Wednesday, September 28, 2011

September 28, 2011: Back on Track... (almost)

Thanks Dwight and Myrna!  Look at this hip little schoolgirl!


Hahaha, I was planning on getting back on track last night and posting a usual post with pics and lots of words like I usually do, save for this past week of craziness... then I went to bed...

... I thought, "I can just do it in the morning.  Right now, it's time for some much needed rest."

and rest I finally got.  So, back to it!

Last Wednesday, I drove to Phoenix to attend my dear friend Joe Polish's event he threw with his buddy Dean Jackson called "I Love Marketing."  They have a great podcast at that is really funny and informative if you want to learn about marketing.  It is something every organization faces, and many cringe or shrink from, but it can be fun, and when it's done right, does more to allow an organization to realize its dream than anything else.  After all, what good is your message if you don't get it to the people who are looking for it and need it?

I stayed with my good buddy Jim, and hit the hay quickly to get a good night sleep before my first day of an event.  Live events are high intensity/energy days for me.  When I go to them, I elevate the energy I put off very consciously, and as such, I need to have a full tank of gas heading into any live event!

Thursday morning, I walked into the event, and wasn't there 5 minutes before a husband and wife who saw me speak at Joe's event in Jan (see the video here where I explained why I wear fabulous socks whenever I wear a tie) came up to me.  Sure enough, the first thing the wife asked was, "So, lemme see your socks!"  I guessed someone would ask me that question, but not that fast!  I had specifically picked out my two favorite loud, fabulous, striped socks for the two days, and was only to happy to show 'em off!

Then, the most wonderful thing happened.

A gentleman who I would describe in his late 20's/early 30's who is gotta be 6'4", shaved head, and ALL MUSCLE, walks up to me and says, "Hey brother, I just want you to know how many times I have brought people to tears since January by sharing your story of your socks."

I was stunned.  I had totally underestimated the heart inside a young guy covered in muscles.  Moral of the story?  Never judge a book by its cover.

Heard that one before?

Yeah, so had I.

Didn't stop me from ignoring it, though.

So, just maybe it bears repeating in a different way...

Don't discount what's on the inside because of what's on the outside.  Would you want someone to do that to you?  Yes, we all do it, consciously, and subconsciously, but it doesn't mean we can't be aware of it and practice overcoming this.

Thursday was great; I reconnected with lots of people I hadn't seen at an event since last January, or May, and overwhelmingly, everyone wanted to know how things were going on the P.U.C.K. front.  I was proud to tell them about the trip to D.C., and about the recent breakthrough success Drs. Wagner and Tolar are having with the BMT treatment having eliminated one of the chemotherapy drugs and substituting it with radiation.  The difference in outcomes of the first two patients has been a little bit mind boggling compared to this time last year.  The kids aren't getting sick!  Ang and I have such mixed feelings over this because it has only been a year later, and they seem to have "fixed the problem" they were having with adverse reactions to the conditioning regimen...

... if only we had waited another year.

Boy, that'll mess with you, lemme tell ya.

However, the only reason they switched it was because of Bella, Daylon, and Elle last summer getting so sick from the treatment.  If Bella hadn't been in the mix, they might have - incorrectly - assumed the adverse reactions were "a JEB thing."

And so, Bella's legacy continues to crystalize... Bella's life and death will make it better for all EB kids behind her.

Still, it is a bitter pill to swallow, and I have to recreate that legacy consciously in order to function.  The dark thoughts of regret and second guessing lurk just barely out of reach, waiting for their chance to pounce on my heart and swallow it in despair.  I remember them; they hung around every single morning during rounds.  I could hear them in the distance, just hiding outside the light of God's torch, whispering loud enough so I knew they were there.  I have walked through the forest of grief for just under a year now, used to holding the torch up, used to feeling their presence, used to never feeling alone, because they are never far away.

That is why I can never stop fighting for a cure.  Because we can't change the past, at least we can work toward a better future.  One day, there will be various treatments for kids with EB, and no child will have to die from this disease again.  As an orphan disease, this is not a guaranteed outcome.  This requires tireless action from within the EB community to ensure that day arrives.

There is so much more to tell you about the rest of the week, but I'll tell you about the rest tomorrow.

God day!  (it's 9:55am PST)


  1. Bella always looks like she knows so much. Like she KNOWS so much. She was, is, will always be, amazing. What a beautiful soul... God's plan is greater than ours and I admire your strength in how you work to understand and come to terms with that. Sending you and Ang heartfelt wishes for faith in those low moments. Bella is in all our hearts and she truly is helping other kids toddling in her footsteps. <3

  2. Thanks for updating us Tim. The waves Bella's life, and death, made in this world sometimes hit you when you least expect it, huh?
    Love on those sweet babies as much as you can. They turn into kids with minds of their own SO FAST! It would be easier getting a snuggle from a greased pig than my own baby at this point (seriously, the analogy popped into my head as I was chasing a naked, squealing, 13 month old after a bath with lotion and a diaper - EPIC battle. I won in the end *flex*).

  3. Do not dwell on the past, focus on the future. Just think, Bella is one of the pioneers for this new successful treatment against EB. Remember when the first artificial heart was developed and Barney Clark had the first implanted device. Now, 25 years later, there are several advanced treatments for heart failure. Without someone taking the leap and chance to be a pioneer, the advances may not have happened.

    When will you start showing us Julian's fabulous socks of the day?

  4. Good update! My heart goes out to you, it still seems do real. Is that the outfit I sent J?? I didn't expect it to fit yet!!! :) I agree with Tracey, Bella looks so wise doesn't she?

    Much love.

  5. WOW...amazing how much Bella and Julian look IDENTICAL!!! Always thinking of you all and loving to hear how things are going. God bless!

  6. I may come and steal your baby. Just so you know....I mean, I'd return him when he needed to be fed. But I may steal him.

  7. Man oh man Bella and little man look a lot alike

  8. You are welcome. Ali really does look like a hip little school girl. She is beautiful. Julian sure does look alot like Bella. What a lovely family. You are such an inspiration to all. Take Care, God Bless.

    All Our Love;
    Myrna & Dwight