How do you even begin to describe such a surreal event as this…………
I guess I should just start at the beginning.
How did Winston end up cooler than his parents in his first 10 months of life?
And how did Winston manage to have music legends play a concert in his name you ask?
When I won HGTV's Design Star, I made a lot of new friends online via Facebook and MySpace. A lot of them were just people being super nice and wishing us well for winning. And one of those lovely people was a woman named Violet. She told me that her and her daughter had cheered me on.
Now, any time I got a message from someone I tried really hard to write everyone back. It was super hard to keep up but Violet was one that I managed to write back through MySpace. I was always touched that someone would be so kind to take the time to write me. And in Violet’s reply email, I said, “Is that Dave Grohl in your profile picture?”
Little did I know that by creating dialogue with my new friend, it would help us more than I ever could imagine.
“Why yes it is. We were holding each others kids……..my husband is Black Francis of The Pixies.”
photo by aaron lucy www.aaronlucyphoto.com
Very cool I thought but then I thought nothing else of it.
Don’t get me wrong, I LOVE The Pixies.....who doesn't?! Their music reminds me of some extremely fond memories. But lately I couldn't even listen to music because my soul had no room left with all that we were going through. Plus to me, people are people.
(Remind me I said that later on when I tell you how I acted like a complete tool in front of Jack Black……I am still extremely embarrassed that I became such a lame-o!!!)
To me Violet was Violet who nicely watched the show with her daughter. (Which by the way, Violet in her own right is pure briliance-- check out the band Grand Duchy and their album Petit Fours.)
I shared the brief story of my online chat with Violet to Chris and I don’ t think I emphasized who her husband was but in a brief mention…………….that was not until Chris and I were randomly watching the Palladium channel. The Isle of Wight music festival was on and guess who was playing? Why none other than The Pixies…… That seemed to jog Chris’ memory of my passing story and instantly he started harassing me about the who and what of the whole story. (Which really means he pulled a "Peter Griffin" on me the first time I told the story and he was totally not listening!) :)
I had been so casual about the who and what, that I had to go searching through my MySpace messages to pull it all up again for Chris. And yep, there was the message. Very cool but it led to constant harassment from Chris to get an autograph “for Winston”…………..
For the sake of my marriage I had to ask Violet but I was highly embarrassed!! The best part was that Violet saw through my email brilliantly and said she’d be happy to get an autograph for Winston.............. and Chris.
We chatted via email and one thing led to another and before I knew it, I was explaining to Violet why they hadn’t seen my show and what all had happened with Winston. It was as if Violet was there to be my online therapy. I don’t think she knew what she was signing up for but honestly, it was the most healing thing I could have done. Putting it all down in words and sorting through my heartache to a complete stranger. And yet, weirdly I never felt like I didn’t know her.
Instantly Violet became our fairy godmother.
Uncle Charles and Auntie Violet
photo by aaron lucy www.aaronlucyphoto.com
And so our friendship began to grow and I seriously "Doogie Howser"ed the poor woman with my nightly emails of our stories, drama, laughter and tears. Whether it was about nurses or doctors or swollen tongues, I laid it all out there. Not once did I ever expect anything from her. I just appreciated a neutral ear to bounce thoughts off of. She wrote me the loveliest emails saying that she was cheering me on…………..
And then all of a sudden, our fairy godmother realized she could do more than just be my online therapist. She could create a fundraiser and give us the most surreal present that anyone could ever give…………..and thus “Winston Calling” was created.
Holy pooperoni is all I can say…………..I still really don’t believe it all happened and I wish I could have pressed pause when we were there and just roll around in the loveliness of it all. Chris and I had not smiled like that in the longest of times. And every single, very cool person was nicer than I could have imagined. I was so worried to meet someone and be disappointed. When instead, I was only pleasantly surprised by each and every one of them........ they were nicer than I had imagined!!!
It was like someone let you hang out with the cool kids and you kept thinking, "When are they going to notice I'm not one of them?" When we came home you wanted to buy a caravan and become a groupie following them around........it was honestly that welcoming. I really can't put it into words but I will try.
Stay tuned for my next blog that goes into the details of our LA trip for "Winston Calling" and I'll post lots of photos!!! (This was getting way too long so I thought why not break it up and keep you wanting more!!!) :)
And before I go, how is Winston doing? Lovely and smiley as always!!! The boy really does wake up smiling and waving! Of course he's sick, but that seems to be a given right now! The first year of a child with a trach is pretty brutal in terms of sickness.
And we head to NYC for Winston's next sclerosing treatment January 28th for treatment on the 29th. Wish us luck!!! :) Happy New Year to all of you!!! I have a feeling that 2010 is going to be a brilliant year........2009 couldn't have ended any better. Thank you Auntie Violet, Uncle Charles, Todd, Jo and everyone else who donated their time, space and talents for "Winston Calling".
Big hugs-- jen :)