A little bird on stage

Just a little bird on stage.  Lucia goes to school across town to a place called DCIS at Fairmont.  She is in a special ed class with 9 other special needs kiddos and spends most of her day with her class.  There is an amazing teacher, Mrs Kim Tarte, 3 loving paraprofessionals, a nurse, and therapists work with the kids throughout the week.  The kids also do their "specials" like Art, Music and Gym class with typical kids their age.  Lucia's school has 3 kindergarten classes-it's a big place!  Last Wednesday night the kindergartners had a little Winterfest concert.  All the kids dressed up and performed a song on stage in front of a jam packed audience full of proud parents.  Lucia and two of her classmates, Kendall and Ivory joined too! Rows of bleachers with kids dressed to impress stood looking out onto the audience.  Kendall, who has a hard time standing still, walked back and forth in front of the kids.  Ivory stood up next to some of the kids too. Then up the wheelchair lift and onto the stage rolled my bird.  The kids sang and followed the music teachers instructions with little Christmas sticks that they waved...Our Lucia sat in her wheelchair, holding her hands, looking around at all the bright lights.  Her teacher hid behind her and tried to get Lucia to hold the special Christmas sticks too but she doesn't like to hold things.  Just a little bird on stage, being a part of the kindergarten Winterfest show.  She looked so beautiful in her festive outfit, sequined shirt, red plaid taffeta skirt, gold sparkly shoes and a big red bow in her hair.  One day maybe our bird will surprise us and join in with the song.  Maybe she will have a part of a play...or maybe she will just be on stage minding her own business radiating her pretty light.  The important part is she is up there and included.  Tomorrow our family is going into the school to watch Lucia receive "an award for their excellence in academics or showing our core values at DCIS at Fairmont".  Any little achievement or inclusion for Lu, big or small is HUGE in our eyes.  Inclusion is one of the hardest things to accomplish when you are born different.  Our world seems to like people to be similar and when they don't fit the mold they are often not included.   We are so happy to have theses moments for Lucia.   Our little bird on stage with her friends and peers is one of the prettiest things I have ever seen.  Sometimes the smallest parts of a performance are the most treasured and important.  I hope there are many more moments to treasure ahead. So Proud of you Kendall, Ivory and Lucia! You guys are SO treasured and important!

Lu, Mrs Tarte and Kendall

Lu and Ivory pre-show

Proud mama!

Proud Bird!

Happy Thanksgiving

It's the night before Thanksgiving and we have ourselves a 50lb bird!  That's right. A 5 1/2 year old Kindergartener, growing big, beautiful bird- sometimes a beach babe bird too! This bird has two little siblings too and they are so funny.  Our new son River Butch has been with our family for almost 4 months and he is doing.....amazing.  He is smart, sweet, funny, fun, adventurous like his sister Scout, best friends w his sister Scout, so good with Lu and I could go on and on.  What a gift he is to our family!!  River Butch!!!  Lucia has been having a good first year at her new school w her new class- she even has a private chauffeur to and from school- she is fancy...  So much more to share about our Lucia, and our new son, our family and I hope to soon.  For now, we just had to say a quick Happy Thanksgiving 2016!  We have so much to be thankful for and we hope you do too.

We are ready for you!

 I can't believe the day is almost finally here!  In just 4 days- this Saturday-Jason and River will land in Denver and come home to be one family.  The crib has been replaced with a bunk bed in Scout's room- which will now be Scout and River's room- still need a non- pink comforter ;) !

We have made space in the dresser and closet and we have lots of hand me down and new clothes and toys for the little man thanks to my amazing friends.  Last week my friends had a perfect little sprinkle party for our new son and it was the best way to celebrate his arrival, his anticipation, his birth! Thank you friends!

As of now,  Jason has met, adopted and has been with our boy for over a week now and it's going so well.  We video call at least once a day and I can't believe it's all happening..and going so well.  And his sisters are so excited.  Scout loves to talk about getting a new brother, being a big sister, how she is going to sleep on the top bunk and he will sleep on the bottom bed.  Last week we were at a park and a trio of kids were running around playing too.  The kids were about 2, 4 and 9 years old and they were Asian.  Scout is normally not one to run up to other kids she doesn't know and play with them but she couldn't resist!    She looked at me with a big smile and said "They look like my brother! I want to play with them!"  I was so excited for her, so excited for River to be her brother!   Our Scout is SO ready for him and she is ready with outgoing, do something that scares you, get out of your comfort zone, bells on!  She had THE BEST time playing with them and the whole experience had my heart bursting out of my chest with love!

Bird I know will love having another sibling to love, to love on her, to help and to add more chaos and fun- our sweet sweet girl.  River is going to learn so much from you and be a better person by having you as his sister Lu!  That is what you do- you fill our world with light and you teach us so much.

Thank you so much husband for traveling to China alone- For being our son's new best friend, his dad, his everything right now.  I couldn't be more proud of you and all you are doing.  Now come home...We are ready!  We are SOOOOO ready!  River Butch, you are ours and we are yours!  We love you baby boy!  

PKS Kids Face2Face 2016

Having a special bird like Lucia can really bring out the beauty in life, in people, in so many moments. The last month has been overflowing with adventures, family, friends, love and gratitude and more.  A road trip to Ohio for the 4th of July with my whole family-so much fun, then to Chicago for the PKS Kids conference.

grammy and her kids

                       The girls

                     The little ladies
  Now that little Lu is 5 years old and this is our 3rd conference we are probably looked upon, as we looked upon others in our situation, as - "old timers, they know their way with PKS, this is their life that they have known for quite some time, they've got this!".  I guess we feel a bit that way, sometimes, but really it doesn't seem like too long ago that we arrived at the PKS Kids Face2Face conference for the first time when Lucia was just 1 year old.  She was a baby, we were still wearing our sea legs, learning our way around our new life.   We met so many people, listened to doctors and other speakers talk about PKS or effects of PKS.  It was awesome and it was whirlwind.  Now after coming back from our 3rd conference I would say...It was awesome and it was a whirlwind.   A lot has changed but yet it hasn't.  Our Lucia is still our shining light who has grown stronger and brighter.  And now she is 5 years old but she is still, in many ways, and always will be, our baby.  We still learn so much from other parents, still look up to the older families as they seem more experienced and we look at the "newbies" with a deep love and sometimes a tear as the memories of the first year is now past but never forgotten.   When Jason and I drove up to the first conference in 2012 we had butterflies of excitement but also a bit of fear...what may our Lucia look like in 2 years, in 5 years, in 10 years, in 20 years?...  The answer we saw, quite clearly, was that she would get bigger but really wouldn't change too much.  It sounds like a disappointing answer, however it wasn't.  It wasn't at all.  The kids and parents radiated love.  A love deeper than I have ever or may ever witness.  We spent 3 days with kids like Lucia, some the same age but most older, and they were all so similar.  They learn and grow but overall they were very very similar to our little 1 year old, now 5 year old bird.  The conference this year exuded more of the same.  Parents caring for, holding, medically feeding, sometimes consoling during seizures, all with their heart bursting with love.  I have learned that love will never change and PKS has brought that love out in every single family I have met at the FACE2FACE conferences.

the 5 year old section!

Gratitude.  During the conference day-9AM-5PM filled with speakers and staff and some round table discussions, PKS Kids organizes child care for all the kids.  In the past, we have used medical staff or  hired child care companies.  Those both worked for a very high price tag and a mediocre experience for the kids.  This year we had a vision of giving the PKS kids and the siblings a day they would never forget.  I looked far and wide for a group that might be interested in loving on and caring for our kids, also having the necessary medical staff to oversee and help with needs.  I made a spreadsheet (I NEVER use excell or exhell as I refer to it) but this was an important task and I wanted to make my vision a reality.  As much as I reached out I wasn't finding the group I was looking for, until...my college friend, Katie Shean Zapata, who lives in Chicago sent me a message.  I had sent all my friends or friends of friends an email asking if they might know of a group or company that might be a fit.  Katie told me she wanted to head it up with...volunteers!  She recruited friends of hers, friends from her church, colleagues of ours, her family, people from her work, her husband, people from her husband's company(he is an incredible boss #zapwater) and she wanted to and felt it was her calling to do this!  I couldn't believe her generosity and willingness to help, although I could- it was Katie afterall... She even created this website just for the day of volunteers. These people were there out of the goodness of their hearts, out of the goodness of Katie's willingness to step up and do this for our Lu and others kids like Lu.   It was a perfect day for ALL the children. So much gratitude for you Katie and for every single other volunteer who took off a day of work or hired someone to watch their own kids to volunteer for a group of kids they had never met!!  Amazing.

Katie!

college friends

sensory activity with music therapist

                   Pks sensory room

Bouncy Castles and more fun AND volunteers pushing kids in their wheelchairs outside-yay!

canvas painting for older kids in afternoon

snow cone section

Katie's beautiful mom Lynn took such great care of Lu

afternoon movie for the little sibs

As we enjoyed the activity packed weekend and all the inclusions at the conference, I thought of how much Lubird has accomplished-just being herself!   Along with other fundraisers, Lucia helps make this conference all they have become- and they are pretty amazing! Bird!  The conference is almost completely free to families who attend! Everyone involved with the St. Lucia White Party-the hosts, the donors, the volunteers, the attendees- all help make this possible!   There are LuBird's Bandits CrossFit teams who trained, raised money, and finished 2nd place last year winning a big chunk of money for PKS Kids- and now that has immensely affected all the families who surrounded us at the conference.  Thank you friends and athletes and everyone involved with your genuine efforts. There is not doubt in my mind that God is working through our little bird and you!

some of the boyz

Lucia and Giacomo on pony's! xoxo

Scout loved all the kids- here holding Cal

new friends!

petting zoo

Willow and Lu - such good friends

ladies in the pool

all the kiddos!

So here we are, back home now for about a week, still coming down from the high of the trip.  Still reminiscing with other families about one of the best weekends ever.  Families from around the world joining together for 3 days all for the common diagnosis of PKS.  They truly are special special kids.  So much Love, and Gratitude with Families and Friends on our Adventure.

50 families from around the world!

Now to the next chapter...Jason departs today, July 21, 2016 for China to pick up our son...can not wait! Praying for you River Butch!

last shot as our family of 4

Our little 5 year old.

5 years old.  Lucia turned 5 years old on April 26th.  We celebrated a few times, the first being with her preschool class on the 25th. We asked our good friend ole Shayla Shell to bring in her hedgehog, Mr. Ogglesby to Lucia's class and she didn't hesitate-Shaaaaay-la!   The kids loved checking out Mr. O while eating some birthday cake.

The next day, on her actual birthday, Lucia played hookie and the girls and I spent the day at the Nature and Science Museum.  We played, explored and ate some delish chocolate from the chocolate exhibit-I LOVE chocolate and Scout definitely does too, Lubird is still questionable.  

That night our little family went to a jazz bar for dinner and to give our girl something she seems to love- LIVE music!  It was a really great day and most importantly Lucia had fun!

Next on the agenda... her usual giant birthday bash.  We planned and reserved to have it at our neighborhood park but with a few feet of snow we postponed and postponed...and finally on our 3rd attempt it was a cold, cloudy Saturday, but we set up tents, a grill and treats but then came the rain- so we tore down and ended up celebrating right at home.   Thank you to everyone who came over and celebrated our girl!

A moment at the chilly park-all cute treats and decor by my mom!

the grandmas and their lucia

Turning 5 means big changes....Kindergarten!  This was not the easiest process for our family but in the end, as of yesterday, we are excited about Lucia's next year ahead.  After several school meetings, assessments and reviews, Lu has been placed at a school called DCIS at Fairmont in a MI-S labeled class for Multi-Intensive-Severe students...for the most affected kids.  There are only a few in Denver and just writing this again reminds me how truly different and severely affected our Lu is.  I visited many schools in the past few months and really loved how this teacher and her assistants/paraprofessionals interacted with the students including dancing, singing, teaching and lots of love.  PLUS the teacher brings in her sweet service dog, a yellow lab, to class almost every day for the kids.  I can't believe our little bird will be going to school all day, every day...sniff sniff.  I'm really excited for her and for us to get to know her classmates-probably about 10 of them.

Her new teacher and service dog!

You know what,  I'm just sitting here thinking about this process. For the last 4-6 months I have been looking at schools-many options as "all kids have the right to a free and appropriate education".  I narrowed it down to 2 schools (the school team strongly suggested she be placed in a MI-S class - so I looked at those and some others). I was back and forth on so many thoughts...Fairmont seemed to have a wonderful MI-S program but it's far from our house- 30-60 minutes by bus.  Then Jason and I looked at what seemed to be a far fetched option- our neighborhood school Carson-just 5 blocks away.  We were set on this for the past 3 weeks and hoped to convince the school district the same.  We wanted Lucia to attend the typical kindergarten (they don't have a MI or MI-S there), with typical peers and receive her therapies throughout the day..  She would be with 30 kids and be included, as much as she could, with all they were doing...reading, writing and other things kindergartners do...way more than i did back eons ago in kindergarten.  Anyway, we wanted her to be a part of our community and know her neighborhood peers and them to know her.   I was totally consumed about this decision/tormented as Jason would say. I tried to weigh the pros and cons, day in and day out.  I would wake up in the morning- having dreamt about her school choice that night- for the last month or more!  I asked for feedback from other PKS parents, and I talked to both schools again and again.  Just last week I couldn't handle it, I was in tears, tears I could not control.  I honestly did not know what was best for my bird and I was sad that it had to be so hard and different for her.  How could I not know my gut feeling?!  I felt so lame, it was not supposed to be this way!  My parents had come to town for Lucia's birthday (as they do every year)  and my dad had happened to come over this day to help me with some house stuff.  I broke down to him, as I couldn't shake my emotions, and told him about my hopes and fears for Lu and her school-and how I was so uncertain of what to advocate for.  He asked some questions and then he simply said, "well you know what, we need to pray about this".   Within a couple days I knew what I wanted to do.  Oh MY GOD, I prayed about it and this was the FIRST time I felt certain about my decision.  Dad.  Thank you Dad.  Thank you God. Sometimes the most obvious things I need to pray for, I guess I sometimes don't.

A five year old little bird is flying across town for her new class.  Now Uncle Denny,  I would love to continue to tell you stories about Lucia's new class and schools and life,  for many years to come.  I pray for you and pray this brain cancer will be beat.  If you are reading this please include my dad's brother, Denny in your prayers.  He is one of the most faithful people I know.

To Fairmont Elementary, to Lu, to my dad, to my Uncle Denny and to God. We toast you.