Tuesday, October 30, 2012

October 30, 2012: Happy EB Awareness Week!


Holy cow, time just flies faster and faster!  I hope this update finds you all well.  My prayers go out to those of you caught in Sandy's crossfire.  I hope you're okay, your families are okay, and that you have what you need until life returns to normal in the aftermath of one heck of a storm.

SO much to write about.  I apologize for slacking.  The travel schedule has been brutal and non-stop.  I've been driving back and forth to Phoenix to rehearse for this weekend's reunion/benefit concert to wrap up EB Awareness Week.  I can't believe the show's almost here.  I've been rehearsing and preparing for it for FIVE months, and I feel close to ready, but there are some details still getting ironed out, and I am mighty stressed out.

PUCK held EB Awareness Week in style at the University of Minnesota this year!  I am so excited as this is something we had envisioned over a year ago, and finally the timing was right.  We had an EB Awareness booth set up in the student union on campus all week.  Literally hundreds and hundreds of business cards with our website and text to donate campaign were handed out, and countless amazing conversations were had with those who stopped by the booth.  Big thanks to Christie Zink, Jen Nick, Courtney Billing, Kasey Guenther, and the Alpha Gamma Delta sorority for all the hours of preparation and time donated to raise awareness at the U about such great work being done there.  Of the many stories I heard back from the ladies, many of them revolved around this sense of school pride that students felt after learning what meaningful research was being done right there at their own school.

In other PUCK related news, our new Relationship Manager, Christie Zink, has been nominated in a Yahoo "Women Who Shine" competition!  The grand prize is $10,000, and Christie has already promised Dr. Tolar that if she wins, she's donating the money to his research!  PLUS, there is still about $80,000.00 left on the table in the matching grant challenge, so that $10,000 will become $20,000 for EB research...

...if she wins...

Here's where you can help make that happen.

Christie was in the lead for a while, but some others have come on strong over the weekend and knocked her out of first place!  Would you help her regain the lead?  CLICK HERE to vote.  The catch is you have to sign in, but you can use your facebook account or google+ (I think) account to do so - you don't need to fill out a bunch of fields.  I just linked my facebook profile by clicking on that option and it was EASY.  Please take a minute and vote for Christie.  First of all, SHE DESERVES IT.  The woman is a TIRELESS ADVOCATE for EB and isn't even an EB parent, bless her heart.  She routinely manages multiple fundraisers and awareness campaigns on and off line, and just gets it done because it needs to be done.  Even though we've only officially announced her position at PUCK recently, she has been working her tail off all spring and summer on several campaigns and still found time to fly to FLA to take pictures for DebRA at the Patient Care Conference.  Her heart is as big as the state she lives in (MN), and she does all this while raising 3 small kids while her husband travels for work!  (She still won't reveal her secret on how she gets it all done...)

Again, CLICK HERE to vote for Christie, and thank you in advance for this.  Also, please share the link on facebook or your blog or email list, whatever works for you!  Here's the link:


Alright.  Need sleep.  Please say a prayer for those whose lives were turned upside down this week by Sandy.  While I stress out about our concert, I am reminded how lucky we are to be having a concert this weekend in the first place.

God night.

Monday, October 15, 2012

October 14, 2012: On the road again and CHOC Walk!


Well, tough week, not gonna lie.  Thursday was the 2 year anniversary of Bella's reunion with heaven. Ang was home balancing work and kids and I was holed up in suburban Chicago for our music therapy national conference.  I took that morning off so I could have some me and Bella time.  I was planning on going for a run or walk on the golf course at the resort where the conference was, but when that morning arrived, all I could do was just hide under the covers.  I just couldn't get out of bed.

And that's okay.

That afternoon, I was teaching business marketing and networking skills with some colleagues to about a dozen fellow music therapists, and we needed some extra copies of some handouts.  Our breakout room was W-A-Y off at the end of the property, so it was a LONG walk back to the business center.  Because the weather was fairly warm and sunny that afternoon, I opted to walk back to the biz. center along the golf course...

... and the neatest thing happened.

As I was walking, I smelled Minnesota, particularly Como Conservatory, where Bella's MN memorial was.  One might say that the trees in IL resemble the trees in MN far more than CA... so I immediately picked up on the smell of falling leaves mingling with still-green grass.  In the late afternoon sunshine, I breathed in MN and Bella with every breath I took walking back to the business center, and again on the way back.  It felt like God or Bella's way of helping me feel connected to something somehow, given how DISconnected I felt that very morning.

God loves to hand out those little marathon cups to us all as we are running this marathon of life.  He doesn't give us a gallon of water, just enough to keep us going.  Who can run with a gallon jug anyway?

Yesterday was the 3rd annual CHOC walk for Team Bella!  Many thanks to our friend and photographer Sara Cooper for setting this up again, and to grandma and grandpa, and Susie and Steven for walking with Sara, Ang, and the kids.  Again, it was tough not being there, but the pics are just so wonderful that just seeing them made my heart melt and make me feel closer.  Thanks again, Sara, for not just setting up the event, but capturing it on stunning photography!

Enjoy the pics.

God night.

Sunday, October 7, 2012

October 7: Go Time...


Hi gang!  Sorry I'm down to posting every other week right now.  We are in the busiest 6 weeks of our already busy year around here!  I think I am home one weekend in the the next 5 weeks.  I was in Phoenix this weekend for rehearsal for our PUCK benefit concert on Nov 3, then this week I'm in St. Charles, IL for the American Music Therapy Association National Conference where I'll be presenting on a couple of topics, attending board meetings, and learning as much as I can from fellow music therapists on all kinds of topics.  Then, I'm home for a week, then back to Phoenix for more rehearsals, then the following weekend is the concert, etc.   Ang was on the road all week this past week, got home  Friday night, and I left 12 hours later and just got home a couple hours ago myself.  No grass grows under our feet, I tell ya!

This Thursday marks the two year anniversary of Bella's passing.  On Sunday, Team Bella is walking for the third year in a row in the CHOC Walk.  CHOC is short for Children's Hospital Orange County, and it's the NICU where Bella spent her first 12 days.  Team Bella is being led by our dear friend Sara Cooper, and if you'd like to walk or donate go to her fundraising page by CLICKING HERE.   I will be in IL Wed - Sun eve, but Ang and the kids will be there this year for the first time.

This business trip is gonna be a drag; I'm gonna be pretty cut off from family on the anniversary of one of the most intense days of my life.  My heart just started aching in my chest from typing this.  Last year, I took the day off and got a massage with a gift certificate that I had been given and never used.  Then, we had a beautiful ceremony in our neighborhood park with friends, family, a balloon release, and some of the most beautiful words ever uttered by one Ali Ringgold.  Rats.  Just thinking about how beautiful that was is now really bumming me out.

I realized during the trip to Santa Fe and the experience hearing "Claire de Lune" for the first time since Bella's memorial, that I tend to dissociate from a lot things that are related to the trauma related to her life and death.  This Thursday completely snuck up on me.  I am co-presenting a continuing ed half day workshop on marketing on Thursday, so I have seen "the date" in emails, on the schedule, in my calendar... the whole bit, and it wasn't until maybe about 10 days ago that it HIT me over the head where I would be on October 11, and where I wouldn't be.

Same thing happened with Bella's Birthday in May.  We had a weekend retreat for the regional board I sit on for the American Music Therapy Association, and again, it wasn't until THAT WEEK that I realized that Sunday was her Birthday and that I would be locked away in a conference room for most of the day.  Luckily, the retreat was only about 2 hours away.  I recused myself and the pres. and board were very gracious about me leaving early, for which I was deeply grateful.  This time, I'm halfway across the country.  Rats.  I retired from being a recording artist so that I wouldn't be traveling all the time and missing important family moments.  Well, my emerging career is causing the same thing to happen, and that bums me out.  It certainly pales in comparison to the prospect of being on the road for 6-18 MONTHS straight touring in a band, but, hey, Thursday is a pretty unique day in my young family's life, and I'd rather be here with them.

Please say a prayer for our family on Thursday that somehow we can feel connected.  Connected to Bella, and connected to each other.

I was planning on attending a morning continuing ed class on medical music therapy, but since the conference is at a resort with a golf course, I think I might just walk the course... maybe take my native American flute and find a quiet place and play for Bella.  That sounds like a better way to do the morning.  If you're a colleague of mine and you see me Thursday, gimme a hug, will you?  I'll need it. :-)

I continue to run straight toward whatever the next challenge, the next project, the next event, the next goal might be.  There is still so much sadness in my heart, and I somehow feel responsible for it.  As if I knew I was having a child with EB, as if I even knew what EB was before May 27, 2009! LOL.  Still, somehow I feel responsible for all the sadness I have caused my self, my family, my friends, etc.  As I write that, I am reminded immediately of Don Miguel Ruiz's seminal book, "The Four Agreements."  It is a WONDERFUL guide to living powerfully and gracefully.  One of the agreements is "Don't Take Things Personally."  In other words, I can hear Don Miguel's beautiful, quiet voice saying, "Tim, don't make it about you that you fathered and parented a child with EB.  You were a supporting character in Bella's Journey, and you played the hand you were dealt as her daddy pretty well given the circumstances.  That's enough.  In fact, that's plenty.  Don't take on any more than that."

It's as if sadness is wrong or bad, and therefore, somebody's fault.  Like, it's _______'s fault that I feel sad... as if someone or something did this bad thing to me... making me feel sad... how DARE they! LOL... like feeling sad 'shouldn't happen.'  Something's broken and needs to be fixed.  A wrong needs to be righted... like that.  What a product of the happiness-obsessed culture I am!

Know what?

It's okay to feel sad.

It's a normal and natural reaction to an event related to someone or something I care about.  It means, I care.  In this case, it means, I love.  I STILL Love.  Who knows?  I might feel sad about Bella's death at this time or another less significant time of the year for the rest of my life.  That's okay, too.  It is well for me to remind myself that I also feel happy about Bella's LIFE many, MANY times throughout the year, too.  Tonight, at the dinner table, Julian babbled in a big, booming voice in a way JUST LIKE Bella used to do.  It was the sweetest melody my ears heard all week.  I recognized that tune... Bella wrote it back in 2010.  It went, BLAH BLAH BLAH BLAH BLAH!!!! at full volume, and it was amazing then, and it was amazing tonight.  Julian's first cover tune! HA!

Good stuff buddy.  You chose to cover one of the greats.  Your big sissy Bella.

Life is Good.

God night.

(When Ang took these photos, she also snapped some video and it's from this very moment that the BLAH BLAH BLAH reference comes from!  What's really providential about all this is that when I pick the picture to end the post with, I scroll through my old pics of Bella and move chronologically through them.  I wrote the above post, then went to the photos, and BAM, these were the next ones!  NO joke!  How cool is that?)