Little Lucia: PKS Kids 2014 Conference

To say the past month has been eventful would be an understatement. At the end of May our family took a trip to Mexico to celebrate my 40th birthday and also Scout's 1st birthday-great fun!

A week and a half later we said goodbye to our beloved dog Frieda. Lucia's occupational therapist and our dear friend for the last two years Kristin Frank, lost her dad to cancer. Lucia's physical therapist, Grace Jory, and her husband Griffin welcomed their first child into the world, Henrik Scot. Our good friends, Elyse and Andy Slayton welcomed their first child into the world as well - a sweet girl named Emery Paige.

Henrik Scot Jory w dad

Emery Paige Slayton

Our family visited Chicago where I spent a day with 6 friends from college and met their kids for the first time. Thank you Heidi for hosting such a perfect reunion day!

Kristen Borgman, Lisa Olsen, Sarah Hepner, Heidi Harding, Denise Dell Isola and Katie Zapata

What brought us to Chicago however was an event we had been anticipating for the past two years, the PKS Kids Family Medical Conference, 'Face 2 Face'. Jason and I had such a wonderful time at the last conference in June 2012 in D.C., we couldn't wait to meet up again with so many that share a similar journey to ours. This conference there were almost 50 families in attendance, over 200 people- the biggest one yet! Many of the families we had met and many were there for the first time. The youngest was under 1 and the oldest was superstar Lauren aged 31. Rather than having the conference in the middle of a big city the board decided on a resort, a destination hotel property, where we could all hang out on site and get to know one another as much as possible face to face! So that is what we did at the Indian Lakes Hilton Resort in Bloomingdale, IL about 30 minutes outside of Chicago. From Thursday evening to Sunday we ate meals together, listened to specialists about the current research and medical advice. We cuddled each others kids, we played by the pool, met with therapists, and stayed up 'partyin' past midnight almost every night b/c we knew our time together would not be enough. Our friend Annie Kelley described it so well- she compared getting to know everyone there like a speed dating situation- You talk to one family for about 10 minutes or so and want to keep carrying on but there are so many more to meet you move on to the next family and on and on.. We listened to stories that were all too familiar. Eating and aspiration, oxygen dependent at night, seizures and medicines that work and don't work, different pieces of equipment that have been helpful to our kids, different toys or tickle spots that make our child laugh or smile. It is a very, very, very special trip for us. Sometimes, I found myself just looking around the room to see the kids next to each other. Wheelchair next to wheelchair next to wheelchair next to wheelchair...Often the kids would be sitting the same with their soft legs crossed, and precious hands clasped together.. The kids would tend to sing and do their talk sounding so so similar..AKA the PKS Kids Choir. A few families had to cancel due to last minute medical complications and a few had to miss some events during the weekend or leave early due to the same...there is unfortunately not too much down time with the medical problems that can arise with Pallister-Killian Syndrome. The time together however is joyful, loving, uplifting, comforting and a sense of calm. Now that I'm describing it I realize how different in so many ways our group is. Usually with families of typical kids, mostly aged 3-10, there's a lot of commotion, "please sit down, please eat this, don't throw that, say thank-you" probably some reprimanding, negotiating, up and down.....equating to perhaps, not a bad time at all but, not the most relaxing either... There isn't any disciplining needed from parents with our special child, mostly just love and affection. Not that every parent with a child with PKS doesn't dream of their child feeding themselves, or talking back or running away, and adding that chaos..it's just a different situation, completely and totally different. I must say this though, the siblings that come to the conference have a BLAST together-it's SOOOO fun to see. I have no idea what it must be like for them but I know this conference is wonderful for them too and I'm sure is some of the best therapy they may have.
Now that Lucia is 3 she's no longer in the 'freshman class'. I remember seeing the older kids like Lu at the last conference and feeling that it would be so much more routine by then...and it somewhat is but one thing that is not easy is the worry, the unknown. I think most of the families still struggle with what may lie ahead because we have heard so many times how things can change in an instant.. So as we have always tried to do- we enjoy the moment today, right now. Our Lucia is doing well, other than some horribly long teething issues (she won't bite on anything to help it, nor does just drinking liquids help) but that is mincemeat compared to what could be. Our girl has introduced us to so many beautiful families, children and events. Our world will be forever changed and rocked because of Lubird and kids like Lu.

Lu and Willow

lu, simon and jake

Conference day- Dr. Ian Kranz from CHOP speaking - one of 5 Drs that attended and is studying PKS

slumber party-lu, lizzie and giacomo

Saliyah and Brandon Benton

photo booth pics

erin, me and willow's mom Debi

poolside music therapy

happy to be here!

some of the dad dudes

lauren-age 31 and jase-she started walking at age 11!!

waiting for pony rides at family night

for reals!

moms gone wild

Pony Rides! the Case family

a handful of the age 3 girls

After the conference we had the joy of spending more quality time- one on one with the Sherman's all the way from New Zealand. They raised money and made their dream a reality by attending the conference. Unfortunately their sweet daughter Ava couldn't make the long trip due to too many pneumonia's the past year, but we were so happy to spend time with them and an extra 3 days in Colorado- getting to really know them. It was so easy, fun, cool and truly unforgettable.

Honestly, I can't imagine our lives any different. As I type I listen to our sweet bird with her long winded raaaa, raaaaa, raaaa in her bed. I listen to her sister's sound machine as she sleeps soundly, one of these days perhaps ALL night! I hear the keyboard under my fingers as I type my special daughters blog..logging the days of her life, of our lives, the good and the bad. I then hear the silence from Lu's room and hope that she has peacefully fallen asleep to dream, to dream of her life. I hope and pray that she dreams about her happiness as she is. I pray that all her friends feel happiness and joy and possibly some freedom too. I love you Lu and we love our families that we've met along the way.