Sunday, December 6, 2009

Windy City and Wings


This past weekend my wife and I attended an awesome event in Chicago. The event was the 2nd annual F.A.S.T. Gala. The Gala is a fundraiser for "Foundation for Angelman Syndrome Therapeutics" aka F.A.ST.. The weekend started with the 2 of us getting up early Saturday morning (without waking up the girls) loading the truck with our suit-case and hitting the road. We were in Chicago by lunch time and had some spare time to take in the sights. We walked up and down Michigan avenue , watching the mass of humanity piling in and out of different stores.................."tis the season". There is nothing that says Christmas more than people banging into one another on the sidewalk ...........and the non stop honking of car horns. It is so much different in the big cities than it is here at home. Don't get me wrong , we have running water, the Internet , and even direct TV. It is just a little more slow paced here. The highlight of our little jaunt around town was watching Cindy's first experience with a street peddler. This guy walks up to me , squirts stuff on my boots, whips out a brush, and starts shining my shoes. I didn't ask for , nor wanted my shoes "shined". The funny part is when he tried to collect 12 bucks "plus a fine gratuity" as he put it, from Cindy. They went back in forth for a while, she reminded him over and over that I didn't want my shoes shined to start with, and that he just squirted the stuff on my shoes as we were walking by. He managed to walk away with 1 dollar....................he even mumbled something to me " I feel for you man , having an ole lady like dat". We laughed all the way back up Michigan avenue til we got back to our hotel. The Gala was so much fun. It is great to see other Angelman parents that we talk to online , or that we have met in the past. It also gave us a chance to meet some new parent . We were given the opportunity to go to Gala from the kindness and generosity of the actor and father Colin Farrell, who's son has Angelman syndrome. He donated several pairs of tickets, so many Angelman parents could attend the event. We were fortunate enough to be able to meet and thank him in person and spend a few minutes visiting with him. He was aware that we had adopted our 2"angels" , he also knew about Jamie, and our loss. The night was awesome!!!!!!!!!!! We laughed , visited, drank, danced, and sometimes cried. Paula Evans the chairperson of F.A.S.T. spoke at the event not just as the chairperson ,but also as a parent. She shared a story of some of her daughters classmates and how they came up with an idea to spread awareness about Angelman syndrome. The children decided that they and the entire school district would be completely silent during lunch hour on Dec. 2nd so that they would know how it felt to be like her daughter Ainsley. Most "Angels" cannot speak , her story was very powerful ......and there were not a lot of dry eyes after hearing such an awesome , inspiring , hopeful story. Cindy and are so thankful for being able to attend the event and share stories with so many other parents!!!!!!!!!! I will post pics of me playing the air guitar later

Please take the time to
Check out http://www.cureangelman.org/ and http://www.speakout4as.org/

1 comment:

Nathan Charlan said...

Wow Jason! What an amazing event you and Cindy got to attend. To connect with all those families and share in the struggles and joys. It must have been an emotional rollercoaster. You are and always will be an inspiration to me. You were the first one I got to talk to after Zach's diagnosis and you "got it" when I explained my feelings. You're a great brother and I wish you and your family a Merry Christmas. God bless.