Little Lucia: 7/1/16

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.