Monday, August 26, 2013

August 24: NYC pt 2, Ali starts grade 2, and Julian TURNS 2!


What a great week.

First off, THANK YOU to TLF for your comment last week.  It was mind-blowing, heart-warming, and totally the cup of water I need to keep blogging.  I appreciate YOU and how much courage your life changes have required, and you made them anyway!  AWESOME.  Just AWESOME.  Thank you for your generosity in offering credit to the blog; I have a new "tag line' on my new business cards I just made, and it is "INSPIRATION DELIVERED DAILY."  By you sharing the impact the blog has had for you, I get to know that I am making good on my promise to do just that.  Thank you for sharing!!!

Alright, first... THE J-MAN turns TWO!

Thursday was Julian's second birthday, and yesterday we threw the big guy a party.  Being that he is completely infatuated with trains, we took him to our nearby Irvine Regional Park and took him on the train there.  Then, we picked up Ali, and had some fun in the pool.  He opened some of his gifts, which of course included various Thomas the Train toys.  Yesterday, he opened more Thomas the Train toys, actually much to my delight.  I really like the train toys!  Thomas is a little prissy and annoying for me, but the stories usually have a good moral for young boys to learn, and the "Thomas universe (island of Sodor, Misty Island, etc) is really pretty and reminds me of home in Connecticut where I grew up.

Awesome Thomas cake made by Grandpa!

We had a bunch of friends and family to the house yesterday and we spent much of the afternoon in the pool.  I gotta tell ya what a water baby Julian is!  He LOVES IT.  HE loves to jump in, to dunk, to get launched, to go under, all of it.  He's just so happy and joyful in the water... his belly laugh lights up the whole pool and everyone there always enjoys watching him delight over the experience.  It was fun, too because the friends were the same friends that all came to Ali's 2nd b-day party 5 years ago, and it was neat to see them all grown and in the pool swimming together.  Good times.

Watching all of Ali's 2nd grade classmates play together in line before the first day of school had a similar "my, look how they've grown" quality to it.  These kids were so little 2 years ago in kindergarten, and watching them all together on Wednesday morning, I had that moment - you know - that moment where you can't believe how big they got over the summer!  Funny stuff.  Anyway, Ali loves her new teacher, which makes us happy, and we already like how organized the new teacher is as well!

I love being a parent.

Alright, gotta share two more pieces of New York:

First, There is NOTHING like shopping in Times Square at 12:15 am on a Wednesday night while face timing with the kids back in California and taking them to the Disney Store to shop for souvenirs!  See, everyone in Times Square at that hour is either a uniformed police officer, or a tourist, so lord knows what time zone they are from and what hour it is for them.  All I know is that the Disney Store is open to 1am... that's a FAR CRY from life in suburbia!  hahahaha.  Now, don't be jumping in to tell me  how late the store is open in Downtown Disney, I'm sure that's late, too.  NYC truly is the city that never sleeps!

Aside from getting to sit next to one of my role models and mentors, Mr. Brendon Buchard, and aside from getting to have dinner with and talk with another hero, Dr. John Hagelin, and aside from becoming friends - or at least acquaintances with Dr. Peter Diamandis, the real unexpected moment in the trip was when Renee Airya gave the talk of the event.  Her talk was titled, "Flip Your Flaws," and it was only 10 minutes long.  Like a TED talk, however, it was LOADED with power.  Renee was a model who developed a brain tumor.  When they operated, they accidentally cut her facial nerve, paralyzing the right side of her face.  She had to wear an eye patch, because she could no longer blink.  However, while in the recovery room, she informed her surgeon that she would smile again.  

He smiled, then told her it was not medically possible.

6 months later, she had regained 60% of her smile.


By staring into a mirror every day and willing her self to do so.

She literally retrained and rewired her brain.

Thanks to recent breakthroughs in understanding the brain, we know of this concept of 'neuroplasticity;' of the brain's ability to rewire itself around trauma sites to recoup functions it has lost.  Renee's story is nothing short of a miracle, but it is a miracle she caused.

Up until her talk, however, she was still self-conscious because 40% of that smile still remains 'frozen,' and so she wore her hair over that side of her face...

...until this talk.  She pulled it back in a pony tail to 'expose' all of herself.  She admitted at the beginning of the talk that she was terrified to give the talk, and terrified to expose herself so vulnerably, but she believed that living with shame over 'a flaw' kept her from reaching her potential, and from reaching the people in the world she wants to help through her message and story.

I sat in my seat, FIXED on every word.

For more than 20 years, I have allowed my own perceived flaws to cause me to feel shame and hide out  from fully realizing my potential.  I have fought demons and merciless self critics inside who have labeled me, "defective, fundamentally flawed, terminally discontent, and fundamentally broken."  I have arisen every morning to a feeling of anxiety and dread, because I KNEW that 'something was wrong...' since I was fundamentally wrong, some part of my day was going to go wrong... that was the default experience first thing in the morning.  I strove to over achieve so that I could 'cover up' my flaws and 'atone' for my fundamental mistake... just being me.

I watched and listened to Renee systematically shed her shame and reveal herself to the room in real time. And I wasn't the only person to witness this.  When she finished, the entire room rose to its feet and cheered for her.  It was the most heart-felt response to any talk over the two days and 34 speakers we ended up having.  After the applause settled down, Joe asked the audience if anyone wanted to share what they got out her talk.

My hand shot straight up and felt like it touched the ceiling, some 20 feet above me.

Joe called on me, and I walked up to the microphone, shaking.  I raised my hand, and said, "How many others of you in here besides me are struggling with some sort of serious flaw?"
My voice cracked, and I just remained silent as I watched about 150 of the 200 business men and women quietly, slowly, but purposefully raise their hands in solidarity.

I didn't ask so that Renee wouldn't feel alone, I asked so I wouldn't feel alone.  I started crying, because as I said to Renee while on the mic, that feeling of shame has held me back for my entire adult life, and in watching her leave it behind on that stage, I chose to leave it behind when I stood up to speak.  Now, at this point, another round of applause went up and I walked over to Renee completely balling at this point and just hugged her in thanks... thanks for having the courage to lay it all out there on the line in front of EVERYONE.  She reminded me that when we lay it all out on the line for our fellow brothers and sisters, it creates a vacuum of reciprocity and permission for those around us to automatically shed any pretense and do the same.  So, I gave up my shame... in that room... on that day... in that city.

 I left it there.

I am free from shame!  hahaha!  It feels so good!  I have actually had the experience that everything is okay, and there is nothing wrong with me, with the day, with life, etc. for the past 10 days, and boy, it feels AMAZING.  I share this story with you, because I KNOW that many of us feels like we have some sort of flaw.  Some of us take a pretty good attitude with this, but for many, we let our flaws beat us up - either from time to time or regularly.  I realized this past week, that it was as simple as making a decision to give that up.  So simple.  This might sound like "Tales of the Obvious" to some, but please understand, I'm not special, I'm not different... if I've felt that way, and if Renee's felt that way, and if all those people in that room who obviously resonated with Renee have felt that way, I'm guessing a few of you reading this have too, and if I could give JUST. ONE. PERSON. the feeling of liberation I've experienced, I will have done my duty to pass on this gift Renee gave me.

Thank you, Renee!

God night.

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.

Sunday, August 4, 2013

Ali has surgery and Dr. Tolar blows our minds...


Wow.  So much to share.  Here we go.

Trip to Nashville was great.  Connected with the Hemophilia community for a second conference for those who couldn't make the trek to Seattle.  Totally different vibe.  Thought I did way better with the kids this time around; the Seattle trip helped me 'dial in' what each age level could handle musically and didactically.  While my talk did inspire several people to come up and share how much it resonated with them, I also got some feedback that some teens were turned off by it.  That's okay, because I can honestly say that it wasn't tailored in any way towards them, so that makes sense.

The best comment I got was from a man in his late fifties/early sixties I'm guessing.  He shared with me later that evening that when he walked out of the room at the end of my keynote, he looked at his son, and said, "Son, I think I just had a spiritual experience!"

The son replied, "That's because you just went to church, dad."

I would say that if you asked me if I'm 'preaching' at all in my keynote about overcoming adversity, I'd say I'm planting seeds, but I'm definitely not 'in your face' that you must accept the Lord to be able to overcome your struggles.  That's DEFINITELY not my style.  So, for the father and son (early twenties) to have that conversation afterward really moved me.

What does it mean to have a spiritual experience?

That's not an everyday term... like, "I had a good time..."

It means to me that he connected with something greater than himself.  I totally own that this is my interpretation of a spiritual experience, but he didn't say he had a 'religious experience.'  Notice the difference?  That is okay with me, in fact, I like the idea of it being a spiritual experience, because that is open-ended and intimate, and gives space for the sacred to arise in whatever way is best for the person.  At least that's my take.  I'm not looking to convert anyone to Christianity when I speak, but I hope to create that faith is a gift you give yourself... and I'm not concerned with what you have faith in, it's having faith at all that is the game changer!

On the home front, Ali had minor surgery this past Friday.  Turns out she was born with a inguinal hernia, and as she has grown, so has the hernia.  When we went for her annual physical this spring, the doc first noticed it when we told her Ali was having intermittent pain and swelling 'down there.'  So, scheduling around ours and the surgeon's summer vacations took us all the way out to this past Friday!

Ali was admittedly really anxious because she was afraid of getting poked for her IV insertion.  She had a B-A-D experience with this in Minn. if any of you long time readers recall.  So, for a couple of weeks prior, Ang 'practiced' the procedure with Ali, and then I made a custom music playlist (shock) of songs she specifically picked, and we listened to them and sang along with them for a few days before the surgery.  I also downloaded a Mickey Mouse Paint and Play app for my iPad that she told me she wanted... but I didn't tell her until I needed it to deliver a total surprise redirection that morning!  I also drove her down to the surgery center the day before with Julian, and we all walked in and I took her through the steps so there would be as little 'unknown' as possible that morning.

We kept her up late the night before so that when it was time to go to bed, she collapsed before she could even THINK about the morning!  When the morning came, she was scared, but as soon as we started listening to her tunes and singing them out, she moved right out of the fear and into the music.

It's funny.  I've done this with countless patients, but I was worried about whether it would work with Ali, because, well, she sees me as 'dad' not an authority on music for therapy, but it wasn't me doing the work, it was the music.  It's worked with Ang during delivery (x3), for Bella countless times, and for Julian, so why not for Ali, right?

As we were driving to the surgical center signing "Gangnam Style" at full volume in the car (me and Ali, that is), Ang commented, "Wow, you must have had A LOT of coffee this morning!" but that wasn't it.  I was generating the energy in the moment to keep Ali present, and having just accessed that 'zone' in Seattle and Nashville, it was pretty easy.  However, as I was singing, when we got off the freeway and approached our old children's hospital, which is nearby the surgical center, I started to cry under the music and behind my sunglasses.  Two things hit me.  One was a flashback of revving up the family energy for Bella time and time again, but the second was a feeling that I was being a good dad, doing what my daughter needed me to do to best care for her.  I don't know how much I've shared on here about the negative self talk I deal with internally.  Most of the time, I am working hard to be nice to myself, but in that moment, even the negative voice in me conceded that I was doing a good deed.

Once we got there, we put on Ali's headphones and she used my iPod to keep listening.  Then, we got in, and the amazing irony was that once we got into our surgical bay, they told me that they were going to give Ali gas and knock her out before they started her IV... the whole source of her anxiety!  Still, better to be over-prepared than under-prepared, right?

Ali has been resting at home since, and she's doing great.  She's been up and on her feet today without any pain.  She'll stay home from camp with me for two more days before Wednesday when she'll return to 'light duty' at camp.  She's working on learning how to use a sewing machine at camp, so that'll be a perfect, non-ambulatory activity.

Moving on...

Back in 2011, when we sat down with Dr. Tolar to ask what he needed financially and what he saw on the horizon for EB research, he outlined a totally separate protocol from the bone marrow transplant procedure Bella died from.  At the time, it was just a concept they hadn't tested yet, and they lacked the funding to test it in the lab.  It involved taking the defective gene out of a cell of an EB patient, replacing the gene, and giving it back to the patient without the dangerous side effects of BMT.  I certainly understood the idea, but only at a general high-altitude.  The details went right on by!  It seemed like 'the future.'

Well, seems like the future has arrived.

CLICK HERE to read why.

It's been about 2 and a half years since that conversation with Dr. Tolar, and the EB community has pumped over a million dollars into EB research at the University of Minnesota in that short time.  Ang and I really haven't had a chance to let it all sink in yet, but upon writing this, it feels pretty good to be a small part in something so amazing.

I fancy myself an idea guy, but this is a prime example of how you don't need to have the bright idea to be a part of making it a reality.  An elegant idea needs lots of heads, hands, and hearts to bring it into existence.  It doesn't really matter which role you play, when you know you've had a hand in it, it feels just as sweet.  Cheers to DebRA, EBMRF, JGSF, and EVERY SINGLE ONE OF YOU that has contributed to Dr. Tolar's research.  It takes a village.  It takes a village.

God night.