December 29, 2011: Tales From Multiple Fronts!

Heaveno!

Well, it's the last post of 2011.  Does that mean something?  I dunno.  I do know a couple of things.  We were busy beavers in 2011.  Even more so, we were BLESSED beavers in 2011.  God is good.  All the time.  He has been so good to us this year.  We work hard and play hard and God has given us so much to be joyful for along the way.  HE has given us YOU!  In this ADD over-stimulated world of technology and information, we're all still together... convening a couple times a week to share... life.

Fellowship... internet style!  I almost said virtual style, but it's not virtual, it's actual!

Life on the PUCK front is hectic right now.  Our inaugural charity luncheon in Orange County, CA is less than 2 weeks away!  SO many moving parts to coordinate.  IF you are reading this and you are planning on coming but have not registered online (click on Wings of Hope in the side bar)...

... PLEASE do so this weekend!  Next week we have to send in a final head count and let's just say we're not where we hoped to be at this point with registrations.  We've had twice the number of RSVPs, but we need those RSVPs to convert into registrations so we can have an accurate food count for the restaurant.

There are still seats available if you are local and would like to come.  Dr. Wagner is flying in just to speak at our event and then get on a plane and go back to MN that same day.  How cool is that of him?

And, if he is in town, 2011 CNN Top 10 Hero Chef Bruno Serato will be dropping by to say hi to us!
Should be inspirational and yummy!  5 star, 3 course lunch to boot!  Alright, alright... enough plugging.

On the music therapy front, I said goodbye for the last time to 3 of my patients today.

That's a tough day at the office.  I'm glad I am only working 2 days a week.  The first patient was intubated and sedated and on the same meds Bella was on... Fentanyl and Midazolam.  They were taking her off life support today.  She is 45.  My second patient I used to see in the infusion center.  She is going home to hospice.  She is 50.  Cancer does not care how old you are.  It's got me a little freaked out frankly, because there is A LOT of history of morbidity due to cancer in my immediate family tree.  Grandpa, dad, aunt, and uncle.

A really sweet moment occurred when I walked out of the first patient's room in the midst of a flashback after seeing the medicines and ET tube.  The social worker on that unit just happened to be walking by as I was walking out.  I told her what was going on.  She didn't know Bella was in the PICU for 3 months.  She just gave me a hug and basically said she couldn't believe how I could even walk into a hospital again much less do what I do with the Palliative Care Team.  I just feel like it is where God is calling me to be.  He has been molding me into this position for years.  Still, it is no easy walk, but it is where God wants me.  THAT I can tell.

On the home front, we had a Team Bella planning meeting last night, and Sara was tickling Julian better than I ever have.  Enjoy the video!

God night.

December 27, 2011: Catching Up...

Heaveno!

Sorry, I've been slacking on blog duty.  Thursday, I had writer's block, and Sunday, I was exhausted from a wonderful Christmas Day.  So, here is a photo essay of it all...

God night.

P.S. Blogger says I've reached my quota with pictures on this post, so I'll hook you up with another shot of Bella next time...

December 20, 2011: Tuesday's Tales from The Front...

Heaveno!

I'm liking this idea of sharing a little of the beauty and magic that I get to be a part of each day in my hospital work, because for so many, music therapy is such a new shape on the peg board.  There is an entire team of caregivers at the hospital that create such moments with their patients, and it is an honor to be part of their team.

Today, I walked into "E's" room.  It is one of the few "semi-private" rooms in the hospital.  That means there are two patients in one room, and my patient was in bed #2.  Bed #1 was occupied by a large gentleman who struggling to breathe.  He was laboring with his breath and clearly not at ease.  The bad news?  I wasn't there to treat him.  The good news?  I'd end up treating him anyway, since the music I was about to share with his roommate would inevitably be shared with him as well!

As I introduced myself to E, his wife burst out, "TIM!  You spoke at the Cancer Patient Dinner last year!  We LOVED your speech!  Wow, you're here to treat my E?"

This was a good start!  :-)  If we could all be introduced with such fanfare!  I went to get my guitar and songbooks from the hall since I knew we'd be gettin' some music on in here.

I could detect that E was having trouble with his speech.  His cancer had metastasized to his brain, and it seemed to be affecting his expressive language center.  However, his receptive language seemed fully intact.  E's wife opted to climb into bed with him and snuggle, giving me the chair.  It was so cute, I asked her for her phone so I could snap a picture of them together.

They are a couple of great faith, and had a boombox in the room which they regularly played praise and worship music on, so when it came time for A) church Christmas carols or B) pop Christmas Carols, they went for A!  The nice thing about carols is there are kids pop carols, adult pop carols, church carols, fast carols, slow carols, funny carols, contemplative carols... something for (almost?) everyone.

As I played, the tears began to f-l-o-w out of E and his wife.  They were good tears, tears of joy for having such beauty (the music) present in live form in their room at this moment of their long journey.  There were also tears of sadness.  This was most likely E's final Christmas; he was going home on hospice later today.  I sang "Oh Holy Night," "Silent Night" and "Little Drummer Boy," and after the third song, I just blurted out something resembling the following...

You know, the nice thing about music?  you don't need words to express your feelings while listening.  I have a 4 month old at home.  He doesn't have language or words, but man, can he communicate!  When he is happy, the world knows he is happy... no words needed.  He simply radiates and beams happiness from his whole being.  I can use words with him, but they are just "mwah mwah mwah" to him.  He doesn't need words from me, either. We communicate just fine.


To which E's wife looks up at E, reaches up and caresses his cheek and says glowing with love, "You hear that E?  That was meant for you!"

E was obviously a strong man in his life; you can see it in his eyes, face, and body.  It dawned on me that E was NOT OKAY with not having words... right up until this moment.  Again, the tears just flowed.  His face relaxed and smiled, his shoulders rested back just a little further into his bed, as if for just that second, all that was wrong with his (in)ability to speak was right again.

My whole day was worth that moment.

That is what I strive for with each day here on this planet.

You know who else never needed words to communicate with the world?

Bella.

No words necessary.

She captured the world with her eyes, and thanks to digital photography, she still captures those who meet her for the first time through "film."  My God, am I grateful for my little Canon PowerShot SD1100 IS.  It is beat to you-know-what, but it has captured our angel forever in its lens.

Final unrelated note...



www.alisartworld.com is officially live, with her second Episode!  Please go check it out!  Ali is having a lot of fun with this, as am I, except for the fact that editing video is a ________ eh hem... joy!



God night.

December 18, 2011: Fun Time...

Heaveno!

Sorry to skip a day on you (again), it's becoming kind of a habit.  What can I say?  Busy house.  This past week alone...

1.  Our local Team Bella labeled, stuffed and sent out over 250 invites to our January luncheon.
2.  I launched a registration website for my professional association's regional conference
3.  I made and sent out a postcard to about 800 music therapists for our spring conference
4.  I oversaw the making of a 17 page preliminary program for conference
5.  I wrote and delivered Module 5 of my second information product
6.  We attended Ang's company "winter open house"
7.  Ali had her first school musical production
8.  We stuffed, stamped and sent out announcement and Christmas cards to our list of 50
9.  Ang returned to work
10.  Julian began part time day care 3 days a week
11.  I began a six month partial sabbatical to stay home with Julian on Mondays and Fridays.
12.  Julian had his 4 month well baby check-up
13.  Ali saw the doctor for "issues with number 2"
14.  Ali sold her first piece of art from Sunday's video lesson!

Holy crow, what a week!



I am a bit more relaxed now that the week is behind us.  I knew all this stuff was falling on the same week, and there really wasn't anything we could do about it, it was just a case of bad timing.  One thing I am good at is making sure I don't double book my time for events, but the lesson I learned this week was that I need to map out projects in time and make sure not to double book project deadlines.  I did this to myself last year at New Year's, and so I tried to outsmart myself by setting earlier deadlines for our conference, but then we landed this dream luncheon from Bruno Serato, and well, there went that.

I remember on Wednesday, about mid-morning, Ang called me from her office and asked me how I was doing...

"Grinding away," was my reply.

"I can't even consider myself grinding!" she said in return.

This week was a grind, no lie, but if feels good to stand on the other side of it at last and have all that past us.  The best part of it all?

We actually had a lot of fun throughout the week.



Ali and Daddy pretending to be Mary and Joseph in the Nativity Scene...


It reminded me that circumstances don't require any specific response from us.  We can generate any response we choose.  That's a great insight to draw upon when I find myself grinding away on multiple items.  I really do have the freedom to feel and act however I want about the whole thing.  This week, I really worked on just handling what was directly in front of me, and nothing else.  It required some discipline, and I was bummed at one point because I had to call a dear friend and apologize for not getting any work done on a mutual project, there just wasn't any extra time this week.  However, I wasn't bitter or resentful at my schedule for putting me in that situation.  It's my schedule, not anyone else's, so it seems not too smart to get mad at myself or resent myself.  That hasn't always been the case, but life is one non-stop learning opportunity, and I am working on learning as much as I can!

We had fun at church today, despite Ali's 4 hour rehearsal for the Christmas Eve musical.
We had fun at the mall on Saturday picking up some more Christmas gifts
We had fun at Ali's school musical
We had fun at mommy's company party
We had fun stuffing ourselves as well as our envelopes with Team Bella
We had fun giving Julian his first rice cereal this week, too!





We can find fun inside of busy, and THAT is a blessing.

God night.

December 13, 2011: Tales from the Front...

Heaveno!

Two weeks ago, I shared a story about a profound day at work in the hospital for me.  Well, I had another one today, and I need to share again how beautifully God orchestrates life.

My first meeting with "E" was one I'll never forget.  A young man, only a few years older than me, and younger than all my siblings, I found E in an infusion room writhing in pain from pain in his chest.  It got so bad that he actually was on his hands and knees in the hospital bed, desperately trying to find relief from the pain.  I played my guitar for him, and felt completely helpless.  After 30 minutes, nothing changed.  His pain was 10 out of 10 still.  He even had the grace to say, "I'm sorry, I just can't concentrate on the music, the pain is just too distracting."

I left his room feeling not so much like a failure that day as just ineffective.  On so many occasions, I witnessed wholesale changes in a patient's body from the addition of live music in their space.  We all know music affects our mood, but I really work with patients to understand how music affects the body.  Well, not on this day.  

That was a couple of months ago.

In and out of the hospital and the infusion center, I would bump into E, and he was always quiet, polite, shy, even.  We never really connected or hit it off musically, but there was a polite awareness and mutual respect present.  

Fast forward to last Tuesday, and E's condition has deteriorated.  He is now intubated and sedated in the ICU.  I look at his IV pole, and see the familiar names that kept Bella sedated in the same setting just over a year prior.  Every IV pole I see with "Midazolam" on it reminds me of Bella.  I meet his mom for the first time.  She is a strong-willed, confident woman, and we talk for quite a while.  I explain that even though her son is sedated, his ears are still processing auditory signals, and I tell her that I first met her son in the infusion center 'on that fateful day.'

She then proceeds to tell me how her son told her how some man came into his room while he was in that most excruciating pain and played his guitar for him.  She was very kind to say this; I thought I had been wholly ineffective that day, but at least he remarked at the experience even if it didn't take away his physical pain.  

Turns out E loved the beach, and was able to take one last outing down to Newport Beach to hear the waves and grab his favorite, "Perry's Pizza" just before being hospitalized this time around.  So, I grab my trusty ocean drum, hand it to mom, and ask her which instrument E would prefer hearing over the waves: guitar, ukulele, or native american flute.  She says guitar, so I grab my guitar and improvise a meditative, arpeggiated rhythm while she created the waves with her drum.  The tears flowed down her cheeks as she balanced the drum on her lap with one hand, and held her son's hand with the other.  It was a beautiful sight.

Thursday, I return, and E is a little less sedated, can make eye contact, and nod appropriately to commands or questions.  E nods that he remembers me, and that he remembers "the jam" mom and I did on Tuesday, so mom and I do it again.  Again, the tears flow.  Tears of pain, tears of anguish, tears of release, of catharsis, of joy, of reminiscence... all of it.  I affirm the goodness of those tears.  You could just see the stress flowing out of her.

Today in rounds, I find out that E has taken a final turn for the worst, and that a family meeting will be held later in the day to determine the next course of action.  The Palliative Care Team agree that I should go and see mom and E after the meeting.  Before I go in, I see my colleague, the amazing Dr. Liao, and he informs me that mom is going to take E off the ventilator tonight and let him go.  The team will keep him sedated and comfortable, and he will peacefully join those before him in Jesus' arms in heaven.  That decision had just been made.  

I gown up and enter the room only to hear a nurse trying to tell mom to stay strong.

"I'm feeling anything but strong right now," was mom's reply.

I walk in without saying a word, smile, and walk toward her.  She recognizes me after a second or two, and simply walks up to me, and in a tear soaked hug, collapses in my arms.  

No. words.  Necessary.

After a second, I affirm and acknowledge her incredibly difficult decision, and then it happened.

I quietly told he that I had stood exactly where she was standing as a parent just over a year ago.  

I looked her in the eye, and told her she was going to get through this.

Within a minute of this, our amazing chaplain Joe walks through the door.  This is a true human 'being.'  Chaplain Joe's demeanor is so peaceful, he doesn't need to 'do' anything.  His 'being' is immediately comforting to anyone that shares space and time with him.  

I never told Chaplain Joe my story, and now wasn't the time, but as he and I sat with mom, she barraged me with questions of faith.  Was I able to keep my faith?  Did I still talk to God?  I just shared my experience with her as honestly and in tiny tiny chunks as possible for her.  The truth?  I took it in the teeth regarding prayer, but my faith never wavered, and that is exactly what I told her.  I simply said that my faith is not based on circumstance, so it can't be touched.  No one can make me believe, and no one can take my faith away... it's genuinely mine... a gift I gave myself.

We continued to talk, all the while Chaplain Joe quietly listening and affirming.  She took a call.  Her boyfriend arrived, Chaplain Joe prayed, then left.  After her call, I gave her the ocean drum one last time, and her boyfriend a rain stick.  This time, I played guitar again, but this time, I played...

... yup...

His Love is Everlasting,

and I played my best for him... pa-rum-pa-pum-pum.

Then something else happened.  

When the music was over, I quietly put away my guitar and the rainstick, walked over to mom, knelt down in front of her chair, and asked her if she would like to keep the ocean drum.  I explained how memory works in the brain, and that in the grief journey, the pain will subside, but the memory of this time will remain, and that she can go to the ocean with E any time she wants to simply by playing her ocean drum.

I have another one in my closet.  It gets played maybe once or twice a year.  Now, it'll get played every week at the hospital.  Ali cried when I shared this story, because it's her favorite instrument of mine, but I explained we are blessed enough to get another.  She loves the fish!  It really is a great instrument, and I just felt like it was the right thing to do.

Think about it.  

God put me in that room with her on repeated occasions leading up to today, so that another caring parent who'd lost a child could be with her in that very moment... unbeknownst to everyone involved, save me and God.

Once again I say, "Well played, God.  Well played.  You are the master conductor; the only one who can see the entire musical score.  Those of us who can trust the direction of your baton create often times beautiful music with you.  It's when we don't follow the baton that dissonance occurs.  Thank you God for orchestrating ALL OF IT so that I could be your messenger of hope and peace to E's mom on this very day."

She told me that she had been out of his life for years, only to return just before he was diagnosed with cancer two years ago.  I remarked that it seemed completely providential, and that perhaps the entire reason she was brought back into his life was specifically because of his cancer.  E got his mom back to be by his side through the scariest, most painful, and final two years of his life.  She was there on his first day, and she was there on his last.  What more could a kid hope for?

Go be an instrument of God's plan.  Follow His lead, and make beautiful music together.

God night.

December 11, 2011: Inspiration Begets Inspiration

Heaveno!

This is how inspiration works.

Mommy, daddy, Ali, and Julian watch CNN's Heroes of 2011 on the television.

We watch inspirational stories of ordinary people doing extraordinary things.

Our hearts swell upon hearing story after story.



I say to Ang, "You know, it's been a privilege being Bella's parents because in some small way, we've been heroes to parents, spouses, and people that have written to tell us what a difference we've made."

She responds, "I like to think that Bella is the real hero."

Right as always, but it's okay to acknowledge our roles as "supporting actors," I say.

Then, as I look at the picture in the living room of Ali hugging Bella, I turn to Ali and I say, "I know of one other hero who donated her bone marrow to her little sister."

To which Ali responds - out of the blue, "I want to sell my art to the world to raise money."

"Who do you want to raise money for?" I ask.

"Bella's doctors."

So, as I give her a bath, she and I start to brainstorm different ways to share her art with the world.  Among many of the ideas, a vlog (video blog) emerges where she'll draw a picture - like Bob Ross, baby - and while we're brushing teeth, she decides she wants to do her first episode tonight.  So, with, um, no planning, I give you episode 1 of Ali's Art World...



Life is good.  Stay tuned for more inspiration.  Here's a seed.  When you find yourself inspired, do something inspiring.  There's no better time to do so.



God night.

last but not least, one of my all time favorite pics of Bella and me...

December 6, 2011: Guess Who's Coming to Lunch?

Heaveno!

Dr. John Wagner, Head of the EB Bone Marrow Transplant Program at the University of Minnesota!  He is flying out to speak at our Wings of Hope luncheon benefitting Pioneering Unique Cures for Kids at the Anaheim White House in Anaheim, CA on Wednesday January 11, 2012, from 12-1pm.  How many prepositional phrases or web links can a guy slam into one sentence?!  LOL.

We are so excited he can make it!  We just found out over the past few days that he can make it work in his crazy schedule.   Normally, when you want a big time speaker like Dr. Wagner, it makes sense to plan the date around his schedule, but since we were gifted this event by 2011 CNN Top Ten Hero Bruno Serato, his team set the date, so we were retrofitting our speakers to a pre-existing day!

The luncheon is coming along wonderfully.  We have 100 seats and we are just about half full so far!  Jennifer Edling, Daylon's mom, is not only speaking as well, but helping with the decorations, along with the rest of our fabulous Team Bella: our friends Jennifer Thomas, Sara Cooper, Maria Hernandez,  and Lara Seto Davidson.  To ALL of you ladies, we couldn't do this without you.  Thank you for your undying support!

We have seats available if you or someone you know from our area is interested in coming.  To register: CLICK HERE.  Tickets are only $25 for a 5-star, 3 course meal valued at $60!

What else...

Angelique goes back to work next week!  She looks forward to getting back to work on one hand, but is really gonna miss Julian.  They have really bonded.  I was at a seminar last week having lunch with a friend who lives in Canada.  When I told her how long Ang had off, she smiled and simply said, "You should move to Canada, we get a YEAR off as moms, and you as the dad get 6 months!"

Aside from the cold winters, Canada sounded really good right then!

Jane, did I get that right?  A year for moms and 6 months for dads?  Who was it from Sweden who told us how long you guys get?  TWO YEARS? Is that right?  You guys have great priorities.  I really appreciate that a lot.

Here's potentially a powder keg of a topic...  NO offense is intended by the following... just a genuine curiosity over a recent set of events...

Ali now comes home singing Hanukah songs from our public school...  should she be learning religious songs of any denomination in public school?  All I'm sayin' is the Christmas songs she's learning (if any) better actually be centered on the coming baby Jesus and not Rudolph the Red Nosed Reindeer, or I'm calling foul!  LOL. I don't recall them learning any songs for Ramadan...  I maybe assumed naively that church and state had been split up in the classroom (for better of for worse) such that we took "the minute of silence" out of the classroom, made the fall music programs "holiday music" and not christian Christmas carols, etc...

Again, we're just now re-entering the public school system, having been out since we were kids... I call it the Rip Van Winkle Syndrome.  We have handouts coming home daily of dreidels and menorahs, but I'll be surprised if any handouts of the nativity scene or the cross at easter come home.  More likely Santa and the Easter Bunny.  Anyone have any insight as to curriculum inclusion/exclusion criteria related to religious subjects?  Please enlighten me!  I HOPE I don't come off ignorant in all this, I genuinely don't understand.  Thanks!

God night.

December 4, 2011: The Holiday Spirit is Alive...

Heaveno!

LIFE is good.

Did you know that?



The tree is up, the lights are dazzling, the ornaments are dancing, the Holiday music channel on cable is on almost all the time.

Life is GOOD.



Ang had to remind me that we weren't even HERE last Christmas; we were up in Colorado visiting my mom and my sister and her family visiting from Spain.

I forgot completely.

Talk about the fog of grief.

I remember more and more as I really concentrate, and even still, only segments come back at a time.  The first time she told me we were there, I was able to recall only one or two images.  Now, as I write this, much more comes flooding back.



Sometimes, I wonder at how I was able to function, travel on airplanes, speak at conferences, etc... then I remember that I got lost and couldn't figure out what hotel I was staying at and found myself wandering the streets of Cleveland last November.  That was then,

This is now!

There is fun in our home.

Little Julian giggles, smiles, and beams at just about anyone who will engage him.  Ali is an ever-blossoming pixie.  She delights in playing with her little brother, furiously creating her art (tonight she was working on a dress), cooking with mommy, and tonight she led daddy in call and response hymns in bed that she was improvising on the spot.

Life IS good.

Enjoy the pics.

God night.