man who showed so much love to both his dog and mine.   Frieda and Blue became best friends and Jason and I fell in love.  In 2009 he proposed to me, with our dogs,  where we met, in Wash Park, and we continued to have them by our side as often as we could.  Although our lives changed with two girls, a new house and four years of marriage, our little family was very happy.  
I looked forward to walking my dogs and girls every day and although often receiving the comment "wow do you have your hands full"  or  "you are brave" I couldn't have been happier with my double-stroller full of my beautiful girls and my two dogs walking tangled up around us.
It is with a heavy heavy heart that yesterday, Saturday, June 14th, we had to say good-bye to Frieda.  Our lady developed a herniated disk and although treating as well as we could, she couldn't recover.  She declined fast and was in a lot of pain.  There was nothing more we could do to help her.  The memories flashed before me as I slept by her side one last night.  I wanted to talk to her all night about the joy she brought to my life, the memories, the laughter, the love.  But instead I most sobbed and told her how much I loved her.  
My heart feels a piece has been broken off.  Our home feels sad.  My wonderful friend Frieda is gone.  I thank Frieda for introducing me to Laura and her dog Nelly.  I thank her for uniting me and Jason and making our family who we are.  I thank Frieda for bringing me so much love, joy, laughter, and comfort when I have felt pain. I thank Frieda for being so gentle with Lucia and so tolerant of Scout.  Although they changed our relationship I know she loved them. I thank Frieda for sharing her love with so many of my best friends and letting our beautiful friend Anna look after her, as her own when i traveled to Kenya.
I got a text from a friend Amy Barrett saying, "so sorry about your sweet girl- she was with you for a part of your life-but remember you were her whole life-- and what an amazing life you gave her".  Frieda, I whole heartedly LOVED giving you your whole life.  You could not have been more perfect for me and the life we shared, I hope you know....  You will always hold a piece of my heart.
And to the father of our daughters and our dogs, you too could not have been a better dad to our lady frieds.  Thank you Jason for treating my dog with love from day 1.  Happy Fathers Day to my husband and to the father of our girls, Mr. Blue and our lovely lady Frieds.  I love you Jason.  I love you Lucia and Scout and Mr. Blue.  Frieda, you will never be forgotten. I LOVE YOU LADY FRIEDS. We will meet you one day at the gates of Heaven! Until then, please send Blue strength as I know how hard this will be for him too.. And one more time, on paper so you can see it any time you like my lady, your song (to the tune of "You Are My Sunshine") 

"She is my lady. She is my lady. She is my lovely lady Frieds.  Oh I love her, my lady, Oh my lovely lady Frieds. (And added on after we met blue)  And then there's Mr Blue. And then there's Mr Blue.  It's lady Frieds and Mr Blue. Oh we love them, our doggies, lady Frieds and Mr. Blue". 

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. 

She's Growing Up...

It happens.  We get older every day, we get bigger too and that usually means change.  If I could I would keep our Lu this size forever-but I can't!  Our precious Lucia is growing up.  The month of March and beginning of April had a few little bumps for Lu.  Our family caught the ole cold, a cold with the worst cough! Lu always suffers the most with colds as she isn't able to clear her lungs and cough as well as we can.  She also had uncharacteristic vomiting, an earache, then a urinary tract infection and another cold!  But April is upon us and spring is beginning to sprout and with that comes warmer weather and the end of cold season. Compared to many of Lucia's friends her winter was mild.  Many were in and out of the hospital for pneumonia, dehydration, surgeries, seizures, aspiration and other serious complications.  Our heart aches when we hear her friends are so sick, over and over and over again...  When Lu does get congested I use her compression machine to help her break up any junk in the lungs.. 20 minutes 2-3 times a day with her sweet pink and white vest.  Lately her machine had been sounding a little strange and not working so well, so I called for a tune-up and after looking at her file they decided she was due for a bigger vest.  Although it's still pink, bigger things just aren't as cute.    Ah well, with Lubird in it, it's just as beautiful.

spring 2014 with helper Scout

fall 2011

 This week she also got some AFO's (ankle foot orthodics).  Lu's little left foot tends to bend in and since she doesn't ever willingly bear weight, the foot needs a little help staying on the right track.  So, we have some sweet orthodics to help out with her ankle and help her bear weight with the goal to stand!   We'll give them a try and see how it goes..so far Lu does not mind wearing them, but I would prefer to just see her sweet legs and feet.  However, to see Lucia stand one day is a sight that would bring me to my knees with happiness.  A Hallelujah moment!  

new AFO's in her stander-good focus lu!

And on the forefront are some new eyeglasses.  Lucia has CVI (cortical vision impairment) which means there is not much we can do to help with her 20/800 vision,  as the problem is in the brain/nerve not actually in the structure of the eye.  However, she does have a bit of room to improve if she wears glasses- so of course we will try them out.  Lubird with glasses=scrumptiously delicious!

trying out new glasses, so studious 

A new vest, new AFO's, glasses and next on the list...drum roll...a supported seat with wheels!  A little hard to swallow but it's true.  We'll refer to as the Pink Stingray, or the LuBird ride .  This new ride is a special medical stroller called the Stingray.    Lu took it for a test ride from another student at the Anchor Center and it seems like a good choice.  This Monday the pink Stingray arrives!!! Lu will be properly supported, comfortable, and have a better view.  There was a time that I thought we might not need a seat like the Stingray, a time where there were so many unknowns on how she would be affected by PKS.   But no doubt she needs this and she will for a long time, at least for now.
And there's more ... next Thursday is an assessment for PRE-SCHOOL-wow PRESCHOOL!  A whole slew of professionals will visit with Lu at the Anchor Center and learn all about her. They'll listen to Jason, myself and some of Lu's therapists and teachers from the Center. I hope bird belts out with lots of her songs too.  Lucia's amazing home physical therapist, Grace Jory, is coming too.  Just having Grace there makes me feel so much better.  She is thorough, gentle, tough, technical, professional, an incredible advocate and all the while so appropriately graceful.  Truly a blessing having Grace in our lives.  One other little tidbit about Grace, she and Lubird share the same birthday-I know this connection was meant to be.  Thank you Grace for everything you do for Lu, for me, for all the kids you work with.

Grace and Lu

So onto the assessment and then a week later an IEP (Individualized Education Plan).  IEP, AFO, CVI , Stingrays...more than I ever expected to know..and we learn as we go, don't we Lu?!
So much change coming.  Praying, and hoping and dreaming that it all goes well.  The journey continues and our bird, with her new vest, her new AFO's, new shades in a stylin Pink Stingray will be on her way!  Bird you'll be so stylin! Bird you'll be so sweet.  Bird you'll be the cutest girl in school and on da street! Ta-weet! 

Thanks Courtney and cousin Imogen 'Mo' for visiting in March-loved seeing you girls!  Thank you Mario and Linda for the gifts from St. Lucia!

Mo, Marco, Charley, Hudson, Scout (Lu was at an Av's game with her daddy)

Court and Mo!

Scout and Imogen having a moment

This little Lubird is wise beyond her years.  Sitting fireside, legs crossed without a worry in the world...big or small, accessorized or not, we could not love this Lu more!

Go Avs!

Every day with our little Lu is special but today was an extra special day,  a warm fuzzy day, a smile so much it starts to hurt kind of day.  The Colorado Avalanche Charity brunch event with the players, their wives, the staff, all the invited families, the guests, our family and friends, the venue, and our beautiful Lucia enjoying every minute and looking like a princess was all truly amazing.  Lucia had been invited by her nephrologist Dr. Mindy Banks and her ortho Dr. Laurel Benson to be in the fashion show for the charity about two months ago and then the details came about.  Last Saturday we had our 'fitting appointment' at Dillards in Park Meadows and were given a $200!!! shopping allowance.  Jason and I picked out a beautiful yellow and pink dress, matching bracelets-wrist and ankle, barrettes, a furry kitten purse, shoes, socks and even a bottle holder with matching bib.  The day before the event Jason mentioned that he thought we should decorate Lucia's stroller...so I did!

The day started around 9:30AM where we were greeted,  visited the other special kids and their families, ate a lavish brunch, and then met with the Avalanche players.  Lucia was paired up with Cory Sarich-not only cute but so personable, caring and sweet.  He and his wife asked all about Lu, the other players came by and said hi, signed autographs and then everyone went through a practice run - on the runway.  I'm not much of a sports fan and have only been to a couple of Avalanche games and my biggest recollection was all the fighting...needless to say this was everything NOT to do with fighting.  The Avs players-every one of them present were paired up with a child- 25 in all - and they were all so cool.  They held hands with little girls, were buddies with little boys, danced and hammed it up on stage, smiled, and were genuinely having just as good of a time as the kids.  It's pretty special to see 'famous celebrity type' grown men come to an event and get up close and personal with families and kids.   Lucia could not have been in a better mood either- she knew it was a special day!
With friends and family there to support and cheer her on- Joey and Kim, my brother Andy, Lisa Priest, Laura and Adam Huff, Andy and Elyse Slayton, Kent and his girlfriend Sharon, Mario's sister Dee and her daughter Lisa and even Lu's doctor Mindy Banks-Lucia was not lacking with a cheering section.  They all came to see LU!!!!!!!!!!! xoxoxoxoxoxoxo

As Lucia made her debut I was overcome with tears of joy and love for my precious daughter.  It is difficult, actually impossible, to describe the depth of love Jason and I have for her.  She is beautiful, she is kind, she is innocent, she is happy, she is soft, so soft, she is pure angelic love.  About an hour after the event Laura called and said how she feels so blessed to have Lu in her life.   This God given little girl named Lu has touched us in so many ways, and days like today did not happen, in our lives, before Lu.  The other special kids and families we have met because of Lu, the events where men missing teeth and scars from fighting are gentle giants with kids like Lu...
Thank you Lucia for being our beautiful bright princess today and teaching us about the sparkles and warm fuzzies of life. Kroenke Foundation and Avalanche Players,  thank you for creating this event for so many families and children.  The day was relaxing, so exciting, glamorous and one we will never ever forget.  A quote that was on the stage during the event went something like this.." It's not about how many times you've touched the puck, but how many lives you've touched that matter."    You no doubt have touched our family- Go Avs!

Cory, Lu's Avalanche escort and our fam

the Legendary Patrick Roy

Scout had SO much fun too!

Introducing Lucia  Dawkins!!!!

Dee and Lu

the boys!

the girls!