December 8: Cramming and still standing... kinda

Heaveno!

Well, thank you all you lurkers and regulars out there!  PLEASE keep those comments coming!  Boy, they REALLY help a lot.  You want to know how to help?  Comment.  From the first day we read the comments on our CHOC CarePages site, we've been fed spiritually by your comments.  To share the walk with so many, it is so far beyond what we could have imagined.  It is wonderful.  The most peaceful moments of my day are when I read your comments of support.

I have a request as well.  I know that you are free to write whatever you choose, but I humbly request during this time that you limit your comments to comments of support.  Would you be willing to do that?  Many of you have commented on how vulnerably I write. Well, yes, it's extremely vulnerable, and combined with the unimaginable amount of grief we're experiencing at the moment, I know for myself, I'm really extra sensitive.  Thank you for understanding.  I really appreciate it!



Okay, gotta keep it short.  I was gifted a 4 day seminar in Los Angeles on how to get booked to speak at colleges, universities, conferences, etc., and how to develop my public speaking skills to the next level.  The training usually costs $2,500, but the gentleman who is running it, James Malinchak, invited me as his guest when he heard my story at Joe's 25K Group meeting in LA last month.  Pretty awesome!

Public speaking is going to be a big part of 2011 for me.  Ang and I can already see the writing on the wall there.  It's the fastest way to raise awareness and funding for further research.  I'm also good at it, and have already had extensive training at it, but the piece I have never put together is how to get booked and paid the big bucks for speeches, keynotes, etc.  I'm really excited to add this to my arsenal of ways to make our vision a reality!

Then, tomorrow night, I am the closing speaker at the UC Irvine Medical Center's annual Cancer Patient Holiday Dinner!  I have a KILLER presentation on music therapy ready to roll complete with interactive music making by all 300 in attendance!  Can't wait.  GOTTA STICK TO MY TIMELINE... man is THAT a mantra I have struggled with forever!  LOL.  I have 10-12 minutes, but really, I could get squeezed, because we have a REALLY full program that has to end by 8:20, so I really get however much time there is between when I say, "Thank you, Alan...." and 8:20!



I think it is Wednesday, which means I think I just worked (albeit for maybe 1-2 hours at a time) at the hospital for three days in a row now.  Boy, it is going to be GREAT when I am a bit further out from this intense stage of grieving.  Right now, it takes a lot of effort and energy.  It's going to get better though.  I am so happy because I am playing my new classical guitar in the same treatment rooms I used to play my old guitar, and I can hear the difference in the room!  The new guitar is so much fuller and rounder sounding, it fills the rooms quite nicely.

Moment by moment.  Hour by hour.  Day by day.  Our lives move along in and out of pain, joy, sadness, boredom, serenity, excitement (Arsenal won today, for example).  Just remember not to stop the train at any one of those stations.  Keep moving, because this too shall pass, both the good and the bad.





I miss you Bella.  I can't wait till that moment when the eyes I stare at aren't from a photo, but are yours in front of me when I arrive in Heaven.  Man, that is just gonna be SWEET!

Know what else is gonna be sweet?  When I can look at my bucket list, and as my eyes fall on "Cure EB," and I can say, "DONE."

By October 11, 2020, there are various treatment options for children with EB, and no child ever has to die from it again.

Amen.  God night.