February 27, 2011: Really Sore...

Heaveno!

Man, what a day!  I got to watch my Arsenal in the final minute of the Carling Cup give up what could be the worst blunder since Bill Buckner's error in the 1986 world series and lose.  Great start.  Then, I spent the rest of the day stripping varnish.  Even better!  My body was so sore from the 11 hours logged in yesterday that I pooped out after 6 hours today.  I am not a fan of stripping varnish.  Yuk.  You either have to sand it or chemically peel it.  Sanding it would not be good for the rest of the house so the chemical peel seemed like the least worst option.  Good times!



After making the above pictured scones, Angelique and Ali spent the day shopping for groceries and other fabulous home improvements so as to avoid the fumes.  So, I caught up with my iPod.  I'm listening to 'The Law of Success' by Napoleon Hill for probably the third time now.  It is great to listen to on many fronts, but one in particular is how language evolves over time.  The book was published in 1925, and boy, our language has definitely evolved since then.  Many of the same success principles discussed last weekend at the 3 day intensive I attended come right from this textbook.  It is a daunting read; I first purchased the paper book, but it would be a tall order for any student in any upper division class to read it in one semester, so I purchased the audio version as well, and that has worked much better for me.  www.audible.com has a great membership service where for $14.95 a month, you get 1 credit toward any book in their library.  What's great is that it doesn't matter how many hours the audio is, it's still just one credit.  GREAT for the car.   I stopped listening to commercial radio and talk radio for good, and now just either listen to the occasional music CD, or audiobook, or, quite often, silence.

This week coming up I will spend 3 days in San Diego building a new internet marketing campaign to help replace the income I've lost over the past two years.  I am really behind on my student loan and SEP IRA.  I can't wait to start getting current on both of those again.  My challenge is that I feel too spread out between too many projects.  This is nothing new.  I do this to myself all the time.  Let me ask you, what do you think I should lead with?

1)  a course on how to overcome challenges as a parent and spouse
2)  my coaching program
3)  my "Start Out Successful" Program for new grads starting their own business in a helping industry

The last one I don't think I've shared much about, as it is outside the scope of this blog.  I lead training at all the music therapy conferences on the business aspects of owning your own business as we don't get much training in this arena in our music therapy degree.  I have designed different modules that when put together, create a 12-month home study program to help new professionals put in place the fundamentals of a successful business.

Anyhow, I'm curious to hear your thoughts.  You all know me pretty well by now!

God night.

February 26, 2011: Sore...

Heaveno!

Mommy and Ali got pedicures today, and I got to repaint the bathroom, change the hardware in the room, as replace the faucet.  Good times!  I'm a pro at painting, but plumbing.... whoah, that's another story.  I am as handy as I need to be, and not an ounce more.  The only reason I'm a painting ninja is because I ran a painting company one summer back in college.  I spent 4 hours under my sink tonight!  I'm pretty sure it's not supposed to take that long, and I'm also pretty sure I have no idea how someone removes and replaces a faucet without any help!  Thank goodness Ang and Ali were back when I undertook the faucet!  I couldn't have gotten it done on my own.

Now, it's time for tylenol!

P.S.  Arsenal plays in the Carling Cup final in the morning 11 am EST in case anyone wants to cheer 'em on with me!

God night.

February 25, 2011: Tangled

Heaveno!

Mommy got a hall pass to have a girls night out, so daddy took Ali to see Tangled at long last!  THANK GOD it was still at the dollar theaters!  I didn't check before I blurted out, "Hey, Ali, wanna go see Tangled?"  When I went on Movietickets.com to search for a showing, my first cause for alarm was seeing that it was released on November 24!  Really?  I swear it wasn't that long ago... till I remember the Rapunzel doll Ali got for CHRISTMAS...  wow, time FLIES!

Anyhow, we made the movie just in time, and man was it AWESOME!  I mean, it was really, really good!  I was really impressed.  Maximus stole the show in my opinion!  Seriously, it had Ali riveted the whole time, and wasn't too scary compared to some past Disney flicks.

The big tearjerker scene for me was the lighting of the lanterns.  I the waterworks let loose on me for that one.  As the lanterns floated away, I saw Bella's butterflies flying away after her CA memorial, and I head Ali say, "Goodbye, Bella!"  Ali was sitting in my lap at this point of the movie, much the same way Bella used to, and it was a bittersweet moment.  Sweet that we still have Ali, bitter that we no longer have Bella.

Anyhow, much fun was had.  Ang is still out enjoying herself, so I can't report how that went.  Hope it went well, honey, you deserve it!

God night.

February 24, 2011: Ho hum

Heaveno!

This is me.  Going through the motions.  Start writing.  Get the fingers walking.  Hmmm... tell you about our trip to Lowe's to by bathroom stuff for our super bathroom makeovers?  OH BOY!  The funny part of that trip was running into an Australian rugby player, now 60, in the paint aisle and lamenting together our physical inability to play the game any longer.  He was wearing a really cool jersey with a number one on it.  In soccer, that's usually the goal keeper and in rugby, the position is actually called the Hooker.

So, in my charming way, I say to him, "With that jersey on, you're either a 'keeper or a hooker!"

To which he smiles brightly, and in a mild Aussie accents says, "Actually, I'm a number 8!"

That's another position in rugby.  So we begin our talks about the great game we both used to play, and why it hasn't caught on here in America.  For those of you that don't know, I played rugby in college and was selected to play on a regional collegiate team that traveled to France and Switzerland to play in the summer of 1991.  Wow.  That's depressing.  I never realized till right now that it was 20 years ago.

Great.

So, Ali's karate is coming along nicely.  Super cute.  She really enjoys her school as well.  She's a happy kid.  We are so blessed.  Every single day, she just amazes and cracks us up.  Mommy and daddy go to karate together with Ali and watch her beam with excitement.  She is just so happy.  It's nice to have so much happiness.  I think it is safe to say we've all earned it.

Have you watched the news article about Charlie yet?  Check it out, it is SO inspiring!

Have you been to Jonah's EB Auction yet?  Check THAT out as well!

God night.

February 23, 2011: Boring by comparison...

Heaveno!

Wow, thank you all for your supportive comments.  This blog experience... it's really quite something, isn't it?  I sometimes just marvel at the world-wide conversation we are having, and relationship we have built!  For those of you who are regular commenters, thank you for doing so.  For those of you that lurk, thank you for simply being here.  I know I wish more people would comment every day; heck, you're thinking your comments anyway, why not just write them?  I hope it isn't that you are all thinking bad things and just keeping it to yourselves!  If that were the case, thank you for at least doing that!  LOL.  While that may be the case for a few people, (you can't please everyone and you shouldn't try), I bet many of you read every day, have a thought, keep it inside, and then move on.  Maybe just once in a while (like at least monthly if not weekly) you share your thoughts with the community?

See, there I go again, never satisfied... just couldn't leave it alone... I guess I'll never change, why am I asking anyone else to?  :P  I'm just playin'.

Anyhow, how do I top the past two posts?  You can't hit a home run every time you're at bat.  I feel like I don't have anything profound to share today.  It was a good day in the office; had a profoundly deep coaching call with a client today; I am so honored to be a coach.  To walk beside someone through their own muck, and to assist them in seeing past their blind spots... doesn't matter the area of life.  To assist and be of service like that... that's a heavenly good way to earn a living.  I am so grateful and thankful to earn money by contributing to others.  One of the things I struggled with at the seminar was paying attention during the investment portions.  It is important to understand and leverage investment vehicles if you really want to be financially free, but earning money off my money just doesn't give me the same warm fuzzies...

However, if I want to accomplish all that is on my radar, it best suits me to get over that.  The greater vision is more important.  I dream of getting to a point through investments where the dividends to one portfolio could furnish bandages to families in need.  THAT would be WORTH paying attention to investments, wouldn't it?  For me, money gives you the chance to bless TWICE... you can bless others while earning money, THEN you can bless a completely different group with the money you earned blessing the first group!  That is the possibility of money.

That's all well and good, but I think the most important and relevant info I can share today is about Patrice Williams' EB Auction!  You should go see all the wonderful things she is auctioning off over the next 4 days.  All the money goes to DebRA, so it's for a good cause!  If you see something you like, BID ON IT!  We are all in this TOGETHER, folks.  We are an unwilling band of brothers and sisters, but some of us are taking EB on over and above just treating it.  That, believe me, is plenty.  I am in awe of how much work Patrice puts in ON TOP OF having a sweet little (almost) 2 year old with EB.  She is a MACHINE!  Rock on, Patrice.  You are leading the way to a cure as well, and I am proud to be by your side.  PRETTY PLEASE, go on over and bid on some items for the auction!

God night.

February 22, 2011: Disneyland on a Tuesday night? Why not!

Heaveno!

Well, when you live 15 minutes from the happiest place on earth, and your step-brother is staying at the Disney Grand California Hotel for only a day and a half of meetings, and after karate, the three of you find yourself only 10 minutes from that hotel, what else ya gonna do?  Then, once you're there, it's not like you're gonna pass up dinner and a few rides, right?

Disneyland is fun, but karate is FUNNY.  It is absolutely too cute.

Okay, so let me finish my story from last night...

So, I was standing at my seat in among 700 other people who also had just been through an INTENSE 3-day (9am-11pm, 9am-11pm, 8am-7pm) personal growth seminar on money.  I had just shared my insight and realization that I was afraid of money, and that I was no longer afraid.  I also shared with the group my story and commitment to raising $3 million to fund the cure to my daughter's disease.  That's when the standing ovation occurred.  I wasn't ready for it, and when you share the most intimate, important thing in your life, and the reaction is 700 people on their feet cheering for you... well, it was simply overwhelming.  I could feel Bella smiling down at me, with my dad right next to her.  I started crying and could barely take it all in.

When the crowd sat down, the leader of the money seminar (who is well on his way to a net worth of $50 million currently so he can tackle large scale international peace proliferation), asked me, "What action steps can you take tomorrow?"  I told him, "I have a list of people I have met; I'm going to start asking hem for money!"  The crowd went wild, the seminar leader smiled and I nodded in acknowledgement for letting me share, turned to return the mic, and sat down.

Then, it hit me.

I had the mic, told my story, AND FORGOT TO TELL ABOUT TEXTING BELLA TO DONATE $5!!!!!!

It was such an overwhelmingly powerful moment, that I forgot ALL about my cards!  I started to admonish myself, but it didn't last for more than a split second.  The moment my mind started wondering if I missed my big chance, my heart and spirit told me I hadn't.  Further, it would have been totally inauthentic to bring it up in the moment as my fear has been around asking major donors to contribute, not every day folks.  Knowing how vital major gift donors are to this puzzle coming together quickly, that really is what I had my attention on and liberation with, so I relaxed.

Then, I thought to myself, "Forget tomorrow, if Kieron announces one more break before the end of this event, I'm walking right up to him and asking HIM if the Minnesota Medical Foundation can contact HIM!"  That was it.  I had a plan.  So for a few minutes, he talked, I wrote, "Text BELLA to 50555 to donate $5 to help fund the cure to the worst childhood disease you've never heard of:  Epidermolysis Bullosa," on as many more business cards as I could.

Sure enough, after a few minutes I hear, "Now we're gonna take a short break..."

This was it.  This was my chance.  If I chickened out here, everything I said on the mic would have been bullsh*t.  Up I went with purpose.  I walked up to the side of the stage where his table of stuff was, and waited for the first person to stop talking.  Then, it was my turn...

"First, my mentor is Christine Stevens and she says hi and she just thinks the world of you."

Christine is a trainer for one of the Peak Potential courses, and she knows Kieron pretty well.  This was the time to drop her name to immediately make a connection.  Upon hearing her voice, Kieron's face just lit up.  Rapport established.

"Number 2:  I am working with a team of ROCKSTAR women at the Minnesota Medical Foundation to help fund this cure.  May I have them contact you to share how you might be able to be a part of it all?"

[gulp - SHUT UP, smile, and keep eye contact]

"Sure."  With that, Kieron writes his personal email address down and hands it to me.

"Thank you!  Third, we just set up this mobile giving campaign and I'd like to know if either I or you could announce this to the crowd?"  With this, Kieron kind of looks away and says, "It's really against our policy."

I replied, "It's okay, I was just practicing asking."  ;-)

Then, he just paused looking at the back of my business card.  He taps it with his finger and says, "This is really SMART."  Then, we start talking a little more about it, and I tell him that my friend Joe Polish has been helping me get this campaign running, and he smiles and says, "I know Joe.  Is he helping you?  He's a good guy."  Then he finishes, "I'll ask the back [of the room staff] and see what I can do, but I can't promise anything."

I jump across the room kissing the yellow post-it in my hand.

We come back from break, and Kieron just keeps going with the format.  :-(  It's all good, it was a long shot.  Some seminars are loose, but this one is run really tight, and it just didn't seem like it would be appropriate, given how detailed and structured the format was.  At this point, however, I am feeling incredibly light and relieved.  I did my part.  It was out of my hands.  I watched him play with his phone, go to the back of the room, talk to some people, all while we were filling out surveys. Then, he comes back up on stage, gives some more instructions, and while the room is busy filling out something else, I see he has my business card in his hand...

...and then it happened....

"Remember the gentleman, Tim, who is raising $3 million dollars to ind a cure to the disease that killed his daughter?  Well, if you want to help out, you can text BELLA to 50555 to donate $5."

People's heads immediately perked up.  "What was that number again?"  someone asked.

"five zero triple five," he repeated.  I could tell part of him wanted to get it over with as fast as he could, but obviously part of him wanted to help out!  People started coming up to me in my section and asking for my card.  I saw people texting, while others needed help with it.

Then, one lady walked up and handed me a $5 bill saying, "This is all I got right now, but I want you to have it."  Then, another woman hands to me from five rows away and a bunch of helpers, a $100 check made out to cash.  A minute later, a gentleman comes up, hands me five $100 bills with his and his wife's address saying, "Just send us a receipt and we'll send you more."

Chance favors the prepared and IN ACTION mind.

At the end of the night, I did a video testimonial for the seminar, and the two staffers acknowledged me for being the highlight of the night.  Then one proceeds to tell me how unbelievably lucky I am.  "NO ONE - I mean NO ONE gets their stuff pitched by the course leader!  It is a STRICT policy we have, but Kieron obviously was so moved by who you were being that he made that exception.  You gotta get how special that is."

I had the experience of actually being fearless when it comes to money, and I still have that experience.  If you have any hang ups or stories about money, take this course and you will distinguish how and when YOU made up YOUR story about money, and you will get ample opportunities to SMASH that story into bits!  I feel so grateful, so lucky, but also so confident, because I know that I stepped up to the plate, free from my baggage, and in that space, infectious partnership showed up!

Gratitude.  Also a gift you give others AND yourself.  What a good feeling to have.

God night.

P.S.  In other news, here is an AMAZING update on the latest patient in the U of M study:

http://bit.ly/hGI9Be

February 21, 2011: Back to it...

Heaveno!

I really shouldn't wait till after 10pm to blog.  There is so much to share and all I want to do is go to bed.

Alright.  Let's see if i can write this.  I attended a 3 day-intensive called the Millionaire Mind Intensive.  If any of you are familiar with the Landmark Forum.  Just think Landmark Forum with 700 people, 10 times the energy, and awesome music throughout... specifically for money.

If anyone reading this feels like they have ANY loss of power and freedom with their finances and money, I can't recommend this course enough.  Money has been an area of my life where I have struggled and struggled for YEARS, and now I have realized why.

When I was around 21, my parents split up after 32 years.  I will never forget the day that I watched my sad drive away from my childhood home in a rental car foreclosed, bankrupt, and divorced at 65.  He was riving his rental car with all his worldly possessions from Connecticut out to Arizona to live on my brother's couch in his student housing.  Then, I turned around as my sister's boyfriend at the time closed the latch on the u-Haul.  The family belongings were going to a friend's garage to be stored before the bank was due to arrive that afternoon to change the locks on our home.

When I looked back, my dad was gone.  In that moment, I said to myself, "Money is dangerous.  It is NOT safe.  You could lose EVERYTHING because of money."  After all, it looked as if my dad did.
So, I became a money avoider.  I figured that the less I had, the less I could screw up, and the less danger I'd be in.  It's amazing how the brain creates such powerful neuro-associations.

Well, last night, I broke through my fear of money once and for all.  When I did, I experienced feeling Bella and my daddy looking down at me from heaven, absolutely BEAMING.  They have wanted nothing else than for me to finally break through this last frontier of 'stuckness.'  It doesn't serve me or anyone else in the world for me  to continue to avoid money.  The very primitive part of my brain actually equated money with danger.  Crazy, huh?

I shared this breakthrough on the mic and I told audience what I was doing regarding funding the cure to EB at the U of M.  With that, the entire ballroom rose to its feet in a standing ovation.  I'll tell you what happened next tomorrow....

God night.

February 20, 2011: Game On

Heaveno!

Well, it was a busy weekend for us.  First of all, DEEP thanks to our friend, Kelli, Kelly for hosting a fundraiser this weekend.  She hosted a Zumba-thon.  Thanks go out to our other friends Jennifer and Treisa for helping out, as well as Joanne, one of Kelli's  Zumba instructor colleagues.  It was a success!  Much fun was had by all who danced the afternoon away.  Angelique spoke a little, and provided some more info for the participants.

I attended an 3 day event as well and have lots to share, but we're wiped out, so we'll see you tomorrow!

February 17: Let the Campaign Begin!

Heaveno!

First off, thank all you peeps out there that wrote such beautiful comments about your relationship to prayer.  For anyone reading this post, I highly suggest going back and reading the comment thread.  It paints a very touching, personal, humble, and VALUABLE picture of the possibility of prayer.  In addition to reading what/how you pray, what I read was what prayer makes available to you... a warm, intimate, safe relationship with another whom you can release your fears and joys to equally.  mmmm.... that is simply delicious.  I use that sentence very purposefully because it is like you described the greatest cup of hot chocolate.  Warming and soothing, enriching from the inside out!  Seriously, I heard a very close relationship that takes place within.  Really good stuff.  One of the great refrains from "In the Garden" comes to mind...

and He walks with me 
and He talks with me
and He tells me I am His own
and the joy we share
as we tarry there
none other shall ever know.


The above doesn't have to happen in the garden, it happens is your hearts.  I am touched, warmed, and somewhat healed by your comments.  Thank you.  Thank you.  Thank you.

***

New Topic.

Ready?

Grab your cell phone.

Seriously.

Got it?

Text BELLA to 50555 to donate $5 to the UofM EB Research!

Type YES to the confirmation text.

DONE!

How easy was that?

Last weekend, I mentioned about mobile giving.  Well, once again, my good buddy Joe Polish proved why he is the most connected guy I know.  He called me Sunday morning with none other than Mike Koenigs on three way.  Mike is one of the top master internet marketers and mobile marketers out there.  Mike tells me on the call about mGive.  I email our team at the Minnesota Medical Foundation about it, and within 4 days, we figured out how to activate an account they were getting ready to do away with!

Thanks to the entire team at CCRF and MMF that put their heads together to keep up with my ideas!  My theory was that I will be attending Harv Ecker's Millionaire Mind Intensive in LA this weekend for free.  There will probably be over 1,000 people there.  We are working on getting me 10 minutes on stage to share Bella's story at which time I will have them all stand up and hold their cell phones up like lighters in the 80's while I sing a portion of "Bella's Song."  Then, with cell phones in hand, I will ask them to text BELLA to 50555 to make a $5 donation in her memory, or go to ebhope.com to contribute even more.  I am going to point ebhope.com at the online donation page that the DONATE TO PUCK button goes to.

There's a chance I won't get this opportunity, but chance favors the prepared mind.  At Joe's 1st LA event, Sarah Palin was supposed to speak, but she got detained in D.C.  That morning, I did a full soundcheck with the sound team and video team fully knowing that we may not even get the chance, but if we did, I wanted us to be ready.  We raised $6,400, got a professional HD video on YouTube for free that has received 734 views to date, and made countless other connections for further development... all from being ready.

Who knows?  One of Harv's speakers might get delayed on the runway due to weather or something...

God night.

P.S. Pretty pretty PRETTY please text/email/facebook the following message to your social network RIGHT NOW...  :-) Please?

"Please text BELLA to 50555 to donate $5 to help fund the cure to a horrible childhood disease called Epidermolysis Bullosa.  I have been touched by a little girl named Bella who gave her life to find a cure. Please help me honor her in this simple but meaningful fashion.  Thank you."

If you prefer twitter:

"Text BELLA to 50555 to donate $5 to help fund the cure to the worst childhood disease you've never heard of: Epidermolysis Bullosa or EB."

February 16, 2011: Square One

Heaveno!

Check in:  Body - hurts less today.  Did legs.  It'll hurt most on Friday.  Tomorrow is treadmill.  Looking forward to the treadmill.  I LOVE the treadmill.  Seriously.

Ang is doing well.  Her major projects at work are cooling off right now, and pretty soon, she'll transition back to her permanent position.

Ali rules the universe.  We went out for chinese tonight, and she ate sizzling rice soup!  She is such a little grownup.  Enjoy the karate outfit, although I'm afraid to wash it; one hot dry and it might be too small!



Tonight, I'm going deep.

I had a really sad moment as I tucked in Ali tonight.  It was quiet.  No singing, no story, but what I noticed the most was...

no prayer.

I thought, "we used to pray, didn't we?  What was that prayer?"

Then, another shot of electricity in the chest.

Ali and I used to say together, "Dear God, thank you for making me (Ali) bigger, and Bella better, Amen."

On my knees while Ang was asleep with Bella in her belly, I used to say, "Thank you God for the healthy baby in my wife's belly," as I stared through the covers at my unborn child.

On my knees while Bella slept in her isolette in the NICU, tears streamed down my face as I begged and bargained with God that she have the EB Simplex that kids often grow out of by 2.

In my car on I-15 in Idaho and Montana, I asked God for not just a good outcome, but since I was asking, the best outcome out of any kid in the study so far.

On the park bench in Minneapolis, upon hearing, "I'm gonna take her home," I asked God, "Really?  All of this... you lead us here with enough signs that I fill a book about it... all to just take her?"

In the most sincere humility I can muster, after all this, I'm pretty sure I don't know the first thing about prayer.

I know about faith.  My faith is that I believe that God created every thing, and as such is a part of every thing and every situation.  If that is the case, all I have to do is look for God in any moment and there God is.  I believe therefore that I get to choose my response to any event, any circumstance, and in doing so, I affect the outcome, AND God has surrounded me with infinite ways to affect that outcome.  It's just up to me to choose.

What I freely admit I no longer know anything about is prayer.

What is prayer?  Is it a request?  Is it a thank you?  When I used to work in hospice, I didn't pray to God to save anyone's life.  I prayed for comfort along their journey from life to afterlife, and I prayed for comfort for their family.  I felt pretty grounded in that type of prayer.  For those of you that have been here since Bella's birth, you may recall me asking this same question.  I asked whether or not it is right to prayer for a miracle.  Why is my agenda more important than anyone else's, and if God has a divine plan, than why is my agenda more important than God's?  If God has a plan, how could I even fathom a sliver of it?

The day God told me he was taking Bella home, as I was walking to the hospital, I saw ants walking in the crack of the sidewalk.  God asked, "Can those ants see what you can see?"

"No."  I replied.

"But are they in the same reality?"

"Yes.  They are in my reality, even though I - as I know myself - may not exist the same way in theirs."

"Exactly."

Try to wrap your brain around how a human occurs to an ant.  Do they notice we shaved?  Can they tell we failed a chemistry test?  We are giants in their world.  They simply don't have the capacity we have.  They have different capacities, but even though we are in the "same world at the same time,"  our worlds are very different.

So it is with humans and God.

I loved the connection I felt to God all those mornings on the park bench in Minnesota.  That's what kept me on track and grounded.  I knew that every morning, I had to walk into that hospital, quietly sing in Bella's ear her good morning song from my heart, then instantaneously turn my heart off, and switch on my clinician brain, walk out into rounds with 10-12 professionals, and not only keep up, but make sure nothing slipped through the cracks of the endless but necessary rotations and teams that it took to keep Bella alive every single day.  I needed that talk with God every morning.  I know I wouldn't have been able to operate as powerfully on Bella's behalf without that partnership.

My faith is first and foremost pragmatic.  It empowers me to live at a higher performance capacity than without it.  It allows me to still function AT ALL in the face of this journey.  It's like how I talked about physical strength last night.  Spiritual strength works in its own unique distinct way.

How can I have faith and have such a breakdown in prayer?  Because my faith isn't perfect, and I'm not perfect.  I have breakdowns in areas of life every. single. day.  However, I work at not making myself wrong for them.

Seriously?  I want to make someone/something wrong for my record on prayer.  I guess I thought that some prayers get answered and some don't.  Well, I feel like in that context, I'm in a prayer slump.  I'm like 0 for my last 4 big ones.  It's left me scratching my head.  I am currently resigned to being God's steward.  Whatever he gives me, I'll work with and transform into something better/more beautiful.  However, I have retired from asking for him to give me or not give me any particulars anymore.  That doesn't seem to be the ticket.

Maybe I'm just unlucky.  Maybe I'm about to go 4 for 4 on prayer requests if I just try again.

Maybe that's not what prayer is about at all.  Maybe prayer is more about the process than the product.

I'm 38, raised in the church, left and pursued multiple different spiritual paths, return in my early 30's, and feel like I'm 4 again.  I thought performing a musical instrument was life long learning.  This spiritual journey is more than that.

What is prayer to you?

God night.

February 15, 2011: Ups and Downs...

Heaveno!

First off, thanks for the love from the comments.  They made me feel good; I really appreciate it.

Well, the ups today HAS to be Ali's first karate class!  Hilarious.  I can't IMAGINE teaching karate to a pack of 4-5 year olds.  Wow.  Bless THAT guy's heart.  He didn't seem too excited about it either, frankly. LOL.  Ali was the only girl in her class, and I have no doubt she is going to kick some serious ass.  HA!  I couldn't resist... braggin' and all.  Just kiddin'.  Actually, it will be interesting to see if her girlie side or her competitive side show up.  At least she pays attention!  I'll be sure to get a picture in her outfit next time for the blog.
















The downs, well, I did better today overall with the downs for the most part.  Tonight, I started rehearsing for my studio session in April.  I sang and played guitar for the first time in what seemed like FOREVER.  I have been working on a new tune for quite a while trying to get all the guitar parts nicely connected, and I think I'm there, but as I started singing tonight, well, that was a little tough, because...

As I was looking through my music folder on my computer, a song titled, TOGETHER, was there.

... and I didn't recognize it.

I wrote it about grieving for the loss of my dad, and have used it in grief and loss groups several times.  As I tried to sing it, I couldn't.  First, because I was so sad I FORGOT about my own song.  But second, well, you read the lyrics and imagine me trying to sing these.  P.S. It was the first time I have tried to play this song since Bella died...

Together                                      by Tim Ringgold

As I sit and wonder where you’ve gone

I think of places and things that we’ve done…together

A million laughs a thousand tears

We faced it all through the years…together

Together is where we’ll be

Forever in memory

I honor you now and always

For now you have been set free

Together is where we’ll be

For all time in my memory

We’ve been through so much

And though we can’t touch

We’ll be together eternally

God has called you home while I stay

To roam through this journey my way…feeling alone

But I know you are with me

I feel you there when I’m in need…needing someone

Together is where we’ll stand

Walking with hand in hand

Alone but together

For now and forever

We’ll be together eternally

Together is where we’ll be

For all time in my memory

We’ve been through so much

And though we can’t touch

We’ll be together eternally

We’ll be together eternally

Yeah, I couldn't make it through, either.

I was telling Ang today that I feel like I have a bit of PTSD.  The memories that get triggered by random events are so powerful; it's like they electrocute my brain.  Sometimes, I feel the electricity shoot through my brain and down through my arms to my fingers.  Other times, I feel it shoot from either my heart up to my brain, or vice versa.  

Sucks.

Now the next line is totally gonna sound like a man thing to say, but I wish I were stronger.  So much stronger.  The pain and weakness I feel physically... I hate it.  I am so happy I am back in the gym again and back on track with reclaiming my physical strength, flexibility, and endurance.  I just want to BURY  these feelings of weakness.  

Yet, I know that is not the pathway to peace and healing.  The exercise is good for my body and my self esteem.  Those are important pieces of the equation.  I used to keep fit so that my body was a support system to my spirit and mind.  I could accomplish a lot largely because I had the health and vitality to pull off what my mind and spirit could conjure up.  Since losing that physical edge, I feel like I've lost some of my focus, peace, and confidence as well.  Seriously.  I know that now that I am back in a gym 5 days a week doing yoga, lifting weights, and running, my body will return slowly to a trimmer, firmer, stronger, more grounded, and flexible temple for my spirit and my mind.  

Treat your body like a temple.  Isn't that what scripture says?  I like that imagery.  Just the RESPECT it has me give my body when I think of it that way.. really great.

On that note, I am going to take care of my body by shutting up and getting some sleep.

God night.

February 14, 2011: Happy Valentines Day!

Heaveno!

When I was young, I used to play in the woods after school all year round.  In the spring, summer, and fall, I can remember running full speed through the woods for what ever reason.  I would be at full sprint when WHAM, my foot would get snagged by a root or vine and within a split second, I am flat on my face eating leaves.  One second I am at full speed, and the next, stopped dead in my tracks.

This is the grief journey for me.  Incidentally, in case you haven't noticed, I never stopped sprinting. :-)  I don't go for a job, I go for a RUN.  That is how I have always done life.  This is a perfect metaphor for my days.  Today, I went RUNNING through the morning, and WHAM, flat on my face after a phone call at lunch.  2 hours later, I slither off my couch to the coffee pot to infuse some energy back into me for the home stretch.

It can level me at any moment.  I cry more over losing Bella now than ever before.  The shock and numb has worn off and the sheer gaping wound in my heart just bleeds and bleeds and bleeds.  I hate the pain.  I rarely use that word, hate.  More accurately, I am sick and tired of the pain.  While there are millions of others who have had to endure pain in life for longer than me, I've never considered myself (nor has anyone else LOL) a "tough guy."  21 months of pain is quite enough.  I'd like it to be over.

***

On a happier note, if you haven't heard, baby Anton in Russia has found himself a set of parents!  Please go to their blog and share some much deserved love and support.  I am overwhelmed by the capacity of love and strength in their hearts to seek out a child with EB.  Absolutely inspirational.  I bitch about my pain, and they are seeking it out.  I am filled with humility.

Sorry I'm not my usual, upbeat self; the weight of EB has me down right now.  I'll get up, I always do and always will.  It's not whether you get knocked down in life, it's whether you get back up... AND it helps to have learned something while on your arse... :-o

God night.

Caught in the act of pulling off her "handages..."

February 13, 2011: Still Too Tired to Blog...

Heaveno!

Happy Valentine's Day if you are reading this Monday!  I left this up over the weekend, since most people don't check in as much over the weekend.  I want each and every (hopefully) blog reader to watch this video.  I think it has a lot of value and use for anybody.  We just added a new campaign to our arsenal to reach $3 million.  I will write more about it in my Monday night post.

Life is God.  Awesome.  I meant to type Life is Good.  God just keeps sneaking into my salutations!



God night.

February 10, 2011: Back on the treadmill...

Heaveno!

Well, day 2 back in the gym.  Feels GREAT.  Remember how full of excitement I was a the beginning of the year to hit the Transformation horse?  Well, I fell hard off the wagon.  I realized the easiest thing to do is simply replicate what has worked best in the past.  Pure and simple!  Why re-invent the wheel?  I know that I need to work out before work, otherwise, it won't happen, and I know that I need to work out in a gym.  That's all there is to it.  It's so funny; now that I am physically back in a gym, the gear has already begun to click.  I like a routine.  Structure is good for me.

Anyhow, Ang worked from home today, so we walked over to pick up Ali from pre-school together.  Ali lit up live a firecracker when we both walked in!  Ali's teacher immediately walked up to us to say how well she is adjusting, and how amazing her vocabulary is!  "She is just like, "Here I am!"" was how Mrs. Frazer described Ali's confidence.  Nothing makes a parent prouder than when a teacher beams, right?  LOVE it.  Ali is so excited also because she is going to the same school daddy went to!  I took one class during my degree at this community college, so Ali thinks we've gone to the same school now.  It is too cute.  It works for me; I LOVE having her imprint COLLEGE in her mind at such an early age!

Thanks for the continued questions about the trial!   Really great stuff!  Let me address some of them for you:

What happens after BMT?  Well, BMT unfortunately never really ends.  LOL.  What I mean by that is that there is follow up care that may be as infrequent as annually if all goes well and no side effects are present.  Really, in this case, there is a study to monitor the changes in skin 100 days after transplant, so that is why there is a lid on this study.  The patients still need to come back for biopsies every year.  The whole initial concept is that the Collagen VII will continue to grow into wounded areas over time, so the more wounds that continue, the more healing with working collagen.

Here's the thing though:  the transplant as it exists now does not "Cure" anyone of EB.  It simply ameliorates the disease into a functional, treatable condition, more like dominant dystrophic EB.  The skin gets better, but there are always a couple of wounds.  This brings up another important point.  The older the patient, the more likely that they have bacterial infections that have left permanent colonies in the tissue, almost like TB.  So, when the body gets stressed or depleted, they colony can flare up or break out.  This is most likely why the real problem wounds for many kids NEVER heal... because of the permanent residents in the tissue preventing the growth and healing to occur.  THIS is another reason why we need the funding to get to the next generation of BMT as well as systemic gene therapy.

Kidney issues are not uncommon for BMT, but they are more common in EB.  Again, prior to U of M studying EB, it was primarily studied by dermatologists, not nephrologists.  There seems to be some sort of inflammation that occurs internally at a much greater level with EB, and again, the docs aren't sold that collagen VII only resides in the skin.

Yes, we were able to see dramatic differences in Bella's skin after transplant.  See Aug 2 and Aug 5 posts for some good before and after pictures.

Last, the doctors change the protocol roughly every 7 kids.  The doctors continue to do everything they can for EJ, McKenzie, and Sam.  The one thing all us parents in the study knew from the get go was that there were no promises made, and we all rolled the dice.  The thing is, it's not like it was a walk in the park for any of these kids before hand.  BMT is so complex, and frankly, still so barbaric.  You just pray your child sneaks through, but it's like 10 kids running through a mine field; you KNOW that a certain number of them aren't gonna make it to the other side.  I remember one EB parent offering their condolences to me after Bella died, and I honestly wasn't sure who should be consoling who.  Their child still had EB, was still suffering from it, and was most likely still going to die from it.  At least Bella was in no pain.

The thing that sometimes works at me is that Bella was truly a happy girl most of the time.  She didn't have any persistent, nasty infections.  Her bath time was still relatively peaceful, as she didn't have a lot of nasty wounds that just wouldn't heal... yet.  We figured, she's as healthy as an ox, and at only 1 years old, if we go through this now, she'll have virtually no memory of it, and we'll treat it before it gets worse, which is the only direction the arrow moves with recessive dystrophic EB.  Sometimes I wonder, what if we didn't go through with it?  Would we still have her?  Wouldn't THAT have been better?

God night.

February 9, 2011: Back in the saddle...

Heaveno!

Well, it was Ali's first day of pre-school, and daddy's first day with my own new rhythm.  Ali practically RAN all the way to school.  It was so cute.  She is so unafraid of new social situations, it is just awesome to watch.  I am so proud of that little girl.  That is such a gift to have.

With Ali's new school hours, I started new hours in my office as well.  I can walk to a neighborhood gym from her school, so I have gone back to my gym-rat origins and given up the not-working living room workouts.  I wasn't enjoying it and not effective at all in maintaining a workout regimen.  Now, I start in the office a little later, but only after taking care of my self first.  I work late at night every night in my office anyway, so I don't feel bad about starting the day at 10; come 10 pm, I am almost always still on my computer.

I also quit an hour earlier because of preschool hours.  Today, Ali and I walked to the gym to fill out come paperwork, then went to the bank to deposit some checks.  I am excited to show her the bank as she has some seed money from the tooth fairy and grandma.  I told her that she could spend it, but if she saved it, we (or a bank) would actually pay her money in return for not spending it.  She thought that was a pretty great idea, so the incentive for saving hopefully took its first roots in her brain.

Thanks for all the questions over the past two nights.  Here are a few more quick answers to questions...

The age range for the study is I believe under 18.  They still only have had 15 patients in the study, which by research numbers is nothing.  It is too soon to generalize any specifics about what the sweet spot might be for best age.  I would appear anecdotally that 4-6 would be the optimal age range for this population, but again, that is based on far too few to hold any real weight.

Some insurance companies (like ours - Anthem BC/BS) will pay for the clinical trial, some won't.  It's up to the individual insurance provider.  The U has someone dedicated to working with insurance companies to help and assist with coverage.

Transplant doesn't require a sibling donor.  An unrelated donor's cod blood can work as well.

Yes, unfortunately, there is a point of no return for EB kids.  Transplant can't undo what's already been done in regards to webbing of hands.

Last night, there were a few rather negative questions that I'd like to answer.  It is clear the reader has a unfavorable opinion of the study, which is fine, but I think there is a piece missing.

This is research.

So far, the results - meaning that stem cells are leaving the blood supply and turning themselves into skin cells for the first time in medical history - are worthy enough for publication in the New England Journal.  The spectrum of success is as broad as it could possibly be... from amazing success with several patients now, to tragic failure with several patients, to side effects as bad as EB, to graft failure.  This treatment in its current form is a part of a process.  It was never meant to be a cure or the end.  It has always been merely a stepping stone.

Yes, the doctors are SURE this is the best route to follow.  No other treatment to date has produced the systematic improvement on a patient like we have witnessed with Keric or Payton or Charlie.  This treats the whole body, inside and out, which is necessary for RDEB And JEB kids.  Again, this isn't the finish line at all.  This is their least elegant solution, but it is where they need to begin to learn enough to progress.  The docs would have never understood this mystery of Collagen VII being expressed elsewhere in the body unless they took this head on.  On a personal note, Ang and I KNEW what the risks were; we also remember that 4 EB children died in the U.S. last December without going through BMT.  The potential to die with or without trying BMT is a daily issue.

Please make no mistake: the doctors are EXTREMELY up front about how intense and dangerous bone marrow transplant is.  They encourage patients and their families to avoid it if possible.  That is why they are hoping for additional research funds to move past bone marrow transplant as we know it as the sole systemic treatment option.  There is no way to predict outcomes on something that has never been done before.  Like I said, no one has looked at EB as a systemic disease.  Up till now, all research and treatment has been localized.  This is how it was with leukemia for a long time.  Of course, none of the kids survived when Leukemia was treated this way.  Until they asked a different question about how to treat childhood leukemia, there was no success, and no hope.  Now, not only is there great hope for kids with leukemia, but every treatment option available for adult cancer today (which claims 1 in 3 adults) resulted from that ONE breakthrough when the doctors began treating leukemia as a systemic disease, not a localized one.

Alright, I hope to carve out a few more tomorrow.  Please keep them coming!

God night.

February 8, 2011: Back to CA...

Heaveno!

Well, we're back in CA.  It was so cold when we were getting on the plane that they had to de-ice the wings... and it was sunny out.  Never had that happen before.  Beautiful day... on the inside!

We got back to CA this afternoon, and honestly, it felt weird, again.

It felt like we left behind Bella a second time somehow.  When we visited the Ronald McDonald House, all our strollers and car seats were still in the atrium.  Just seeing Bella's car seat just sitting there empty, then leaving it, again.  Now, that was Friday, but it really snuck up and hit me again today.  Yeah, it's nice to be back in pleasant temperatures, but that emptiness... just felt it again.

Ali starts her first day of her new pre-school tomorrow, and we again adjust to our 'new normal.'  The grief is actually hardest in this house.  That probably makes sense.  This was Bella's stomping ground.  I remember the day we came home from the NICU with her.  I remember the day we came home from the PICU without her.  While I know that parents all over the world have felt this same feeling, my hope is that  as few of you out there ever have to experience it.  This is why we are so consumed with funding the docs in MN.  All I can say is, as I read your questions, I got so excited to share the answers.  I'm not going to get into all of them tonight.  The idea is that we create a FAQ page here so that as many people have as much information related to the study as possible.  Okay, maybe I'll spill a little.

In short, the protocol is changing for the youngest patients.  EB patients displayed a very different reaction to chemotherapy than any other disease population in the transplant milieu.  There is something else at work; Dr. Tolar speculates that perhaps the Collagen VII gene is expressed somewhere else in the body that we haven't yet studied besides the skin.  See, now that immunologists and transplanters are looking at EB, they are looking through their lens.  The only lens EB has been studied through till now is essentially the dermatology lens.

I need to say that a different way.

What you see is based on the lens (or context in this case) you see through.  A dermatologist won't think to ask the same questions as an immunologist and vice versa.  So, having the team at the U of M thinking about solving EB, well, they ask a completely fresh set of questions about the pathology of EB.  THIS is why the U of M is breaking the new ground (as usual being the pioneers that they are) in EB.

Also, YES, the treatment breakthroughs for EB will generalize out to other diseases.  This is how all adult cancer treatment arose... from the treatment of childhood leukemia.  The immediate areas of impact include autoimmune diseases of the skin, burns, and aging of the skin.

There are also two completely new concepts for treatment that involve using the patient's own stem cells, NOT a donors.  This would dramatically change the danger / success ratio for transplant.  They still want to identify the key stem cell in donor derived transplant and pursue essentially three paths to the finish line simultaneously.  However, without the funds to do it, it is all just ideas on paper.

Alright.  Man, it just makes me feel better just talking about the work up there.  It gives me so much hope.  There is more to share, but not right now.  I remember finding out about the prognosis for a life of EB, and I don't want any couple to feel the feeling I felt that day.  There is hope.  For the countless parents and children till now who had none, I honor you by making sure this possibility we stand in front of doesn't fall to the wayside.

Thank all of you for still sticking with us in this journey to a cure.  There is no turning back now, baby!  NO turning back.

God night.

P.S.  Anyone you know that hasn't read the blog, and you think would want to be part of a cure to a childhood disease?  Invite them to come follow the blog as well!  Thanks!

February 7, 2011: Last day in the tundra...

Heaveno!

Man, we don't leave till tomorrow and we already miss this place.  Minnesota is so awesome.  We feel so on-purpose here.  The types of meetings and conversations we have been involved in with MMF, CCRF, PUCK, Dr. Wagner, and Dr. Tolar have been nothing short of SPECTACULAR.  We are so impressed with everything they are doing here.  We feel so at home.  We learned more about Drs. Wagner and Tolar this trip by getting to spend 2+ hours with each over meals.  We never got that much uninterrupted time with either as patients, because you usually don't spend that much time with your doctor.  Plus, when Bella was a patient, the conversation was very 'in the trenches' as it pertained 99% just to her condition at the moment.  Now, we are working strategically as opposed to tactically with the two and in this context, we have really gotten a deeper glimpse into each man.

They are geniuses.

One of the things we want to hear from you all is what questions and / or concerns do you have about the EB program here at the U?  We want to get your questions answered and your concerns handled.  We feel like there has been some amount of message out there, but tell us what still is a mystery / doesn't quite make sense / etc.  If you have a question, chances are someone else does as well.  The questions aren't to be directed to us as parents.  What questions do you have about the program; that is specifically what we are looking for right now.

Thank you.  Please.  Comment.  Wanna support us?  Here's how.  Comment.  The more feedback we get, the more comprehensive we will make the new video we are creating that will act as a main and MAJOR fundraising campaign.  The more questions you have, the more we can answer in the video.

On a personal note, it was soooooooooooo good to see all our friends up here.  I feel like we got to spend some time with every single couple we connected with over the summer who live here.  THAT is no easy task, as any of you will attest to when you travel home for the holidays for example.  The only thing we didn't accomplish was a meal at PUNCH pizza.  I am sad about this.  However, I'd rather we had the time we had with PEOPLE over PIZZA.  I know.  I said it.  I chose people over pizza.  Pretty big of me, huh?  Seriously though, thank you to all our Minnesota friends for accommodating our schedule and making it all work so we could all see you.  We miss you dearly already.  Somebody get married or something in, say, June or something.  Wait, now that Jeremy and Renee are hitched, you're ALL married!  Rats.  Well, we'll figure something out!

We had a wonderful dinner at Logan and Erin's tonight.  Erin watched Ali for us today while we had our meetings at the University. Then, while we were standing at the cross walk to get our car, I look to my right and who is standing there but Logan, on his way to the bus stop to take the bus home from work!  That is the second time I have run into Logan on a street corner near campus!  It was good timing for him as it was pretty chilly today, and he has a bit of a walk from his bus stop to his home, so we hijacked him since we were driving to his house anyway!  Our other friends, Mark and Lisa and their two girls, came over and we had a big ol' reunion.  It felt so good to be all back together again.  The kids had the best time, and Ali lost her first tooth right in the middle of it all!  Sure enough, her two front bottom adult teeth are coming in, and her tooth that has been loose for a few weeks now popped out!  What's the going rate at the tooth fairy?

God night.

February 6, 2011: SuperBowl Sunday...

Heaveno!

Awesome day of fun today with multiple sets of friends.  First stop, Amanda and Bryce's wonderful home out in Albertsville, MN.  It was so nice to see them again!  Our friends, Dayna and Brent, who are also their in-laws and our dear friends besides were also in attendance.  We had a wonderful time catching up with them.  Both families are adorable and we can't come back to see them again!  Thanks to Amanda as well for writing her New Year's Letter to family and friends, and in the letter, spending 80% of the letter sharing Bella's story, asking for $5 and including a self addressed, stamped envelope!  She has been overwhelmed with how generous her friends and family are.  This coming from a full time college student who also works part time and has a 10 month old daughter at home.  Amanda, you are AMAZING!





Next, it was on to our friends Deb and Spencer's house to meet up with them and their friends and ours, Bob and Laurie LeMoine.  You may remember we met Deba nd Spencer at Minnehaha Falls over the summer and have been good friends since.  Much fun was had kicking aback and watching the big game, and watching the kids play.





Okay, I am keeping this short because again I am wiped out.

Tomorrow is a BIG day with various university peeps for more strategy planning, followed by dinner at our friends Logan and Erin Spector's along with our friends the Floras, who you may remember sang at Bella's MN memorial.  Really looking forward to all of it!

God night.