Sunday, October 30, 2011

Sunday, October 30, 2011: T'was the night before Halloween...


... and all through the house...

... there was candy already from the church Halloween party today!  LOL.  The party fun for Ali has been non-stop since Friday.  Oh, to be 5 (and a half) again.  Ali's after school program had a costume party Friday afternoon, one of our new friends from our new church invited us to their house yesterday for a big afternoon Halloween party, and today, the church children's program hosted a big party as well.

Party Foul...

I remember when Halloween was only one day long...

I sound like an old man!  I remember when...  uphill both ways... barefoot... in the snow...

only one day a year for Halloween!  LOL

Look at these 21st century men!  LOL

Church was good today.  After Bella's one year anniversary, I haven't cried in church.  That is a welcome relief.  I wanna feel good in church!  Although, I did have a moment today; Ali was drawing on one of the concern/celebrations cards, and after she left for her "Worship and Wonder" class, I opened the card up, and it read:




Just like that.  Angelique later told me that Ali asked her how to spell God and Jesus, but didn't say anything more about it to her.  I didn't get a chance to ask Ali about it later, but it was sweet to see Bella on Ali's mind while she's at church, too.

On Saturday, Ali and Julian were hanging with me in our bed while mommy was in the rocker, and I really noticed the size difference between Ali and Julian... obviously a bigger size gap than from Ali to Bella when she was born.  The moment caused me to pause and try to imagine Bella right there in the middle of them, hanging out in bed with us.

I never wanted 3 kids (didn't want Ang and me to be outnumbered!) but in that moment, what I would have given to have had all 3 of our kids together.  Then, I realized I'm going to have to wait till not only I'm in heaven, but for Ali and Julian to get there as well before that moment can occur.  That feels like an eternity from now.  However, I really do believe that in that moment, it won't have felt like anything more than a blink of an eye.  I remind myself that as a linear construct, time is totally made up.  Our experience of time is totally subjective and nonlinear.  You know the drill, time flies when you're having fun... and it drags when you're bored... ever been in a traumatic event?  Then it r-e-a-l-l-y slows down.

I can't recall if I've ever rambled about my Bliss Theory of Time before.  If so, it was a while ago.  It states that time occurs at a rate equal to the bliss you are experiencing at any given moment.  Just a fancy way of restating what I said above... sounds nerdy though, don't it? ;-)  LOL... sorry teachers... couldn't resist!  Seriously though, what's key to this is not the bell curve of the bliss/time continuum, it's the long tails on either end that make me ponder.

If time speeds up when you are experiencing bliss, and heaven is the ultimate state of bliss, won't the eternity of heaven be experienced in an instant?

If time slows relative to suffering, and the ultimate level of suffering is hell, wouldn't the eternity of hell really equal being frozen 'in time' in your suffering?  To me, this matches our more linear notion of eternity.

What I can't reconcile with all this yet is the phenomenon ultra performance athletes and artists call "the zone."  In the zone, awareness hits a heightened level, and it occurs like time slows down, but I submit that time is not slowing due to the performer's state of suffering.  It's quite the opposite.  So, once again, we uncover two truths.

The biggest pitfall of whether there can even be truth is the presumption that there can be only one.

For example, in chemistry, how can like attract like and opposites attract?

How can I have sadness and joy in my heart at the same time over the death of Bella and the life of Julian?

It's why the nature vs. nurture argument is fundamentally flawed.  It presumes only one can be the truth.  We know now through research in genetics and behavioral sciences that it can often be the combination of the two that leads to all sorts of dis-ease like diabetes, addiction, and cancer.  Two truths.

Nature  (genetics)


Nurture  (environment + behavior)

I shall now crawl back out of the rabbit hole.  ;-)


Thanks again to all who participated in International EB Awareness Week!  We were really thrilled with how much attention EB got last week.  Our new and improve PUCK website had over 3,000 unique page views by Friday.  We had over 300 people text TRIPP or BELLA to 50555 and donate $10 each time to the U of M EB Research team as well.  I saw my poster shared over 60 times on facebook, and this video got A TON of exposure as well... something like 2,400 views last week!

Here's another great one you may have seen that got a lot of exposure:

There are just so many good people out there bringing EB to light.  Thank YOU for doing your part.  It takes a lot of swings with a pick to split a boulder, and the first hundred or so may look like they're not accomplishing anything, but every single swing was needed to make the one that ultimately splits the boulder possible, right?  And so it is with us.  EB needs each and every one of us just taking one small step past what we think is comfortable or even possible.

One of our values on the PUCK website is Vision.  This is what we say about Vision:

"We recognize that the only pathway to discovery is through what is currently "impossible" or "unattainable." We are comfortable facing the impossible, because it means we are pointed in the right direction; the direction toward discovery."

This is not always an easy philosophy to live, but it's made possible by the value we place right above it on the site:


We tone it down a little in the verbiage in how we describe faith, but make no mistake, our trust in God is that when we work for Him, we are working for the greater good of all, and not ourselves.  This is a life worth living, a game worth playing.  This is the gift of faith.  It grants vision.  Vision grants leadership, leadership inspires action, and action produces change.

It all starts with Faith.

Lastly, thank you all who shared "through the looking glass" your perceptions on what is present in our marriage that keeps us part of the 5%... when you're in it, the view is different, so thank you for showing us a more complete picture of ourselves!

God night.

Ironic that I found this photo tonight after writing what I wrote...


  1. Happy Halloween to you all! We are always thinking of you and praying for every family and friend who faces EB in any way, shape or form.

  2. The little movie about Tripp was so precious. I have been following his blog. He is an angel and a fighter in the same person.

  3. Happy Halloween! We are always thinking of you and you guys are always in our thoughts and prayers. Looks like Ali really has had some Halloween fun. You guys are awesome. Ang is looking so good and so are all of you. You guys really truly have a loving family and are helping for a cure for EB. Our hats go off to you. Thanks for doing all that you do.

    All Our Love;

    Myrna & Dwight

  4. What color are his eyes? It seems from the pictures you and Ang have brown eyes and your girls have blue eyes. So I was wondering what color Julian's eyes are or or are going to be... I know sometimes babies eye color changes for a while and I haven't been sure from the pictures if he takes after his parents or sisters... Just wondering. He certainly is beautiful just like the rest of his family. :-)

  5. Ali truly is an angel <3

    I absolutely love the last photo of you and your girls. I'm so excited to see EB got the much needed attention it deserves.
    God Bless.

    Amanda <3
    Hobart, Australia.