Sunday, August 18, 2013

August 16, 2013: New York, NY… Part 1



I am flying home from New York City as I write.  I have time, no internet, and a brain so full of ideas, experiences, and memories that it does me no good to read or listen to another word of anyone else’s before I get a few thousand out of my head first.

You know what is so MAGICAL about the game of life? 

Sometimes, I get what I want,

Sometimes I don’t,

Sometimes, I get more than I could have ever imagined.

I think that last line best defines/describes this New York trip.  It was MAGICAL.  I was invited to attend my dear old friend Joe Polish’s annual event, The Genius Network Mastermind Group Annual Event.  If you remember back, this was the event I spoke at only a month after Bella died in 2010 that got me rolling on the fundraising journey for Drs. Wagner and Tolar. 

One of the members of that group in 2010 made the single largest donation of any of my friends or businesses in the last two years back in that November, and I got to tell him in person on this trip about all that has happened, and specifically about Charlie Knuth’s gene therapy last month.

Folks, he cried.

I mean CRIED.  And… this is a big, strong, muscle-bound, tattooed, and pierced dude who lives in Malibu on the beach.  This guy hugged me like I can’t even describe.  He’s a self-made multi-millionaire; he invented a tool on the internet that has revolutionized how companies communicate their products and services to the world – he’s like an industry transformer - and all of that just fell away when he spoke of his new wife, and when we talked about Bella and the difference she’s making in the world.

I was so proud of what the EB community has been able to accomplish since the last time I saw this man.  Like any family, the EB family sometimes disagrees within itself, which is healthy, but we are all in TOTAL alignment (at least in the RDEB and JEB-h space since that’s who I interact the most with) that we want a safe, effective treatment that heals EB, not just the wounds it causes.  To give the report/update I got to give… I was really proud of us all.  That includes every single person in every single charity that has invested a dollar of their time, effort, or money to the cause, and that DEFINITELY includes every single person involved at the U of M who has collectively supported Drs. Wagner and Tolar’s vision for what’s possible. 

I could probably write seven separate blog posts for seven different amazing events that transpired.
Here’s a good experiment for me:  let’s see if I can tell a story in 500 words.

Providence story of the Day:

This morning, I headed to the airport on the super shuttle with very little gas left in my tank.  However, I was in a place of complete bliss.  I was in no hurry to be anywhere; the shuttle was picking me up at 9:30 and my flight wasn’t until 1… something… (did I mention I was tired?)  When I got to the counter, I said to the lady behind the counter, “my flight is 1 something…”

What I thought I heard her reply was, “fifty-nine.”  Remember that.  It’ll be important in a few paragraphs. 

So, I strolled off to look around; it was only 11 am at this point.  I saw that there was an InMotion store, and I got happy, because I had previewed several portable  bluetooth speakers on one of my earlier trips this summer in a separate airport while killing time.  My speaker for work died and I rely on it almost weekly for music therapy sessions. 

The associate working happened to be the manager, and she couldn’t have been sweeter.  She was really easy to talk with and talk about what I needed and she helped me demo 3 different speakers again, and she was brutally honest with her opinion in her own review of the speakers.  I found a real gem of a new speaker, called the JBL FLIP, did the deal, but while at the counter, we struck up a deeper conversation, and talked about life and death and grief, and I shared with her our grief retreat, which she wants to send her mom to.  Lastly, not only did she recommend a restaurant when I asked what’s good food to eat, she whipped out their menu, showed what she liked, and even told me to sit in her friend Rina’s section in the back if I wanted to get some work done.

I took her up on her offer and headed down to Figs.  I sat in Rina’s section, and started reading one of the ten books I was given as gifts for attending the event.  When my food arrived, I looked up, and sitting two seats down with no one between us were Dan and Babs Sullivan.  Dan is the founder and CEO of Strategic Coach, a super high-end coaching program for entrepreneurs earning a minimum of $100K a year.  I met Dan and Babs at the event in 2010, and saw them during this conference, but didn’t get to spend too much time with them.  Dan was one of the speakers at this event, and spoke at the event in 2010.  I have listened to countless interviews and CDs of Dan’s; he’s a freakin’ genius thinker, and a complete introvert and totally quiet. 

They started engaging me in conversation, and eventually told me to move over and sit next to them.  I got to spend about 30 minutes of one on one time with them, and it was like the student sitting with the master.  I got to ask Dan questions about the nature if transformation versus incremental growth, and listen to him explain things that just opened my mind up like a can.  What a privilege to get that time with them.  They finished up and headed to their plane and I strolled back up to the tech store to tell my new friend, Ayoka, what had happened.  Well, SHE started crying when I told her what a difference she made in my life by just being great and gracious with me. 

I strolled off to get a coffee – still outside of security - when my phone buzzed.  The email headline read:

Your flight has been delayed until 1:30.

It was 1:10.

Delayed till 1:30?  I thought my flight was at 1:59?

Then, that moment… that moment when you realize you got something really important really wrong… I looked at my boarding pass…

my flight was at 12:59!!!

I would have missed it completely!  However, I wasn’t out of the woods yet.  IF it was delayed to 1:30, that meant they began boarding ten minutes ago… and I’m still on the other side of security!

Yup.  Panic began to stir… right up until another email buzzed in:

Your flight has been delayed until 2:00.

Hey, that was the time I was planning on leaving!

How lucky is that?

THEN, our flight gets delayed again, and again, and again, and we didn’t even leave La Guardia till like 4:45!  At this point, I’m pretty sure we were gonna miss our connection in Houston, but when we got to Houston, they had bad weather there, and everything had been delayed and I was able to catch my connection after all! 

I made it home eventually, but I’ve been floating ever since.  I’ll share why in my next post.  Stay tuned…

God night.


  1. That's awesome...can't waif to hear more.

    Ali looks so little in those pics. Crazy!!

  2. I read all of your updates but only check in with a comment from time to time. Sorry, I'm shy on the web. Anyway, I wanted to give you an update that I have been volunteering in my local hospital's Ronald McDonald room for a year now after I was inspired to give my time after reading Bella's story, your story as her parents and lots of the other BMT stories from the EB community. I commented last fall about that. In the meantime, I got a promotion at work, but it just didn't feel right. Why was I not motivated to work hard and tackle the next work project and keep getting the recognition and that paycheck? I made a crazy move and quit my job so I could do something more meaningful. Now I'm volunteering with kids going through BMT at a hospital a little further away and on my way to a major career change to do more caregiving and supportive type roles. Lots of things have come together to make these changes in my life, but I have to say that your honest and heartfelt telling of your family's journey is a big piece of the puzzle. I couldn't be happier bringing joy to people, cutting back on things like cable and living a more simple and frugal life so that I could find a greater joy. Thanks Tim for telling Bella's story, for being honest and vulnerable and for the inspiration to do something.
    Joyfully, TLF

  3. You are an inspiration, Tim!
    Thanks for sharing your energy and making a difference...

  4. Great work & heart-warming blog, Tim.
    We're lucky to have you in our field!