September 11, 2011: Past, Present, and Future...

(Not) Rockin' the paddleboat at Irvine Regional Park yesterday...

Heaveno!

As I was writing today's date up above, I was struck by how poignant today's date is for the obvious reasons, but for one other.  So much has happened in ten years.  Take a second and think back... not to where you were on 9/11, but where you were in your life.  Where were you working?  Where were you living?  How old or young were your kids?  Did you even have any yet?  Who was your significant other?  What was important?  Now look at yourself.  I don't know about you, but for me, the last ten years happened to be massively transitional and transformative, but that was what I was seeking.  I wasn't fulfilled; I knew I hadn't even scratched the surface of my potential yet, and I wanted to become more.  Today, I feel like I have scratched the surface, and yet, have only just begun.  My guess is that the next ten won't be quite as transitional as the past ten, but God only knows, doesn't she? ;-)

What hangs in the balance for me is where will EB research be, and will there really be various treatment options by then, such that no child ever has to die from EB again?

This is the vision that Jay and Lonni Mooreland, Angelique, and I have pledged to create through PUCK, and while I know the ability for us to "control" that outcome is nil, the ability to influence it...

... is MASSIVE.

See, all things that come to pass, both good and bad, are byproducts of someone's unflinching vision.  The terrorist attacks ten years ago today were the result of someone's unflinching vision, who in turn influenced a big enough team to implement the horror we all watched on TV that day.  I have been studying influence a lot lately, and the authors of literature related to influence ALWAYS discuss that it is a tool that gets wielded for good and for evil.  I guess in Star Wars world it might be synonymous with The Force.  We get the opportunity to use its power, and in turn we are responsible for the results.  It takes vision, but then influence to bring that vision to reality.

In a more inspirational example, think of the influence of Dr. King. He laid out his vision clearly in his "I have a Dream" speech.  Today, I watch Ali play in a multicultural setting - whether it is on the playground, at church, in school, at daycare - every single day.  All those walls have been nonexistent for her since the word go.  That is vision and influence expressed and realized.  That is inspiring and empowering!

I guess I have a dream as well, that one day, children with EB and their parents will not face the long slow road of pain and suffering, but instead will have multiple roads to choose from where a better life lies at the end of each one.  I know that I am not alone in this dream, and I am BLESSED to stand beside  leaders like Brett Kopelan and the entire team at DebRA, Andrea and Paul Joseph and their team at EBMRF, Alex and Jamie Silver and their team at JGSF, and Lonni, Jay, and Ang and our team at PUCK/CCRF.  Talk about a DREAM TEAM... I am so inspired by all these people, I can tell you they have caused me to be a better human on this Earth.  They inspire me to be the best version of myself I can be.

This week I get the honor and privilege of speaking on behalf of the EB community in Bethesda, MD at the Nation Institute of Health.

I get 5 minutes.

I can deliver a TIDAL WAVE of passion, purpose, and inspiration in 2.

It is AMAZING how when we answer God's call, she lays out so many different ways to support us, and simply conspires to make us successful, despite how it may look from moment to moment.  I can tell you that in 2002, I went through a grueling 7-month leadership training program where I was taught how to deliver a "vivid share" that could move a room to tears in 2 minutes while speaking openly and authentically from my heart.  Who knew I would rely on that training 9 years later for a completely unrelated event in my life that I would have no way of knowing was coming?

God did.

God sees it all.

God has a plan, and it is beautiful, when seen in its entirety.

The challenge is being human, and as such, being in the painting itself.  It is quite the conundrum to behold the painting and be in the painting at the same time, is it not?  This is where that gift we give ourselves called faith comes in such handy.  For me, one of the principle foundations of faith is trust.  Think about any time you've had to hang a picture.  Notice that you are so close to it, you can't really see if it's crooked or not. So, you call your spouse in for guidance.  They have a view - a perspective on the painting - that is impossible for you to view from where you are.  So - because you trust them i.e. have faith in their vision - you ask them for guidance, and follow their commands.

Now I'm sure some of you can't stand to just listen and hear him or her guide you without questioning their direction... I can hear those thoughts now while your spouse is directing you... "THAT doesn't look right... are you sure?"  Some of you even say it out loud!  There you are, asking for their view, knowing it is clearer than yours, and at the same time resisting the answers you get.

Sound familiar?

Ah, how we do this with our selves, with the ones we love, and with God.  We ignore that still small voice inside telling us to slow down, until it either threatens to shut us down through a cold, or even worse, a disease or accident.  We ignore the ones we love until an ultimatum gets thrown at us.  And perhaps most easy of all, we ignore God, because after all if God truly loves us unconditionally, we can simply get away with it.  Now that might sound a little harsh, but hey, sometimes the truth hurts.

Imagine listening and following God's guidance and commands for ten years straight.  Where might God take you?  On what magical journey is your seat already reserved?

God only knows!

God night.

Fun with Julian's new sunglasses!

Ali's new pet, "Sparkles!" and her new mermaid she painted at Color Me Mine to keep him company... yes, I said him.  She named him, not me!

The J-Man sleepeth... way too much today... I fear we're in for a long night!

and the reason we are all here... Bella...