Monday, January 31, 2011

January 31, 2011: Orlando, Florida day 4...


Well, another good day in Dean's Lab today.  Man, just being around Dean and his clutter-free, focus-oriented office really makes for some productive work!

The AM was the hard part.

Today, I finally got up the nerve to watch some of Jonny Kennedy's series, "The Boy Whose Skin Fell Off," on youtube.  I was afraid to watch it, even though I've known about it since Bella was born.  With Bella, I never wanted to look ahead too far at older kids or adults with EB, because I just didn't want to face that future.

Well, last night, we came to the realization that a video that shows the problem, the solution, the results so far, AND a call to action was needed.  Just about all the EB videos online share one thing:  they raise EB awareness, but stop short of asking directly for a contribution.  Now, I know not all EB videos online are designed to raise money.  Many of them are specifically just for awareness, and that is VITAL, but so is asking to raise money.  Advances in treatment come from research, and research costs money.  So, we are going to make a video specifically designed to raise awareness, get people emotionally connected, and raise money.  That way, when I do end up on TV and radio, all I have to do is say, "Please go to to help out."  That's easy enough to remember.  The person goes to that page (which currently points here to the blog but will be pointed at a fresh new page) and sees a big video screen and a donate button under it.  That's it.  Clean, clear, simple.

I was online this morning seeing what is already out there in the "youtube literature."  There is one, two-minute segment I watched today from Jonny's show that made my blood freeze.  I've only made it through 20% of his show, but it was so intense I had to stop.  After watching his mum do bandage changes on him 36 YEARS AFTER HIS BIRTH... I couldn't contemplate it.  My brain hurts now even.    Many of us don't show the bad videos and the bad photos online, but the reality is that this disease is much worse than any of us show through video or photo.  We may write about it, but most of us simply won't show you how bad it got for our little ones.  In some ways, this leaves an inaccurate portrait of EB.  Inaccurate because there is only so much we can imagine on our own.  EB is worse than you imagine.

There was a scene of Jonny's bandage changes and it was worse than I could imagine.  Seeing the video of Payton on "My Skin is Killing Me," seeing his torso and legs, hearing his screams getting in the bath... worse than I could imagine, and I'm an EB parent!  Some diseases kill you from the inside out.  EB kills from the outside in.  It attacks the largest organ in the body.  The two minute clip of Jonny's bandage change is more powerful than 100 great lectures, seminars, or speeches.

The good news was that the U of M has produced 4 really good, informative videos on this treatment.  They don't hit as hard as Jonny's video; they are more upbeat and academic in nature.  It was nice watching the U of M video knowing we're coming back this week.

Prepare!  Prepare!  The Ringgolds are returning!


I spent much of the evening coordinating our (social) itinerary today.  The Minnesota Medical Foundation was nice enough to coordinate a meeting itinerary for our stay that is quite thorough.  We feel so great working with them, they are a class act!  The key for me is learning how to connect major donors with them and vice versa.  That is going to play a big role in us raising such a big number.  However, every role is important... remember... President Obama raised more money than any politician in history $5 at a time.  His "Micro-donations" were completely revolutionary.  It's hard to predict what movement or cause will "go viral" online, so it isn't yet duplicatable enough to control it, it just kind of happens.  That's okay, we'll still do whatever it takes.

Okay, eyes are shutting involuntarily as I type.  Time for bed.  Tomorrow, I return to my family!

I can't wait to be with them again.

God night.

Sunday, January 30, 2011

January 30, 2011: Orlando, Florida day 3...


Well, today was a good day.  First off, the weather here is beautiful this time of year.  I slept in to get some much needed rest, let the boys go off and work out, and took it easy talking with Sonny, or I should say Dr. Jackson.  She has a B.A. in art, an MBA, and an EdD!  Very cool lady!  She's also an extrovert and a talker like me, so we have hit it off well.

We met up with one of Joe's old clients who lives out this way and had lunch, then went back to Dean's office.  Dean rolls in his very own unique way.  It has been GREAT being around him, because he is extremely successful, and does things HIS WAY.  Sometimes I struggle with not being in a cube at an office 10-12 hours a day, like that is how I am supposed to work.  Now, I KNOW that THAT is not how I am supposed to work; it's just not my style.  I tried it for years in my 20's.  I'm just not cut out for it; I need to be in different environments and in and out of spaces and places and in front of different people... in other words, I need my scene to constantly change.  Sometimes, when I am working from home coaching a client while walking out on my back patio, I just feel like "I'm not doing it right."

Never mind that it is the highest per-hour work I do, I do it from home, I LOVE it, and I am extremely effective at it.  I get hung up because of how it "looks."

Hanging around Dean has REALLY shown me that I owe it to myself and all the people I will serve by doing things exactly as I need to.  For an office, Dean owns a duplex of 1 bedroom apartments.  The downstairs is where his wife works and any other staff that have to come in to do work.  Upstairs is Dean's creative land.  The back bedroom is his idea room where there is a giant ( like classroom sized) whiteboard, a conference table, and nothing else.  There are two locked doors between him and any distractions when he is in there creating.  It is brilliant.

Well, I had the honor of stepping up to Dean's white board today and pouring out my plan onto it while Joe coached me for probably an hour.  Chet and Dean also chimed in whenever Joe asked them to and they both had great input.  Joe also video taped the entire coaching session for me to go back and watch, and also to have others watch to see what pops up for them as good ideas.

I love my friend Joe.  He has simply gone above and beyond the call for me.

In fact, if the spirit moves you, maybe send him a thank you for all he is doing for this cause.  I think that would be really cool!  Just start posting on his facebook page.  Heck, it is public.  There hasn't been anyone who has put their reputation on the line more times than Joe by letting me speak on his stages, at dinner parties he throws, etc.  Just the introductions alone... see, the more people I get introduced to, the more people who know other influential people find out about EB.  THAT is a good thing.

After our session, we came back to the house for a wonderful home-cooked meal by Sonny, and then we headed back out to "The Lab" as Dean calls it so Joe and Dean could work on their "I Love Marketing" platform.  I began implementing a bunch of the ideas we had from our session immediately.

Well, I am beat.  I'm in better spirits, but I need some sleep now because we are getting up early tomorrow morning.  (not sure why... I'll keep you posted.)

God night.

P.S.  A big THANK YOU to Sara for watching Ali and taking this (and others) absolutely divine picture of our sweetie!  And yes, Amanda, Ali IS coming to MN.  Now, WHO is throwing the SuperBowl Party????

Saturday, January 29, 2011

January 29, 2011: Orlando, Florida continued...


Well, it's a short day today as I slept through half of it!  The past 3 days really took a lot out of my emotionally and physically.  I am drained.  I slept late today and am going to bed early.  Tomorrow is going to be a high mental energy day as we go to Dean's office to hit it hard.  I got some good coaching today so I think I'll be a bit more grounded tomorrow.

Unfortunately, I have a cold coming on as well.  Body aches tight chest, stuffy head... chills... the whole bit.  So that's why I'm posting early so I can get a really full night's rest.  I need it.

Gonna hit the hay now.  Thank you for your ongoing support.

God night.

Friday, January 28, 2011

January 28, 2011: Orlando, Florida...


It is through tired, tear-drained eyes that I write you tonight.  I am so tired.  I am in Winter Haven, Florida at the beautiful home of Joe's dear friends Dean and Sonny Jackson.  They are just the most laid back, easy-going and genuinely nice couple.  I am finally decompressing after a pretty rockin' roller coaster of a week.  Woof.  We are still freaked about about the chain of events over the past 72 hours.  There were four planes scheduled to head out of JFK Wed. night.  The first two made it out.

We were the next plane to leave.  We were that close.  We were plane number three.

Anyhow, we finally got out of NYC this morning and arrived in beautiful Orlando this afternoon.  Dean picked us up, and took us to eat a phenomenal Cuban meal, followed by a trip to the Omni International Hotel Spa for a much needed massage.  I was a little embarrassed because, one, I couldn't afford to go, to which Joe shrugged off my concern by treating me, and two, I've never been in a swanky hotel spa before, so I had to ask the guys all kinds of really basic questions.  I fought off feeling dumb - I was just honest and not ashamed or anything... it was actually nice to just be candid.

Anyway, as I lay down on the massage table, I looked up at the ceiling.  I realized the room was the same size of Bella's ICU room, I was flat on my back, just like she was for 99 days straight.  Gentle music was playing in the room, just like I used to play in Bella's room.  However, this time, I was finally going to receive the nurturing.  I immediately started crying.  When the massage therapist came in, I explained that I realize that when people release physical tension, it also releases emotional tension as well, so I apologized because my daughter recently died, and I had a lot of tension in me still.  She was very gracious, and as she worked on the nightmare called my neck, the tears just streamed down my cheeks thinking about Bella laying there in that same position.  I thought about how much I did, and how much more I wish I had done for her.  Unfortunately, her EB prevented any kind of deep tissue massage much less regular skin to skin contact, but I rejoiced in massaging her with Alwyn cream during dressing changes.  That was such a treat because my lotioned up hands got to caress our daughter the only way possible.  That tactile connection with her was so glorious.  As the therapist massaged me, I humbly allowed my guard to just finally crash to the floor around the table like tired, rusty, battle-scarred plate mail armor.  As the armor fell, so did the tears.

I have been treated so graciously and generously on this journey, sometimes it is really hard to be with.  It reminds me of when the wonderful people of our church brought us meals and groceries after Bella was born.  When I put the Providence Goggles on back in early June (June 3rd?) of 2009, I don't know if I realized the view I was in for.  The view has been so much more wonderous - even with all the pain along the way - than I could ever have imagined, and it is really clear to me that this isn't even close to over... spiritual Mount Everest.

Today, again through listening and learning from my friend and mentor Joe, I realized that this $3 million campaign is just the precursor to two things that I have wanted to get to for over a year now...

The Five Percent Collective  and  Core Care.

This campaign is going to create a platform to launch the next phase of Bella's Gifts upon the world.  As a quick review, The Five Percent Collective is the % of couples that stay hitched despite having children with special needs, critically ill, or deceased children.  Angelique and I plan to share our relationship model with other parents of special needs, critically ill, and deceased children so that maybe over time, we can change that statistic for the better.  Core Care is a website that will act as a clearing house of information, resources, and inspiration for caregivers to help treat caregiver burnout.  It will address specific areas of concern like financial, emotional, relationship, spiritual, domestic, educational, etc.

These two projects were conceived in the summer and fall of 2009, but I knew I wasn't ready to really launch them at the time.  God put them on the horizon today, as if to say, "Realize that this project is going set the stage for those two projects.  Be ready!"

God, I am in.  We are in.  We are The Divine Planet.

God night.

P.S.  If you want to contribute in your own way, please write The View, write Oprah, write Ellen, write your paper, write 5 people or organizations about my family's journey.  For now, here are the pertinent links:

the blog:
the video:
the docs:
to donate:

January 27, 2011: New York, New York...



What a 24 hours. I am beat. First of all, if you haven't read on FB, we cancelled our trip to Egypt. All the news coming out of Egypt is getting worse by the minute. We are really concerned for the safety of Joe's dear friends. The internet is down as is SMS texting, blackberry internet... all blocked by the government. This is really scary. We are beyond lucky. The snowstorm that let 2 other planes out just before us, but NOT US, is my Providence Story of the Day.

After sitting on the tarmack for 2 hours, they postponed the flight till 2pm today (not that we were getting back on it). It was 1:00 am, the airport was closed, and all transit to and from the airport was shut down do to the snowstorm, so we were forced to hunker down and sleep in the airport! We went back on the plane to get blankets and pillows, snacks, and water, and someone found the cot storage room, so we all slept (more or less) on the floor in the terminal on cots a la disaster or homeless shelter. There was an Egyptian mom and grandma on the flight with the mom's twin babies, who couldn't have been more than 2 months old. My favorite part of the night was bringing blankets, pillows, and a cot to them, not being able to share a word between us, but able to share a smile, and a warm set of eye contact. I'll never forget the look of gratitude on the grandma's face when I just walked up to her with the blanket and pillow and just sat it next to her and smiled. Giving rocks.

In the morning, we had to 'liberate' my bag from the plane. Easier said than done. First, the plane was literally covered in snow and ice, and the grounds had to be plowed around the plane just to get a ramp to it. Then they had to take out the canister than had my bag in it, open up the canister, find my bag, and send just my bag through baggage claim, repack the canister and reload it back on the plane. No big deal except for the blizzard cold and ice conditions the workers had to do this in. Everyone we dealt with was amazing. Evelyn at the baggage claim counter couldn't have been nicer. Well done, Delta, thank you.

With my bag liberated (by 11:30 am) we got a taxi back into Manhattan and scored an AMAZING deal on Double room at a midtown hotel for $93. Practically unheard of in Manhattan! We hunkered down for some much needed sleep.

Joe, being the eternal networker that he is, set up dinner for 8 of us at the greek restaurant across the street. Ken and Jeffrey joined us again, and tonight we were joined by Eben Pagan and his fiance, Annie, Marie Forleo and her fiance Josh, and Steve Krein. Once again, Joe asked me to speak to the table and share my story. After, we spent literally (on and off) a couple of hours between Ken, Steve, Jeffrey, and Marie brainstorming ideas for how to reach our goal. We came up with a couple of really good strategies that I am excited to begin working on. All offered their help, their connections, and their experience.

I asked them for their advice, and for their connections. One thing we have identified for sure: I need to get on TV and radio. We also need to spread the video from Joe's event out, and also create a new video when I go to MN next week that has Dr. Wagner and Tolar talking about the need for this funding. We'll make a compelling video on and have the donate button right underneath it, and THAT is where we will drive all our traffic going forward once the video is made.

There are three levels of this campaign, the grass roots level, the online viral level, and the major gift level. They are very different things with very different rules of engagement. I know we need lots of levels of contribution to make this happen. It's going to happen $5, $20, $100 at a time, AND it's going to happen $10,000, $100,000, and maybe even $1,000,000 at a time. That's how it works raising money at this level for a cure. It takes a little more relationship building at the third level before anyone is going to part with 5, 6, or 7 figures.

And yes, the way money is earned is out of other people's pockets. I'm struck by that comment. Where else does it come from? You provide value, someone provides money in exchange for that value. The value may come in the form of products, services, or information. I have PSI (product, service, or information) that I want to sell to you. You find it to be a match to what you want or need, and I give it to you in exchange for money. Your pocket to mine.

I don't mind people asking questions, but please, keep your comments positive on this blog. My daughter paid with her life to try to find a cure to EB. This is not pie in the sky stuff, folks. This is how it gets done. So, while I am out traveling to wherever it takes to enroll the critical mass of major players and you are sitting at home reading about it, if you don't have anything positive to say about it, well... you know how the saying goes.

Thank you to the rest of you for your unending support. Remember, by October 11, 2020, there are various forms of treatment for EB, and no child ever has to die from this again.

God night.

Wednesday, January 26, 2011

January 26, 2011: NYC


I finally figured out how to post from my droid! That makes me very happy.

Well, today has been the most wonderful adventure. They are de-icing the plane I am on as we speak so this will be brief. It is snowing in NYC and has been all day. As we approached JFK airport, I saw ocean waves lappingva snow-covered beach. That was one of the most beautiful, surreal scenes I've ever witnessed. I am so grateful for that image because frankly, if I lived here, I don't think I'd be hanging out at the beach to see it!

I want to tell you about our adventure in NYC. I had the thought yesterday that we should just hop in a cab and head either into NYC or Brooklyn. I mean, 7 hours is a long time to sit anywhere. So, my mom called a couple of old friends when I landed, but it didn't work out. Little did I know Joe was doing the same thing. So, turns out, one of his friends, none other than the sales legend Ken Glickman took a cab out to the airport to meet us! No sooner do we meet up with Ken and Joe calls another friend, Victorias Secret video producer Jeffrey Madoff. So, we catch a cab into the city, and before you realize it, we are in midtown Manhattan at Madoff Studios! Don't worry, no victorias secret models.

We toured the studios, watched a few of Jeff's latest projects, shot a couple of videos, then went out to dinner. We had a heartfelt conversation over dinner brainstorming ways to raise the money for the docs. Some lightbulbs went on for Joe immediately, and all three men contributed some key ideas. Stay tuned for more info.

In the meantime, the snow is falling faster than they can de-ice, so we are stuck here on the tarmack... literally snowed in. Looks like I'm not done with NYC just yet... or maybe its. Not done with me?

God night.

Tuesday, January 25, 2011

January 25, 2011: On my way...


Thanks for all the support for Ang and Ali at home and for me on the road.  I'm in the guest house at my dear friends Bob and Lynne's home in Phoenix.  You may recall that this was Ang, Ali, and my final stop on our trip back home from MN.  Bob and Lynne are like family.  I always feel safe with them, and this was the PERFECT layover for tomorrow.  It's like a little respite between the unbelievably hectic day today of trying to pack, take Ali to the doctor, get the oil changed on Ang's car, have two coaching calls with clients, and vacuum the house, fly to Phoenix, etc, and tomorrow... flying to NY / JFK where we have a 7 hour layover followed by one long flight to Cairo... in coach.  Pray for an empty seat in first class!  LOL.

Anyhow, so far so good.  As for the political climate there, today's protests were scheduled and sanctioned.  Tomorrow will be more telling than today as to how things are going.  I got an email from our tour host, letting us know that we have an armed guard with us everywhere we go... now I am definitely not a gun guy, but that DOES sound cool.

In other news, Ali got into pre-school!  I say it that way because at mid year, it is not always the case that a space opens up, but lo and behold, there is one!  She'll start when we get back from Minnesota.  I am so excited for her.  She is going to LOVE her new school.  It is literally right across the main street from our condo complex at Santiago Canyon College.  They have a Child Development Center there that came highly recommended to us.  What's great is that it is a 10 minute walk from door to door, so we'll get to walk Ali to school again, just like we did in MN!  When she heads off to kindergarten in the fall, we walk 10 minutes in a different direction through our neighborhood park and we are at her elementary school!  LOVE the ability to NOT NEED a car in southern California to do something!  YAY!

Lastly for today, I want to share about an article on happiness I read on the flight here in the Southwest Magazine.  The article is written by Christopher Peterson, PhD, the author of A Primer in Positive Psychology, and a regular blogger for Psychology Today.  I think this is so important, I'm going to go into extreme detail with this.  I sincerely hope this next conversation contributes something to you.  If so, PLEASE comment on the blog so we can all be a part of this conversation...

In the article, they post a survey that ascertains your happiness.  Okay.  Fill it out, add up the numbers, and you find out where you rank on a happiness scale.  There are 8 questions.  Your answer is a number from one to five, one meaning it's not you at all, up to five where it is very much like you.  Add up your answers from the 8 questions and we'll see how you do!  Consider your past 30 days when answering:

(Remember, 1=very much NOT like you, 2=not like you, 3=somewhat like you, 4=like you, 5=very much like you)

I have had more good days than bad days.  (1-2-3-4-5)
I enjoyed things every day.   (1-2-3-4-5)

I was so involved with what I did at work or school that time seemed to stand still.   (1-2-3-4-5)
I took time to pursue hobbies and leisure activities.   (1-2-3-4-5)

I felt loved.   (1-2-3-4-5)
I mattered to other people.  (1-2-3-4-5)

I felt connected to something larger than myself.  (1-2-3-4-5)
What I did made a difference in the world.   (1-2-3-4-5)

If you scored at least 25, you are usually a happy person.
If you scored at least 30, you are usually a very happy person.
If you scored above 35, wow!
[If you scored below 25, essentially you need to have more fun.]

Now, given that the past 30 days represented only month number 3 since Bella died, it would be reasonable for me to put up a low number, right?

What number do you think I got?



I believe that happiness is a state you reach when you are living to your full potential.  That is my definition, not the article's.  This score is great feedback for me to see that I am living FULL OUT right now, and for me, THAT is a great source of happiness.

My dear friend, Jim Hornaday, wrote on his facebook info a long time ago that people always ask him why he's smiling or what he's smiling at.  He answers that he believes happiness is a choice.

Funny, before Bella, I didn't feel the same way.  I wished I did, but I struggled with depression and addictive tendencies, always a little irritable, restless, and discontent.

Ironic.  After experiencing the life and death of Bella as her daddy, I now understand that Jim was right all along.

The best part?  I don't have to wish I feel the same way, my score tells me I already do.

How 'bout you?  Is your happiness dependent upon circumstances INSIDE YOU, or OUTSIDE YOU?

God night.

Monday, January 24, 2011

January 24, 2011: I better get my sunscreen...


...because tomorrow night, I head to Egypt.

Yeah, I know, where the heaven did THAT come from?

I guess this is how these things sometimes work.  God says, "JUMP!" and I say, "[groan] How far?"

He says, "TO EGYPT!"

I say, "Uh, wow.  Okay."

Now, you may be wondering what a nice boy like me is doing heading to Egypt tomorrow seemingly out of nowhere.  Good question!  I'll tell ya...

I am accompanying a good friend at his request.

So, I guess you could say, "Let it be said that I will travel the ends of this earth to fund this cure."

Mind you, I was planning on staying off the continent of Africa this lifetime.  Seriously.  Not even the World Cup could get me there.  However, to have the opportunity to vacation with this crew for a week and really connect with them and their spouses, well, you just can't plan such good fortune.

God has a plan.

I leave the Egypt tour early before their 4 day boat cruise down the Nile to be back in time to turn around and head back to Minnesota for a wonderful 5 day reunion with all our friends to witness the wedding of one of Bella's main nurses, Renee.  We will also be in meetings with Dr. Wagner and Tolar, the Minnesota Medical Foundation, PUCK, and Children's Cancer Research Center - essentially the adoptive parents of PUCK (we use their tax ID number and they help us with SO MUCH to get going). Ali, Ang and I leave for Minnesota next Thursday.  I return from Egypt next Tuesday.  Don't call on Wednesday, I'll be doing laundry and working in the office!

I want to take this opportunity to not only thank my friend Joe for this once in a lifetime opportunity, but I also want to say to you all how lucky I am to be married to Angelique.  Her power is only matched by her flexibility.  She is willing to see other people's vision, even if it isn't her own, as valuable.  If it wasn't for her support, this trip wouldn't happen.  Thank you, honey.  You are beyond amazing, and I am beyond blessed to be your hubby.

Now, do I have fear?


Am I nervous?

Overwhelmed is more like it.


Yes.  I.  am.

I'm going anyway.

How are any of us ever going to get anywhere new if we're not willing to try something new?  Do you really think that I would be able to manifest $3 million by using the same thinking and action that got me this far in life financially?  (Hint - I haven't made or raised a tenth of this number before)  Are there others out there that have already done this?  Yup.  Shouldn't I go learn it from THEM?  Yup.

I know better than to reinvent the wheel.  People raise millions upon millions a year for medical research.  I am not special or different or better than anyone else.  I am just REALLY, REALLY CLEAR about the result I will produce and why.  Think about it.  The best results you've achieved in any area of your life were a sum of the same traits.  Clarity and purpose.  Then, you ACTED.  Without action, we're all just sitting around a coffee shop pontificating.

I don't even think I am nearly the key piece of the chain to have this cure become real.  To me, it is the docs.  There are thousands of people who can provide the funding, but only a handful that can do the research.  Without the research, we have nothing.  More of us can contribute to the funding than to the research.  That's why it's up to us to do our part, and them to do their part.

I'm going to Egypt and I am coming back with a plan.  My plan, however, is just a plan.  It is just a piece of the pie.  The skin cells are growing in these kids, but that is only a piece of the pie.  There is much more to learn.  I'm just the one with the megaphone at this brief moment at the world party to cure EB.  There are so many more who have already done so much more, and will continue to do so.  I just know that when I die, and I appear before Bella, I'll be able to say with a clear conscience, "Hi honey, I did everything I could to make it better."

Know what the BEST part will be?

When she says, "Yeah, daddy,  I know you did.  I love you.  Now come here and give me that hug you've been waiting to give me!"

Wish me luck, and send love and strength and support to Ang while I'm gone.  If you are local and wanna cook a mild casserole, email Ang at and ask her what she'd like.  That would be most appreciated!  Ang and Ali have been going back and forth with "that stomach thing" that is out there.

Thank you for your support of us all.

God night.

Sunday, January 23, 2011

January 23, 2011: Fun in the Sun...


Well, today was a PERFECT day for a family outing.  We started out at Pretend City.  Pretend City is like an interactive, hands-on, indoor town built JUST FOR KIDS.  Super. Cute.  I took Ali and Bella there a couple of times back in the spring, and today was momma's first time there.  It was a little rough for me since I have the place linked very directly with Bella.  I think the worst moment was in the little doctor's office, Ali asked me to take her blood pressure, and as I was taking the cuff off her arm, I was rattled by the memory of the over 6,000 cuff pressures Bella endured in the hospital.  However, for a large part of the day I was able to stay fairly present.  Having Ang there helped A LOT with that.  If it had just been Ali and me there, I'm SURE it would have been a lot worse.

After Pretend City, we headed over the the Irvine Spectrum, which is basically an outdoor mall.  It's really a nice place because there are A TON of activities for kids, a boatload of restaurants varying from super quick to super fancy, bars, and clubs, and a megaplex movie theater... and of course... TARGET, baby!  LOL.  Ah, Target, how we love you so...

We grabbed lunch, then Ali and I split off from mommy so she could have a little mommy time shopping.  We went and rode the carousel, got some ice cream, then went to the fountains to play in the water.  Momma got to hit 3 stores with no family in tow... gotta love that!

Last night we had loads of fun with family; first at grandma and grandpa's house, then at Ang's brother Steve's house with their family.  All in all, a GREAT family weekend.  Good stuff.

Still sitting on some big news, but can't divulge till the details are ironed out... was hoping to spill the beans today, but we're not quite there... hopefully tomorrow (Monday) night!

God night!

Saturday, January 22, 2011

January 22, 2011: one more day


Thanks for the love.

Some big things brewing.

Can't tell you exactly yet.

Keep praying 'it all works out.'

Much love to you all.

God night.

Friday, January 21, 2011

January 21, 2011: Good advice


Thank you, anonymous commenter!  I'm taking you up on your idea!

Saturday and Sundays are my lowest traffic days (I think a lot of you secretly read blogs at work! :-o).  Anyhow, I am beat tonight, and I will say that I need some sleep.

I promise to blog tomorrow night... I have a feeling I'll have much to share... ;-)

God night.

Thursday, January 20, 2011

January 20, 2011: Used up


Wow!  Thanks for all the great comments!  I'm really glad my words were valuable last night!  I write so much so often that I honestly don't even recall what I write about 24 hours later.  It just flows onward and outward.  Can I tell you how privileged I am to have a community that I can share what flows through me?  Sometimes, it's a grind posting so often, but it is really an amazing phenomenon that I don't want to go away.  In fact, I really want it to expand, but I don't spend any time marketing my blog, so I rely on pure word of mouth.

I am amazed by the story of the Vlogger!  Nice work!  Except by this hour of the day, I don't feel like opening my mouth once more, so I let my fingers to the talking!  Now if I could just figure out how to monetize my fingers... actually, I am.  We recently invested in an internet marketing apprenticeship / mentor program and over the next 90-120 days, things are going to EXPLODE for us online in many different ways.  I am so excited by this year.  God has just continually heaped on the blessings... more and more and more.  It's the opposite of a vicious circle.  It's a blessed circle!  The more I look for God, the more I see God, the more God shows up, so I look for God more, and see God more, and God shows up more, so I look for God more, and I see God more, and God shows up more...

... the punch line?

God has been there the whole time, it's just my ability to open up to God and see all things as God...

... It's me... God is always there, but I'm not!  I'm worried about the future, or regretting or trying to make sense out of the past, so I am NOT in the present... where God is.

God isn't in the future.

God isn't in the past.

God is RIGHT HERE RIGHT NOW in the present.

That's where we all are, whether our minds will allow us to be there is another story.

Silly minds.

Here's what I want to say tonight.  Just because you have a mind, doesn't mean it knows anything about anything.  Just because it talks, doesn't mean you should always listen.  Ever notice how nasty it can be? Why do we listen?  We wouldn't listen to another person talk to us that way, why do we let our mind?
I haven't been able to control my mind, but I can control how I react to it.  Some times, I just have to laugh at my own mind, thank it for sharing, and promptly ignore acting on it.

Silly mind.

Now, I have to go to bed and recharge.  I have given A LOT today.  It feels great, but I am spent.  To be used up by choice... that is the beauty of service.  If you are stuck in a situation with anyone, ask yourself, "How can I be of service to this person?"  Then, ask them.  You'll be amazed how fast YOU can transform ANY situation through service.

Take it on.

Love you.

God night.

P.S.  Ang grew up here in CA, I grew up in CT and moved to AZ and met Ang while I lived there... over email.  Yup.  ;-)

Man, I miss that kid...

Wednesday, January 19, 2011

January 19, 2011: Renewed


Wanna an infusion of energy or clarity?

Clean something.

Seriously!  I have been working slowly but steadily this past month on reclaiming my office.  Today was a big milestone, because my desk is clean and organized and ALL of my crap is filed - not piled - (Ang, well, she doesn't get as much time in our office so, she's still got a pile... DOH!)  Anyhow, it felt SOO good to get to this level of clean and organized.  I feel so much less cluttered mentally than last night when writing you.  Thank you for your kind and gentle words.  I definitely felt the love and had a warm smile on my face when I finished reading your comments.

Today was also a good day because it was my coaching day!  I have 2 coaching clients that call in weekly and 2 that call in monthly.  Wednesdays are currently my coaching day, so I got to coach all day today, clean in between (and watch my Arsenal handle Leeds United in the FA Cup 3rd Round after surviving last match by the skin of their teeth).  I coached from my office, from my couch, from my back patio.  Man, it was just AWESOME.

Can I just tell you how much I love coaching?  I first started coaching in 2002 and I LOVED it, but it wasn't the right time to pursue it.  Last year, after Bella was born, I kind of saw the writing on the wall... I was going to need to learn how to earn money from home so I could take care of her and still feel like I was contributing financially (if to nothing other than my whopping student loan and tiny retirement plan).  So, I self-published Bella's Blessings; a Humble Story of Providence, hoping to make a little money and raise a little money, and I started coaching again.  Well, a year later, I've only sold a whopping 201 books (not much to live on or contribute, but at least it's a start!), and I have 5 clients (one I travel to work with her once a month in person).  Hey, it's a start!

My favorite thing about coaching is that we simply cannot see ourselves as clearly and objectively as another can.  Maybe there are a select few walking the planet who can be the unbiased observer of their experience, but for the rest of us, allowing another person to get in 'under the hood' and see things from an objective, unbiased position allows for blind spots to be easily brought to light.  The light bulbs that go on on the other end of the phone while working with someone on an area really important to them, man, it is just THE BEST.  I can HEAR IT go on.  BING!  What a feeling of gratitude at the end of a call to KNOW I've made a positive difference in the life of not just another person, but that difference instantly ripples out to the people they interact with... family, co-workers, the whole bit.  Too cool.

Okay, okay.  Lastly, I have written about this before, but what a difference a day can make.  Listen to what a completely different place I am writing from tonight!  24 hours.  Cause breakthroughs in others lives all day and I guess I'm bound to cause a breakthrough in mine too if I want to be coaching from a space of authenticity and integrity.  I was more present and ease with Ang and Ali tonight than last night, that's for sure.  See, the ripples are good for me too!  :-)

So, if you had a bad day, just think, if a guy out in southern Cali can turn it around in a day, in the midst of losing his little girl only 3 months ago, so can you!  You and I get a whole new day tomorrow!  Then, if we underutilize or even blow tomorrow, well, chances are good we'll be back Friday to try again!

NO guarantees, mind you, but I say the above to hopefully give you hope if hope is currently missing.  It was missing for me yesterday, but not today.  Now don't get me wrong, I got some crazy bad news today on TWO FRONTS regarding the conference I am planning for late March/April, but one thing I have learned from this whole journey and now coach others on is this:

The events / circumstances of my life don't have the final say, I do.

Said another way, I give very little say to the events and circumstances in my life.  They are a rather small percentage of what determines in my head what is possible.  No matter what happens, I always get to choose how I want to relate / respond to any event or circumstance.  So, inside that, I try to choose wisely, because I know I am the one choosing.

For example, I found out today that the hotel hosting our conference will not be able to process our members' discount code on their website FOR THE NEXT MONTH.  Now, I don't know what world they are living in that anything takes a month to fix online, but ALL of my marketing pieces including my website drive people to the hotel website to register.  None of my members will be able to book their hotel for the next month at the rate I promised them.

When I heard this I literally started laughing out loud to my convention manager.  I asked her how many heads rolled for THAT blunder!  Seriously, someone must have REALLY screwed something up to have them off line for discounts for 30 days!  That's like ETERNITY online! LOL.  The news was so stunningly BAD, I literally just had to laugh.  I mean, you couldn't have told me that could happen; I simply wouldn't believe you.  Now, I don't have a clue how I'm going to deal with this on my end, but as an entrepreneur, I think that my job description really is "Chief Problem Solver."  So, it's really just par for the course.  I know that, as my mom loves to say, I always land on my feet, so I'll make it work - it won't be perfect, but what ever is?  I don't NEED to stress out about it.  I could, of course, but that is MY choice, it's not a requirement.

Do you stress out or get triggered by things automatically?  Try "not" doing it for one week.  See if you can!  It's not easy.  It is simple, but not easy.  We tend to wire ourselves for "if - then" clauses... i.e. if Johnny does X then I will get mad.  I used to do that with Ali a lot, and I'm really happy to say that I have really worked at not getting automatically triggered by a 4.5 year old for being 4.5!  LOL.

Who triggers you?  Why not abstain from "getting triggered" for a week, or even just a day!  See if you can, and if you do, see if it makes any difference FOR YOU.  We can't change anyone else (after all, can someone change YOU against YOUR will?), but we can always change ourselves.  What a gift that is.

Lastly, if you think having me as your coach might be right for you, I'd be honored to talk further about it.  Just reach me at  Since you're from the blog, if we work together, I'll donate 50% of my fee to PUCK as well.  I'll leave it at that.  Thanks for remaining by our side through this journey.  We still feel blessed through it all.

God night.

Tuesday, January 18, 2011

January 18, 2011: Grinding away


I have a question for all of YOU...

Did anyone even see an ad on the blog in the past 48 hours?

I have been blacklisted by google adsense.  Not good, since Google controls most of the universe these days.  They told me I had illegal click activity on my blog.  I don't even remember seeing any ads yet.  I wonder if my comments about NOT clicking got me in trouble somehow?  Weird.  I am going to appeal it, but their Q&A on the matter leads me to believe I am SOL on this for this account at least.  That's a drag.

That, my friends, is why you should always have multiple streams of income for whatever it is you are up to.  You never know when and where one stream is suddenly going to dry up!  I think the investing word is 'diversification!'  However, until about a year ago, I thought that only pertained to where you invest the money you already made.  Now, I am learning that the 80% of wealthy people out there have multiple streams of income as well as multiple streams of investment... the game being that when you avoid high risk investments, they become a source of income themselves over time!

Alright, enough about that.

Q&A:  Yes, standard vaccination schedules are followed with the kids in the BMT trial.

Today has continued to be a rough grief day.  I shake it for a little while, then it creeps back.  Combined with the grief is the overwhelmed feeling I know too well when I over-commit or over-extend.  I am reading a great book by the organizational guru David Allen called, "Getting Things Done."  In it, he paints a very sympathetic heart for the overstimulated and attention depleted world we now live in.  He explains that for 99.99% of our human history, work was self evident.  Crops needed tending, buildings needed building, etc.  Only in the past 30 years or so have we moved into a primarily knowledge economy.  Work is never finished, and there is no clear indicator for what is the 'right' work we should be doing.  The tyranny of email alone has cast most of us into an un-winnable game of survival with our inboxes.  Right now, I have 4291 emails in my inbox in my Gmail account.  That's not including my junk mail or spam folder, and that is only 1 of now 4 different email accounts I manage.  I am under no illusions that I will NEVER, EVER, EVER clean out that inbox.  However, it represents my brain in a way.  We all get dumped on every single day by endless emails (the average office worker gets just under 200 a day) and we are forced to make hundreds of micro decisions a day... do I open it?  Do I read it?  Do I reply?  Do I reply all?  Do I delete it or just leave it?  My brain is fried trying to manage this tidal wave in the space of pain and grief, and I know you don't need to be going through pain and grief to feel bludgeoned by email!

Hahaha, my brain hurts just LOOKING at that run-on paragraph!  Poignant...

What else...

I need to go to bed.

A tired, fried, and frazzled hug to you all,

God night.

Monday, January 17, 2011

January 17, 2011: The peace and the quiet


I like the idea of starting the blog off by answering Q&A from the previous post!  So, let's jump right in...

1.  I think that you might get an occasional blog post out of Ang, but I got the kaibosh suggesting she even blog maybe on the same day every week... too fast... gotta get her going a little slower.  Ang is much more private than I am (THAT'S not hard!), so she really doesn't have a burning desire to just start "talking" over the blog.  Maybe you could send her your questions or requests on topics you want to hear from her on.  That might get the creative juices going!

2.  Adoption.  Good question!  We've talked about different "not 100% Tim and Ang" options and none of them have really lit either or more importantly BOTH of us up.  It's a shame the adoption process is so convoluted.  I think more people would adopt if the process was simpler and faster.  Somehow, based on timelines and hoops people have had to jump through, that wouldn't be hard to improve, but that is definitely not my battle this lifetime.

3.  Anton.  Anton is the boy in Russia.  There were a couple of days when the first news of Anton surfaced where I thought about what it would take to become his parents.  It was just too much to process at the time of our grief.  Frankly, it still is.  I haven't heard about Anton in a while either, and while on paper we would be qualified to care for him, my brain can't even manage to imagine it, and my heart and brain feel hazy and heavy just imagining it for a SECOND.  I listen closely, and again, it's not the right fit.

Good questions!  Feel free to keep them coming.  Thank you for being sensitive.

I feel very clear and empowered in our current campaign, and here's why...  I have had Bella say to me twice that this treatment breakthrough isn't even about EB.  There are over 400 other skin disorders this will treat.  Bella has told me there is an important child to be born at a point in the future who wants to specifically do great things, but also wants to come into the world with a disorder that she can overcome, so Bella was like the set up kid... come, do her thing, get me involved, accelerate the doctors' breakthroughs, cause the treatment to be ready, give the girl the green light to be born, she then gets to go do her thing... this is the breathing in and the breathing out of life, and of God, and of the Universe.   This is the game I'm playing. Just a bit part in the universal thread of life.

To further help raise $$, I have launched a new professional blog at  I feel compelled to blog about more and more success principles, and I also launched my professional speaking career page today at  I feel like the more speaking opportunities I get, the more people I will inspire to get involved with this study.  The blog entry I wrote last night for that blog... I actually wrote it on here first, and realized there was so much more I wanted to write about here, and I don't want this page to be too long each day.

Also, I am going to run a google adSense campaign on this blog for one month to see what kind of revenue it creates for PUCK.  It's strictly an experiment.  Google will select the ads and place them based on the content of the blog.  Since the blog readers here are pretty loyal and 'regulars,' we'll see if it creates any new revenue.  Once you see them, please, only click on them if they are truly relevant.  People get charged per click, and it wouldn't be ethical to run up people's bills for ANY REASON.  That's just bad karma, so even though you know where the income will go, please don't click unless it is a legit reason, okay?

Finally, on kind of a sad note, we straightened the house a bit over the weekend, and today (even though Ali was home sick again) it was just neat, and peaceful.  I miss Bella.  Ugh.  Ali (4.75 years old) is a joy, and at the same time, there is just. this. giant. void. I suppose that void will hurt sometimes more than others, as it did today.  I think you understand that this campaign is one way for us to stay connected to Bella.  It is one way to make sense of Bella's death.  Fight as hard as we did and try just giving up.  Forget it.

God night.

Sunday, January 16, 2011

January 16, 2011: What month is it?


Hey!  Thanks for those of you willing to de-lurk!  That was great to hear from you again!  Thank you also for your thoughts and questions.  Feel free to fire away any questions you have, we're free to choose to answer or not, it's okay!  It's great to get a sense of what you'd like to hear about.

So, in line with that, let me share a little about some of the more common questions that came up before getting into other fun!

1.  I have offered to Ang more than once to guest blog if she wants to.  Maybe enough of you will call her out often enough that she won't be able to refuse you, because she has little trouble refusing me!  LOL.

2.  Children... good question!  Boy, watch how depending on which lens we look through changes the complexity of that question...

Lens 1:  Thinking about it:  Boy, there is a lot to think about with this question.  I mean, we have a 25% chance of having another child with EB.  If we have another child with EB, would we go through the transplant with him or her as an infant again?  What if we tried in vetro and tried to control for EB?  How many embryos would that take?  What would happen to the EB embryos?   What if we selected an EB free embryo then miscarried, or the child had some other deformity?  Ugh.  So many different scenarios to think about.  It actually hurts my brain just trying to articulate them!

Lens 2:  Praying about it:  Well, that's easy.  God has a plan.  If another child is in it, so are we.  Our faith in God's Providence is unconditional.  So, if it is to be that Ali gets to be a big sister again, EB or not, than that simply is what is so.

See, it is far easier to put that conversation in God's hands than in ours.  I know I speak for Ang in this as well because we have talked about it more than a couple of times, naturally.  See, if Bella's soul truly wanted to come through us to earth and touch it as beautifully as she did with us as her partners, who were we to block her?  The role of parent shifts vastly depending on your faith background.  To us, we were simply stewards of another soul that chose to have the exact experience she chose.  We were chosen, and we answered.   We were quite blessed to be Bella's parents.  Now, going forward, if God says to us, "Uh guys, the journey isn't over," we're there.  If he says, "You're done," then so we are.

"But that really isn't very responsible thinking, Tim, I mean, you're just leaving it up to God?  You know there are precautions you could and frankly should take to prevent such a tragedy from happening again..."

Ah, thank you, fear.

Sounds reasonable, right?

Folks, I know people who have done everything in their power to get pregnant and can't, and others who so much as walk by each other and do.  Again, the illusion of control at work.

2 lenses, same subject, radically different perspectives.  That's what makes the game of life so AWESOME!

The bathing beauty...

3.  More about Ali.  Well, Ali hit the pool today (hot tub... as you can see by the photos, the 'big pool' was a chilly 55 degrees despite it being 70 degrees out...).  I keep trying to explain that the warm air doesn't automatically mean warm water, hopefully it sunk in a little more today!  Ali actually stepped in the water and her feet could handle it, but as soon as she took another step and the water went up to just below her knee, that was IT.   She was on her way over to the jacuzzi before you knew it!

Hot tub...


Yesterday, we went to the zoo since it was down right HOT out.  We went to the local Santa Ana Zoo that is easily missed, but frankly has a KILLER family section to it with an awesome train, carousel, playground, petting zoo, concession area.  Ali LOVES the zoo.  I loved the zoo growing up.  I wonder, do you think any kid doesn't love the zoo?  Somebody tell us all a weird story about a kid you know that doesn't or didn't like the zoo growing up.  I'm sure there's someone out there (Paris Hilton and Nicole Ricci come to mind for some reason... DOH!) who had no interest in getting off the concrete and communing with animals of the wild.

Finally, Ali simply ROCKS.  Over the past few days, her ability to understand reason and logic and, in turn, follow directions has JUMPED up.  I sometimes stand dumbfounded as I explain to her why she needs to do something, and she 'gets it,' and simply stops what she is doing and follows daddy's order.  It blows my mind!  Also, again, her language skills are just keeping us bewildered day in and day out.  Today we were discussing the conundrum of spiders:  Scary looking spiders like a daddy long leg or tarantula are harmless while beautiful or striking spiders like the black widow or brown recluse are super dangerous.  She reiterated the entire paradox to mommy in the car and said, "Today, my daddy explained to me..."  She just blows her proud poppa's mind every day.

Playing Hula Hoop on the Wii Fit at Grandma and Grandpa's house!


Okay, on to the Providence Story of the Day from Friday at NAMM:

Friday afternoon, I had a couple of hours to myself between video shoots to explore NAMM.  What a gigantic universe to explore!  Too much to try in one afternoon.  It is so big, and there are so many booths that have artists visiting all day over the 4 days, that the odds of running into any of my heroes during my 3 hours set loose were pretty slim.  No worries, I figured I'd just try to at least get all the way across the three floors, three hotels, and so many millions of square feet there were to see at least once.

I literally ran straight into Blake Lewis from American Idol along the way...

Well, then, I stumbled upon the Ernie Ball booth...

Two of my guitar heroes play Ernie Ball guitars.  One of them, Steve Morse, is the reason I am a music therapist, and as such, is the reason that I had the honor of being the soundtrack of Bella's entrance into earth, and entrance into heaven.  See, when my 5 best friends were murdered in 1995, I went to a Steve Morse concert the night of the 5th funeral in 4 days.  I played a song for all my friends' funerals, and it helped heal our small town, but it tore me up.  However, when Steve was on stage, I was at peace for 2 hours... and for the first time since I got the news a week earlier.  At the end of the show, I told him that.

In that moment, what I provided for my community came full circle and it provided the same for me...

Behold the healing power of music.

It was in that moment that the purpose of my life was revealed:  to heal the planet with music.

I have been at it ever since.

In 2003, I saw Steve play a show in Tempe, AZ, and reported to him that I had started a heavy metal band that was spiritual for dark kids to help them find God in their own way.  One night, one of our fans was going to kill himself in his room.  Our CD came on in his CD changer (it was on shuffle), and he thought about how disappointed my singer and I would be if he killed himself, so he didn't.  The fan told me this story himself many months later.  Well, I shared this story with Steve to let him know that I was not only with that boy in that moment, but so was he.  He just hugged me, and said, "Yeah man, that is the power of music!"

As I walked through the booth, I saw the Steve was scheduled to play on stage in 45 minutes.

I knew he had to be around.  I could see other famous guitarists and bassists literally milling about the booth.  I knew he was there.  Sure enough, I found him practically hanging out by himself.  I waited for him to finish the conversation he was having, and then gave him my 2011 update.

I gave him my business card - now a board certified music therapist - and explained how he was once again with me as I sang my daughter both in and out of this world.

You can imagine at this point, after refreshing him on the backstory, he was a little overwhelmed by it all.  He could barely even look me in the eye his brain was so completely blown over the fact that it was "your own daughter????" as he said in his words.

"Man, you have GOT to share this story.  People NEED to hear this.  Figure out a way."

I told him I would, and that I looked forward to finding him somewhere in the future, and reporting on my progress.

Me and Steve Morse...

Folks, has someone steered you onto your present track?  Has it been a while?  Do they know the heights to which you have climbed along the way on your journey?

Go back and report to them your progress.

Sometimes you never know
How far the ripples go
When you throw yourself into
the pond called life.

Sometimes you never know
How far the ripples go
But you throw yourself back in
again and again
with a smile.

God night.

Thursday, January 13, 2011

January 13, 2011: Rounding the corner...


Just have time for a quick update.  Need to be up at 5:45 tomorrow.  I am working at NAMM for the first time EVER!  NAMM is the National Association of Music Merchants, and each year they hold a 3 day event in the Anaheim Convention Center just 15 minutes away, but it is invite only for most of it.  It is like Christmastown USA for musicians as ALL the major and minor music companies set up their booths and show off their latest everything.  I will do well to leave my credit card in my car! LOL.

Anyway, one of my clients and mentors, Christine Stevens, is leading a drum circle there and participating in a panel discussion on the recreational music making movement in the U.S. and I will be managing time and shooting photography for her.  We set up at 7:30.  Woof.  I am NOT a morning person!

Everyone is over the pukes here in CASA Ringgold.  THAT is a good thing.

Ali is just about the cutest thing on two legs.  Her vocabulary, inflections, timing, and overall conversational skills seem to be just exploding again.  All you parents out there know what I mean when I say how much it blows my little mind watching her blossom right in front of me on a daily / weekly basis!  She is really trying to attach to Lucy, our grumpy old chihuahua, and we literally hijack Lucy and stick her in Ali's loft every night.  It's warm, soft, and there is plenty of room so she is only marginally more grumpy about the whole thing.  It has helped TREMENDOUSLY having Lucy in the room with her at night.  Ali really misses having Bella in there with her, so Lucy is pulling surrogate roommate duty.

Alright.  Hey!  If you haven't commented lately, drop a line and say hi!  Just let us know you're out there.  I have to admit that knowing 1,000 people read the blog and 4 people comment feels a little weird.  Time to de-lurk!  I'm still learning about being a blogger.  What would you like to hear more about?  I bet there's an article out there, "8 Ways to make your blog readers comment more..." LOL.  Alright, alright, I'm just messing with you all.  Back east, that's a sign of affection.  A guy from New Jersey and I were just laughing about how much we have to dial back our normal wise-alec tendencies living in southern Cali...  different culture from the northeast.  When you mess with someone, it's a sign of affection... it means they actually mean enough for you to even talk to them!  LOL.

Alright, really, I'll stop.  Big smiles, hugs, and a warm heart to all of you out there!

God night.