Our Christmas miracle

We have said it for 4 years.  With Lucia having PKS we are always working towards this, that, sitting and more. We pray and dream of this, that, sitting and more..  Well...  Our. Bird. Is. Sitting.  Our Bird Sits.  She sits!  I remember it like it was yesterday.  It was 1 week before her 2nd birthday.  Lucia's physical therapist, Rebecca and I had been working on sitting weekly, daily.  Lu sat for 10 seconds, then 30 seconds, with just the support of a boppy pillow.  It was so great, such a celebration...and after those moments, her sitting has only lasted about 3-5 seconds here and there.  Until!!!  Last week when we were working on sitting, balancing with her arms she stuck it!  First 30 seconds for the first few days, then up to 2 minutes.  She uses her arms to help her balance, she sometimes even tries not to smile.  I think she understands how to use her sweet body- legs, torso and arms to do this for a long time to come!  Miracles do happen and I feel this is a Christmas miracle.  I'm so happy.  I'm so proud.  I'm so over the moon every time I watch her little body sitting all on her own.   Here's the first video of the record sit! 

https://youtu.be/up76PYo8BPg

And here she is with her proud Candy. 

Never give up.

Miracles happen.

Our bird sits.  

I love you Lucia Elizabeth Dawkins.  

God bless our little girls. 

Xoxoxoxo

Two Angels

Something as simple as bike riding can be almost impossible with a special needs child.  When Lucia was about 18 months old my parents and I went to REI in search of a bike seat for Lucia- or a trailer of some sort so we could go on bike rides.  Because Lucia has such low muscle tone, using a typical set-up where she needs to hold up her head or body upright, makes regular seats not ideal for kids like Lu.  We spent at least an hour there and tried about everything- even a 3 wheeled adult tricycle type bikey thingy..but in the end I ended up hiding behind a clothes rack crying because nothing there would work for my little girl.  We left without a seat.
When we vacationed a few months later in Hilton Head we used a bike trailer and instead of Lu sitting up we had her lie sideways on the 2 seat bench- it worked ok, as long as we went fairly slow, were on paved surfaces and didn't go too far.
After we had Scout we purchased a bike trailer thinking Lu had gotten strong enough to sit up with the straps and next to her little sister...but it never worked for more than a couple blocks.

attempt with the burley

Then last summer we thought we found the perfect bike riding setup, the Wee Hoo!  Both girls could ride together in their own seat, feel the breeze, see the sights AND be supported. However, after a couple rides, we realized it too was no bueno.  Lucia's hips easily slide forward when not fully supported and holding her head upright can get really tiring.  She cried on our two rides.  So the bike trailer, and the Wee Hoo now collect dust in our garage... Bikes for special needs kids mostly range from $3,000-$8000..so we thought maybe one day...

the Wee Hoo-pretty weeoonderful but just not cuttin it

During the Do More Charity Crossfit competition last month a woman named Dawn came over and introduced herself to me and Lu.  She was there cheering on some of her fellow Crossfit friends.  Dawn had seen the team called Lubird's bandits for PKS Kids and she wanted to meet Lu and offer something.  Dawn and her husband had two daughters, first Allyson and a little bit later Rachel.  Both girls were born with the same rare and serious form of Muscular Dystrophy, and tragically both passed away when they were 5.  The girls inspired Dawn and her friends to form a foundation in their honor,  Two Angels, http://www.twoangelsfoundation.org/about-2/ Their purpose is this :
Having a child with special needs can be challenging and it is the goal of the Two Angels Foundation to help with some of the struggles and make a difference in the lives of these children by:

• Helping families purchase recreational adaptive equipment for physically disabled children.
• Providing adaptive equipment to help physically disabled children participate at school.

The Two Angels- Allyson and Rachel Mohatt

Dawn told us she wanted to get Lu a bike!  After a few communications, she asked our family to come to an event this past Sunday, the MBS Turkey Challenge Crossfit competition raising money for Two Angels.  They introduced us to the 300 competitors.  It was really special.

Dawn is beside me w her friend Leslie

Some of this money will be for our girl to get a bike!- a bicycle that would truly work for HER.  This is the bike we have our sights set on and Two Angels will help make this possible!  http://www.frankmobility.com/duet.php

how cool is this?! so excited!!!!! the chair can be detached too!

We are over the moon with the thought of taking Lu on bike rides where she will be comfortable, secure and happy.  Thankful.  So Thankful.  Thank you Two Angels for making what seemed almost impossible, possible.   I can already imagine Dawn's two angels Allyson and Rachel flying above Lu when she rides.  Happy Thanksgiving.  

A LuCandy Heart

It's a bird! It's a dog! It's a LuCandy heart!!!! 100% created by these two!  Don't think this is just a coincidence either... Wow. 

  These two...not sure who rescued who in this house.  We adopted Candy the 10 or 11 year old homeless Weimaraner last August.  Although considered a senior and older dog, this sweet girl has made herself a whole new world and is handing out a lifetime of love.  She loves Lucia. Loves.   She snuggles her, constantly showers her with kisses, protects and guards over her during therapies and simply put, she lives for Lucia since she joined our family! It's beautiful.  All is going well in our little home and the love between this girl and her dog is true.  Most dogs kiss Lu, the sweeter or smarter ones kiss her more and Candy- she can't give enough of her sweetness to sweet Lu. I'm so thankful for the timing of Candy.  When we lost our lady Frieda last June we knew it would be hard to get another dog.  Frieda could sing, she could dance, she was so sweet and gentle with the girls and she was pretty hilarious and of course a tad crazy at times too.  After she passed, Mr. Blue wanted and needed a friend and plenty of dogs need homes.  It totally worked out.  Maybe Frieda did send her!  Thank you Lady, of course you helped make this possible.  Frieda and Candy have so many similarities..the tad crazy part included ;)   Animals are amazing and they no doubt know that Lucia is special.  I know if dogs and our Lu could talk we would learn so so much.  

 

  Henry, my parents dog, has always been drawn to Lu, usually licking/kissing her special hand whenver he can! 

    Candy tends to photobomb the bird

Candy always close to Lu especially during therapies

       Scout!! and the happy couple 

        What? I'm just guarding my girl. 

Lady Frieda and little Lu

Blue and Candy

The Mr and Candy spooning

We love you dogs.  Thank you for loving us unconditionally, with all your heart.  You make the world a better place.   

Life is good

When you are the parent of a special needs child, it's hard not to over think what the future has in store for your child and your family.   What will your child not be able to do?  Will they be better or worse than most kids with her condition?  Will she be healthy?   Will our friends and family continue to include us in their lives like they always have?

As time has passed, we have been able to answer those questions with more certainty and less worry.   Lu is who she is and most importantly she is a happy and healthy little girl.  We are OK with our future, as Lu has provided us with so many wonderful friendships and a totally new outlook on life.  Our relationships with our family and friends have become stronger and better than ever.  Along the way, Lu has introduced us to thousands of new and interesting people.  Life is good.

In the last month, we've had two unbelievable events which have reminded us that we are not alone and are surrounded by people who truly care about our little girl and other children with PKS.  Over back to back weekends, we had the St Lucia White Party followed by the Do More for Charity Crossfit Competition.  Between the two events, we were able to raise/win more than $50,000 for PKS Kids!!   Amazing.

First, the party.  It is hard to believe that while the party has become larger and a bit more fancy than it was 4 years ago, it still exudes meaning, love for our girl, and remains incredibly fun!  Over 225 people purchased tickets to bid on 65 silent auction items valued at more than $20,000.   The hosts worked harder than ever to make sure everything was perfect including the steel drum band, the fantastic food, the service, the wine and booze selections, the decorations, and of course the stilt walker and Voodoo Donuts desserts!  My friend Michael Hidalgo and several others helped film a 10 minute video about Lu's life and the meaning/purpose of a special needs life. There is a link to the video below.  Man, what a perfect night.

Then just a week later, two Crossfit teams (LuBirds Bandits and LuBirds Bandits Pro) competed in the largest charity Crossfit competition in the country with a prize purse of $105,000.  My friends and I competed with the hopes of having fun, raising a little money, and with a goal of finishing in 10th place (we finished in 11th).   Our second 6 person team (LuBird's Bandits Pro) were an unbelievable group of people whom all agreed to spend a weekend competing for Lucia and PKS Kids having never met myself and Lucia or having heard of PKS.   The athletes on the Pro team were some of the best in the world and they proved it by finishing 2nd to win $19,000 for PKS Kids.   We are so grateful that our old friends and new friends took an interest in competing and kicking serious ass for PKS Kids.

I've told several people that those two weeks were two of the best in my life, right up there with my wedding and honeymoon.   Life is so good.  Thank you party hosts, athletes, donors, sponsors, guests, fans, bar tenders, cooks, family, friends, spouses of hosts and athletes, PKS Kids, and God for making these events possible.   The money raised will no doubt change lives for the better.  

We love you guys!

The Dawkins Family.

https://youtu.be/UkS8lbF_NEE