December 16, 2010: 5th gear

From our garden...

Heaveno!

Well, did you watch it?  Do you catch the special on Payton?  It was well done.  P.S... the guy from China... what???? craaaazy.  Also, did anyone catch the commercials for "strange addictions?"  Hi, it eat toilet paper, I sleep with my hair dryer... wow.  I really do feel a lot better about myself after seeing those spots.

Okay, okay, all kidding aside.  The special really was great, because obviously God is at the control of all this.  That special gave SUCH good press for our program up there in MN.  Payton is a miracle case, and he just happened to be the one they followed?  PROVIDENCE.  It was good for the program up there, but it was hard for us.



How I felt on the inside this morning (this was actually taken yesterday)


We made the mistake of watching it before we went to sleep last night.  First, we couldn't get to sleep, then we had weird and bad dreams all night.   I started the day today with what felt like two flat tires, and my head still hurts.  Being a visual kinesthetic learner, when I SAW it all again, it triggered a lot of pain.  I laughed at the phlebotomist who was being all nice to Payton since she was on camera.  She got PISSED at Ali and practically wrestled her for her blood.  I should pretend to shoot video whenever someone is 'not at their best,' and see if that sparks 'em into gear!

The toughest part was hearing Dr. Tolar 'consult' with Dr. Wagner and state that Payton was the worst case they had coming in, and then seeing Dr. Wagner say that he was the best patient coming out.  I remember Dr. Wagner remarking to me that Bella was the BEST patient to date going in...

How does one make any sense out of that?

Here's how:

EB will be cured sooner due to Bella's death than to her life.  If she lived and did as well as Payton, we would have taken her and RAN back home, and we'd be holed up in our home RIGHT NOW caring for her.  Instead, today I had a meeting with a woman who raises hundreds of millions of dollars each and every year as her job.  Would I have met her if Bella was alive?  Who knows.  Perhaps.  Am I CRYSTAL CLEAR that Dr. Tolar and Wagner are going to get the $1,050,000.00 to isolate the magic stem cell within a year?  Yup.  Know when I'm shooting for?

Bella's birthday.

Why not?

It would be the ULTIMATE birthday present.

Go big or go home.  Her birthday is going to come either way, and if we set this outrageous goal, even if we miss the mark, I guarantee we'll be WAAAY further than we would be if we didn't set it.  Would I be bummed if it took an extra year to do it?  Yeah, maybe a little, but I know that done is better than perfect, and if I want to put my money where my mouth is, I need an aggressive goal to snap me out of my comfort zone and into my growth zone.

In the last two months, I have been in the company of literally hundreds of people who could simply write a check for this amount.  What that has taught me is that people do just that every day.  If someone raises 160 million each and every year, that means they are raising roughly a million every 2nd to 3rd day or so, right?  Now of course, it probably doesn't come in steady streams, but when you put enough lures in the water, sooner or later you're gonna catch the amount of fish you want and need.



Our home company's visions for 2011 in our office... the blueprint...


Why else Bella's birthday?  Today, I also met with the head of community relations at South Coast Plaza, which is one of probably the two nicest malls in Orange County, Fashion Island being the other.  One of my music therapy colleagues who is a blog reader works at the mall in their offices and got me a meeting do discuss having some sort of fundraising event at the mall in the new year.

After a few minutes of brainstorming, I realized that we attended a similar fundraising event in Malibu just after Bella was born that was thrown by Andrea Pett-Joseph, an EB mommy who runs EBMRF.  As they were talking in today's meeting about different ideas, I immediately thought of Andrea and how she has already done something like this.  So, I don't have to reinvent the wheel to make it great!  Andrea's event was AWESOME!

So, we are going to have a gigantic event at SOUTH COAST PLAZA for Bella's 2nd Birthday!  It will be the perfect setting to complete the 6 month fundraising challenge I issued a few weeks ago, plus announce whether we reached our goal!  It will be on the Saturday morning before Memorial Day Weekend from 9-12.  Bella's Legacy is going to put on a jet pack in 2011!

P.S.  While we were at the mall today, Tiffany, my collegue, hooked Ali up with all kinds of goodies, including stuffed animals, candy canes, tickets for the train and the merry-go-round, and a free 5X7 with Santa!  Nice work, Tiff, that was REALLY cool!



Ahhh... popcorn shipping madness...


Okay, we are TIRED, so it is time to close up shop and get to bed.

P.P.S.  I built a fan page of facebook for Bella a long time ago, and I am now going to actually start to use it in 2011, so if you haven't yet, would you go to Bella's Blessings page and "LIKE" it?  We'd really appreciate that!



Ali actually got this in the mail yesterday... totally cool!


P.P.P.S.  Also, if you still need a gift for someone, may I suggest my book?  It will provide a full dose of inspiration for someone in the new year to stop taking all their opportunities for granted and finally live 2011 at the level they have always wanted to!

Okay OKAY, I'm done.

God night, and thank you for remaining here with us.