Little Lucia: Imagine

Lucia finally meets her best friend, Lizzie and her Italian boyfriend, Giacomo!

Imagine going on a trip where you are going to meet over 150 people that you have never met- people that have come from all over the world to spend just 3 days together. People that come from every background, ethnicity, age, and walk of life. Imagine seeing these people for the first time and being greeted with a hug. A hug that is long and sincere and loving, like a long lost friend. Imagine coming face to face with these strangers and immediately having a connection, an ease at conversation, no ice to break, no awkward silent moments. Imagine over forty severely disabled children, most in wheelchairs, nonverbal, unable to feed, bath, toilet or even hold their heads up themselves. Imagine introducing your disabled child to these people you have just met, and they immediately want to get close and love your child, unconditionally. Imagine these people wanting to know about your lives, your child's life, the good and the bad, without any sugar coating. Imagine these children surrounded by ordinary parents, ordinary siblings, in an ordinary hotel setting. Imagine love, light, and happiness to just be. To just be with each other, to feel safe, and proud and happy. That moment happened over and over again in the middle of a hotel lobby, in a dull conference hotel room, in hallways or rooms of a hotel...it was not the hotel it was the people, it was the kids. Going to the PKS Kids Face2Face Conference this past weekend was all of those things and more. We loved on other children with PKS, Lucia was overly loved, we talked, we learned, we laughed, and we were lifted up and given an outlook on how our little Lubird may grow.

Before we arrived in DC Jason and I were full of anticipation, hope, anxiety and mostly we were bursting full of excitement to meet our new 'PKS Family'. With about 300 PKS cases ever reported, we were going to have a chance to meet about 40 of these kids affected by PKS. The PKS Kids there aged from little Sofia at 8 months old to sweet Lauren at 28 years old. As with any syndrome, disease, or condition, having Pallister-Killian Syndrome does not define Lucia. She is just a little girl figuring out her likes and dislikes, discovering the world as she grows. However, being at this conference did show us that most of these kids are very, very, very similar. The sweet way they tightly grasp their hands, the cute leg lift so one foot gently rests on the other knee, the amazing way they contort their faces, contort their lips- blowing bubbles, sucking the thin upper lip under the full lower lip, their crazy hair pattern, their long, very long winded vowel song..aaaaaaaaaa, awwwwww, and most importantly, their pleasant, angelic demeanor that exudes off each and every one of them.
We heard stories of not being able to control seizures, of countless sleepless nights, surgeries, hospital stays, therapy suggestions, equipment suggestions, research studies, where the medical field stands with their funding and research, motivational speaker, and on and on and on....needless to say it was too short! We went to the conference curious how our Lucia is doing and how she might look in the future and we think we have a pretty good idea of that. She shares many similarities with the majority of the children we met. With the support of this crew, we know we can do this! We can reach out to so many and know that they truly do understand, that they may be able to guide us, even guide our doctors. They are a phone call away...and in two years we'll have another PKS conference and we already can't wait. Our little Lucia will be 3 years old by then!!! Today, after our weekend, I feel good. I feel so lucky that we do have this group, so lucky that our Lucia is healthy right now. The road ahead is always unknown, but knowing we have so many to stand by our side, to pray for our Lu, to pray for each other, to visit on trips, to call on a rough day, to sing with on a good day...it means the world. Lubird is our world. We have learned so much from her already. We do hope, of course, that one day there will be a cure or a way to lessen the effects of Pallister-Killian Syndrome, but right now, if every family had one child, with some special needs, NO doubt that the world would be a better more beautiful place, imagine that! And right here, right now, we feel so lucky to have this sweet bird, singing her aaaaawwwwws, and making her faces, and having us hold her and love her day in and day out. This past weekend we experienced an endless circle of hope and unimaginable love, all due to a common bond of children with a syndrome by the name of Pallister-Killian.
It was a trip like no other and like Jason's good friend and volunteer photographer, Sean Touhey, at the conference one night said. 'I'm so glad that I was able to be here, it opened up a whole new world to me". This is now our world and right now it seems like a beautiful place to be.