Monday, August 25, 2008


MOSAIC
Category: Dreams and the Supernatural

I've always loved jokes that begin, "a priest, a farmer and an acrobat walk into a bar ...". I find the randomness of three unrelated parties suddenly hanging out at a bar for no reason, a funny premise from the outset. It almost doesn't matter what the punch-line is. If the setup is good enough, I'll think it's funny, based on that alone. What always makes a joke like that work is how the end ties them all together by some truth in the human condition. Truth is what makes us all laugh ...and cry. There are nuggets of truth in jokes like that. That's what makes them funny. Somehow, we resonate with the universal nature of our own humanity - no matter what labels we wear. So, when "a priest, a farmer and an acrobat walk into a bar", we know in our heads all those guys are different. But we know in our hearts ...they're really the same.

So ...a songwriter, a bar tender, an actor and a scientist walk into a bar. Separately, in different towns and not knowing each other, but still ...they all walk into a bar. Doctor Ed Weeber probably walks into a bar in Nashville, TN around 2005. He's working at Vanderbilt, on some experimental treatment for an obscure disease not many people know about. He's discussing chromosomes and genes and a myriad of things only a handful of people in the world can discuss with any intelligence, with his colleagues over a couple of brews, when he's possibly bumped into by a songwriter setting up to play. The two share a brief, meaningless glance and the songwriter says "sorry man". "No problem", says Doctor Weeber and the night continues to age without incident. Meanwhile, maybe that very night, a young bar tender in Kansas may have been leaving the bar and flipping channels on his radio dial looking for the latest rock hit. He stops briefly on the Contemporary Christian station and hears a former hit from the '90's. "This stuff sucks!", he might have said under his breath, and flipped on. He could have been on his way to see "The New World". The lead actor in that particular movie had been having the time of his life in Hollywood for a few years after receiving critical acclaim for his roles in films like "Minority Report" and "Phone Booth". That actor may have walked into a bar in LA that night as well, and bumped in to an executive coming out of the restroom who was on his way back to his table to discuss the production details of the upcoming American Idol season. Who knows if any of that actually happened ...but it could have. Whether it happened in just that way or not, these four, random parties would soon become inextricably linked by circumstances they could never imagine.

I'm a people watcher by nature. Sometimes I watch people in airports or malls and wonder what random thing they will do that will have an affect on the rest of the population. When Rosa Parks refused to sit in the back of the bus I'll bet she had no idea that one act would start a movement and emblazon her name on street signs from New York to California for the next forty years. When Mrs. O'Leary bought her cow I'm sure she had no idea it was to be the cause of one of the most famous fires in American history. The fact is, we're all connected. Eventually the immediate connections reveal themselves clearly. But the invisible, seemingly unrelated connections are just as powerful. Invisible though they may be, every single action taken by every single person on earth causes a ripple of reaction. We are not static. We do not operate in a vacuum.

When a friend I hadn't seen in over 20 years visited me two summers ago, it felt random. After observing my daughter, he told me she reminded him of one of our other mutual friend's son who had something called Angelman Syndrome. That "random" encounter drove my wife and I to the internet to research the disorder and eventually to a geneticist to have tests run on our daughter. While we were surfing the net for answers, the afore mentioned scientist, Mr Weeber, was discovering proteins and enzymes that were directly linked to our future as a family ...just across town. While those events were unfolding, a family in Chicago was struggling in emergency rooms and therapy sessions with their own little girl. The mother of that little girl, Paula Evans, was looking for answers and making connections of her own. She was reading about actor Colin Farrell's struggle with his son who had been diagnosed with a rare genetic disorder called Angelman Syndrome as well. In the midst of these swirlings, a young kid from Kansas was tending bar, playing clubs and working on making a record. Random people. Random circumstances.

On July 3rd, 2007, a Vanderbilt geneticist called my home and delivered the news that my daughter indeed had Angelman Syndrome, deletion positive (meaning her 15th maternal chromosome was broken). We took the 4th off and on July 5th, began searching for any and everyone we could find with children who had Angelman Syndrome. My wife and I contacted people via email and cold calls until we "randomly" found Terry Jo Bichell who was involved in Angelman research and knew just about every thing and everyone in the Angelman Syndrome community. She told us about a Dr Weeber who had actually cured the syndrome in a mouse years earlier ...interesting. Terry Jo was a wealth of information and she and Dave, her husband, quickly became friends of ours. We would share medication information, therapy techniques and relay stories to one another about the unique hardships of raising an Angelman child. One night over dinner, we were discussing Isabella's (my daughter) diet and how we believe it has helped her. The diet she is on is based on a doctor's care we were under just prior to leaving for China. The gist of it is basically putting nothing unnatural in the body. Nothing refined or processed if possible. The physical transformations we went through during that time were remarkable and we've always continued to practice those same principles with our children. Terry Jo was telling us, this particular night, about a woman in Chicago who practiced the same principles with her Angelman daughter and was getting great results as well. I got Terry Jo to give me the woman's name and number and called her the next week. I was just interested in discussing dietary intervention. It seemed like a big "coincidence" our daughters were on the same diet and having great results ...a coincidence.

When Paula Evans and I spoke for the first time on the phone, I knew the woman was special. We were instantly friends and partners on the same course. Do whatever it takes to fix these kids. Paula spoke to me in rapid fire sentences about the research, the diet, the therapies, the scientists and every little detail in between. I hung up the phone exhausted and energized at the same time. Meanwhile, I was waiting out the results of a song contest I had just entered. The song had been born out of the last five years of dealing with and feeling the effects of Angelman Syndrome. Random events.

While the Idol song contest was in the voting process and America was falling in love with "the Davids", I was exchanging emails almost daily with Paula regarding a benefit I was organizing to raise money for AS research. Paula, through her tenacity and diplomacy, arranged for Colin Farrell to donate two roundtrip tickets to LA, hotel rooms for two nights and tickets to his next movie premier to be auctioned off in the online auction. Unbelievable! Down to three contestants left on Idol. I just won the song contest. Random events.

On Saturday, May 17th, I attended my first ever Angelman walk and cried for an entire two miles watching families struggle to walk with their children who couldn't, stopping periodically to deal with seizures or overheating. It was heart wrenching to see that many children in one place who acted like and walked like my own precious daughter. Children trying desperately to communicate without words. Children that, without a miracle, would continue in that prison for their entire lives. That same night we held the first annual Bella Bash. The next day I got an email from Paula asking if I wanted to have dinner with Doctor Ed Weeber ...he just happened to be in town. What a coincidence. I was flying out the next day for LA and the American Idol finale but had that evening free. I had dinner with Ed Weeber, the man I might have bumped into three years earlier ...randomly. What he told me at that dinner sent shock waves through my body. He said "your daughter's condition is probably curable". I didn't say much that night. My thoughts were racing a million miles an hour. A week prior to that, Paula Evans had begun a new foundation charged with finding a cure for Angelman Syndrome. She had asked me to sit on the board of the foundation. I had no idea why. Dr Weeber, being on the scientific advisory board of the new foundation, told me something I'll never forget. I asked him, "why do you guys need a silly songwriter on this board? You're all WAY smarter than me". He smiled and said, "we don't really know. We just all know a silly songwriter is exactly what we need". Down to two contestants on Idol. Random events.

So, fast forward to right now. If you read "Full Circle", you know that amazing things have happened in the past few months and weeks with the song "Time Of My Life". You know it was played at the Olympic opening ceremonies. You know about the irony of my daughter being chinese and the reasons behind the writing of the song. You know that a bartender from Kansas is now a superstar and telling this story as well as his own amazing story all over the world through this song. What you may not know is that an entire community of people who live with Angelman Syndrome everyday, have adopted this song as their anthem. You may not know that the responses to the "Full Circle" blog have sparked interest from the major media for me to tell this story on a larger stage. You may not know that as of today, the Foundation for Angelman Syndrome Therapeutics ( FAST) is up and running and I am a proud board member. You may not know that Doctor Ed Weeber stands on the verge of breakthrough science that could mean a cure for my daughter, Paula Evans' daughter, Terry Jo Bichell's son ...and Colin Farrell's son. You may not know that if you're reading these words, you are now a part of the story. You now know something you can't un-know. You've walked through a door with thousands of other families. We are connected. All of these random events are converging in a serendipitous way to bring about a whole that is bigger than the pieces.

I don't know Colin Farrell and may never meet him. I've only met David Cook twice for less than two minutes each time. I've only spoken with Doctor Weeber face to face once. I don't know the end of this story but what I know is that the intersecting of all these random people at this time, in this place in history isn't random at all. Could David Cook singing "Time Of My Life" help galvanize and bring together the Angelman community? I think so. Could Colin Farrell's next movie premier shine light on more than just movie stars? Absolutely. Could the visibility from these random events help raise awareness for an incredibly rare, incurable disease and help raise enough money for Ed Weeber and his fellow scientists to find a cure for my daughter, Paula Evans' daughter, Terry Jo Bichelll's son and Colin Farrell's son? Could I one day have a conversation with Isabella because of these events? ..God, I hope so.

A songwriter, a bar tender, an actor and a scientist walk into a bar. What happens next ?.. I can't wait to find out.

If you want to learn more about Angelman Syndrome and the FAST foundation, go to http://www.CureAngelman.org

R

Wow! I checked his blog last night to see if he added anything, but hadn't seen this yet.

wow! tearing up!
what a guy. I love the song more and more and respect him so much.

Oh wow--this guy is awesome. I love this---thank you for posting it. Makes you stop and think.

OMG. I'm speechless. That story just built and built and engrossed me. I hope David is completely aware of this. I'm sure he is. I said it after reading Regie's 1st blog, and I'll say it again: I will never look at TOML the same way as I did before. I have actually grown to love the song - a song which is not in a genre I like. But its deep meaning, coupled with David's flawless performance, make it a winner. I now feel compelled to meet Regie Hamm, as well as David.

WOW is right... when a door is closed, God opens a window...

Serendipitous? Maybe. But maybe not so random, maybe meant to be.

I wish Isabella could meet Lindsey Rose someday...

I predict that TOML will be sung at next year's Idol Gives Back -- it is the very definition of an inspirational song, no longer a cheesy song at all, at all....

where's the tissue box?

Ditto on this Scott. I absolutely feel the same way. I started listening to TOML because, well it's David singing, but knew from the beginning that this was not really his 'type' of song. I now feel that all the pieces fell the way they did for a reason. It was absolutely meant for David to sing this song, for Regie to have written it, for it to be used during the Olympics - in China! I have always believed that things happen for a reason and this just enforces that belief.

You just say it in a much more eloquent way Scott!

I don't think it's random at all - this was all meant to be in exactly this way... this is an excerpt of my comment to David's recent blog...we'll have to stay tuned to see how this all works out... David and Reggie Hamm are going to be entwined in destiny...

"David....I am a firm believer that things in this world happen for a reason and I believe that you've been brought to the forefront by an unseen design. You are a beautiful soul and I'm thankful that you have given us such an opportunity to know you through your AI journey and your heartfelt communications with us. You have already inspired so many people with your music and your giving heart and I look forward to supporting your long and successful career for many years."

~laura

I love this man. He is so deep, so thoughtful. He is a writer, that's for sure. Wow. I think I'll be thinking about this all day. I think I need to read that again. Thank you SO much for posting that.

He's more than deep, he's profound.

There are a lot of people raising money for cancer research in David Cook's name. No American Idol has ever had the kind of reaction David has generated. I always thought that he was fated to win. Maybe this song is a part of the whole picture.

Shari

Here I go crying again.

David definitely went to Omaha and won AI for a reason completely beyond our comprehension.

This is way to good to be on page three....bumping.

I am so happy he won! I Like both Davids all season. when it came down to the two of them I prayed let the one that's meant to win win! See even God wanted David Cook to be the Idol winner

Chills and tears. Learned something new. Thanks for posting this.