Tuesday, November 29, 2011

November 29, 2011: Full Circle...


Possible tissue alert... just warning ya...

When my dad died of cancer in October of 1997, Enya was playing in his bedroom.  It was like the sound of angels.  Have I told you this story?  I was a 25 year old struggling musician.  At that moment, I thought to myself, "Wow, if I could be the soundtrack of someone's transformation from life to afterlife, THAT would be the highest use of my gifts as a musician."  That moment led me eventually to music therapy.  As a music therapy student, I had the honor of playing for a church member as they withdrew life support.  I remember thinking that in that moment, I had realized my vision.

However, as you may know, the moment Bella's heart stopped in October 2010, her birth song came on the ipod playing in her hospital room, 45 minutes into a playlist that was playing.  I sang along as we unhooked her from the machines trying to keep her alive, and in doing so, I had the honor and privilege of being the soundtrack to my own daughter's transformation into afterlife.

I thought FOR SURE that this was the end of the story.


There is no end to the story.

It just keeps unfolding.

Today, I had the honor of playing for a gentleman that I have seen on several occasions.  He is a very wise man, a retired lawyer, educated in England, born in Pakistan.  I told his son the day I met them both that he was lucky to have such a wise man for a father.  I have never spoken that way in front of an elder ever, but it was apparent to me.  The father taught me an arabic phrase, "Insha'Alla", which means "God willing" or "if God wills it."  In the Qu'ran, Muslims are told that they should never speak of something they intend to or plan to do in the future without adding "insha'Alla" at the end of the sentence as a reminder that it is ultimately God's will whether a thing happens or not, for He has the power to make all things happen or not happen.  I love this, because if we can live with this submission in our hearts, it allows us to be free from the illusion of control, and boy, if we can let go of THAT wheel for a while, THAT is a pathway away from suffering, indeed.

Anyway, this wise gentleman has been in and out of the hospital on several occasions, and knowing his diagnosis, I knew that unfortunately, he was not long for this earth.  It had been a couple of weeks since I had seen him when I walked into his room yesterday.

I saw death waiting in the corner.

The man was beaten, this time he would not emerge from this room alive.  He lay in his bed, propped up, but crumbling.  His countenance brightened when he saw me, for we have enjoyed each other's company very much on each occasion.  I played my guitar for him, and as I played, I couldn't help but think about the Little Drummer Boy...

I played my drum for Him pa rum pum pum pum 
I played my best for him pa rum pum pum pum, rum pum pum pum, rum pum pum pum
Then He smiled at me pa rum pum pum pum
Me and my drum

I felt like that little boy yesterday.  I wasn't a doctor, or a nurse.  All I had was my quiet little guitar, but boy, I played my guitar for him, and I played my best for him.  As I played, one of his sons who I just met for the first time reclined his bed, and he fell asleep.  As I said goodbye, he remained asleep.

I didn't know if I'd see him again.

Today, I returned to his room, expecting worse, and I found it.

Death was now up hanging on the rails of the bed.

My wise old friend lay back, eyes rolled back in his head, dispondent.  His younger son that I met initially (around 25 years old by the way) was in the hallway with I'm guessing his uncle listening to a resident ramble on nervously," there's just nothing more we can do..."

The talk.

I walked up to my old friend and told him I was here to play for him, but this time, no response.

I got my guitar, but this time it was time for me to say goodbye.  Have I told you about the hymn that was written through me intended for hospice patients?  I say through me, because it may have come out of me, but it is not by me.  All the lyrics and chords came at once one day in 1999... at a time in my life that I was very far from church.  It's the hymn I played while my church member began to cross over.  It's called "His Love is Everlasting."  Here  are the lyrics:

His Love is Everlasting

When you feel God’s light upon you
Radiant beams they surround you
Leading you home
When you feel God’s arms around you
Safely and soft they enfold you
Leading you home

His love is everlasting
Though at times you may feel afraid
But his arms are always around you
Leading you home
When you’ve gone astray

When you feel god’s love inside you
Fire from within it warms you
Leading you home
When you feel God’s hand upon you
Strength from his touch is feeds you
Leading you home


When you feel God calling to you
Listen and hear him guide you
Leading you home
When you see God all around you
You see all the people that love you
And now you are home



Anyhow, I sang this song to my old friend, because this was the moment the song was written for.  Then, I sang the first two verses from "Be Not Afraid."  What's a christian singing a catholic song to a muslim for?  Sounds like the beginning of a joke.  Well, last time I checked, the first 5 books of the old testament in a christian or catholic bible are also in the Qu'ran, so I tend to believe we have more in common than we think regarding the foundations of our faith in God.

God/Allah is all powerful
God/Allah loves us
God's/Allah's promises are rock solid
Following God/Allah's way is the path to Heaven beyond

Sound like pretty good pillars to build fellowship upon.


By this time, the son and uncle were back in the room.  I finished singing, and I played a little instrumental guitar, and then it was time to stop playing.  I knew that I do not come back on service till a week from now, and that this would probably be the last time I play for my wise old friend.  I chose my final key and final chord in that key very purposefully, and allowed my final chord to ring, sing, and float into every corner of the room and every cell of his body.

Death, you may be here, but you shall not take my friend in silence.  You shall take the music with you, and in doing so, it will make the trip easier for both of you.

I walked around to the side of the bed the wise old man was facing.  His head was craned to his right.  I touched his hands on his chest, and said, "I'll see you again my friend... Insha'Allah," never intending that it would be in this life.

With this, his eyes opened, rolled around a little and fixed on mine.  His face lit up like a fire cracker, with a smile stretching from ear to ear.  A soft, harmonious coo came from his chest, not unlike the sound my infant son makes when he is happy.  It is the sound we make when we are radiating happiness.  He rolled onto his back and lifted his head and beamed.  His son was there the day his dad taught me this phrase over a month ago, and he delighted in the moment.  I said, "See?  Never too old to teach a young man something new!"

The pride on the father's face... giving, teaching, transforming even on his deathbed.  Knowing while he still breathes, he makes a difference. He MATTERS.

As I walked past the son, I put my hand on his shoulder, and gave him every ounce of love and empathy I could.  I gently squeezed his shoulder, and through that squeeze I said, "My brother, I sat where you sit.  I felt what you feel.  I am with you."

Today, I got to be for him who Enya was for me.

Full Circle.

I love this family, and I hardly even know them.

I bet you can relate to that.

God night.

Sunday, November 27, 2011

November 27, 2011: Back to it...


It's Sunday night, the end of a long, mostly fun-filled (I think?) week.  Ali was off from school all week, which was nice because 1) she and Angelique got to spend some serious bonding time in the kitchen cooking up Thanksgiving tastiness, and 2) I picked up a cold and not having to get up an hour early to get her off to school helped me rest.

Well, an hour and a half into my Sunday post, and some glitch in the almighty internet just sent my words into no-man's land.

We're watching the Hallmark Channel's production of Mitch Albom's "Have a Little Faith."  It's good to be with this work again.  Ang and I listened to this book and I listened to it driving to Minnesota on the way to BMT.  If you haven't read/listened to the book or watched the movie.  You should.  It's very inspiring.  It's what I need right now.  In fact, I'm gonna get back to it and say that take the time to get acquainted with this story.

Thanks mom for giving me my copy.

God night.

Thursday, November 24, 2011

November 24, 2011: Happy Thanksgiving!


Happy Thanksgiving to ya!  This holiday, I am most thankful for my amazing family.  Our three kids continue to inspire us on a daily basis.

We are chilling out watching a NEW Charlie Brown special!  Ah... The Peanuts gang... feels so... nostalgic.

We had a nice Thanksgiving Day at home.  Ang and Ali have been prepping and cooking all week, so today, we were in full gear preparing for the big meal.  Ang's parents joined us for dinner.  Ali and I made place settings, set the table, and stayed out of the kitchen as much as possible as mommy was a woman on a mission!

I had the honor of slicing the turkey, and thanks to some great new advice from Alton Brown on the food network, I am no longer intimidated!  He demonstrated a super easy way to dismantle the turkey in seconds.  It was awesome!  I felt super empowered!  It was amazing.  His advice was sooooo simple; it's funny how you can look at something for years and years and only see one way to do it, then someone comes along, and in about 30 seconds, completely dismantles what you thought possible.  Great metaphor for living and growth!

P.S.  Notice the FOUR dessert items... there were only 4 adults and Ali at the table!

In the PUCK arena, I got some really great news worthy of thanksgiving yesterday.  In June, Ang, Lonni & Jay Mooreland, and I met to officially organize PUCK & draw up a strategic plan.  In contrast to my pie in the sky notions of raising millions in 6 months, we came up with some realistic fundraising goals for the first three years.  It was June, and we were 6 months in to the year already, and had raised $26,000 year to date.  We decided to pick $50,000 for the year.  We had no plan as to HOW to do it, except that we would just stay in action.

Yesterday I found out we've raised $50, 091.00!

That's 50k that goes straight to Dr. Tolar and Dr. Wagner at the U of Minnesota.  We love the fact that we know exactly where every dollar goes.  In addition, we don't take any salaries for our work in PUCK, so we don't burn any money raised on us.

Now to the important part...

There is no way we would have hit that number without YOU.  The vast majority of that money raised was raised online.  THANK YOU for all that YOU did to make that goal a reality.  We are so grateful to still have you in our lives.  We had no idea that over a year after Bella's death, and over two and half years since we started this blog, close to a thousand people a day would be reaching out over the internet and connecting with us.  We are so grateful for this.  Thank you for keeping our paths crossed.

What are you thankful for this year?

God night.

Tuesday, November 22, 2011

November 22, 2011: Blink, Blink...



Sorry about that!  My bad.

I took an unannounced week off from posting!  I traveled to Atlanta on Thursday and returned home on Sunday, and posting on travel days doesn't always seem to work out.  I attended the national conference for the American Music Therapy Association.  I was a presenter on Sunday, but as VP of the Western Region, I have to sit in on meetings that begin on Thursday before opening session.  It was great to be with all my colleagues.  There were probably about 1,500 music therapists on hand from all over the country, and a few international MTs as well.

I had lots of fun learning about amazing therapeutic applications for the iPad.  The infusion center I work in was gifted 5 iPads, and they are being underutilized, so I am going to request some funding to load some relaxation and music instrument apps on them.  Then, I will teach the nurses how cool they are for the patients.  Once the nurses realize their potential, I think they will talk them up a lot more.

We had a really great business owner's networking session, too, where I got to meet and hear about other  music therapists who are also entrepreneurs and all their successes!  It was REALLY inspiring to hear their stories.  It also confirmed what I knew to be true in my heart which was that there is a group of MTs who are embracing the business and marketing elements outside the clinic and enjoying that part of their career as much as delivering tremendous value to their clients/students/patients.  I KNEW they were out there!  I have connected with a few out here in the west, but to meet a whole SLEW of them from all over the country at one time... it was really inspiring.

On the home front, we are working away on getting invitations ready for our inaugural PUCK luncheon on Wednesday, Jan. 11 at the Anaheim White House.  If you live in southern California, or have friends or family who do, won't you join us?  Daylon's mom Jennifer is speaking, and we will have either Dr. Wagner or Tolar speaking via a taped video as it looks like they can't make it out.  Since we were gifted the luncheon, they picked the date, so we just have to make do.  In a perfect world, we'd plan it around the doc's schedule, but it's alllllllll good.  We are GRATEFUL to receive such an amazing gift, and will gladly use technology to bring them to us.  If you are interested in more info, shoot me an email at Timothy@puckfund.org.

Thanks to all who have prayed for the end of thrush, because (knock on wood) it seems to have finally left the building!  YAY!  Ang is still using some meds as is Julian, but it seems that he is off the bottle and back in momma's arms!

Turkey preparations are underway here in the house.  Ali is home from school this week, so it's been really cute to watch her and momma planning Thanksgiving dinner, going to the store, already cooking sweets, watching food network together, the whole bit.  It's been a great bonding time for the two of them since I've been either out of town or right back to work at the hospital.

Ali's been missing her daddy, and I brought one of her stuffed animals to GA and took pics of her in various places and texted them back to momma to show Ali.  I even placed her "Chenna Cheeta" on the podium when I gave my presentation.  It was on determining, articulating, and ranking your core values, and since family is so important to me, I gave Chenna as an example!

Chenna looks on while daddy shows off his Fabulous Socks of the Day...

I am looking forward to the break this week.  I'm clearly running on empty.  I don't get sick much, and when I do, it's my body's way of saying, "HEY!  calm down, monkey!  I am NOT keeping this pace up any longer!"  to which I sheepishly reply, "okay... I'm sorry."  I like to have a lot on my plate; it keeps things exciting, but I over-extend like the best of them, and need to pull back on the reigns from time to time.  I really look forward to hanging with Julian on Mondays and Fridays for the next 6 months.  That's gonna be a nice change of pace.

Happy Thanksgiving to you.  I have a lot to be thankful for, and I bet so do you.  The key is to sift through all the noise to find all those blessings hiding in plain sight. God's work is to put them there, and our work is to see them!  Remember, it's not "seeing is believing," it's "believing is seeing!"

God night.

Tuesday, November 15, 2011

November 15, 2011: Running... Down...



Running too fast.

Need to slow down.

Cutting back to 3 days a week to care for Julian part time when momma goes back to work next month.

Can't wait.

Family First.

Been playing 'catch-up' with my business.

Don't EVER wanna play catch-up with my family.

Business can wait.

Regarding music therapy...

Many hospitals (including the one I currently work at...) in the U.S. fund music therapy directly without reimbursement from insurance.  Many hospitals also utilize volunteer musicians to come play.  Not the same thing, but a great start. There is plenty of room for melody in any hospital, and frankly there are more musician volunteers than music therapists.  They help meet the needs of the community.  The music therapy can't meet the needs of the community by ourselves; there are less than 10,000 of us nationwide.  I just wish the volunteer programs would at least consult with music therapists as to the possible contraindications of using music in such a fragile setting.  That can't be mandated, it can only be offered, and it's up to the volunteer programs to accept.  There's room for us all, though.

The difference between the two?

Musicians entertain.  They perform for patients, and the attention is on the performer/performance.

Music therapists treat medical conditions in patients using music as their treatment tool/modality.  They work/play with patients, and the attention is on the patient.

Same medium, different context.

Need sleep now.

God night!

Sunday, November 13, 2011

November 13, 2011: Vroom Vroom...


... that is the sound of life revving its engines at me.

This week I travel to Atlanta for 4 days for our American Music Therapy Association's National Conference.  I am a regional vice president of the association, so I'll be in lots of meetings, I am presenting a session on determining and articulating your core values, and have the honor of co-facilitating a 200+ person drum circle with a team of 8 led by Mickey Hart, one of the drummers from The Grateful Dead!  THAT is going to be mind-blowing.  I'll tell you why after it's done... Anyway, it'll be great to reconnect with so many colleagues from around the country that I only get to see once or twice a year at best.  I hope to meet a bunch of new colleagues as well.  Meeting new people is one of my favorite things in the world to do!

There is another piece of the trip that I am beyond excited about.  It's kind of a long story, but many of you know that I am a certified NICU Music Therapist, and there has been a revolutionary device in the works for several years now that is going to be a game changer for late term preemies who are having trouble feeding.  Anyhow, I have been patiently waiting for this device to make it to market, because I have always wanted to be a part of bringing it to the west coast NICU world.  Between my sales and marketing background, being a NICU MT, and a NICU parent, God has prepared me to share this new device in a way that very, very, VERY FEW people are equipped to do.  Again, I can't share too much yet, but I get to meet the team that has brought it to market at long last; they're going to have a booth at conference.  I spent an animated and inspired hour on the phone with the product specialist on Friday, who has 20 years of clinical NICU experience, and we completely hit it off.  My biggest challenge is that my plate is so full of opportunities, I literally have been shelving projects left and right that have come up in the past 3 months.  I really want to give this my all, but it's going to mean some tough decisions on how much I can participate in other areas.

One thing that has been tugging at me is the tug of war I'm having over how best to raise money for the U of M.  In one camp, there is the charity model.  For example, we have our next fundraiser on January 11, called Wings of Hope.  It's the luncheon we were gifted by on of CNN's Top 10 Heroes, Chef Bruno Serato from the Anaheim White House.  I imagine that the Hageboecks and friends never imagined that 31 years after their initial benefit concert to honor their daughter, that they would break the million dollar mark and raise over one million dollars in one night.  That's what happened when we were in MN this month.  Wow, that is powerful.

Then there is the philantho-preneur model, where you just go out into industry, make a lot of money providing a lot of value, and funnel a large chunk of it directly to your foundation of choice.  I feel like if I try to do both, neither will get up the critical mass to "pop."  Currently, I am trying to do both; for when I just focused on PUCK over the winter and spring, it was just too intense... albeit I was in a different space of grief, and I can't imagine NOT working on PUCK.  Only God knows the right answer, and she's currently letting me wrestle with myself to find it.  No hand-outs going on over here, despite my asking for one!  LOL.

Oh, God, why must you be so coy? ;-)

Sorry for the open rant.  Sometimes I'm good at keeping to the what's happening stuff, and sometimes I just drift off in my head out loud.  Thanks for listening.  Blogs can be very cathartic!

Last, I had the joy of playing guitar with the praise band at our new church today.  Man, that felt good.  the director has been here for 12 years now, and so it is really easy to just slide right in.  I looked up during the opening song and saw Ali in her pew looking at me, dancing and singing.  Her face was glowing.  That was just about the best moment of the day, aside from when she told me how much she LOVES CHURCH.  That just makes my heart so happy.  Ang and I feel so strongly about raising her inside the church family, and the community, youth program, and music program are so outstanding, we feel like she's in the right place.  We're in the right place.  That's a good feeling.

God night.

Friday, November 11, 2011

November 10, 2011: What is the sound of one hand blogging?


The only thing major to report since Tuesday is that there was one family member missing from the pictures.  With no further adieu, thanks to our friend Sara cooper, I give you Julian...

God night!

Let's add Ali...
and Bella...

Tuesday, November 8, 2011

November 8, 2011: Happy Anniversary, Honey!


Well, here we are, another year in to this amazing marriage.  In taking a play out of another couple's playbook whose marriage we absolutely respect and try to emulate (my big sister Mary's), we watched our wedding video tonight with the kids.  Ali got all excited and dressed up in a made up wedding outfit and started throwing the centerpiece as her bouquet!  Totally cute.  Her groom?  Julian, of course.  Too cute.  

When we were dating, Angelique and I created a vision for our relationship.  It was the following:

"Love Freely Expressed, and Dreams Realized."

That was our mantra, our means, and our end.  There is more to it than that, though.  There is one major piece that was added when we recited our vows...


Like Butch Cassidy and the Sun Dance Kid, fighting the world back to back, we stand as one.  You know those Chinese finger torture devices?  What happens when you pull your fingers apart?  They tighten.  Imagine our marriage bond as the device, and each finger as each one of us.  When the stress of life attempts to pull us apart, our marriage pulls us together.  This is a conscious move, and we set it in motion like a computer "if/then" program.  If life pulls at us, we get tighter.  period.

Life has pulled pretty hard, but thanks to this programming, we just got tighter.  Keep in mind, BOTH PARTIES need to agree to this.  It truly takes teamwork.

Relationships develop along accidental, circumstantial, or consciously created lines.  Which way are your relationships growing?

I love you, Angelique.  You are the most beautiful, intelligent, easy going, and POWERFUL woman on this planet.  Thank you for an amazing marriage and family.  My life is constantly increased by you.  I have become the man I am by being inspired by the woman that you are.  Thank you for being such a great partner,  and for infusing respect, generosity, and love into our relationship day in and day out, even if you don't think you do.  I love being married to you, being your husband, and the daddy of your kids.  It's an honor and privilege to walk through this game of life together with you, and here's to decades more!

God night.

Sunday, November 6, 2011

November 6, 2011: Dawn of a Dream...


Well, we're back home, reunited with miss Ali and our pets.  Ali missed us and vice versa!

It was great being back in Minnesota.  It is our second home for sure.  It was great to see new babies, see old friends, even one of our friends delivered their first born yesterday!  Congrats, Jeremy and Renee!  However, that was all side helpings to our main reason for going...

... date night!

LOL.  Just kidding.  Although, it was our first date since Julian was born!  Thanks again to Ali's teacher Lanai, who has become a good friend, for coming to the hotel and babysitting Julian while we wined and dined downstairs.  Dawn of a Dream has been held at this historic landmark in Minneapolis called "The Depot" for the past several years apparently.  It has two hotels, an ice rink, and an indoor water park, all in downtown Minneapolis.  It's a beautiful old property, and from our window we could see the Stone Arch Bridge, another one of Minneapolis' landmarks that spans the Mississippi river.

It was a grand event, and I FORGOT MY CAMERA upstairs in our room!  I had it in my pocket, but then I handed it to Lanai to take a picture of us with Ali's toys before leaving, and didn't take it back.  Ali gave us two of her toys to help keep us company while she wasn't with us, and I promised I would take pictures with them in Minneapolis to show her what a good job they did taking care of us...

Totally fired.

I snapped a couple of pics with my camera phone, but they mostly came out really blurry.  Luckily, Jay Mooreland took this video of my 60 seconds in the spotlight (literally).  They had a TV camera on me and the three guests each spoke from their chairs with their faces splashed up on the giant screens.  It was weird because I couldn't see anything due to the blinding light in my eyes, and I couldn't really hear myself, because a split second after I spoke, my voice was reverberating around this giant converted rink across the PA... it was weird.  I just pretended (upon my amazing wife's encouragement) that I was in the shower rehearsing, like I did earlier that evening. Here it is...

What was really special though, was when Dr. Wagner got up to speak, he referenced me in his speech, and he named all the EB angels who have earned their wings in the study BY NAME, one at a time.  What makes this so special is that he wasn't mentioning cancer patients' names, he was mentioning EB patients' names, and this is a fundraiser for Children's Cancer Research Group.  Lonni and Jay Mooreland, and Ang and I got to hear our little girls' names mentioned to 850 people, and we were so proud of our little girls, but also so sad to hear their names be part of that list.

As I looked around at the amazing decor for this event during soundcheck, I saw an AWESOME picture of Charlie Knuth.  If you don't know his story, you can READ IT HERE on our website.  He is truly one of the great success stories of this evolution of bone marrow transplant.  And while I am so happy for him and for his family, part of me wished it was Bella's picture up there.  I told Ang I felt like Jesus in the Garden.  I just wished that the cup could have been passed over us, but given that it wasn't, it's our job to stand in our faith and be of service to God and to all the kids and families with EB present and future, and keep writing, traveling, speaking, hosting fundraisers, until that one day where, like I said above, EB kids outlive their parents.

I had a parent come up to me last night whose child is a cancer survivor, and he thanked me for all we are doing in honor of our daughter.  He gets it; because of the millions of dollars the Haeboecks have raised over the years, his child was the beneficiary of that research and is here today to enjoy whatever life has to offer.

There are a lot of things that money can't solve, but there are also a lot of things that money can.  Last night, CCRF raised $970,000.00.  In. One. Night.  Tomorrow, the researchers at the U will literally be going to work on a new treatment that they have been waiting for funding to pursue that will be a game changer in the leukemia battle.  It is really exciting when you can see how and where the funding will go, how it will make a difference, and how this research sets a new baseline for treatment and care.  It's not like a consumable experience... it forever changes the way we care for our kids.  I never really thought about it all like that until last night.

What these new treatment breakthroughs REALLY MEAN for families of newly diagnosed kids is HOPE.

Hope changes EVERYTHING.

Man, it is good to be in the business of creating hope for others.  THAT is a good use of time, money, and energy.

We also got to see a lot of Bella's treatment team last night for the first time since we left the hospital last October.  That was really sweet; they couldn't have been nicer (I avoided Dr. Doom, though).  They couldn't believe their eyes when they realized it was us!  They were really inspired by Bella, and inspired by us coming back to still support them, despite what happened to her.  I work in an adult hospital and see my patients die every week, but for the most part, they are fully grown adults who have lived lives, had families, etc.  These docs take on rare and incurable childhood diseases and while trying to crack the code, watch children die while they're at work.  How they come back to work the following days, weeks, and months and not give up till there's a cure... they inspire us.

Last night I saw the partnership between doctors, parents, their friends and families, and the community at large.  It was one big family united to make a difference in the lives of children.  That's a pretty inspiring bunch to go hang out with.

The other piece that was equally inspiring was the ages of those in attendance.  There were two generations there, our parent's and ours, and ours was just about in equal attendance.  What I saw last night were thirty-somethings already involved in philanthropy.  Diane Hageboeck said it best to me last night when she said, "Tim, no matter what, you have to make it fun."  She was talking about the entire journey.  If you make it fun, people will want to come and play.  I like that.  I can be pretty intense and serious at times (uh, understatement?), but inside, I'm just a big kid walking around in grown up clothes and a grown up body.  So, I really like that mantra.

I also gotta tell ya how GREAT Julian was the whole trip!  He was a CHAMP!  He was totally quiet on both flights, happy for the most part, slept for a lot of each flight... just easy going.  He slept in the hotel room in a pack 'n play as if he was home... only got up once each night for a bottle for maybe 30 minutes!  CHAMP!  Thank you, J-Man for being so AWESOME on your first road trip!

Alright,  I'm beat.  Time to go to bed.

God night.

Thursday, November 3, 2011

November 3, 2011: On the road again...


Angelique, Julian, and I depart for Minneapolis in the morning while Ali departs for school, then a weekend trip to grandma's!  We are attending Children's Cancer Research Fund's annual Dawn of a Dream gala dinner.  This is their flagship fundraiser that began 31 years ago as a way for some friends to support and honor their friends and the loss of their daughter.  Simple enough, right?

This is their story:

It Began with a Simple Request...

Katie HageboeckIn December 1979, Katie Hageboeck lost her 16-month battle with leukemia. She was only 13 years old. Before she died, Katie made a special request of her parents, Diana and Norm Hageboeck. She asked that Children’s Cancer Research Fund® be named as her memorial fund and that the money she had been saving for a new 10-speed bike be donated.
Diana and Norm did much more than donate Katie’s money. With the help of friends, they began organizing the first Dawn of Dream® benefit concert in 1980. The event, which was then held in 1981, raised more than $50,000 for Children’s Cancer Research Fund.
For our first 15 years, Children’s Cancer Research Fund raised funds for world class research at the University of Minnesota as part of the Minnesota Medical Foundation (MMF). Donors grew to 2,000 to 3,000 each year, and annual program spending on research and education grew to close to $1 million. In 1995, Children’s Cancer Research Fund became its own 501(c) 3.

...And Grew into Something Amazing

In 1999, Children’s Cancer Research Fund made the decision to take its inspiring mission to a national audience, and grow its donor base by investing in a national direct response fundraising program through direct mail. This resulted in a four-fold increase in funds raised in just 2/3 the time. Since then more than $50 million has been raised for cancer research, which resulted in an estimated $500 million in additional NIH funding for the researchers we support. An additional $21 million has been raised for patient support and education initiatives.

Angelique and I had the honor and privilege of having dinner with the Hageboecks when we were in MN in June, and it was THE most inspirational meal.  In the end, we're just parents who 1. fought tooth and nail for our children's lives and 2.  when that was no longer possible, fought tooth and nail to make all other children with the same condition's lives better.  I know we all fall into number one, but apparently not everybody falls into number two.  

Here's the best part, though... as parents, we are simply inspired by our own children.  Katie's request set in motion a tidal wave of events... and for me, watching Bella's strength, wisdom, and grace has set in motion a new wave of events... it may only be a ripple in the pond right now, but our promise to her is that it becomes a tidal wave.

I have the honor of being one of three guest speakers at this year's event, albeit a very short speech.  Nevertheless, I get to share Bella and PUCK with EVERYONE there, and as a proud papa, I am so grateful to share my family with this much larger family that has been giving of their time, talent, and treasure for decades now.  It really is an honor.


There is so much to get done before getting to bed tonight, but I have to tell you two short stories from the past 24 hours that illustrate God's Providence at work.  Remember the Providence Story of the Day? For those who followed this blog when Bella was born, you remember.  For those who have begun to follow this blog after August of 2009, during Bella's first 3 months of life, I blogged daily about witnessing God's Providence in action in our family's life.  This is the entire basis of my book, Bella's Blessings: a humble story of Providence.  All the stories are chronicled in it, and they are amazing.

Yesterday, I had the honor of playing graveside for one of my patients from the hospital.  When I first met her, I played Iz's version of "Somewhere Over the Rainbow" on the ukulele.  When I did, the whole family became very tearful, and when I attempted to process with them, they were really quiet and wouldn't explain why they all got so sad.  I felt really bad that I had opened up these emotions and then wasn't able to process them, and felt like I really let them down.  

Lo an behold, on Monday I get a phone call from the hospital saying that this patient had died, and that the family asked if I could play at the funeral.  I left a message on an answering machine and didn't hear anything back.  Then at 10:30pm Tuesday night, I get THE voicemail.  The funeral is the next morning.  

The reason for the tears?

The patient - for the last TEN YEARS - has been telling her family she wanted THAT version of THAT song played at her funeral, and then this music therapist pops into her her room and plays it for her.  To them, it was God's gentle way of saying it was time.  

If the funeral had been on Tuesday or today, I wouldn't have been able to do it, but thanks to some wonderfully flexible coaching clients, I was able to be there at graveside, playing my uke, singing THAT version of THAT song... just as the patient had always wanted.

Well played, God!  

This morning, I had a patient who is literally missing half her brain after major brain surgery.  The doctors said she would never walk again.  The night after her surgery, she recalls that she heard God command her, "Rise up, my daughter, and walk."  So she got up in her hospital bed and started to get out of bed.  Unfortunately, no one had told her she was supposed to be paralyzed.  ;-)  The doctors came rushing in with the nurses genuinely proclaiming a miracle.  There was no "scientific way" that she should have been able to get out of bed.  Today, she drove herself to her treatment, and is a ball of light, joy, and energy, despite her circumstances, which she has quite a few of.  

She gets to share God's power every time she opens her mouth.  Talk about credibility!   She is missing a GIANT portion of her brain, and you can tell; her right temple is completely caved in, and you can see that there is some serious brain matter and skull missing, but it's not causing her to miss. a. beat.  

Folks, you can't mess with that.  That is a good old fashioned, real-deal miracle.  Because of her faith, everyday, she gets to tell others about it, and thereby bear witness to God's power.  She gets to bring God right into people's faces, and confront their doubts and fears head on.  She is so filled with gratitude for this opportunity, by the way.  

Circumstances don't dictate whether you feel blessed, cursed, or just stressed.  You do.  

God night.

Tuesday, November 1, 2011

November 1, 2011: Happy Belated Halloween!


Enjoy the pics.  Ali hit the neighborhood with her kindergarten buddies, then ran into three more of the crew from her class along the way.

It was just about the cutest thing ever.

Life is good.

God night.

Man, Bella loved her big sis...