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...

September 8, 2011: Thrush...

Heaveno!

Ugh.  It is upon is.  Thrush.  Turns out both Ang and Julian have it.  The lactation consultant yesterday explained that thrush is common among c-sections because the antibiotics given due to surgery wipe out the flora that keep thrush at bay, thus letting it run amok.  Wouldn't it be prudent to ask a repeat c-section patient if they developed thrush in past pregnancies, and if so, prescribe an anti-fungal prophylaxis?  However, when you are at a hospital that pumps out 5,000 babies every year (no joke... seriously 5k), that might just be being a little too detailed with the patient.  Yes, that was sarcasm.

What this means is pain for mommy and pain for Julian at feeding time, and has left us with one crabby baby over the past 12-24 hours.  Luckily, the lactation consultant caught it relatively early and now both momma and Julian are on medicine.  Still, it's a bit frustrating since it was really high on our radar, and yet we still couldn't avoid it.

Alright, gotta keep it brief tonight; I'm working on my statement for when I testify in front of the FDA and NIH next week in MD.  Dr. Wagner would like a draft by Saturday to see if I'm on track with what the focus of the workshop is.  They are conducting a two-day workshop on examining the obstacles in pediatric clinical trials, and Dr. Wagner asked me to testify and tell our story.  I am flattered and honored to speak to a body of people that will include the NIH, the FDA, government staffers and officials et al.  I have always preached that if you want the right to bitch, first go and be part of the solution.  Be of service and earn the right to speak you mind.

God night.

Nightly story time...

Nightly Julian time for Ali...

Bella...

September 6, 2011: Two weeks of Julian!

Heaveno!

Well, two weeks of the J-Man!  Ang took him to his two week check-up this morning.  She enjoyed getting out of the house, and being able to reach the steering wheel again now that Julian is in the back seat and not in her lap!  He weighed in at an even 9 oz, just two oz off his birth weight.  He has been growing steadily, and doing well.  He really is so peaceful.  When I hold him, time disappears.  Ali continues to be completely smitten.  It is so cute to watch.  Tonight, I put Julian in her bed, and she started laughing she was so happy.  It is so nice to watch her recapture her role as big sister.

Life is good here, and I need to sleep.  Thank you for your continued support and presence in our lives.

God night.

September 4, 2011: Labor Day Weekend...

Ali got ahold of the camera long enough to give us a close up of her toys...

Heaveno!

Hey, thank you again to everyone for your birthday wishes and donations (again) to PUCK.  I really appreciate it.  After looking at the last post, I don't really have anything near as cool to share tonight!  I will tell you how generous Bruno Serato from the Anaheim White House is one more time... he took the time to come to the blog and read the blog post!  He thanked me profusely for sharing his work with you and asked me to correct one piece of info I shared which is that CNN has not told him he is in the top 10, he wishes to be in the top 10.  He asked me to change that and I did, but I also wanted to restate it to be sure I corrected that with everyone who had already read the post.



This weekend has been pretty low key.  It was Ali's first full week of school and Friday night felt earned!  A three-day weekend after the first full week is a nice reward as well!  The funny realization I had this week was how even though Ali is the one going to school, I end up with the new, rigid schedule in the morning as well!  I am not a morning person by any stretch of the imagination, so working for myself allows me some freedom in terms of how I start my day.  Well, I feel like I am back in elementary school again!  Not someplace I really want to revisit.  Oh well.  One thing I also struggle with, which very well be a shortcoming, is aversion to repetition in my schedule.  Even at this stage of my business, I structure my schedule so that I do not do the same thing two days in a row.  I'm sure this has its cons, but my overactive over creative brain craves change on a daily basis.  It's a wonder I ever finish anything!









In other news, Reader's Digest is hosting a contest called, "Your Life... the Reader's Digest Version."  Thanks to our dear friend Denise for pointing it out to me.  It's a great contest for me; you have to write a story, insight, something, but it can only be 150 words.  THAT is a challenge for me!  It's been good practice in honing down my messages I want to share with the world.  If there is something you are passionate about that you really want to be confident sharing about, do this exercise:  write out the whole scope of what it is in 150 words.  It really makes you think about what words/angles you are going to highlight with such a limited number of options to achieve maximum impact.  I wish I had done this before my American Idol audition.  This was a PERFECT exercise for that setting!  Anyway, here is one of the drafts I worked on that I won't be submitting as my official entry, but shared it on facebook and got a lot of positive feedback.  Here goes...

Having just turned 39, here are some lessons I've learned:


1.  The best gift I ever gave myself was the gift of faith.  Faith is something you give your self.  No one can make you have it, and no one can take it away.


2. I will get knocked down, and when I do, my friends, family, and faith will be there to help me up.


3.  Wisdom does not come from experience alone; it comes from the willingness to learn from experience.  Many get bitter while I choose to get better.


These are themes I have written about countless times on this blog, so they won't seem new to you, but notice how concise I am?  Shocking, I know.  Good practice for anyone with a message.



multitasking!


I am listening to lullabies while typing the blog one handed, and the songs are working on ME!  I just fell asleep here and need to wrap things up! Life is good here in the nest.  Mommy is getting a little stir crazy, but outside of that, life is good.

God night.

September 1, 2011: Thanks to all for a Happy Birthday...

Figured you should get the many faces of Julian straight outta the gate...


Heaveno!

It's been a pretty amazing 10 days.

Julian was born
Ali started school, and Ang was home in time to see her off on her first day
My music therapy program received another large investment in pilot funding
P.U.C.K. received a $5,000 luncheon as a gift
For giving up my birthday, friends and family donated $645.39 to P.U.C.K.
I got to see my mom for a week
P.U.C.K. was mentioned in our local newspaper
Ali and Ang baked me the chocolatiest chocolate cake EVER

Now, September begins.  September promises to be as eventful as the past 10 days.  Life is good.

I have to tell you about last night, though.

Several months ago, an email landed in my inbox from our dear friend Sara Cooper (always at the heart of it all, that Sara).  It was a link to a story about a local restauranteur who is also a huge philanthropist.  He was going to give away 12 luncheons at his restaurant / banquet facility in 2012 to 12 local charities. Charities had to write an application letter explaining who they are, what they do, and who they serve, and the 12 winners would be announced at a cocktail reception at the restaurant on - of all days - August 31.

Ang mentioned, "Hey, doesn't hurt to at least apply."  That seemed fair enough, so I put together a one page letter with photos and simply told our and P.U.C.K.'s stories and submitted it by the deadline.  I received a confirmation that we were in the running for one of the 12 spots, but we had to be present to win (life lesson here - half the battle is simply showing up).  So, last night, after having a yummy early dinner and cake, I took my mom to the Anaheim White House for this reception.

Ali was NOT pleased with me.  She looked up at me with a broken look, "Daddy? Why do you have to go? Please don't go, daddy!  Please?"

That was a d-r-a-g.

Nevertheless, off we went.

The event was pandemonium.  232 charities applied for these 12 luncheons, and by the looks of it, just about all were in attendance!  It was a mad house.  Given that each entrant was allowed to bring a guest, there were well over 400 people crammed in the front lawn and "West Wing Banquet Hall" in the front lawn of this old house-turned-top tier restaurant.

Let me tell you briefly about the owner of this restaurant.  His name is Bruno Serato.  Each night for the past 6 years, Bruno has fed pasta to roughly 350 homeless kids a night in Anaheim.  To date, he has personally fed over a quarter of a million meals to kids in need.  CNN listed him as one of the Top 20 Heroes in the World in 2011.  The only Italian to make the list, he is regarded a national hero back home where he was born.  Click here to read CNN's story on him.

Before announcing the winners, Bruno mentioned that after reading all the letters, he couldn't pick just 12.  So, he decided, instead of once a month, this offer would be once a week.  For 50 weeks in 2012, he was going to give away a luncheon every single Wednesday except for the 2 weeks at Christmas.  The luncheons are worth $5,295 each.

Folks, that's over $250,000 worth of luncheons.  Then, he mentioned that only 50 didn't cover all the charities he wanted to help, so he repeated the offer for 2013... he'd give away 50 luncheons in 2013... then he did it again for 2014... THEN he did it again for 2015. NOT 12 luncheons... 200.  That is over a million dollars worth of food, beverage and rental he will give away over the next 4 years.

That, my friends, took generosity into a completely new realm for me, and I'm sure for every single person in attendance last night.  By doing what he did, he SCHOOLED all of us watching, hereby challenging our own generosity.  He simply said, "My GM thinks I'm crazy, my assistant thinks I'm crazy, but I know God will take care of me."

Out of the 232 charities, that applied, P.U.C.K. was announced as the SECOND recipient of this award.  I just happened to be standing right in front of Bruno with my mom when he started his speech, and so there I was, point blank front and center to see and hear him read off, "and the second luncheon, January 11, 2012, goes to Pioneering Unique Cures for Kids."

I took the two steps forward with my hand over my mouth, and took into my possession a personalized folder with everything we needed to know.  I then turned around, hugged my mom, and started crying.

The photographer at the event caught the whole thing on camera, and sent me the pics today!















What a birthday present!

Now, who knows if being called out second has any real relevance to anything, but it sure felt pretty dramatic.  Most importantly, we have been given an absolute GIFT to help us 1) continue to raise money for Dr. Wagner and Dr. Tolar in Minnesota, and 2) have a really nice event in Orange County at one of the most upscale restaurants in the OC to expand our exposure out here.  The challenge?  The event is in 4 months!  Ack! We have some work to do!  LOL.







I'll take this kind of work any day.  We get to work hard for EB kids, and be the recipient of charity for charity from a man who has dedicated his life to children as well.  We are blessed to be in his company.

Thank you all again for your ongoing support of my family as we ride this roller coaster of life.  You have given so much to us and our cause.  We are all doing this together.  We are curing EB together.  We are providing hope together.  We are healing our grief together.  We are learning life's lessons together.  We are a community.  Who knows how or why we all got here, but here we are.  As a group, united through technology, we are building, not destroying. We are loving, not hating.  We are nurturing, not hurting.  We are a force for good, all of us.  Thank you - each and every one of you - for being a part of this journey.  It simply wouldn't be the same without you.

God night.