Monday, November 29, 2010

November 29: Cyber Monday? Okay!


This is the first year I recall learning of "Cyber Monday."  Heck, last year was the first year I heard of "Black Friday," so I guess it's all good.  I always knew that Friday after Thanksgiving was the busiest shopping day of the year, but I never knew it had a name.  I guess Monday got jealous.

Anyway, there are still a couple of hours left out here on the west coast to log in to and choose P.U.C.K. as your charity of choice.  When you search on their site, P.U.C.K. gets I think a penny per search, and when you purchase items through their site, P.U.C.K. gets a percentage of the sale!  So far, has donated $34.22 to P.U.C.K.!

Remember, enough snowflakes makes an avalanche!

In other news... Ali is super clingy right now, which is really cute, but sometimes it can get a little cumbersome.  She switches on a dime between being really independent to really needy, and likes to act like a baby as well.  I suppose it's all part of her own grief journey.  Poor mommy.  Right now, Ali calls out to mommy for every and any little thing she can think of almost every half hour from bed... almost all night long.  If I go in, she gets mad and say she wants mommy.  Long nights right now.

Speaking of grief journey, I was recently introduced to a PHENOMENAL new source of literature on the topic of grief.  There is a gentleman by the name of Alan Wolfelt, PhD in Fort Collins, CO at who has been writing and leading workshops, seminars, and retreats on grief for years now apparently.  He has I think 37 titles on grief published!  He runs a grief retreat center next to his home in Ft. Collins, and writes on every angle of the grief journey under the sun.  One of the counselors I lead the Grief and Loss Retreat in AZ with attended one of his seminars and was really impressed with him.  So, I went online and found his catalogue of titles and asked for one of his books for Christmas from my mom.  Well, being as cool as she is, she ordered it immediately for me so I wouldn't have to wait to benefit from it!  The book is called Healing a Parent's Grieving Heart: 100 Practical ideas after your child dies.  (I'm hyperlink happy tonight!).  Anyhow, it is organized into 100 simple lessons, one a day, kind of.  They are simple, but powerful, and based on the testimony of hundreds, perhaps thousands of parents Alan has worked with over many years.  There is a new concept shared each day, with just a few bullet points to highlight the thought, and then he finishes with a call to action / action item you can take based on the point of the day.


1.  Know that you will survive.

Love that.

Action item?

Talk about your feelings.  Just sharing them with another person helps them dissipate.

Here's the best advice I can give about being that other person who is called upon to listen.  You don't need to say anything.  You don't have to fix, solve, or console.  People need to know you are WITH THEM.  If you can just BE with someone's pain without having to take it on or do anything with it, you give them the freedom to be with their pain as well.  When they realize that you are really listening, it takes the lid off their self expression, and they experience the SAFETY and FREEDOM to really share what is inside of them.

Ever start talking to someone and you just know they are not listening to what you are saying?

Ever talk to someone and they cut you off with their neat-and-tidy solution to your problem before you even finish?

You don't feel much like going on, do you?

Ever talk to someone and you can tell they are with you, following every word, and giving you all the space you need to say what is bottled up?

It is like a vacuum.  It allows things to surface for the speaker that otherwise might not in either of the earlier scenarios.

The gift of space.  You create it in how generous you are with your listening.  You create it when you shut not only your mouth, but the little running dialogue in your head you have about what they are saying.  I'll stop writing for a second so you can hear that voice.

Yeah, that voice.  The one that just said, "oh yeah, I know that voice." or "what voice?" or "what is he talking about?"

That's the one to really pay attention to.  If you can put a lid on that little guy, you are ahead of 99% of the world in your listening ability.  Try it.  It's a great practice.  I first learned that concept in one of the most powerful seminars I've ever taken, The Landmark Forum, back in 1998, and I've been practicing keeping it quiet in my listening ever since.  It's tricky!  Try it!

Angelique and I have both participated in many programs Landmark Education offers, and we can say without reservation that we would not be married today if it wasn't for what we learned about ourselves in their seminars.  The distinctions they teach about how we operate as human beings are so powerful and easy to recognize that once you see them, you can't miss 'em again.  They give you such insight as to why the areas of life that are important to you aren't working as well as you'd like them to.  I now have multiple tools I can use to help me get unstuck whenever I am experiencing a loss of personal power, freedom, or full self-expression.

Gooooooood stuff.

The two BIGGEST sources of our strength through this journey?

1.  Our faith
2.  Our training at Landmark.

Check them out.  Go attend a free introduction or go to a guest event at one of their centers.  I used to lead the free introductions to help people see how this seminar would support them in the games they were up to in life... or more often, how it would support them in beginning to truly play big games with the life they already have, but haven't been powerfully using.

There is a world full of spectators in the game of life, and there is a much smaller portion of players in the game of life.  Most react to life, some create the life they want to see.

Are you playing the game of life?  Or is the game of life playing you?  Wanna get off the bleachers and finally get on the court?  There is no circumstance (other than you) stopping you.

Yup.  I said it.

You are a circumstance.  (Me, too!)

Ouch.  I know.  Trust me.  I know.

Most of us (it's part of being human) sentence ourselves to a point of view or place in life without actually pushing to see if there is a lid to our experience or potential at all.

Some of us push a little, and at some point give up when it 'gets too hard.'

Some don't stop pushing until they achieve their vision or goals.

Some (very few) realize they don't need to push at all.  There is no lid.

Yup.  No lid.  Just us.  We (our 'minds/thoughts) are our own lids.

All manifestation and creation begins with one pure energy.  The highest, fastest vibration known to man:  THOUGHT.  If we can liberate our visions for what is possible from the prison of our own fears, judgements, concerns, we are free to really create.  After all, what do we really know about what is or isn't possible?  Where do we look to see if something is or isn't possible, anyway?  The past.  Has it been tried before?  Have I tried it before?  Bob tried it once and remember what happened to him?

Looking to the past to see if something is possible is like driving down the road looking through the rear view mirror.

There are two reasons I issued last night's challenge to you.

1.  To help find a cure for EB and 400 other skin diseases.
2.  To challenge you to confront what you think is or isn't possible.

Judging by the comments, and by the fact that only 1 single person emailed me with her name and the amount of her choice, I'd say there are probably a few of you that were confronted by that challenge a little... particularly in the realm of 'whether it's possible (for you) or not.'

What I imagine happened was you made a decision in the moment before ever actually trying. Others probably got hung up on 'how do I pledge my word on producing a result when I don't know how to do it?'

Heard the phrase, "ready, aim, fire?"

It's actually, "Ready, FIRE, aim."

Great example of this... I have struggled since I got back to CA with beginning a workout routine.  I kept saying I needed to research whether Snap Fitness was cheaper than LA Fitness, but the one day I actually went to find out, the owner wasn't there.  So, I told myself that he wasn't making it easy enough for people to join his gym, and so in making him wrong, I got to be right about not yet working out.  Meanwhile, Ang (the smarter, stronger, and wiser of the two of us as you by now also recognize) kept on me.  "Why don't you start exercising while you figure out which gym is better for you?"

Ready, fire, aim.

So, after about 3 weeks of whining as to why I wasn't working out yet, I finally got on my bike and went for a ride.  That broke the inertia.

Inertia is a powerful law in the universe and not one to be overlooked.  If you haven't done something before, or in a while, it takes a significant amount of initial energy to 'get the ball rolling.'  However, once the ball is rolling, the inertia of movement leads to momentum of movement.  Today, I rested, because I was WIPED OUT from the two peaks in two days and 4 hours of sleep I got last night after a long drive home.  You better believe that I can't WAIT to get back on my bike tomorrow!

Can you notice the difference between:

Getting confronted, before taking action, that you won't be able to accomplish something,
trying your butt off to accomplish something, and missing the mark?

I think we are as a society so afraid to 'fail' that we don't ever try half the things we would if we didn't care if we 'failed' or not.

If a student studies for a test of a hundred points, but only gets 85 of them, does he or she fail?

Why as adults do we turn into these terminal perfectionists that say things like, "do it right or don't do it at all..." or some version of that?

Let me put it in more relevant terms... do you think I or anyone else would be mad, sad, or let down if you pledged to raise $1000 for PUCK over the next 6 months, and on May 27, 2011, you only managed to Raise $500?  Isn't that $500 more snowflakes than if you never even bothered to try?

I think there is a quote that goes something like, "You only fail if you fail to try."  If not... I just made up a new one! LOL.  Look for it in next year's successories catalogue!

Good thing adults don't have to learn to walk.  Can you imagine how THAT would go?  We'd all be dragging ourselves around saying things like, "gravity is just too hard," or even better, "I tried and it didn't work for me." or "I was gonna but then I saw Judy fall and hurt herself and I said forget that!  I don't wanna get hurt!" or "it's a sign.  It wasn't meant to be."

Somehow, we play it safer and safer and safer, till we stop playing at all.  It's safer that way!  I think we don't want to get hurt again, either by someone or ourselves, for missing the mark, whatever that may be.  I know for myself, "I won't do THAT again" has been useful for not burning my hand on the stove, but wasn't so useful when it came to asking girls out after I got dumped as a 15 year old.  There are three male friends of mine right now in their early 40's who are total catches, but are paralyzed over giving their heart to another woman after it got ripped out once.  They have imprinted in their mind that it is safer not to open the lock, and in doing so, beautiful, wonderful women pass right through their fingers and they can't - they won't - take that chance again.

It's not whether or not any of us have any fears in life.  It's whether we let those fears actually call the shots.  Some fears are legit... i.e. don't walk down a dark alley alone at night, but most fear in our pretty affluent, comfortable, access-to-clean-water, food, and healthcare society is a little... unnecessary.

How do you feel when you face your fears, and watch them disappear?

How do you feel when you let your fears dictate what you can or can't do?

You can be burned in wither case, for sure, but life without risk is life without reward.

Okay, enough of all that, I can sure drive a point way too far can't I?  :-P

Here are 7 ideas for you to get the ball rolling:

1)  Google fundraising.  Holy COW there are a million ideas out there.  Find one that sounds fun and GO FOR IT!
2)  Do you send out Christmas Cards?  In your card, make a simple request.  Ask people to go to and make a donation of ANY AMOUNT to a cause you are focusing on this year.  I know a woman who raises over $3000 a year EVERY year for the 3 day cancer walk she does just by asking for pledges in her Christmas letter.  Her words?  "It's easy."
3) Write a list of 20 people you know and respect.  Write them a short letter explaining Bella's story briefly and your commitment to being a part of the cure.  Simply ask them for a $50 donation.  One a week.  That's it.
4)  Ask your email list/facebook friends to donate $1 to $5.  Just post a link to the blog every day till Christmas so depending on when your friends are on fb, they'll see your post on their home page.
4.5)  Email your ten closest friends on FB and ask them to help you raise the $$ you want by sending out links to PUCK or the video below on their fb pages
5)  Ask that in lieu of presents you don't need this Christmas, have your friends, family, co-workers make a small donation to PUCK instead.
6)  Have a garage sale.  Make money for PUCK and space for your life
7)  Enlist the help of your family to raise $ through their social networks.

Here's the thing: TRY.

As Angelique said today to me, "Ask them to focus on what they CAN do instead of what they CAN'T do."

Lastly, one commenter asked a great question about other research.  GREAT question!  Yes, DebRA has been funding other research for years, and EBMRF has funded MILLIONS to Stanford U. and more recently USC.  U of MINN started this study with ZERO funding from either organization.  More recently, both organizations have begun to help fund this study, but Drs Wagner and Tolar have been operating on a shoestring budget the entire time.

Dr. McGrath from England acknowledged that the work Wagner and Tolar are doing is the closest whiff of a cure ANYBODY has come upon in the past 20 years world wide in the world of EB.  Even now,  Dr. Wagner is consulting with Dr. McGrath to assist in this same study to begin in London.  So, I couldn't agree more about not putting all your eggs in one basket, but the good news is that the other baskets have been getting WAY more $$$ for decades and have no cure to show for it, despite persistent teases that "we're only a year away..."  year after year.

The key to this is that the procedure works.  Kids are already growing their sibling's skin on their body.  It's the process of the procedure that desperately needs refinement.

LAAAAST but not least, check out the new video of the speech I gave in LA a couple of weeks back.  PLEASE FORWARD THIS VIDEO OUT to all your social networks.  It was an absolute gift, so let's use it to its fullest potential!  It is also posted under videos so you can go to the page on youtube and share the link from there as well.

I hope I am not wearing you all out.  I know I push hard on you.  I push on you to think and act in new ways that I hope add power, freedom, and maybe some new insight.  I cannot keep my passion down.  I hope my words in some way motivate, inspire, cause you to think about things in an empowering way.

God night to you all.  I love you.

November 28: The Alien has taken over...


Well, it's official, the alien has taken over.  I found myself at the top of a second mountain in two days... now when I say 'mountain,' I exaggerate a little, the summit trails at Camelback Mountain and Piestewa Peak are only about 1,200 feat up, but hey, I lived in Phoenix for 9 years and one ascended each summit once, and it was definitely NOT in back to back days!  I'm hooked on exercise again!  I used to exercise regularly, but after Bella was born, I found it more and more challenging to do so, and once we got to MN, I just couldn't get the motivation to do it.  Now, I feel like honoring Bella by being in the best shape I can be in... not because I 'should' or 'have to,' but simply because I have the opportunity to.  Bella's death has refocused my life; my days could be expendable, but who knows how many of them I really have?  So, now, I don't waste a day.  This morning, I brought my drums to the peak of Camelback Mountain and we started a drum circle on the top of the mountain.  We had 9 people drumming together at one point!   Can you imagine how cool that must have sounded to those people near the summit?

The jam in session...

I brought Ali and Bella with me to the summit... Ali gave me the picture she colored in for my trip!

My dear friend Jim and his girlfriend Amy...

Providence Story of the Day...

After our morning hike, I took a trip to my favorite Sunday spot in Phoenix: La Grande Orange.  It's a funky little market/restaurant that makes the best croque madame ever.  I eat there maybe once a year, and it always makes me happy!  Well, anyway, after my lunch I headed across the street to my car.  As I looked back at the restaurant from across the street, a kindly gentleman was handing some money to a homeless man. I looked a little closer, and said, "Is that Tom Hoover?"  Tom Hoover was my coach in an incredibly rigorous 7 month leadership training course I took at Landmark Education called the Introduction Leaders Program back in 2002-2003.  I became trained to lead an interactive, 3 hour workshop as a volunteer to share the principles of their main seminar: the Landmark Forum.

Anyhow, I haven't seen or talked to Tom since I moved to CA in 2004, and as soon as I saw him, a little voice went off in my head.  It said, "Tim, remember?  Tom is involved in a lot of community projects!  You need to go talk to him RIGHT NOW."  So, having learned to listen to THAT voice, I turned away from my car, and headed back across the street.  Sure enough, it was Tom, and I gave him a big hug and we started to catch up.  Then Theresa Gonzales, one of the staff members at the Phoenix Landmark Center, walked up.  I hadn't seen Theresa since I moved either, so suddenly it was a mini reunion!

I started catching them up on life since moving to CA, and they both knew from different sources about Bella, and so we started talking about her story.  When I told them that I am COMMITTED to raising the $1, 050,000.00 for Drs Tolar and Wagner to finish this research and find a cure for EB, Theresa looked at Tom, and Tom looked at me and said quite matter of factly, "That's not a lot of money to raise. We can do that easily."  Theresa then added, "You know Tom is the master at fundraising for non-profits, right?"  I knew he was involved in the community, but I never knew to what extent.  Turns out Tom is an expert in raising LARGE sums of money for good causes.  He IMMEDIATELY started to break down how to do it.  Then, he added, "Just to give you a little back story on me, I contracted polio when I was 2.  My dad was somehow asked to be part of a fledgling group called The March of Dimes to raise money for research for a cure, and he raised $50,000 in less than a year (this is going back to 1955), and in that same year, Dr. Jonas Salk discovered the cure for it."  (Editor's note... I am trying to quote Tom as best I can, and I think I got the story right.  The March of Dimes at the time had another word in front of it that Tom mentioned and I can't remember it.)

The three of us spent the next 3 HOURS brainstorming ideas and when we left, we were all filled with energy and inspiration.  We have MULTIPLE STRATEGIES now to raise some serious cash for the docs.

These strategies involve YOU.

Yes, YOU.

Yes, I mean YOU, too.

Even YOU.

Here's the deal, every single day, around 1,500 of you read this blog.  THAT is amazing.  Why?  because if each one of you PLEDGED to raise $1,000 for this cure, WE WOULD HAVE $1,500,000.00 to complete the research needed to isolate and identify the specific stem cell that is causing this BREAKTHROUGH.

Do you think you (yes you) know 10 people that would donate $100 to find a cure for EB?  What's better, they will be funding the treatment of OVER 400 DIFFERENT SKIN DISEASES with their $100.

Think that's a good investment?

Do you see how EASY that is?

There are 10 people in your life that would give you $100 in a moment's notice if you really needed it.

When was the last time you could tell someone exactly where and how their $100 donation would be spent, and to what good would come of it?

Folks, it's that simple.  Plus, it's actually more than the docs asked for.

Our friend Sara raised $4,500 for the CHOC walk for Team Bella.  Think you could raise $1000?  How bout if I gave you till Bella's birthday:  May 27.  6 months.  Think you could raise $1,000 in 6 months?

I tell you this:  I could raise $1000 in 6 weeks.  I could raise ten times that probably.  How do I know?  I already have.  With just the little button on this blog, combined with what I raised at the conference in LA, we have already raised over $11,000.00 in 6 weeks in honor of Bella.  I don't share that to toot my horn, I share it to say that despite what anyone says about the economy, the time of year, or any other circumstance, $11,000 has already found its way here, which means, IT IS POSSIBLE.

Now, the reality is that 1,500 people will not answer this call.

That's okay, too.

So, those of you who DO...

What are YOU willing to raise?  You know people I will never reach with this blog.

Here's what I challenge you to do:

send me an email at, and say: I'M IN!  Then, sign it with:



So, your email would read:

Dear Tim,



Jane Smith

Got it?

Then, once I amass this list of members of TEAM BELLA, I will start emailing you once a month with some personalized strategies and motivation and inspirational stories to keep you focused on your pledge.

We will also have conference calls that will be recorded monthly where we can get on the line together and share our successes and our challenges.

Now, it's Monday morning, and you are probably starting or ending your day by reading this.  JUMP ON THIS.  Right now.  SERIOUSLY!  Send out this blog address with a CALL TO ACTION to your email list, post it on your facebook page (again), tweet this on your twitter page, call 2 people you know TODAY, heck, call and email Oprah! Share with them this game.

How would you like to be part of a cure?

Life is a lot more fun when it is about more than myself.  How 'bout you?

Has Bella inspired you?  Taught you a lesson or two?  Many of you have said she has changed your life in some way.  Here's how to pay her back, and pay it forward at the same time.  Let's make sure that in the very near future, no other EB child has to follow her steps to heaven so quickly.

I have already given my word to Tom and Theresa that I will text them with just one word:


God night, indeed.

Sunday, November 28, 2010

November 27: A Dream come true for Daddy!


Greetings from Phoenix, AZ!  I'm out here in a very important mission:  to see Roger Waters perform Pink Floyd's "The Wall" in its entirety in concert.  30 years ago, this groundbreaking concert was only performed in 4 cities across the globe.  Roger is the bassist from Pink Floyd and the author of this record.  This was one of my formative albums in high school and I figured since the band was broken up by the time I started listening to them, I would NEVER get to see this production live myself.

Well, never say never!  My Step bother Ralph books the entertainment for US Airways Arena in downtown Phoenix, and so the DAY the concert was announced waaaaaay back when,  I asked if we could get a pair of tickets, and he graciously hooked my good friend Jim and me up!

The concert was AMAZING.  For those of you that don't know, they actually build a giant wall between the band and the fans throughout the set, signifying Roger's disconnection from humanity during the band's meteoric climb to stardom.  Then at the end of the two disc rock opera, the wall topples.  Throughout, the use of the most state of the art video imaging is used to tell the story on the wall with the wall essentially becoming the screen the story plays out on.  It was so awesome, I can barely speak.  Enjoy the slides, and pardon, I think there is a bad word on one of the pictures.

Before the concert, remember I told you an alien took over my body yesterday?  Well, today, he had me climb Piestawa Peak in Phoenix, and tomorrow, he has me climbing Camelback mountain in Phoenix as well!  Gotta get these legs strong if I want to enjoy myself and not get injured when I go skiing with my sister Tracy and her family on the 23rd of next month!

Okay, gotta crash.  I am fading.  Can't wait to hike, and then get back home to Ang and Ali tomorrow!

God night!

Friday, November 26, 2010

November 26: White Friday


As most people spent the day helping businesses get into the black for the year, Ang and I spent the day holed up in a room with two white boards creating the future of our company, The Divine Planet.  It was very exciting!  We created our mission statement, vision statement(s), divisions of the company, and an entire suite of products and services for each division.  We even prioritized which projects go on which burner when (For more info on my Burner Model for Time and Project Management and other things I teach, email me at

We have A LOT of content to write, as well as a long list of marketing pieces to put into place, but we are super excited to create new things that bring value and inspiration to people while helping directly fund the EB research at U of M.  We give away half of every dollar we make out of this new venture.  That's a cool feeling, because there are only a small handful of companies willing to set up their business model like that.  Tom's Shoes "One For One" model has really raised the bar for marrying capitalism and philanthropy.  They really have set a new standard to say that the almighty quarterly return is NOT the most important reason to be in business.  It gives me hope that more companies will embrace this model, given how wildly successful their company as a start-up became!  20,000+ pairs sold in their first year is nothing to sneeze at!

With our first product, Bella's Blessings, I make $10 profit on an online sale, and keeps 2.80 of that for royalty taxes, which leaves me with $7.20 net profit per book sold.  I take $3.60 of that and it now goes to PUCK.  I used to give between 20-50% on every book to a different charity per month, but I just wasn't selling enough books to cut a check for even $100 at the end of the month.  So, now, we are just aligning/partnering with PUCK exclusively and we have upped our donation level to even 50% until we have seen this research through.  Angelique is blessed with a great job with great benefits, so we are lucky to be able to give away so much.

Sorry to hit you with so much business stuff tonight; it's just that I'm SUPER excited about all the things I have to work on for the new year!  As we continue to roll out new products, services, and information, please consider how much information and inspiration we provide for free on this blog.  Please, in return,  support our cause in addition to donating to PUCK by purchasing our products when they become available.  We want to contribute something directly to people and not just ask them for money.  The straight up non-profit always asking for money doesn't appeal to us.  We want to go out into the marketplace and create GREAT products that are full of quality and value and that really contribute something to the world.

So, the easy way to support us this holiday season, in addition to asking people to donate to PUCK in lieu of a Christmas present, is to buy a couple of copies of Bella's Blessings: a Humble Story of Providence for people on your list you know would be inspired by it.  Books are always a good gift, and since you already know most of our story, and the way I write, you won't be taking a chance on a new book.  If you like the blog, you'll LOVE the book, I promise.

By the way, can I just tell you how lucky I am to get to work with Angelique?  You know what a powerhouse she is by watching her at the memorials deliver her Eulogies.  I get to work with that woman now on all kinds of exciting new projects!  Till now, I have worked on my other company, Sonic Divinity Music Therapy Services, and The Divine Planet mostly on my own. Well, no longer.  4 hours into our tiny room brainstorm today, I commented how much I was enjoying myself with her, and she felt the same way about me!   One couple that I grew up near back home worked together, and I always had great respect for their business and personal relationship; they were true role models for me.

Other news...

Some alien has invaded my body.  He took my body running this morning.


Tomorrow, he told me he has something extra special in mind, and he GUARANTEES no one reading the blog will be able to guess what it is... ;-)  stay tuned!

Ali had a BLAST with Grandma and Grandpa.  She spent the night at their house last night and all day today so we could do our company work and stay focused.  She is amazing.  We played dress up tonight as a royal family, and Ali dressed mommy and daddy!  Too cute.  Then, we came downstairs and hung out in and around her castle.  Man, the girl can draw better and better every day!  Check out her artwork this evening!

I had coffee with a dear friend of mine on Wednesday who recently went and saw Eddie Money in concert.  They got a shirt and had Eddie sign it.  They told Eddie all about Bella and us because he is involved with raising money for kids with AIDS.  He signed the shirt to us Ringgolds!  Pretty cool!

We did pretty well again today with the grief.  I only got hit hard once.  We were watching TV and a commercial for a Leap Frog brand product came on, and it reminded me of the little birthday cake they make.  I remember playing with it with Bella while waiting for her first Hickman to be placed, then again in her room on 5D before it all went bad.  Those were the last memories of my daughter as a interactive powerhouse; after she was intubated, it was like she was 'asleep.'  So, while it's only been about 6 weeks since her death, it feels like so much longer since I really 'saw her.'  Anyway, when that commercial came on, I was doing laundry, and I literally stood frozen as the wave came, crashed, twirled me around inside, and finally dissipated.  I am grateful that this only happened once today, and yet, at another time this evening, I dealt with that guilt that comes from hopping along feeling pretty good.  It was after the wave hit, and I was feeling better, realizing that for the most part today, I felt pretty good.  Immediately, I heard that little voice say, "Oh man, are you over her already?"  What a catch 22 it is!  I don't want to feel hit over the head all day, but I don't exactly want to feel 'good' either.  I know that sounds weird, but I also know it probably makes sense to all of you since you are grieving as well, and you have probably grieved someone else as well and went through that weird transition phase.

Anyway, the days keep rolling past, the condo still feels like a hollow shell, but we keep the warmth in it through loving the heck out of one another.  Our family bond is so tight.

Hope you are all enjoying this weekend.  Cheers to my sister Tracy who is in England visiting old friends!  Have a Guinness for me!

God night.

Thursday, November 25, 2010

November 25: Happy Thanksgiving!


Well, First Big Holiday without Bella out of the way!  YAY!  We actually did pretty well!  We did something different than last year.  Last year was our first Thanksgiving dinner as just our family of four.  Man, am I glad we did that since it was the only one we got to experience together just like that.  This year, we went to Ali and Bella's Great Grandparents' house.  We've been there before for Thanksgiving and/or Christmas dinner, but not in a few years.  It was nice to be back.  Mickie and Morris were great hosts, and we have really enjoyed reconnecting with them since coming back to CA (we stayed with them two weeks ago for the LA film premiere and conference).

The times that hit hard today were simply when I would walk by a picture of Bella.  The picture would literally stop me in my tracks.  At one point, I stopped and started having a conversation out loud with Bella.  I was alone in our bedroom, and felt safe talking out loud, and you know what?  It felt great!  Ang has started journaling to Bella, so in our own ways, each of us is staying connected and in communication with Bella.  That feels so good to do.

Aside from that, mommy made pumpkin pancakes for breakfast, and Ali and mommy made meringue cookies for dessert tonight.  I did a little vacuuming and a little song writing, and I hit the trails on my mountain bike for the first time in easily a year!  Man was that fun!  Man am I out of shape!  LOL.  Ali also got a little time on her bike today as well!  I will be either running, biking, or doing leg exercises of some sort at least 6 days a week for the next 3 weeks to prepare for our Christmas trip...

We are meeting my sister Tracy and her entire family (all the way from Spain) at my mom's place outside of Durango Colorado.  I can't wait!  Tracy has two darling sons and a great husband who smokes me at guitar all day long.  We are all going to go skiing together on one day, and that day will check off one of my life's list items... to ski out west.  I grew up in Southwestern CT and the skiing in the east - particularly in CT, MA, and lower NY, is pretty modest to say the least.  Skiing in northern NY, VT and NH is pretty cool, but from what I've heard, it just doesn't compare.  So fun abounds in 4 weeks!  I need to be ready!

To finish, I know we all reflect on what we are thankful for today, like it's a special occasion.  This is how I pray daily.  My prayer list is a gratitude list, not a request list.  This is what works for me, and it leaves me starting and ending the day present to what is good and right in the world, and has me start and end each and every day in a state of thanksgiving.  It's like I book end my day in gratitude, and that has been a great way to keep my life and the events in it in perspective.

Now, having blurted all that out, I give special thanks to God for granting us the wonder-kids:  Ali and Bella.  What a treat.  I thank GOD for my wife Angelique.  I give thanks for "The Three Fs:"  In no particular order, they are:


If you have those, you can celebrate Thanksgiving 365 days a year.

What challenge are you thankful for this year?

God night.

This picture is from the Lone Thanksgiving we spent together at home 1 year ago.

Wednesday, November 24, 2010

November 24: It's good to have "a guy"...


We had a pipe spring a leak under the sink in Ang's vanity yesterday and really SOAK the carpet upstairs yesterday.  After hours of literally blow-drying the sub-flooring and carpet, I got the carpet under control.  I had to shut off the water the the condo to stop the leak in the meantime which meant no showers and each toilet had 1 flush left in it... so make it count! LOL.  This morning, I called my good friend Grant to ask him how to get at the perpetrating pipe, and he eventually recommended "his guy" to me.  Gene, the plumber, called me a few minutes later and we agreed on a time for him to come.  He came, he saw, he fixed the pipe.  Love having "a guy!"  Thanks, Grant!

Met with an old friend for coffee this morning, and Ang and I met another good friend for lunch.  I had two interesting coaching calls today as well.  The first call was my client's last call of the year.  The second was my new client's first call with me!  I love coaching.  It is so humbling that people allow me to get in "under the hood" to help optimize their engine, so to speak.  My mantra is that I see you bigger and better than you see yourself, and I have the power and passion to get you in touch with that image.  I don't mess around either; I call people on their sh*t when no one else will (I know - that sounds so unlike me - HA!).  We need people in our lives to call us on the things we are blind to, otherwise we'll keep repeating the same behaviors that keep us stuck with results we don't want.  Since we are the starring role of our own lives, it is impossible to see ourselves outside of ourselves the way another can.  No matter what, we are always looking at ourselves through our own experience, so we never see exactly what others see.  We can build our ability for self reflection and awareness, but if we really want to break through areas of life that aren't working as well as we'd like, it happens A LOT QUICKER in communication with another!  I am so grateful people trust me to be "the other."

In other news...

We went to dinner tonight at a restaurant that we used to go to with Bella.  Ali asked mommy if we used to go there with Bella and she said yes.  Ali asked where did she used to sit?  Mommy explained she used to sit in a highchair at the end of the table.

I have no memory of that right now.

That was really sad.  I couldn't remember.  Memory is such a gift, since it is the last thread of connection.  If we didn't have memory, pictures and video would be weird because we would wonder who that stranger was with us!  I know, that sounds silly, but really, for me it is the last tether.  Plus, when the brain recalls a vivid memory, the same part of the brain activates as when the experience first happened.  That is fascinating, because to the brain, there is no difference between the experience and the memory of the experience.  That's why it is easy to start feeling the same physical and emotional energy in your body when you vividly recall a past event.

So, I was bummed I couldn't recall that experience.  I wanted to feel Bella through my memory, but my memory failed me, and I couldn't feel the connection in the moment.  I know that I am operating on 1/2 to 1/4 the cognitive capability right now.  In addition, because the grief we are experiencing is so complex, (I feel like it borders on PTSD... spend 99 days in the ICU only to lose your baby girl and tell me you don't experience a little PTSD), I think my brain is 3/4 shut down in order to simply survive.  If it opened itself fully to the brutal pain of the experience, I think it would crash.  Heck, at least once a day, it feels like my brain is literally going to pop.  Angelique gets headaches every night, and we sleep like the dead.

Lastly, there were a couple of comments last night that I need to speak to.  Of course I'd prefer to see my kids grow up.  I think the pitfall is expecting to see them grow up.  Expectation is just resentment waiting to happen.  After all, what if it doesn't happen?  I began grieving the loss of all those 'normal' life experiences with Bella within days of her birth.  I remember walking through IKEA shortly after she was born, and an 18 year old girl was shopping with her parents for stuff for her dorm.  WHACK.  It hit me right then and there that it was likely that I wouldn't get to have that experience with Bella.  I didn't go looking for it, it just hit me like a ton of bricks.  I have been grieving the loss of those experiences the whole way, because I don't think anyone plans on losing their kids.  It just happens to some of us, and not to others.  Like I said, maybe it's a good problem to have that no one is used to infant mortality anymore, but that doesn't mean it doesn't happen every day of every week of every year.  My point is to resist that very natural part of nature leads to unnecessary suffering.  The myth of permanence is all-pervasive in our western culture, but not everywhere.  To the degree that we can be committed - but not attached - to anything we hold important... this to me is mastery and the path to minimal suffering.  Again, pain is a signal, but suffering is the story WE MAKE UP about the signal.  We collapse the two every day.  Heck, it's easy to do!  We choose the meaning of every signal or event we face; we are meaning making machines.  So if this is the case, I do my best to not choose to suffer.

If happiness is a choice (meaning free from circumstances), so is suffering.  Most of us live by the rules that happiness and suffering are the result of a set of outside events.  In that model we decide, based on 'reasons', to be happy or to suffer.

What if, just what if, happiness and suffering are truly independent?  Ever met someone who seems happy no matter what they are going through in life?  I have.  Ever met someone who can complain on a dime no matter what they are going through in life?  I have.  This makes me question the validity of the "happiness/suffering is based on circumstances" model, and as a student of philosophy, this is how we come upon new thought, by deconstructing old thought.

Bottom line?  Suffering doesn't contribute anything to me healing or operating in the moment.  It just makes things worse for me.  The practice of choosing happiness causes happiness.  It's just that, however, a practice.  Sometimes I do it well, sometimes I don't.  

It's like faith.  Sometimes I can turn things over to God easily, and sometimes I just wrestle for control of the wheel, as if I am in control at all.  To me, faith is a choice as well.  It is not based on circumstances.  If God is all powerful enough to have created the universe and everything in it, my guess is that he understands things that are far beyond my capacity to understand.  Faith for me is just trusting that God understands more than I can possibly, AND since he is all loving, what occurs like tragedy or injustice has a deeper meaning or opportunity inside it than we can see on the surface.  Inside of this model, things don't have to go the way I want or expect or even hope they should for me to have faith.  I can choose faith in the face of any event, including the death of my child, because my faith is not dependent upon events or circumstances.  If God is willing to give me unconditional love, I'm willing to give him unconditional faith.  Actually, I don't even know if he actually does love unconditionally, who knows?  I can still choose faith no matter what, and again, the bottom line is that in choosing that faith, it helps me operate - to get out of bed every morning, and to turn off my brain at night.  It inspires me to play huge games like raising a million dollars to fins a cure for EB.  To me, faith is a valuable asset that brings out the best in me.

Who or what do you truly choose in your life regardless of circumsatnces?

God night.

Tuesday, November 23, 2010

November 23: The Roller Coaster Continues...


Wow.  What an amazing ride just a day can be.  Ang and I are just exhausted by attempting to operate at "normal speed."  Holy cow!  I dropped Ali off at daycare, had a 10 am meeting, and an 11:30 lunch meeting.  Then it was to the bank to do a little banking and the cleaners and I was home by 2:30.

Wiped out.

I walked over to my desk and just couldn't even think.  I curled up on the couch and thought I'd distract myself with a little Arsenal action.  I had a match saved on the DVR, and it had been over a month since I had seen my boys play, so I thought that would cheer me up.  Well, turns out they played today as well, and I caught that game live.  Not only did they lose 0-2 to a team they beat 6-0 at home last time they faced them, they lost two of their players to injury, one of which is their star captain.  It was probably the worst game Arsenal has played yet, even worse than Sunday when they blew a 2 goal lead in the second half to their North London rivals, Tottenham Hotpsur, and lost 2-3.  (What a great name btw - Tottenham Hotspur - even if they are our rivals, I still am totally entertained by their name... hey Mariana or Lolly... find out what a hotspur is for me, will ya?)

Well, by the end of that miserable game, I was not feeling better, I was feeling worse!  I actually began to have a bit of a panic attack.  The house started closing in around me in its gigantic quiet and emptiness.  I just couldn't bear the sound of silence any longer.  Every activity around the house feels hollow without Bella.  I started feeling really helpless and hopeless.

Then, it happend.

God stepped in.

A letter from a retired doctor I met in MN was sitting in my inbox.  He had written earlier in the day to ask how things were going; he didn't know.  I filled him in and then watched the soccer game.  His response was the letter I am referring to.  It was one of the two most hope-filled letters I have received yet.  As the blog is 99% female commenters and my professional field is 89% female, coupled with the fact that my dad died in 1997, I've been missing some male leadership/mentorship in my life.  He urged me to call him, and I did, and we had the most extraordinary conversation.  I immediately felt clearer, stronger, and had a giant infusion of HOPE in that moment.

Life is moment by moment, and it is important to remember that whatever is in this moment - bliss, joy, boredom, suffering, tragedy - will surely pass.  God is constantly conspiring to support us in everything we do.  It is our job to put on our "God-Goggles" so we can recognize his blessings.  They are all around.  As we allow this moment to just be, and grant it space to move on past, it allows new realms of possibility to arise (there is some good ol' Landmark Education lingo for you!), and if we invite God into those new realms, he is all too happy to oblige us.  The first step is to just BE with what already is.  This is so hard for us.  Here is why I think I am overall doing pretty well about "the death of my child."


Most people in our current culture subscribe to a truth that goes something like this: " No one should have to outlive their children."


In nature, who gets eaten by the predators?  The children, the sick, and the elderly.

A century ago, infant and child mortality was a fact of life.  You had ten kids hoping five would survive to adulthood.  Moms died in delivery all the time.  Thanks to breakthroughs in western medicine (antibiotics, the c-section, vaccines, NICU, respirator, etc...) we have all but eliminated infant and child mortality from our society.  Yet, it permeates every developing culture on the planet today.

Are we so short of memory?

We have so removed ourselves from the cycle of life and death that the first time we told Ali that the chickens she saw at the farm are what her breaded chicken nuggets were made of, she just looked at us and started LAUGHING at us!  It was the most ridiculous thing she had ever heard.  It is as if our ability to deal with death has atrophied from lack of use.  Perhaps this is a good problem to have, but I see us as an entire culture that is now not only out of shape in life, but out of shape over death.

There is work to be done.

Transformation doesn't happen by itself.

Will you join me?

Please forward my blog onto your social networks (again) and encourage your circle to come to our circle.  We are a growing community that work hard at becoming the authors of our own life in new ways with each new day.

What new 'aha' did you experience today in your journey?

One last story.  I was catching up with a guy I haven't talked to much since I left for MN, and he was telling me how his Porsche was totaled in a car accident not too long ago.  He lamented that his biggest problem now is that he doesn't know what to buy, as he'd have to wait 6 months to get the same model... audis are too this, BMW's are too that... maybe he'll sell his other truck and get a land rover...

I told him that my company THE DIVINE PLANET is seeking to write bigger and bigger checks to charity.  I started the company last year with a double digit donation.  Then, over the summer, I raised some $$ and wrote a 3 digit check.  Next week, I'll be writing a 4 digit check.  I told him that he should buy last year's model and cut me a check for $10,000.00 so I can write a 5 digit check to find a cure for Bella's disease before the year is out.

Think he's gonna be able to piss and moan over his new car choices without thinking of me and Bella particularly?  He LOVED Bella.

Seed planted.

God night.

P.S.  Blogger won't let me upload any photos tonight for some reason.  Sorry.  In the meantime, go to the video section and watch the new video.  You.will.die.laughing.

Monday, November 22, 2010

November 22: Back in our offices...


Well, it is back to the grindstone in Ang's and my offices today.  Ali is off to daycare again.  She has reconnected with daycare.  At first, she said she was bored, but she and her boyfriend Conner have reignited their old flame (sorry MN boys) for each other and all is good at Joanie's now.

I don't mind being back in my office.  I designed it myself, so I really like working in its space.  Today, I spent most of the day on the computer developing relationships over social media, scheduling calls, sending out emails, and trying to build my coaching business.  I coach and consult for other music therapists and non-music therapists alike, and it brings me great joy.  I am looking to expand my client base right now due to the fact that I just simply can't jump back into providing direct music therapy too much right now.

At conference, there was an awesome book on medical music therapy in the hospital setting (right up my alley!).  I opened it, and hit a page on chemotherapy.  It had a gigantic box filled with side effects and complications from chemo.  I saw the word MUCOSITIS and I shuddered.  Bella's airway swelled shut due to mucositis.  I didn't realize just how raw the whole thing still is.

Anyhow, one of the reasons I lead free workshops at conference is to attract young music therapists who are keen on optimizing their learning curve.  However, I have begun taking on others in more of a life coach model as well.  Again, getting to work with someone to get them in touch with their best self is soooo rewarding.  I really need some new clients to help resume some income making, so I am asking God and the universe to SEND THEM IN!  :)

New piece of rough hit tonight.  I realized I haven't participated in Ali's bedtime routine since we've come home.  Why?  Her bedroom used to be Bella's as well, and every time I walk in her room, I get overwhelmed.  I didn't notice till today.  I ran upstairs with ALi to play after her bath, and when we ran into her room, it hit me across the head so hard, the room began to spin on me.  I immediately sat down, and hunkered down through the pain, but it was rough.  I also felt bad as a dad because I have completely avoided their room, and in doing so, I'm avoiding Ali.  That's a drag for her, but I just can't go in that room right now.  It is too much for me.

I wish I was as strong as Angelique.

Okay, okay, enough with the pity party.  What else... hmmm.... oh yeah, in case you haven't noticed, I changed the name of the blog to Bella's Blessings.  It seems more appropriate at this point.

Tomorrow, I meet with UC Irvine Medical Center to strategize about funding for the new year for our fledgling music therapy program there.  Please say a prayer that God presents a pathway toward funding the program in the new year as we currently run out of funds Jan. 1.

Okay, sorry this wasn't the most chipper post ever.  I am really fatigued and I am struggling to enact yesterday's revelation.  Easier said than done!

Thank you for staying with us.  We rely on your prayers, thoughts, and comments.  Thank you.

God night.

Sunday, November 21, 2010

November 21: And on the Seventh Day...

One of the many beautiful sculptures in downtown Cleveland...


... even daddy rested!  LOL.

Man, the last two weeks really caught up with me pretty much as soon as Angelique picked me up from the  airport last night.  It was like I knew I had crossed the proverbial finish line, and my body finally got to let me know how tired it was.  Guess I had the mute button on!  LOL.

This guitar is 10 feet tall in the mall in downtown Cleveland...

Angelique was an angel today; she let me sleep in for as long as I wanted!  Well, I think it was 10:00 am when she sent in Ali to do her bidding and wake me up technically.  I must have slept 12 hours.  I am so grateful.  I really needed it.

Unfortunately the grief caught up with me today, too.  My heart hurt so much at one point today that it literally felt like heart burn.  At several points throughout the day, I would actually jerk from the pain... not unlike a shiver from the cold, or when you are slipping off to sleep.  It was like the pain was electrocuting my entire upper body.  It would start in my heart and shoot out through my arms, up my neck, and down into my hips.

Not fun.

I curled back up in bed with Ali to watch Toy Story after a little while downstairs eating and playing.  Ali also wanted to watch 101 Dalmations, and we started that one as well, but I finally managed to get back out of bed and drag myself into the shower about 2ish.

We went grocery shopping and stopped in Lowes for a couple of home improvement items.  Groceries were procured at Whole Foods, thanks to a generous gift card from 2 of my fellow board members from the regional music therapy association.  It was rough there.  When Bella was born, we went on a strict vegan, alkyline diet to try to cleanse Ang's breast milk of as much excess sugar as possible, since sugar is poison to the body, particularly to the skin.  We started shopping at this same Whole Foods, and hadn't been back in months.  It brought back a lot of sad feelings.  I don't know if I really knew how terrified I was for Bella after she was born at the time.  Now, looking back, I can honestly say that while I was courageous for her, I was also terrified.  I was so scared of EB.  It seemed like the most diabolical disease I had never heard of.  Now, when I go somewhere I used to go with Bella, the feelings of fear and terror pop up, and I am startled by how intense those feelings were, and still are.  I am really grateful to go through these experiences, because if I didn't do it now, those buried feelings would lie dormant, ready to pop up at the next available chance.  At least now I can meet them head on, face them, and process them, as painful as it may be.

They were just putting up their lights in the square yesterday morning...

I have to tell you about the latest revelation I had today.  I have been dwelling in "Happiness is a choice regardless of circumstances" for this past month, and it has been extremely helpful for me.  Well, I saw today that I was in a lot of pain, and that I was really crabby.  So, I looked at the two.. the pain and the crabbiness.  What I saw was that I told myself, "The pain makes me crabby."  Then it hit me.

I make me crabby.

I make me crabby, and blame it on the pain.

This was very profound, because in that moment, I stopped being crabby.  I still had the pain, but the pain was no longer a requisite for crabbiness.

If happiness is choice, regardless of circumstances, then so is crabbiness.  Two sides of the same coin.

I hadn't explored the other side of the coin till today, and found under investigation that if I truly believe that events don't cause outcomes, our response does, and that we can choose our response to any event life throws at us, then I am choosing to be crabby just as much as I am choosing to be happy.

Here's the kicker... I tell myself "it's understandable," and after all, who would argue?  It's reasonable, right?

I told my wife this revelation, and she basically looked at me like she was happy I finally figured it out.  Glad Ang is so patient with me.  See, Angelique already knew all this and practices this daily.  I TOLD YOU that she is the stronger of the two of us.  In fact, the entire reason I began exploring this distinction was that she is in the same pain I am, but she chooses not to be crabby, and in the presence of that level of mastery, I HAD to figure out why I was letting it work me over so much today.

Angelique inspires me to be the best version of myself I can be every day.  The best part?  She simply does it by example.  I have to upgrade my game just to keep up with her, without her ever asking me to.  Man, am I blessed or what?

Key point:  While I look closely at whether I am being "too hard on myself" or something to that effect, I find that the study of philosophy has always led me to knew levels of choice in my life.  As Socrates said, "the unexamined life is not worth living."  That is true for me, at least.  Many people live in blissful ignorance, and that is their option.  I am just too interested in seeing just how high a vibration I can get myself to within this lifetime.

New topic.

If you are at all like Ang and I, you have found great joy in doing more and more Christmas shopping online.  It is simply THE most efficient way to purchase items for the holidays.  Don't think any less about what gifts to get anyone, just spend less time trying to find them at the mall.  Save your gas, save your time, SAVE YOUR SANITY!  Shop online this year, and see just how easy it is.

If you choose to do this, please use as the portal to your holiday shopping.  Why?  You can pick PUCK as your charity of choice, and every time you purchase anything through that site, donates to PUCK!  PLUS, if you use it as your home page, PUCK can get $$ every time you log on and every time you click on something on the page!

This one is a no-brainer.  If you use the internet, you have a starting point... your home page.  You open your browser, it opens your homepage, and you then go off to wherever else you go.  Why not let PUCK earn a few cents every time you browse?  You do it anyway, might as well contribute a little along the way!

Remember, enough snowflakes cause an avalanche.

God night.