Snowflakes and Playground

Yesterday I visited the three 1st grade classes at Lucia's school, something I have been meaning to do for a while.  Lucia is in her special class and has some interaction with the other 1st graders but it's pretty minimal.  I just wanted to visit the kids with Lu and share a bit about her- "She is 6 years old just like you! She loves to swing and listen and sing and be tickled...  although it appears Lucia and some of the kids in her class might seem different they still love to be included, love for you to say hi, love for you to tell them stories, love to have new friends... most kids are actually very similar to you in a lot of ways... "   I answered some questions, showed them how she can stand and she nailed it! :)  and walked out of the room hopeful that Lucia would make a new friend or two down the road. 

Lucia had ART class next and attends with one of the 1st grade classes each week.  I had some more time before I picked up my littles so I stayed.  Lu and I were doing some finger painting and two little girls came up and each gave Lucia a little piece of paper they had made- this is for Lucia they said and I asked them to talk to her.  "Here you go Lucia - I made this for you."   I asked her para if that happens often and she said no, never.  So it's not much but a little snowflake paper-thingy was a gesture big enough to make my heart so happy and I know it warmed my bird's heart immensely.  My girl, my sweetest bird, had some new little girls, maybe friends, do something nice for her, on their own. Inclusion is not easy but we try and we push and even if it's baby steps it is a step in the right direction.  Thank you girls for brightening our day with your little sweet snowflakes.

Snowflakes: a feathery ice crystal or slightly frozen ice..happens to be a great segue for this!  About 6 months ago as we were planning fundraising for the playground, my friend Elyse mentioned making the Frozen song-"Do You Want To Build A Snowman?"-into our own song about a playground.  I loved the idea and immediately started talking to my kids about it.  Pretty soon we settled on our own lyrics and it turned into an everyday, several times a day song that we would practice and sing and sing...Do You Want To Build A Playground?  We turned it into a video with the help of an amazing filmmaker, Elizabeth Colunga, who insisted on doing it all pro-bono. I think it's one of the most touching and beautiful and heartbreaking things I have ever seen.  The video really sums up our mission in 60 seconds.  We decided to turn it into a social media campaign..a GoFundMe and release it now.  Our little Scout sings, brother River runs around and happily plays, and LuBird and her friends sweetly and patiently listen and watch on the sided and hope...

Inclusion in the school is not easy but it seems to be getting better and inclusion on a playground should be a given but it's not.  We are trying to change that.  We are halfway to our goal and are hoping and praying and working to make our playground dream come true.   With every snowflake -big or small- we will celebrate being that much closer.

Here is the video and the GoFundMe link with the video included.  Please watch and share if you will and help us make it possible for all kids to play.  We are so thankful to be halfway to our goal, the support has been amazing, but still have more to raise.  GoFundMe LuBird's Light Foundation

GoFundMe Campaign

Thank you for helping us create a brighter world for exceptional kids!

Still our little lady Lucia

Here it began, our little lady Lucia's blog.  I can't believe it's been 6 1/2 years.  Coming back to her blog, brings me back to the early days of Lucia being in the hospital at just a month old.  I remember being at the hospital in her room and looking at our little 1 month old hooked up to more wires than I had ever seen, feeding tube, oxygen, alarms and more.  I remember looking at myself and seeing how motherhood had filled me with milk and seeing my tired face and crying that I couldn't feed my new little baby and praying that she would make it through all of this.   I remember writing on her blog and it sometimes seems like just over a year ago.  Lucia's blog, her journal, our way of sharing how she is doing and what we have been up to.  Now we have so much social media and now her own little foundation and website and the blog seems a bit like a past time but it's not.  It brings me back to the feelings of my first born- my beautiful bird. It brings me back to the joy of writing about our Lu for our Lu.  It brings me back to all the love we have received over the years because of this girl named Lu who came into our lives and took our lives in a new direction, in the right direction.

Lucia now has a Foundation, LuBird's Light Foundation and it seems like it was always meant to be.  We created the Foundation with a dream of creating a brighter world for exceptional kids by building a magical inclusive playground in our area- something that currently doesn't exist . We started the Foundation last spring because our bird loves to swing.  She loves to swing more than any other activity.  And now here we are, halfway to our goal.  It will happen.  We will be able to build a playground and we are over halfway to our $500k goal!  LuBird this is all because of you.  The inspiration you fill me with is one of the truest and best things I know.

The most amazing hosts

Playground renderings

Here is the video we played at the party-I'm so thankful for our videographers and everyone involved who made it so amazing.  

https://youtu.be/pH5ZBQBFimc

Our St. Lucia White Party on September 23rd brought over 400 people- family, friends, and people from the community we didn't even know.  People believe in LuBird's Light and they supported our mission in a way I never anticipated.  The night could not have been better other than LuBird having a tummy ache during the party.   I remember planning for the night and thinking about what I was going to say at the party.  I had been to church about a month before and the service was about "God always being with you".  I took those words and know that was the case.  He was with me and with us that night and it was one of our most treasured nights of my life.  So thankful, grateful, fulfilled with love, light and support.

Our Lucia is 6 1/2 and she has developed on her own schedule.  Every achievement is something to rejoice and her big smiles and happy days bring the same amount of rejoicing.  We pray for her happiness and her health.  We don't always get it but often we do!

I love and adore you Lucia, our whole family does and we are so grateful for this path you have taken us on.  I know we are going to build you and so many other kids who deserve it a playground, where you can really play!  Thank you for giving us this dream.   Thank you for being you. 

This is the picture taken when our princess arrived to the party.  This is all for you little Lu,  it's all for you.  

LuBird's Light

Our Lu on the side watching kids play...

To many young kids it doesn't get much better than playing on a playground.  The carefree joy of swinging, climbing, and going down a slide, over and over again can be the highlight of a child's day.  A playground is also one of the only places where it’s free, unorganized, unsolicited play.  Kids aren’t divided up by age, ability or need and they can play alongside others they've never met, kids from all walks of life.   The beauty of a playground is unlike no other.  It's pure, it's simple, it's old-fashioned outdoor fun...for most.  I'll never forget meeting a group of my daughter's friends for a play date at a newer centrally located playground in Denver.  Kids were running and jumping and playing all around, just whirling around like happy bees in a hive.  My first-born daughter Lucia and her friends we met that day are not like most kids.  Lucia is in a wheelchair and has many other challenges, as do many of her friends.  We met at the park that hot summer day and pushed our kids up to the playground.  As so many kids buzzed around us, having the best time, our kids sat in their chairs and just watched.  There wasn't one thing in that huge park that was available for them to do.  Not one thing.  

Lucia and her friends at the playground

A simple supported swing, a slide without a ladder, and so many other options could have given our kids a chance to just be kids.  Instead they were once again sidelined to just sit and observe.  It. Broke. My. Heart.  This situation happens over and over again in the Denver area.  Some playgrounds do offer a supported swing but that is usually the only piece and only on occasion.  

Every single child deserves a chance to play, to play beside their peers.  They deserve a chance to smile on a slide.  The deserve a chance to feel the wind on their face on a swing. They deserve to be kids.  There are so many things kids with special needs aren’t able to participate in and playgrounds should not be one of them. 

Not a day goes by that I don't thank God for my amazing Lucia and all the joy she brings to our lives.  Thinking about all she goes through medically and physically can be devastating.  Her legs don't work like most. Her eyes and ears don't work like most.  Her arms and even hands don't work like most.  The list could go on.  But her heart.  Her heart is full of more love than anyone I know.  She doesn't complain.  She doesn't judge.  She doesn't ask for any special treatment.  She is just a little girl that was born different and she just wants to love and be loved and feel joy and experience joy.  So, my precious bird we are working to make a change.  

We are working to build a playground where you and your siblings and your friends and their siblings and kids of any need or genetic make-up can play together.  We are going to build a playground because every child deserves a chance to play.  This September 23rd, 2017 we will be holding our 5th St. Lucia White Party and this year it will be in honor of our inspiration, our light, our precious Lucia, our LuBird.   Our recently founded nonprofit, LuBird's Light Foundation www.lubirdslight.org has a mission of creating a brighter world for exceptional kids.  

Your light Lucia, has brightened our lives in more ways than we ever dreamed of and we are working to share it with all the kids who light up this world.  With donations, sponsors, fundraisers and a lot of work, we are going to raise $500,000 to create an inclusive playground for all kids!  Kids in wheelchairs, kids in walkers, kids who love to spin, kids who love to make music, kids who love to swing, for kids who just want to be kids.  We plan to have supported swings, wheelchair swings, ramps, ladder less slides, teeter totters and spinners accessible to all with a vibrant, sensory rich, magical design.  We are also working with the city to ensure there are supported swings in all the current playgrounds.  

I've been told how lucky Lucia is to have us as her parents and I get uncomfortable every time, I don't like it.  We are the lucky ones to be blessed with our girl.  We are the lucky ones to be inspired by this little person to create something bigger than ourselves!  Before Lu I probably wouldn't have noticed the lack of inclusivity in our area.  I wouldn't have thought about the kids who struggle every day.  I wouldn't have thought about parents in wheelchairs who can't take their own kids to playgrounds and play.  Lucia has enabled us to see a whole new world.

Stanley Marketplace will be the site of LuBird's Light Foundation playground.  With the help of landscape architects, developmental therapists, Anchor Center for blind children, Firefly Autism, Landscape Structures and input from families who are affected by special needs, we are going do our best to make sure it's a place for everyone.  I love you Lu for all that you are and all the ways you brighten our lives.  We are so excited to spread your light and create a brighter world for all kids.  Thank you precious daughter for just being you.  We could not be luckier to have you as ours. 

Let's Build A Playground! 

To learn more and help us with our mission please visit www.LuBirdsLight.org.  

Our inspiration...she loves to swing

Jasper

"To the world you may be one person, but to one person you may be the world." I've always loved this quote and it has rung in my ear a few times since having our little lady Lucia and the relationships she has made.  There is Rose, her dear pen pal who took to Lucia after meeting her only once at a park.  It's been a while since we've corresponded, but Rose will always have a special place in Lucia's heart.  And now...Jasper.  Sweet sweet Jasper.
Lucia is in her very special class at school with her beautiful 9 classmates.   The kids also spend a little time with some of the typical students.  It was also important to our family that Lucia was able to form relationships with her same aged peers as well- the other kindergartners.   So about 2 months ago,  Jason and I set up a time to talk to the kindergarten kids with Lucia.  Jason and I didn't have much exposure with special needs kids growing up and we were hoping to change that a little with Lu.   We shared how she might appear quite different from them, but really she is just a little 5 year old person like them.  She loves to swing, dance, get kisses from her doggie, and cuddles from her siblings and parents.  She loves to be outside, loves music and songs.  Just then a small, fair freckled little boy raised his hand.  He asked if she liked to have songs sung to her.  We said yes and he slowly walked up next to Lu in front of the class.  He looked right at her as he gently sang Lu the ABC song.  Jason and I were so touched, so blown away, and actually pretty shocked.  His name was Jasper.  We finished our time visiting the 3 kinder classes and went home.  We went on to smile and talk about that moment with Lu and Jasper, many times.   Jason kept saying we needed to send his parents a thank you card for raising such an amazing little boy.

Over the next few weeks, Lu's teacher and myself implemented more regular times for Lu to spend with the kindergarten peers.  She would do art, phys-ed and a special Wednesday popcorn activity- "Popcorn with Lucia" (an idea we got from another PKS mom).  For the activity, two kids are chosen each Wednesday for good behavior and they help Lu pop corn and spend time together.  The two kids get a special popcorn treat, it's a great sensory activity for Lu and hopefully they form a little friendship.  When Lu's teacher sent me the pics from the first popcorn day I was so happy to recognize sweet Jasper.  This boy is so special.

Jasper helping Lucia pop corn with a special switch

the ball pit in the popcorn/lucia's class sensory room (see how cool her school is?!)

Selfie!  Brendan, one of Lu's fun paras and the 2 kids!

One of paraprofessionals shared how Jasper runs over and sings Lu a song when he sees her at recess too.  Man, so amazing.

A couple weeks later I took Lucia by the kinder classes to drop off her Valentines.  The first room we stopped by was ok.  A few kids said hi to Lu from their seat, we dropped off her valentines and went on to the next room.  When I pushed my Lu into Jasper's class he jumped out of his seat-  "Lucia!! Happy Valentines Day Lucia!" Then he and about 5 other kids gathered around Lu and sang her "twinkle twinkle little star".  I couldn't stop the tears.   My girl can't run into her class and say hi, she can't walk over and sit next to a classmates as they make valentines boxes.  She can't chime in with conversation about her favorite color or ponies or princesses.  She just is her beautiful self, quietly holding her hands, sweetly looking around in her chair.  I think she wants to be a part of their world but it's just not the way it is..not in the typical way.  But sweet Jasper has helped break down these walls and make this more possible.  He sees her, he responds to her.  He isn't afraid to hold her arm or look into her eyes as he sings. And, it is all done without effort.  Jasper just does this because that is what Jasper is.  I was actually pretty nervous to take Lu that day.  Nervous she wouldn't be acknowledged.  Nervous she would feel invisible or in the way.  I thought I might be leaving the rooms with tears of sadness but instead Jasper brought tears of joy.

This past week Lucia and I joined on a evening kinder field trip to the zoo-that's right an evening/actually overnight for the other kids-field trip to the zoo- SO COOL!  Once again, I was a little nervous of how the kids would treat Lu.  She was among about 40 kids in large room for the zoo intro.  None of the kids said hi to Lu, they were all so excited and wound up so I tried not to think about it.  I was hoping so much that our Jasper would be there.  Our friend, her friend.  Her only visible friend in the big group.  Then I saw him and saw him goofing around with some buddies.  I thought he maybe saw Lu but was too busy with his friends.  I then noticed one of the chaperones close to him, and talking to him..could it be his dad?  I went over and asked him and YES it was Jasper's dad!   I gushed to him about his amazing son.  I hesitated but couldn't resist asking if I could take a selfie with him so I could send it to Jason- I knew Jase would be so excited too!   Jasper and his parents were like movie stars in our world. So funny but so true!  Our heros!

Jasper's dad Alma and Lu's mom

A few minutes after the intro, Jasper saw Lu and came over and it was- "Dad meet Lucia.  Lucia meet my dad.  She's my friend.".  The rest of the time was pretty wonderful.  We were in Jasper and his dad's small group with about 8 other kids, a couple more chaperones and some staff as we explored the zoo at night.  Jasper insisted on pushing Lucia most of the time.  Then Lucia gave him a ride on the side of her chair after Jasper had a mishap with a post.  The night ended with Jasper inviting Lucia to his house and his birthday party, which happens to be just 1 day before Lucia's.  Little Jasper,  to the world you may be one person. but to one person you may be the world.  Without Jasper I know I would feel sadness and pain for our little girl.  I thank God for Jasper and Rose and Payton (who I will share about another time).  Our Lucia has a special friend named Jasper.   Jasper has a special friend named Lucia.  This friendship has brought so much hope and light into our world.

little Jasper and a friend with Lu

ride on my chair Jasper!

even though he couldn't see over lucia he did a pretty good job.  Only ran into the zoo staff once :) 

sitting with the kids before we said goodbye

You just never know when you could mean the world to someone like Jasper means to Lu.

I love my rare Lu

Today, February 28th, 2017 is Rare Disease Day.

I love how much you've taught me-to be kind, to be patient, to be accepting, to be good.
I love how much you are- beautiful, free of judgment, wise, peace, pure.
I love how much you teach your sister and brother-unconditional love, to see beyond differences and not be afraid, to be calm and loving, to be brave.
I love your eyes, your wee nose, your breath, your hair, your soft skin, your patience, your strength and determination, your voice, your special friends, your squishy feet, your sweet gestures, your whole self.
I love falling in love with you more with every passing day.
You are love.  You are a blessing beyond words my bird.  I love my very special rare beautiful Lu.  I celebrate you every day but today I celebrate you and all you have taught me about all the rare people in our world.  You all make the world a brighter more colorful place.
Thank you Lucia.
I love the celebration and recognition of Rare Disease Day.  Bringing the world closer, to see past the differences, to be open to inclusion, to not be afraid, to be kind, to possibly cross the line of fear for a relationship.  To remember we are all so very similar in so many ways.  To help humankind be more kind.

These two short videos say so much.  Had it not been for my Lu I don't think they would have come my way...thank you my teacher, my daughter, my Lu!    

https://youtu.be/pFuwUiHo-WI

and this one gets me every time.

http://youtu.be/zFWr-CKMWGY

Get Closer.  Embrace the rare beauties around us,  like our Lu.

A very Merry Christmas and New Year

Photo Credit: Green Chair Stories

Merry Christmas and Happy New Year!  What a special holiday season it has been for us.  River Butch has been with us for 5 months today and he is one happy-very happy, kind, goofy, smart and adorable little person.  He and Scout are best buddies, with some sibling fights mixed in, and he is also very thoughtful to our Lu.  When someone calls to talk to me and the kids- like a grandparent or Jason, River often makes sure Lucia has some airtime too.   He takes the phone and scurries over to Lucia saying "Lucia, Lucia" and holds the phone in front of her. Heart melt!  He and Scout take turns bringing me diapers, her bottle, wiping her face, they kiss her goodnight, sing her songs... It's what I hoped and prayed for but didn't really expect.  A runaround playmate for Scout, someone else to love on Lu, and someone else for Lu to love and teach.  My friend Courtney asked me the other day how it was going and I said it honestly doesn't seem like a big deal.  River is a BIG deal but he just fits in.  He is a part of our family and we just do our thing.  I had no idea what our world would look like with our new son.  Our world is very similar, but River has made it more colorful, brighter, created more laughter, more chaos and more love.   I believe God helped with this match and we are in awe thankful.  River Butch Dawkins we are SO thankful for YOU!

Christmas felt different this year with the excitement of Santa, reindeer, Christmas movies (jason said too many movie watching-bah humbug) and all the magic that goes along with the season.  This year reminded me of the magic I felt growing up..

Christmas morning stockings!  Santa came!

 This past weekend we went to Breckenridge with my family.  We took up all the gear for Jason and Scout to ski, and gear for the rest of us to sled or play in the snow.  New Years eve we ate a delicious feast in our condo, hit the hot tub and the next day we woke up to 2017.  It was a sunny, not too cold, perfect mountain condition bluebird day.  On a whim (not giving to much thought to it before), I googled a number for Breck's handicapped skiing program and picked up the phone.  A couple calls and less than 2 hours later, Lu was geared up and we headed to the mountain program!  Our Lucia was going to ski!  About 45 minutes of getting to know Lucia and setting her up in a ski seat, she was off with 2 skiers and Jason.  It. Was. Incredible.  Lucia was happy, even cracked some smiles, was patting her hands, and skied for about 1 1/2 hours! To say this was the best first day of any year for Jason or myself is an understatement.  The high of trying something new, going out on a limb, being excited but nervous, can be the best feeling and I felt it through our Snowbird, our Lu.  I'm so impressed and inspired by their program the Outdoor Education Center- they couldn't have been better!  We will be back!

Lu testing out her ski's with her instructor Amanda

getting excited!

https://youtu.be/x8r80szxeCg

Check out her cruising in the link above!
 Scout took a lesson the following day and enjoyed it too!  Our "kind and aggressive" (she went down the hill without waiting for anyone said her instructor) little athletic Scout.  So proud of my girls.  River shouldn't be too far behind when we start him.  Now I need to dust of my skis gear... I have a hard time doing things I know Lucia isn't able to do..no excuses there now!  

Thankful for our new son River.  Thankful for our snowbird brave Lu.  Thankful for the sister who was born without anything "special" who couldn't be more full of life and puts up with all that comes her way in her very SPECIAL way- our Scout!  Thank you God for our little munchkins.
Happy let's Ski New Year!
And Uncle Dennis- Wow-Such Wonderful News!!!!!!