Thursday, December 16, 2010

December 16, 2010: 5th gear

From our garden...


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.



  1. W o W! That is sooooooo super duper awesome! I am so excited for this event......please assign me a task(s) to help prepare for this. I was able to catch the beginning of Payton's story, but then we had to leave. I'm hoping to watch the show again on the 17th.
    You are always in my everyday thoughts & prayers!

    Ps....when do you guys go to CO?

  2. I love Ali's letter from Santa. How cool is that? She's one lucky girl!!

    The event at the mall for Bella's 2nd birthday sounds AWESOME! Count me in.

    I watched Payton's story last night and it was awesome. It was kind of hard to watch at times because you could really see how much pain he was in. It just broke my heart. Because he was older he was really able to "voice" his pain to his mom and dad and I'm sure that is very hard on them. I did notice that before his BMT that his right lower eyelid was pulling away from his eye and after his BMT it had healed. The eyelid didn't fall away anymore. I thought that was pretty awesome. I also thought how wonderful that was that his bath didn't hurt as much anymore. What a relief that probably is not only to Payton but, to his parents too. It broke my heart to see his daddy crying when he was talking to the cameras about his son taking a bath and how painful that is for him. I also liked the different success stories like the one where the boy was able to swim now. The trial in MN may not be perfect but, it is helping some kids and that is great. It breaks my heart to think about how I wish it was different for Bella. I can't imagine how hard it must have been for you guys after watching it last night. Know that you are loved and Bella is loved!!

    I really hope that we may be able to reach out to some people who may have watched Payton's story last night and hopefully they will want to help donate. That would be great!

    Stay Strong Tim and Ang.

    Lots of Love,
    Amber, Craig, Malorie, and Liam
    The McLaughlin Family, CA

  3. I couldn't watch Payton's story for obvious reasons ;-), but i have checked his CBpage from time to time, of course i feel very very happy for him and his family, but it makes me feel more sad for those who don't have it so easy too...the way you see it helped me understand and see it in another way too...

    I'so glad the fundraising is going ok and looking good!!! I "liked" the fb page yesterday, and will keep on helping spread the word.

    Love and hugs

  4. Good job and amazing energy!

    Pretty flowers from your garden for pretty Bella.

  5. I know you two can make your goal for Dr. Tolar. I can picture his face now. We'll be there for sure for Bella's birthday. We won't miss it. Thanks for all you are doing for the EB community. Love and miss you all! Jennifer

  6. Hi Tim!

    The program isn't playing in my area until this Sunday, so I've set it to record. I can't imagine how difficult it was for you and Ang to watch and revisit so much heartache. I wrote a small note on Daylon's blog yesterday, my heart is breaking for them right now too, sigh. Will keep all of you in my prayers.

    I love the Santa letter, how cool is that? I'll have to "steal" that idea when my NanaBaby is old enough, heehee.

    Bella has her own ornament on our tree this year, and several of your books will find new homes this Christmas...hopefully inspiring many more to become involved in helping to find the EB cure...blessings, always.

  7. I watched the show Thursday morning! As I told Ang I thought it was so very good at explaining EB and really showing the PAIN involved. I will admit I cried through most of it - especially the section of Payton screaming in agony at bathtime. I have been following Daylon, EJ, Payton, Jonah, Tripp and Sam since finding the links from you all. My heart aches for all of them.

    I know with all of our help, with all the awesome contacts you have been making, with your (you & Ang) drive and determination the cure for EB will be found SONNER versus later.

    What a sombering point you raise - if Bella hadn't died would you have made all the contacts (you are right maybe but then again maybe not)! God and Bella had a plan! She continues to teach and motivate!

    Sending all my best!

  8. I will definitely be there for Bella's Birthday Fundraiser at SCP! I grew up in Orange County, so it'll be very familiar territory for me. Another gorgeous mall that you might want to check out for fundraising opportunities is Bella Terra in Huntington Beach. Its where the old, dead-end HB Mall used to be and it is AMAZING what they have done with the place. They have fundraising events there all the time & those always do very well there. Might be worth checking out. Just a tip!

    Ali's Santa letter may be one of the coolest things I have ever seen!

  9. Wow-Can't wait until that second birthday party, so cool. I missed the special on TLC but will definitely see if it is rebroadcasting so I can set the dvr. You guys are doing wonderful things and are setting amazing goals, which everyone knows you'll reach. When you get to the planning stages of the SCP Fundraiser, please let me know. I would love to volunteer and help you guys in anyway possible. Well I hope you all have a great trip. Ang was telling me about the Polar Express, sounds so cool. Hope your training is going well and you'll be on the slopes with lots of snow and NO sore muscles! Thinking and praying for you guys.

    P.S.: Please if you hear any updates on Daylon, let us know.

    Peace & Love,
    The Davidson's

  10. Nothing against your photography or any photos of you and ang and ali, but I look most forward to the photo of Bella at the end. Isn't she just the most adorable sweetie you ever laid eyes on?
    Thanks for continuing to include her photos in your posts.