Sunday, July 31, 2011

July 31, 2011: Giving It Up For Good!


It's official.  My 39th birthday is exactly one month from today, and I am giving it up for good.  When I first heard about giving up your birthday for a cause, I liked it.  So, yesterday Angelique asked me what I wanted to get for my birthday.  In one way, I can't get what I want (Bella back), and in another way, I am already getting far more than I could ask for (Julian's arrival), so the idea of being given anything other than that just seems trivial this year.

Here's how it works:  for anyone who is so inclined to do so, instead of getting me anything at all, make a donation to my Chipin widget on my blog.  Doesn't matter how big or small, either.  The money you donate will go (after chipin takes its 3%... we're working on how to get that covered as well) to PUCK, which means it will go to Drs. Wagner and Tolar at the U. of Minnesota to continue to finance their ground-breaking research in using stem cell transplants to treat EB.

I don't know if I've told you this, maybe it's just been a while...

Bella lived to Day +101 of her transplant.  The study was for 100 days.  She completed the study.  She held out.  Why?  Because on or within a day or two of Day +100, Dr. Tolar does another skin biopsy to see how much donor skin has grown in since day +60.  By holding out to Day +101, and dying then, Dr. Tolar got to do her biopsy during her autopsy...

What this means I cannot understate, and this might make those who are squeamish a little uneasy...

He was able to biopsy her throat.

You can't biopsy a living child with EB's throat, but as we know, EB affects the mouth, throat, esophagus, GI tract, the whole 9 yards.

Bella was growing Ali's skin in her throat... up to 24% of the skin was Ali's.

30% gets you functional skin.

There is no other treatment out there, folks, that is literally healing the kids from the inside out, and the GI issues are EVERY BIT a serious problem for an EB patient as any other wound.

THIS is what is unique about Minnesota.  THIS is why I believe they deserve as much funding as every other center has received to treat EB solely on the outside.  Other EB research centers have received tens of MILLIONS of dollars in EB research funding, and while that research is important, NONE of it has produced such a quantum leap in EB treatment.  Minnesota deserves their chance.

That is why I am giving up my birthday, for good.  Would you join in giving U of M their chance?  Just the cost of a card will do, if that's all you can contribute at this time.  Every dollar counts.  Thank you from the bottom of my heart, yet again, for stepping up and standing by our side in this journey!


In other news, if you haven't followed the roller coaster and miracle that has been baby Tripp's last two weeks, his amazing super-mom Courtney posted an update this morning that pretty much made it feel like I WAS in church today!  She posted two pictures that will curl your toes, so be warned, but they illustrate the DRAMATIC turn-a-round Tripp has experienced!  PLEASE GO see for yourself and make sure to send them some love with your comments!  CLICK HERE to check out her update.  


Last but not least, yesterday, we had the pleasure of being photographed by Jennifer Edling!  In addition to being Daylon's wonder-mom, Jennifer (as I'm sure you've noticed on her blog) is an awesome photographer!  She is launching a photography business and asked us if she could take some pregnancy photographs to build her portfolio... um, OKAY!

We went to Irvine Park nearby us and had a wonderful time, although it was a little warm!  We are blessed to have BOTH Jennifer AND Sara Cooper in our lives, chronicling this amazing journey we are on.  Sara is going to do delivery day hospital photos of the J-man, so stay tuned for more amazing pics!  Here are some of our favorites from yesterday, and I'll close with those.

We love you, we honor you, we thank you for being here with us still.

God night.

Thursday, July 28, 2011

This one goes to Eleven...


Quick... what movie is that from?  :-P

Every time I feel like I know the limits of...

1)  how much God loves me
2)  how good life can be
3)  how funny Ali and Ang are
4)  how fulfilling my work is
5)  how lucky we are to be having an EB free baby in 3 and a half weeks...

... God lightly puts me in my place by SMASHING those limits into little pieces!

He did it again today.

I was invited to sit in on the Palliative Care Team rounds this morning at the hospital.  I am currently seeing one of their patients and having great success using music to dramatically decrease this person's pain, anxiety, and in particular, nausea.  Well, I was given a royal introduction and treated with the utmost respect and appreciation from the doctor, the fellow, the resident, the student, the nurse, the chaplain, and both social workers.  It was like I died and went to "inter-disciplinary team heaven."


Those who are called to palliative care have something in them - a certain type of compassion - that allows them to be with people in their toughest times, and in their last times.  I felt it in me when my dad died in hospice.  I knew that if I could use my God-given musical skills to be the soundtrack of someone's transformation from life to afterlife, well, that would be simply the highest use of my gifts on this planet.  THAT is what set the wheels of music therapy in motion in me way back in 1997.  It would take another 11 years to open my doors as SONIC DIVINITY Music Therapy Services, but those doors are open, and I get the privilege and honor of sitting in a room this morning with eight others who have found their calling on the same road.  What an extraordinary group to spend an hour with.  I was welcomed with open arms to attend any rounds I want.  What an honor to serve their patients!  To use music to heal, to silence pain with melody... I don't work.  My mantra is, I get paid to play and pray.

Life is good.

One of my patients today had a bible in the room, and whenever I see a bible in the room, I always ask if the patient would like to hear some hymns.  The patient agreed, and I played a series of hymns, including  "Here I am, Lord."  I was so moved by the lyrics today, I could barely get through the song without crying.  Here's why...

I've stopped going to church.

Yup.  There, I said it.  It's my big secret.  I just haven't been able to go back.  We've tried it a couple of times, and it just drops off the radar.  I make up reasons why, and all the while, we miss out on that wonderful feeling of coming together with a community of believers.  I've been carrying some buried guilt about this, and today, as I sang this song, I really started to feel bad.  In the verses, God is asking "whom shall I send to minister and bear witness?" to which the chorus replies, "Here I am, Lord."  I started that old guilt trip on myself, when God essentially put his finger on my lips to say SHHH... and he said,

"Tim, it's 2 o'clock on a Thursday afternoon, look outside.  See the traffic buzzing down the freeway?  Now see where you are.  You are EXACTLY where I want you."

"I guess I am here, Lord, you're right."

Even now, writing this, thoughts of "... but I still feel bad about not..."  sneak in.

Again.... SHHH...

"There are plenty to minister music to the church on Sunday, but you were the only music therapist in UCI today."

What can we all take away from this?

Go wherever God deploys you, not to where you think you should go.  If he sends you to a soup kitchen, go.  To a homeless shelter, go.  If he instructs you to give the bum on the corner your last 5 dollar bill, do it.  Assist in a classroom at your kid's school... think that isn't his will being done?  Think again.  God appreciates us all coming together on Sunday, so long as we are deploying all week out into the field to be his hands on the ground.  God is in every good thing, every good deed, every good thought, every good action, every smile, every eye contact, every "Hello," every generous compliment, every selfless act, AND every act of self care.  Don't miss that last one.  God doesn't need martyrs.  Wanna care for God's people?  Are YOU not one of them?  Make sure to start with you.  Care for God's people by caring for your SELF.

God night.

Tuesday, July 26, 2011

July 26, 2011: Good busy...


First off, thank you for the very supportive comments since the last post on Sunday night.  I was a little nervous sharing that stuff, and I really appreciate and took to heart what many of you wrote.  The only other example in life I can kind of relate this all to is like when you know you are going to relocate, but you haven't yet... you are present to all the things you are going to miss, but when you get there, you are totally excited and filled with the newness of everything... but during that time leading up to the move... you're kind of in limbo... that kind of comes close to how I feel.  Shoot, we got kids comin', goin', and growin'!  They're moving every which way! LOL

Life around here is busy.  Busy feathering the nest, busy working on PUCK plans, busy expanding my music therapy program at the hospital, and busy expanding my personal coaching program as well!  WHEW!  The activity is good.  Ang only has 16 work days left before Julian arrives!  Wow, that really makes it seem soon!  Julian's official C-section date is August 22.  Ali is so excited.  She is truly built to be a big sister.  I think she is really going to enjoy this because 1) Julian is EB free so he is safe to hold and hug and touch and pinch and all that yummy good stuff you want to do to a baby, and 2) She is two years older than when Bella was born, so she understands more and can interact at a different level with us and with him.

Thank you to all who sent love and support Courtney and Tripp's way.  Did you see any of the pictures of the prayer rally they did in Ponchatoula on Monday night?  All I can say is God is good.  What an absolutely inspiring event!  CLICK HERE to check out some pictures.  We lit Bella's candle in honor of the vigil, but more than anything, I just wanted to jump in a magical private jet and fly there to be a part of the event.

Recently, I shared that I played guitar for a fellow church member on hospice.  Her husband shared with my the most wonderful 'poem.'  It helps me, and so I share it with you...

I am standing upon a seashore.  A ship at my side spreads her white sails to the morning 
breeze and starts for the blue ocean.  She is an object of beauty and strength.  I stand and 
watch her until at length she hangs like a speck of a white cloud just where the sea and 
sky come to mingle with each other.

Then, someone at my side says, "There, she is gone!"

"Gone where?"

Gone from my sight.  That is all.  She is just as large in mast and hull and spar as she was 
when she left my side and she is just as able to bear the load of living freight to her destined port.

Her diminished size is in me, not in her.  And just at the moment when someone at my side says, 
"There, she is gone!" There are eyes watching her coming, and other voices ready to take up the 
glad shout, "Here she comes!"

And that is dying.

-Henry Van Dyke

Perhaps that also describes being born.  Maybe Bella is standing on the shores of heaven seeing Julian off while we all wait here saying, "Here he comes!"  Perhaps it is all just two sides of the same coin.

God night.

Sunday, July 24, 2011

July 23, 2011: Birth of Julian's song!


NO, not birth of Julian....

... just his birth song!

I have been procrastinating writing his birth song for a while now for a couple of reasons.  One, my experience with Bella's song eclipses anything I could have ever imagined in terms of how powerful or poignant a song can be.  I had the honor of singing that song every night to her momma's belly, at the moment of her birth, through every operation and hospital procedure, through a thousand lonely moments in ICUs, and finally, the moment she went to heaven.  I don't mean this the wrong way, but how do you top that?  I was intimidated to even go anywhere near my lucky yellow note pad where Bella's song is still penciled in on the top page, with Providence the song right behind it.

The other reason was much smaller... between Ali's song and Bella's song, I had this thought, "What else do I say to my new child I haven't already used in either previous song?"  I am not the world's most prolific songwriter, so I was worried I didn't have enough unique words of advice in me.

So, tonight, I enlisted Ali and mommy's help, and we all wrote the song together, as a family.  I also switched things up by writing it on the ukulele instead of guitar.  I thought that would help separate it in my mind from comparing it to either prior song.  We were all sitting at the dinner table, and I ran and got my uke and my lucky pad of paper.

Sure enough, it had *one piece of paper left.*  No joke.

We picked the tune that Ali and I wrote together a few years ago that is a mashup of Tiny Bubbles, and our own creation, and used that as the skeleton to hang the new words from.  This is a useful way to write a gift song for someone if you are hung up about writing a melody and chord progression from scratch.  Don't bother, unless you are trying to get it published.  Then, you'll need permission!

With great input from Ali and mommy, the tune was finished, and I played it through from beginning to end.

As soon as I finished, Ali chimed in, "That was too LONG."

To which I replied, "That's funny because I was just thinking that it was too short."

To which the wisest of the three, Angelique, said, "That means that it's probably just right."

And that is how it went down.

I'll record a scratch version of it soon enough, but suffice that Julian got his birth song played to the belly tonight just like old times.  When I finished, I reached out and put my hand on the belly, and it was vibrating with energy.  I have been a little distant from holding and touching the belly to date, and tonight, I really gave Julian some love for the first time.

This grieving-while-parenting-while-preparing thing has not been easy for me.  I know that what I am about to say is not "true" (just like most fears) but I am going to write a little about my fears, hoping that by seeing them and sharing them, they dissipate a little...

I fear that when Julian comes, I am going to forget about Bella just a little bit, by virtue of how present a new baby will require me to be.  I don't want her to get squeezed out by the newest edition.  She's not here to compete for attention like a living sibling is.

I am also afraid of feeling joy again for a baby.  I know she wants me to... but it's like the age old conundrum widows face regarding re-marrying or even dating after the death of a spouse.  How do I let myself feel happy again and have those feelings again for another?

As we get closer and closer to Julian's birth, a lot of what I would call - for a lack of a better label -  PTSD over Bella's birth is surfacing with greater frequency and intensity.  I had to be strong - stronger than ever in my life - when Bella was born, and I don't consider myself that strong a guy.  Her birth scared me more than I could ever say.  Hence, I am scared to even walk into that same hospital again.  That last trip took so much out of me.  I'm afraid of going back.  I almost wish we were delivering in a different hospital, just to help with ameliorating the trauma.

Please don't get me wrong.  I am not without gratitude for this opportunity.  I am simply not without fear either.  I know that we all live with fear, and that it is a normal, natural part of being alive, and being a human being.  It's just that the past two years were full of a bit more fear than any other two years in my life, and I am still reeling from it internally.  I wish I wasn't.  I wish I was stronger, but I'm not.  I'm a scared little kid inside a 38 year old body, trying to keep it all together.

What am I gonna do?  Keep moving.

God night.

Thursday, July 21, 2011

July 21, 2011: Tripp...


With the time you were going to read my blog, please go read Courtney's latest post about Tripp, and leave her some love and support.  We love her dearly.  CLICK HERE.  Thank you.

God night.

Tuesday, July 19, 2011

July 19, 2011: Happy Birthday, Angelique!


Yesterday was my sweetie's birthday.  It was one of those "milestone birthdays" and spending it big and pregnant in the middle of the summer.... I wasn't sure if she would rather just skip it all together.  Being that it was on a Monday, we all had to get up and work/go to camp, so after a healthy, yummy dinner, we went out for gelato.  For those of you who are interested in knowing, gelato is not just ice cream from Italy!  It is made with less milkfat, churned slower so it has less air than ice cream, and served at a slightly warmer temperature - not frozen - so you can better taste the flavor.  All this adds up to a richer, denser, bigger flavor impact than traditional ice cream can deliver!  mmmmm.... gelato.

We picked up our gelato at a great little place in old towne Orange called Cafe Lucca, and promptly walked to the circle where there is a big fountain and tons of benches to hang out, people watch, and of course, eat gelato.  I think the people watching highlight was the 6'4" 250lb dad changing his daughter's diaper outside in the middle of it all.... on some sort of electrical box.  Guess he didn't want to get down on the grass.  That was weird.  Then there was the giant red macaw and its owner that came by.  Ali loved that part.

A trip to the fountain is never complete without some good old-fashioned CHASE!  Ali and I burn some serious calories chasing each other around the fountain and the park in general.  Yesterday, I conned her into running TEN LAPS around the fountain before I even got off the bench.  That was a personal best in getting her to do my bidding!  LOL.  One of us usually crashes and burns at some point in the melee, and yesterday, Ali and I were pretending to do the long jump, and I put my foot out for her to jump past.  Well, she landed with one foot on mine, and I thought we had a good old fashioned ankle sprain on our hands for about 15 seconds.  Then, like so many moments with a 5 year old, I asked her some random off topic question to get her mind unstuck and she took the bait, and within a few more seconds, we were long jumping again.  Good times.

Today, after a full day at the hospital, I had the honor and privilege of playing guitar for one of our church members who is on home hospice.  This couple practically adopted us when we first arrived in CA as their own kids, and we have grown to love them dearly over the 7 years we've been here.  They have been married for - get this - 66 years!  THAT is just about the most inspirational thing EVER.  I just wish Ang and I had gotten married early enough to have a shot at a run like that!  Best part?  They are every bit in love with each other today as they were on their wedding day.  That is SO apparent, even today.  As I played and sang some hymns and requests, the husband just sat hands wrapped in his wife's hands as she lay in bed,  occasionally kissing, and just being with each other, like they have their whole lives.

My friends, THAT is how to love.

Give EVERYTHING YOU GOT, then give some more.  Yeah, it'll hurt at some point.  It's okay...     It's worth it.

God night.

Sunday, July 17, 2011

July 17, 2011: Fun in the Sun...


I hope you are all having a fun-filled summer.  The past two summers were full of a lot of stress, and the fun we had was more like mental survival techniques rather than light-hearted good times.  This summer, we are getting to really be outside and have as much light-hearted fun before going into the nest next month for a while with Julian.

Yet, the fun is still tempered by this subtle feeling, like a bad taste in our mouths.  We get to play in the sun and pool because we don't have Bella to keep in the air conditioned shade of our home.  This is where grief plays some tricks on me.  I know I should be grateful for being out in the sun with Ali.  Believe me, when I read how my friend Patrice is going stir-crazy this summer, I know I should 'count my blessings.' Yet, there's a big chunk of me that would gladly give back all these summer days, just to watch "Mickey Mouse Clubhouse" in the A/C indoors with Bella again.

This year, I get the sun and pool, at the expense of my girl.  I try to go through my weeks keeping busy and upbeat, but under it all, there is just so much pain.  Sorry to bring it out on here, I just can't go into a report of the activities since Thursday's post like it's nothing.  This pain is like a headache I just can't shake; it splits its time between a heartache, and a headache that mainly occurs as a head-fog.  I am so embarrassed by how many things I forget to do in a week.  Week in week out, I just try to let it go, but every once in a while, I just get tired.  This pain is tiring.

So, having lightened the mood here with that preamble, let me give you the news:

Friday night, my dear friend Sara Dudik (Sara Dee to her fans - check out her music HERE) played her CD release party in Los Angeles, and I went up to support her.  What a GREAT show!  Man, Sara has this thing she does with her voice, I'm telling you, she can sing!  It's hard to explain; her vocal tone is 1) her own 2) liquid 3) smooth, round, and creamy and 4) MASTERED.  PLEASE go check out her music, she is awesome and is as beautiful a person as a musician - and a fellow music therapist!

Saturday was back to back party time!  First, we went to a pool party for all the kids at Ali's daycare.  That was a lot of fun to see all the kids together in a separate environment from daycare playing so well together.

After the pool party, we headed to grandma and grandpa's house for a family birthday celebration!  July is birthday month in Ang's family, so it's all handled on one day, and it's practically Christmas in July!  Present opening time looked just like Christmas morning; wrapping paper and gift bags everywhere.  Good times, and LOTS of food.

Today, one of the teaching assistants from Ali's school came over to play with Ali in the pool and watch her so Ang and I could have a nice, quiet, grown-up dinner out to celebrate her birthday, which is TOMORROW!  It was nice for us to be able to hang out and talk adults for a while.  We love Ali, but she can dominate a conversation or situation more so than even me!  That takes a lot! LOL.

Tomorrow, I am bringing instruments into Ali's pre-school and hosting 2 separate "Fun with Music" times with the children from her class.  Mainly, I want to give the kids a good time, but really, I want Ali to have a chance to brag about her daddy coming to school.  This was exactly why Angelique and I structured my career the way we did.  Owning my own company allows me to call the shots and let family come first even at the beginning of the week, if need be.  I'm very grateful to have this opportunity.

Alright, eyes are drifting closed.  Last, and perhaps MOST important in this post...

Please say a prayer for little Tripp Roth, and his super-duper-amazing mom, Courtney.  Tripp is having a rough time of it right now, and he could really use a miracle.  Thanks.

God night.

Thursday, July 14, 2011

July 14, 2011: Dream Job, Part II...

Ali at her swim lesson today with her "swim fin"...


"I get paid to play and pray."

That's my mantra as a music therapist working in a hospital with cancer patients.  I left my second day back at the hospital on cloud 9 today after spending the day with some of the most inspiring, courageous people around: cancer patients.  Cancer is such a paradox; we declare war on it, yet it is our very own cells, and thus, we declare war on ourselves.

I just finished reading, "The Emperor of All Maladies: A Biography of Cancer," by Siddhartha Mukherjee.  What a seminal piece of work.  Sobering, and not for the faint-hearted; it traces cancer's journey through history, going back 4,000 years to the first documented case of a breast tumor by the great Egyptian physician, Imhotep.  The journey winds through the Holmes/Watson/Clouseau-like investigation of cancer of the 19th and 20th centuries before culminating with the development of the Cancer Genome Project.  The Cancer Genome Project has a pretty straightforward description of the process the makes cancer, and I include it here as an educational moment!  Parenthetical explanations are include by yours truly...

All cancers occur due to abnormalities in (our) DNA sequence. Throughout life, the genome ('catalog' of ALL our hereditary information) within the cells of (our) body is exposed to mutagens (any physical or chemical 'agent' that changes the genetic material within the genome) and suffers mistakes in replication. These corrosive influences result in progressive, subtle divergence of the DNA sequence in each cell. Occasionally, one of these cellular mutations alters the function of a critical gene, providing a growth advantage to the cell in which it has occurred and resulting in the emergence of an 'expanded' (read:overactive... replicating faster than 'typical') clone derived from this cell. Acquisition of additional mutations, and consequent waves of clonal expansion result in the evolution of the mutinous cells that invade surrounding tissues and metastasise (spread to non-adjacent organs or regions of the body). 

One in three people in the Western world develop cancer and one in five die of the disease. Cancer is therefore the commonest genetic disease. - The Sanger Institute 

I think this description hits home the fact that cancer lies in our very genes.  It is inside us, not outside us.  The outside can and does influence the inside, but cancer is a part of the very foundation of who we are. Anyhow, bringing an old friend like music to visit patients battling this paradox is just about the best thing I can think to do with my time on this planet.  The laughter, joy, smiles, release, and peace that I witness across patients' faces and bodies during and after music therapy tells me that they really appreciate the visit by their old friend music.  

I could gush on and on about this topic, but I'll cut it short tonight as I have a BUNCH of work due tomorrow for other projects and I need to get crackin'!  However, I will say that if you or someone you know and love is going through cancer treatment, ask them if they have an mp3 player to take with them to their treatments.  If they don't, you can get them outfitted HERE for roughly $20.
  Even something as "small" as 2GB of storage holds between 450-600 songs.  If you average 10 songs a record, that's 45-60 records.  I don't know about you, but that's a lot of music to me.  Point being, research shows that when you decrease stress, and increase relaxation, your immune system works better.  Make a relaxation playlist (I probably had between 10 and 20 in Bella's room) and have them listen to it on the way and during their treatment.  It's a good start.

Lastly, if you live in the Los Angeles area, my dear friend Sara Dee is having a CD release party tomorrow night at the Room 5 Lounge (143 N. La Brea - second floor)

from 10pm-1am.  Sara was gracious enough to play at Bella's Birthday Bash, and she is an AMAZING musician.  I will be there supporting her tomorrow night, and I hope you can come out and listen to some "feisty folk" music with me!

God night.

Tuesday, July 12, 2011

July 12, 2011: Back in the hospital at last...


Well, it took 6 months, but UC Irvine Medical Center has music therapy again in their cancer center and on their oncology unit!  I can't remember how much I have shared about this journey, but it felt SO GOOD to be back today.  In addition, I used to only be there 1-3 hours a week at best, and now I'll be there 10 hours a week!  I have been working toward today for a l-o-n-g time for up till now, I have kept busy as a sub-contractor or per-diem employee.  Today was my first official day on the job representing my own music therapy company, Sonic Divinity Music Therapy Services.  Sonic Divinity - as an idea - is probably 16 years old at this point, and to nurture a single idea for that long, through all sorts of iterations, well, I don't want the day to end without taking a moment to say thank you to a couple of key people who helped today become a reality.

1.  My wife.  It was back in 2003 when she encouraged me to go back to school and when I first discovered music therapy.  If not for her encouragement, I never would have found music therapy.  We knew that me going back to school full-time would rest the financial stability of the family squarely on Angelique's shoulders.  Not only did Ang support us through a move to CA, the purchase of our home in Orange County in the height of the real estate bubble, but she did so through the birth of 2 babies, one being Bella!  She is an extra-ordinary person quietly walking around this planet improving it every single day.  How?  EVERYONE who meets her or works with her CAN'T HELP but up their game after watching how gracefully she plays the game of life.  She is a thoroughbred, as my old friend Joe so aptly remarked way back in 1999.  I have always said that I live my life at the level I do just to keep up with Angelique.  THAT is how much she inspires ME every day, every week, every month, year after year after year.  I am a better man because of her.  Thank you, honey!

2.  My professor/mentor/colleague/contractor/friend, Helen Dolas.  Helen stepped onto the scene at Chapman University where I was getting my degree in music therapy at a pivotal point in the program where some key business acumen and fresh leadership was needed to assuage an impasse between the director of the program at the time and the students.  It was at Chapman where I first was challenged by her endless creativity.  More specifically to UC Irvine, Helen was the person who reached out to UCI to create a clinical placement in their infusion center in 2007.  I was the first Chapman student placed there under the partnership of Jennifer Higgins and Donna Baker, two of the social workers.  4 years later, Jennifer and I were brainstorming today about how to get me a pager for social work referrals up on the unit.  Helen was the spark, and living in Orange, I always knew that I would never let go of the work she built at UCI, for I always wanted to be a medical music therapist in an adult hospital.  Most graciously of all, Helen allowed me to pursue a contract with UCI directly after subcontracting under her for two years there.  The generosity she showed me in giving me that chance will never be forgotten, because I have named this new era of music therapy at the hospital the Dolas Music Therapy Program at UC Irvine Medical Center.  Thank you, Helen.

As a music therapist, when I see patients in the hospital, some sessions are good, some are okay, and some are just sublime.  Today, I had one of those sublime sessions with a sweet old man who was referred to me with "End of Life" as his referral symptom.  He is losing his battle with cancer, but willing to keep trying anyway.  The conversation we had was just amazing.  Just listening to his journey through life, and around the country along the way, he has had one rich and full life.  As we started to talk about music, he shared with me the type of music he loved, which I have a thick collection of.  Within a few seconds of me beginning my first song, "Red River Valley,"  he was awash in tears.  To some, that might alarm them, but music and I, well, we're pretty close. I know what hearing a song played live and played well can do to someone who hasn't heard that song in decades.  It can release a veritable FLOOD of memories, because the song acts as a "Tab" in the file cabinet of their mind, and when you pull that file open with the song, stacks of memories are lying perfectly intact within.  These memories are not 'forgotten' so much as not 'accessed' anymore, and they all come out together, like a stack of pages falling out of a file folder onto the floor.  Combine the emotions attached to those memories, and the mind suddenly has a FLOOD of emotion passing through it, like a flash-back, or life-review.  It can be very intense for people, and I've seen it and used it enough times to know it when I see it happening, and to walk tenderly through the papers on the floor with that person, until everything is picked back up again.

I love that walk.  It is SUCH a privilege.  The Greatest Generation, folks, grew up before home movies and video, or "BV" as I like to say.  Today, we broadcast and film EVERYTHING by comparison.  This greatest generation has all the movies never shot, blog entries never written, facebook posts and tweets never uploaded inside them, in their memory, and when this Greatest Generation dies, so does with it an encyclopedia of rich history we won't be able to get back through revisionist history books.

It is as if I arrive at the back alley door to their mind, but I have brought an old friend that knows the secret code.  The friend is music.  Their mind hears the code emanating from my guitar, and opens the door, and I am given a glimpse of the world - not the hollywood world - someone's real world of the middle half of the twentieth century, when this great country endured the Great Depression, WWII, the nuclear age, and the virtual explosion of America from within from the advent of highways and suburbia.  My dad turned 18 on August 29, 1945, just missing the draft into the Pacific Theatre, and spent 4 years on the tiny island of Okinawa serving his country during the Korean War.  Perhaps this affinity of this era comes from the love I have for my own father, who knows.  What I do know is that I feel humbled and filled with gratitude when I get to listen to the life story of someone from the Greatest Generation.

Whether it is your parents, grandparents, great-grandparents, or YOU, grab a recording device and get that part of your family talking!  You'll TREASURE those tapes, CDs, videos forever.  My dad's dad died when my dad was just a little boy, not much older than Ali.  I have only seen two photos of him, and what I would give to hear his voice just once.  Don't let your kids or grandkids feel this same way.  Have a BBQ and get the stories going.  It's summer, there's no better time a year to sit around swappin' stories.  They are what bond us from one generation to the next, and to each other.  If it wasn't for Bella's story, none of us would be right here right now, right?

Let us celebrate these stories this summer, and let them add color, texture, and context to the masterpiece we are creating ourselves this very day.

God night.

P.S.  CLICK HERE to watch the video I shot just after shooting this picture of Bella at RMH within a day or two of transplant.

Sunday, July 10, 2011

July 10, 2011: Back to the Office...


Well, thank you for all your support!  That was really nice!  I read your comments as I was waiting in the stadium seats at Petco Park on Friday for my 30 second shot at sharing Bella with the world...

... unfortunately, I came up short.  I got cut.

What to say, things went SO smoothly on Thursday that I thought they would go as smoothly on Friday.  I really thought that I would march right in, find someone to share my story with, and be whisked off to talk with the producers.  A little "magical thinking" going on there, of which we all know I am found culpable of from time to time.  The fact was, I sought out and found one of the producers, then balked at the chance to tell my story.  I chickened out!  I simply asked if I'd have a chance at the audition table to tell my story, and they said yup, so I waited until I was standing in front of two producers, in a line 4 across of other mildly to untalented singers.  When I got in front of them, NO ONE else spoke when it was their turn, they just started singing, so I felt nervous because clearly I wasn't supposed to talk at all...

... of course, that didn't stop me, but I totally fumbled my story to get it out quickly, and didn't deliver THE TRUTH of the matter the way I knew to.  Then, I thought that I sang well enough that the combination of my story and my singing would send me through, and when they gave us all the axe, I just stood there and shuffled off smiling, thinking, "Wait a minute, it didn't happen?"  I genuinely thought while I was with the producers that they would send me through, and after I walked away, I felt proud that I went for it (better than running from the idea), but sad that I didn't NAIL EVERY WORD that I had to say.

There is a great sales presentation trainer out there that I have read named Patricia Fripp, and in her training, she HAMMERS HOME the point that you need to know what your audition or presentation is worth to you, and you need to divide that into the number of minutes or seconds you have to make your presentation or pitch.  By doing this, you realize really clearly how much every word and every second is worth, and by doing this, you don't waste words or time delivering your message.  Being the verbose guy that I am, I struggle with this.

Having spewed all that, I am a recovering perfectionist, and rarely satisfied with my work at any level.  I could have spent just as much time writing about the bad split second decisions I made today playing goalie, despite making probably close to a dozen saves (that is a lot of saves in one match... busy day for me).  P.S. I don't play goalie competitively, and it's been over a year since I played a whole match in the goal.  Never mind that, I should have made EVERY decision right!  LOL.  Oh the folly of it all...

What I can tell you about the day though is that I just could smell the desperation in the air from so many who literally pin their hopes and dreams on making it on Idol.  There were people singing (screaming?) ALL DAY long... singing to "warm up" or practice, or just be heard.  What I saw in a lot of incidences was people just desperate to be heard, be noticed, for whatever reason.  The voice is sooo intimate an instrument... to put it on display in front of your teen peers... for some it was a display of guts, bravado, and/or confidence, but for others it was a display of delusion or desperation.  But hey, I was there, too...  which was I?

That is the conundrum in all this....

The biggest challenge in this journey for me is balancing/blending the messenger with the message.  The message is Bella, the messenger is me.  Sometimes I do a good job just being a transcriber or transducer, hoping to remain somewhat transparent in the process.  However, sometimes my ego gets in the way, and the messenger loses his grounding - his source - from the message.  My honest belief is that Bella picked me, big mouth, big ego and all, and never expected me to be perfect, just powerful.  In the end, THAT is why I was in San Diego on Friday, because I knew that I would only regret NOT going for it.

Don't hold off any longer on that thing you KNOW you wanna do.  Don't ever find yourself saying, "I wish I had [fill in the blank], but it's too late now."  While I am bummed I didn't get picked, I am SO PSYCHED I at least tried.  And for all the things I shared recently about regretting going to MN with Bella, at the end of the day I know that I was destined to outlive Bella.  If we did nothing, after outliving her, I would be left with, "I wish we would have tried Minnesota."  TO BE CLEAR, I am not advocating this to any other EB parents about whether you should or shouldn't go BMT.  I respect each and every EB parent's decision and opinion on whether they think BMT would be best for their child.  I am just speaking for me.  In life, don't be left wondering.  Know.

Lastly, please hold EB mom Michelle Burch Ragler and her husband Gordon in your prayers.  Their 15-yr old daughter, Lexi, got her butterfly angel wings this past week, and they need help paying for her funeral.  They are $7,000 short, and having to post on facebook in a general call for help.  I am going to repost mom's facebook post as a call to action for anyone moved to assist:


If losing your daughter isn't enough, the financial stress of not being able to afford the funeral... that is just too much.  The messenger in me really wants to make lots of money in my lifetime so I can literally call the funeral home in incidents like this and make that stressor go away for that family.  I wish I had understood the power of philanthropy earlier in life.  For many, MANY years, I was so anti-money, because I only equated money with materialism.  I never saw the connection between money and philanthropy.  Now that I do, I feel so far behind.  There is so much to do.  There are so many causes, and so many traditional funding sources just vanishing.

Alright alright, thank you for reading as always.  We are sincerely grateful to have you in our lives.  Thank you for continuing to come and share your lives with us as we share ours with yours.  I will tell you that when I was filling out the "Your Story" they have you fill out, I hesitated when it came to filling in my hometown.  I though of the episodes where they show all the people cheering for and supporting the contestants.  Well, since entering the blogosphere and FB big time after Bella's birth, and reading all the words of encouragement on here and on facebook about auditioning for Idol, I realized that this is my community.  The virtual world is still full of real people.  It's not virtual at all.

God night.

Now for a whole slew of pics from audition day as well as from our thank you dinner with Team Bella this weekend...

The audition tents.  You line up 4 across and sing until they stop you...

Check out the cute t-shirt I had made for the audition...

Meanwhile, the mermaid goes through... watch for her... I have a feeling she'll make the TV show...

Nice shot from behind home plate... a BEAUTIFUL ball park, by the way...

Last shots of the tents before the camera was made to go away...Break a leg!

... and the view of the tents one last time after being cut... mind you... only 100 or so from the 10,000 there will get to audition in front of Randy, J. Lo and Steven, and only a fraction on the 100 make it onto the episode...

Since we were walking along the warning track in the outfield on the way out, I had the kid I was walking with take this of me 'scaling the wall' for a fly ball...

Ali asked the Mariachi band for the Chicken Dance...

Look at the knife they gave me to use to cut the birthday cake for Ang that Sara brought!  (Ang's big 40 is on July 18....)

Daddy leading the kids in the conga line to keep them entertained...

"The Core" Team Bella: L-R Lara Seto-Davidson, Sara Cooper, me, mommy, and Jennifer Thomas.  Thank you, ladies.  Bella's Birthday Bash would NEVER have been half as beautiful without you.

Lara's boy, Charlie Braeden, Ali, and Jennifer's youngest, Nolan...