Sunday, September 29, 2013

September 29, 2013: Meet our friends and neighbors, HEAL EB!


Holy cow.  Boy, is summer over.

What I'm specifically referring to is the pace of fall... back to school, church school, brownies, music lessons, etc.  We are r-u-n-n-i-n-g from week to week right now.  Don't ask me how we are planning anything if it is more than a week out.  We don't have an answer!  LOL.  Tuesday was school pictures already!  Friday was school campout, Saturday was Church concert at our regional retreat center... feeling like a gerbil on a wheel right now.

Please tell me this is happening to you, too?

Speaking of questions, thanks for the responses to my latest question!  I inevitably pushed a few buttons in my effort to hear from you all who have walked with us for so long.  Over the past two weeks, I've asked very specific questions in an effort to just hear more about who you are and what you are up to.  I like conversation because it's interactive.  Blogging isn't quite the same, and I'm going to try on my part to continue to ask questions to spark dialogue... and I promise to tone it down and retire the "lurker" comment.  It's a word that can actually be taken offensively, and even though I don't mean it that way, consider it retired.

Back to the subject of this post.  Meet our friends, Heather and Ryan Fullmer!  They founded Heal EB, a non-profit to fund EB research and raise awareness.  Their son, Michael, has EB.  They are from northern California, but recently moved down to Orange County, where we live, and are really only about 15 minutes from us!

We had the chance to get together a while back for breakfast and I think I might have mentioned them before.  Michael is absolutely adorable, and it was great to see Ali and him play, since Ali is a vet when it comes to hanging with a kid with bandages.  She didn't even bat an eye.  Ryan and I have been keeping in touch pretty regularly and they are throwing their first EB awareness event down here in Orange County coming up in early October.  If you live here locally, will you consider coming out and supporting them?  Unfortunately, Angelique and I will be out of town at Ang's little brother's wedding in Florida, so we can't make it.  However, it's at the Discovery Science Center, which is always a fun day/night out for any family.  If you haven't made a trip there recently, please consider making your pilgrimage there for this event so we can help continue to support EB research!

You can learn more about them at

God night!

Sunday, September 22, 2013

September 22, 2013: What's a boy gotta do?


What's a boy gotta do to get some interaction around here???

2 comments?  Sheesh!  I was hoping for a little more than that!  Oh well, Lurk on. ;-)

What a week.

What an AMAZING week.

On Tuesday, Ang, my good friend and ROCK STAR music therapy colleague Kat Fulton, and I went to a business/success seminar at the Anaheim Convention Center.  We saw Les Brown (amazing), Terry Bradshaw (so-hilarious-you-swore-he'd-been-drinking), Tom Hopkins (educational and funny), and many others, but the highlight (for me) was definitely Mark Kelly.  It was pretty cool when he introduced his wife, Gabby Giffords as well, but I wanted to hear from Mark.

You probably know Gabby's story, but I don't know if you know Mark's.  As you know Congresswoman Giffords was shot in the head and pronounced dead while Mark and his family were enroute to see her.  Imagine seeing CNN pronounce your spouse dead on national TV while you are racing to see them one last time.  How messed up is that?  What a roller coaster that must have been for the whole family.  Anyway, in addition to being Gabby's caregiver, Mark was the shuttle commander of the Endeavor for its final journey into space.  While Gabby was in the hospital, he piloted that thing into space, to the space station, and back again.  What kind of superhuman focus does THAT take???

One of the most inspiring things he shared was this:

How you start out in something is not a good indicator of success.

After Commander Kelly's first landing on an aircraft carrier long before becoming an astronaut, his commanding officer asked him, "Are you sure you want to do this as a career?"  NOT the most inspiring comment your C.O. could make.  He went on to share that he was not really a good pilot... at first, but he worked his ____ off and rose through the ranks, flew in the Iraq war, and eventually went to NASA.  Not too shabby for a poor starter.  It gave me a lot of confidence, and reminded me that it's not how you start, it's how you finish.  It ain't where you been, it's where you're goin'.

I ran into a fellow TEDx speaker coach at the event as well.  We are both coaching teens that are giving TEDx talks next month.  One of the opportunities for further training and development was for a stock trading course, which she signed up for, and then invited me as her guest!  So, yesterday and today, we attended a 2 day course on learning how to trade stocks and how to take back control over our investment and retirement accounts.  It was so empowering!  As you know, this past year I have really taken on growing my ability to understand and manage money better than ever.  Since May, I have learned a lot, and I still have a lot to learn.  However, I am sooo grateful that ANY OF US can change course in ANY area of life AT ANY TIME if we simply choose to.  It really is awesome.  I have never felt better about my understanding and relationship with money... which is kind of important, right?

I don't want to retire broke, and the statistics in the US about how many people will retire broke today is alarming.  Plus, I don't want to feel stupid when it comes to being a good steward of the money we are working so hard to squirell away!  So this weekend, my colleague and I had the blinders torn off us!  It was so liberating!  I now understand how people make money in the stock market, and folks, holy cow, it is not nearly as confusing as I made it out to be in my head.

One of the amazing things I love is life long learning.  It is great to know that if there is something you want to get better at, you can just go out and read a book, subscribe to a magazine or website, take a course or seminar, hire a mentor or coach, etc.  NOBODY is stopping you or me from learning ANYTHING we want.  I know it is not like this everywhere in the world, and I am grateful for this privilege.

In addition to attending two totally inspiring events, I had the opportunity to give TWO talks this week on the benefits of music therapy.  I love teaching people about what I call "the third space for music." In our culture, music occupies two spaces in most people's head: entertainment and education.  To literally create "a third space" in people's head for music is such a great experience, because everyone intuitively knows what I'm talking about since we all use music therapeutically already!

On the home front, Ang had to go to Houston this weekend to deliver some training for her company, and the feedback was off the charts!  I'm so proud of her.  She is kicking butt and taking names in her job right now (as if she ever isn't... the girl has the most amazing professional work ethic and track record... she constantly inspires me to be better at everything I do).

Ali started Brownies!  Holy cow, seeing her in her Brownie vest... what a big girl she's become!  Second grade is going well; she loves her new teacher.  Back to school night was this past week, too, and I have to agree with Ali about her new teacher... she rocks!  Super organized and totally laid back at the same time... great combination.

Julian is running faster and faster by the day, and he runs his mouth even faster!  (The apple doesn't fall far from the tree).  I am home with him part time right now, and it is so much fun; it feels illegal!  He is just such a blessing; I am beyond tickled to play/watch/read hours and hours of Thomas and Friends!

So... what area of life do YOU want to learn more / get better at?

God night.

Sunday, September 15, 2013

September 15, 2013: What is YOUR central question?


What is the question you seek to answer each day?

Mine is the following:

"How do I inspire a million people a year EVERY year?"

I ask this question every morning as a part of my morning ritual of powerful questions, statements, meditation, and planning.  I feel like if I can deliver on this, then I will be of good use to God and his children.

Do you HAVE a central, primary question that drives you, guides you?

If so, what is it?

If not, what would it be?

Take a moment to think, create, and share.  This community has been lurking a little too much lately and not commenting... which is partly my fault for not engaging you with questions to answer I guess.

I look forward to reading your comments!

God night.

Sunday, September 8, 2013

September, 8, 2013: Pay it Forward...


First, big thanks to grandma and grandpa for throwing me a wonderful birthday meal last night!

Throughout my journey with and after Bella, I have met several people who have helped me out as a result of being inspired by our story.  Well, this week, I had the opportunity to do the same.

Meet my new friend Mikey Oliveri.

Mikey has Muscular Distrophy.  At 6'2", he all but 75 pounds.  He is a young man who has chosen to live independently despite his diagnosis.

See, according to Mikey, he's not handicapped, he's handicapable.  Mikey hasn't let his diagnosis define or limit him.  Watch the video, "Hey Richard, it's Mikey," on his blog which I have linked below.  It's amazing.  My good friend, Joe Polish, found Mikey's video online and was immediately inspired by him and before you know it, Joe left a voice mail on my phone with him and Mikey on the line!  It was clear that Joe wanted Mikey and I to connect; Joe is a master connector.

So, I hopped on the phone Friday night and spoke with this young man.  He shared with me his story and his challenges, and we realized we were definitely cut from the same cloth in terms of how we think about life.  It was also serendipitous that we are both curriculum graduates of Landmark Education, a seminar company the has some really powerful personal development programs.

Mikey just wants to live a typical life of a young man his age, but his diagnosis creates some pretty serious challenges, and recently his stomach stopped working, requiring him to get a J-tube placed for nutrition.  He just wants to go out with his friends, live independently, and, well, just live.

Despite these challenges, he still wants to be the first disabled person to go to space.  How awesome a vision is THAT?  He already holds the record for the highest sky-dive of a disabled person, and was able to fly in the Zero-Gravity Jet recently with his sister.  He said it was the first time he didn't feel disabled, because there was no gravity weighing him down.  With muscular dystrophy, he lacks any muscle tone to move his body against gravity through space.   Well, in Zero-G, that experience disappears.

So, Joe knowing what I've been through and how I've worked to transform my tragedies into triumphs, put us together, and Mikey shared something with my that blew my mind.  He gives inspirational talks at schools and to groups, but declines getting paid, because he's afraid to earn money, because it will kick him out of the social security system.  He doesn't understand how to get paid to share his inspirational story and amazing attitude.  So, he remains trapped mentally.

I began to wonder how many people are stuck in that same conversation.  How many people are afraid to try and make a go of it on their own, when the government gives them $ - and will pull that $ if they work?  I told him about the amazing man, Sean Stephenson, the 3'2" wheelchair-bound man who saved my marriage.  Sean has brittle bone disease, but hasn't let thatt stop him from becoming a clinical psychologist, author, speaker, and all around inspiration.  I met Sean through Joe (told you Joe is the master connector!) back in 2009, and he provided me a single coaching call that changed the trajectory of my marriage.

So, I decided it was time to pay it forward and help Mikey create a bigger vision.

We talked about his desire to be free from the system, and that if he could figure out how to do it, he could then teach others just like him how to do it, too.  Especially, because much of the roadblock is just fear of the unknown.  Now, Mikey is FIRED UP.  He's got a big following online, and he's going to create a timeline for getting free from system, and we're gonna do what we can to share the resources and tools he'll need to learn how to get paid (well) to share his (flipping unimaginably inspirational) story so that he can make it on his own.

Meanwhile, he's driving himself to the Mayo Clinic in Rochester, MN this week to see if the GI team there can figure out what's wrong with his stomach, because no one else is willing or able to explain why it shut down.  P.S.  I'll be on email shortly with the docs at U of M for a few referrals as well.

Will you share his story and videos please?  He's amazing.  Make sure to watch the Indiegogo campaign video as well.

Go to his blog and share it with your peeps.  Many people have made this request about THIS blog... I now humbly ask that you do the same for Mikey.

God night.

Sunday, September 1, 2013

September 1, 2013: Fit and Fun at 41!


Well, it's Sunday night, and yesterday I turned 41!  I just had the most wonderful birthday thank on three fronts:

1)  Got travel points?  My wife Angelique surprised me Friday night with an overnight trip for the whole family to San Diego!  All that summer travel payed off!  We stayed right on the marina waterfront in downtown at the Marriott Marquis.  The attendant at the front desk gave us a beautiful room overlooking the pool and the marina beyond it.  We invited our good friends the McGoverns, who live kind of close to SD, to come on down and play with us and they did!  After a FOUR HOUR drive from Orange County (usually takes an hour and a half), we decompressed in the pool with the McGoverns, then changed and ate at the poolside grill for dinner.  I invited a close friend and colleague, Kat Fulton to come down for food, and she mentioned that our mutual friend and colleague, Lauren B. was in town that day, so they met up with us for dinner, and we all sat around the fire pit on the deck having a blast!  When it was time to take the kids upstairs, we walked in our room, and within about 5 minutes, a fireworks show went off in the bay right outside our marina!  We were 7 stories up, so our view was perfect!  Then, we slept in, hit the pool again this morning, then took a tour in one of those buses that turns into a boat, and cruised around in the San Diego harbor checking out seals and sea lions and all kinds of sail boats; the Tall Ships Festival was happening this weekend, so we saw a lot of beautiful sailing ships as well.  Then we headed back to Orange County tonight, and the kids (and Ang) have CRASHED!  I'm still hopped up on the coffee from the drive home ... and ...

2)  Arsenal BEAT Tottenham 1-0 today!!!   GOD LOVE THE DVR!!!  I set it before we left town, and got to watch the game tonight!  I know, I know, this probably means nothing to you, but I am a diehard Arsenal fan, and this is a BIG rivalry in England, and there is a subplot beneath it, which is that... hahaha, wait a minute, you really don't care!  LOL I was just about to go on and gush about all kinds of details that if you're not a fan, really aren't worth reading about!  Sigh.  It's hard to be an Arsenal fan in southern California.  Let's just say that if you can even FIND a english football fan, they are probably a Manchester United or Chelsea or Liverpool fan, so, well, I'm lonely.  :(  hahahahaha weep weep weep!  Moving on...

3)  I am not really good at planning or organizing, so I launched my giving up my birthday for EB campaign after my last blog post, and sent out maybe 5 days of messages on Facebook about it.  I'm sorry I didn't even have the foresight last week to mention it on here!  We created a new personal fundraising page on the PUCK website where you could host an online fundraiser right through our website.  Nice and easy!   This was the first time I used it, and it worked great!  It's also the most money I've raised in three years of giving up my birthday for EB.  You can see the campaign if you CLICK HERE.

I originally set my goal for $500, but I blew past it within like 3 days!  So, I decided to really go for it and I doubled my goal to $1000 but came up a little short, but the campaign is technically still open, so if you would like to support the docs in Minnesota with their work, please feel free!  Every buck counts.  That's how we've collectively raised over a million dollars in less than 3 years for the U of M!  Lots of organizations raising a little here and a little there, sometimes a bunch here, and a bunch there, and like I said, within 3 years, the docs have the funding to test their elegant ideas, and lo and behold, they work!

If you ever feel moved or called to do a fundraiser to support the EB research at the U of Minnesota, it's really easy to set up an event - the money goes straight through PUCK to U of M, so you don't have to collect any money, you just send people to your page and they do the rest!  CLICK HERE to learn more.

The one thing I've learned over the past three years is that giving up your birthday is a really easy way to fundraise.  I heard two other speakers talk about it when Bella passed away, and I thought it was a novel idea, and because of the viral nature of social media, it makes it so easy.  I just sent out I think 5 or 6 updates over the week on my FB page, and then sent a single email to a group of people that contributed to it last year.

It wasn't like I had to do an event or sell anything to give a portion of the proceeds... it was much simpler, and frankly more efficient since 100% of the money given went straight to the U of M.  That's the point!  It probably took me 20 minutes to set up my page, and a combined extra 40 minutes to send out my email and my handful of FB posts.  Not bad for an hour's worth of work, right?

I'm sharing all this because a comment I hear a lot from friends and supporters is that they want to help out, but they are intimidated to take on doing a fundraising event.  I agree!  I am TOTALLY intimidated right now with the golf tournament we are holding in less than 2 months!  I get it!  So, if you want to get involved, make it easy on yourself, and do a birthday campaign.  I can't think of an easier way to share the cause and raise a few bucks!  Email me at if you have any specific questions or need any help along the way!

To close, the journey from 40 to 41 was AWESOME.  What a gift. I was blessed in so many ways this past year, and I am even more optimistic about this next year.  Thank you for continuing to stay connected with me and my family and the whole journey.  It's all a journey; sometimes it's a comedy, sometimes an action/adventure, but even though there are challenges and sadness, I don't see it as a tragedy, because no triumph or success worth experiencing was won without challenge, setback, and/or sometimes a genuine boot to the teeth.  In the end, I don't want to reach the finish line of life having snuck through the game taking it easy.  I want to arrive bloodied, bruised, and battered, having left every ounce of energy on the field of life.  I want to look my maker in the eye and say I gave everything I had in me to make this world a littler better off.  I want to gaze at my daughter Bella and say, "I did everything I could to honor you, both while you were here, and after you left," and have her smile, and beam back at me, "I know you did daddy, and you did a GREAT job," and then feel the warmth of my maker reply, "I agree..."

So this next year, I'll continue to play ALL OUT...

... like my life depends on it...

See you on the playing field!

God night.