Sunday, November 25, 2012

November 25: Worn and Torn...


Happy Thanksgiving to you all out there wherever you are!  I know that Thanksgiving is an American Holiday, but aside from the traditional turkey feast, taking a day to give thanks for *Anything* you've been blessed with is a good thing, wouldn't you say?  I am filled with gratitude for so much.  Life is good.  Our family is (I think) two weeks away from FINALLY slowing down.  It's been an epically busy fall for us... far more so than usual, even for us.  Ang has been traveling for work during the weeks, and I've been traveling on weekends going all the way back to August.  It feels like it's been non-stop.  It's not sustainable, but it's produced some amazing results.  You know me well enough by now to know that I'm not a jogger in the game of life, I'm a sprinter, and yes I do need a break, and I've got one coming.

So, what have we been up to since I last wrote you?  I think it's almost been A MONTH since I've posted... which might be a record long absence.  I think we were a week away from our benefit concert when I last wrote.  Well, that went amazing.  We had over 600 people attend and we raised over $7,000 for PUCK, which gets doubled to $14,000.00 thanks again to the EBMRF/JGSF Challenge Matching Grant that runs through the rest of the year.  Those are just the numbers, but let me tell you the stories that make those numbers even more special.

1.  The tickets were $15, and we had just under 500 but tickets.  The rest were guests who donated items to the event or volunteers/bands/stagehands, etc.  Two of the TEN bands on the bill are releasing new records right now, and they are only charging $5 for their CD release concerts.  $5 is the going ticket price, even for the hot bands in town, so to pull that many through the door at $15 a head was really an accomplishment.

2.  While I was backstage, listening to the singers from HEEAAAVVVYYY metal bands say things between songs like... "Epidermolysis Bullosa, EB, Pioneering Unique Cures for Kids, Bella..." with their growly, tough-sounding voices was the coolest experience of worlds colliding I've ever been a part of!

3.  So many people from so many local companies affiliated with live production, bands, tattoo parlors, etc. donated literally tens of thousands of dollars in equipment, raffle gifts, and professional services.  Many of these people have NEVER been involved in a charity event or donated to a non-profit before!

4.  We had a ten-man media team shooting HD video and stills for a DVD that will be released in 2013, and every single person on the team donated their time and talent, and the production manager is producing the video FOR FREE and he is PASSIONATE about selling the DVD and making sure 100% of the funds go straight to PUCK.

5.  This next one is intense, I warn you.  When Bella was cremated, I asked the guy to put a small amount of her ashes in a separate pouch for me. I had this wild idea that I would get her portrait tattooed on my chest, and I'd have the artist mix in her ashes into the ink.  Well, I don't have any tattoos, so as time went on, it just didn't seem like me.  In my old band, I wore liquid latex on my head, torso, and sometimes entire body.  During the course of the shows, as I sweat, the liquid latex would peel off in sheets, looking really gory, which worked really well with the vibe we were creating on stage.   Little did I know that years later, Ang and I would have a baby girl where that very thing happened to her, for real.  So, since this was a benefit concert in memory of Bella, and since I was donning the liquid latex again over my entire body, I decided to add that little pouch of ashes, so that she was a part of my skin that night.  It was a really, REALLY intense process, and I sobbed backstage as we got ready to paint me up.  This was truly an authentic way for me to honor Bella.  Art is taking the joys and sorrows of the world and representing them in some aesthetic way that only you can do.  This was the most intense piece of art I ever created.

6.  During one of our ballads, I created a slide show that told our story from Bella's birth to our journey with PUCK.  It had text and photos throughout it, and I choreographed it with the song. It played on a giant stage scrim above our drummer during the song.  It one point in the song, we hit the emotional climax of the tune, and it coincides with Bella's death.  As the music resumes, I put a few, special pictures of Bella's famous stare.  During one of the pictures, I turned around and looked up at her.  There were were, the two of us, on stage together at one of the heaviest heavy metal shows one could put together,  changing lives.  Angelique worked our PUCK booth at the concert, and even before the song was over, people started flocking to the booth to learn more, tears in their eyes on on their cheeks. Art makes you feel.  As a band, I honor and thank my band for completely supporting my desire to take a live crowd to such a sad place in order for them to feel the reality of this disease.  My band couldn't have been more supportive, and I owe each one of them a giant debt of gratitude for the support and sacrifice that it took to put this concert on.

I am a lucky guy.


Someone somewhere taught me that no matter what happens to me in my life, I get the last say.

I get to decide what meaning I give to the events unfolding before me.

I get to make art out of life.

I am not special.  Each of us has this ability.  The medium we choose in which to express ourselves is TOTALLY and UTTERLY irrelevant.  What matters is that THE CAPACITY lies within each of us.  We but simply need to remember this, and in the knowing of this one little thing, our lives can be forever transformed...

... by us.

What a gift.

In other PUCK news, we are hosting a brunch THIS SATURDAY, December 1 in Maple Grove!  It is called, WINGS OF HOPE, and will feature 3 amazing speakers, Dr. Tolar, Trisha Knuth, and Marc Seymour!  It is hosted by Christie Zink and Jenn Nick and tickets are only $15!  IF you are interested, there are tickets still available!  CLICK HERE to go to the event page and register!  All the details are on that page regarding location and time.  Sorry I'm just rolling this out now on the blog, I don't always do a good job with running PUCK, but despite me, we're still working hard and making the world a better place for kids with EB.

God night.

Ali as Laguna Blue from Monster High for Halloween and Julian as Yoda...


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?)

Sunday, September 23, 2012

September 23, 2012: I guess I'm ready...


Sorry for no post last week.  I was traveling to Phoenix for rehearsal for our upcoming reunion / benefit concert, and I was just too tired Sunday night.  Things are going great with the concert.  My band is getting along great, and everyone has done a great job of putting aside their differences to make this show work.  I'm really grateful for the patience and presence each guy (there are SIX of us) is exhibiting.  Putting together a reunion show is dicey... sounds great in concept, but then you all spend 8 hours in a practice room together, and you very quickly remember all the reasons why you don't speak to each other anymore!  LOL.  There has been a lot of "past" to wade through to get everyone firing on the same cylinder.  I told everyone, "Please leave all that baggage at the practice room door.  You are free to pick it up when you leave, but please don't bring it into the [rehearsal] space."  Sure enough, everyone not only did this, but after practice, we all went out as a band... and promptly closed not one but two bars that night! LOL.  That was really great to see - all the guys hitting on all cylinders in the practice room and out!  A band is a delicate mix... I always explain it like this.  There are three major hurdles you have to overcome just to put a band together...

1.  You have to like what the other guy or gal does musically
2.  You have to like them when their not playing their instrument as well since you have to spend the other 23 hours a day off stage with them on the road.
3.  Even if both of these are the case, you have to both be unconnected to any existing projects at the same time.
4. Only then, can you even begin the real work of creating art together.

It's why being a solo artist can seem so appealing!

Anyhow, that's why I missed Sunday's post.  But lemme tell you about Tuesday... which is the meat of the post...

but before I do even that, I have to tell you about another absolute angel I ran into at our Time to Fly Run in June.  Well, there were several, but right now, I want you to know about Tona Crooker.  Ang and I did the best we could for Bella because, well, we gave birth to her, but Tona is voluntarily adopting a child with EB from an orphanage in Eastern Europe.  Like the Delgados, Tona has been called to rescue a child from a similar situation and she is listening to that calling.  That just fills my heart with the deepest amount of hope for our world.  It shows me the potential for human being.  People have said very kind things about how Ang and I have dealt with everything we went through, but we are in it, and as such, simply can't 'see it,' the way anyone else can.  However, I can look out and 'see' Tona.  I had the good fortune of meeting her at the race, and I remember this quiet power/confidence/self assuredness that was present, but also, grounded...  a lot like Ang!  Anyhow, earlier this week, she reached out to me and asked if I would share about their journey with all of you, and I immediately replied it would be an honor and pleasure.  Please CLICK HERE to go to her campaign page.  It is so totally inspiring.


Here it goes.

I'll just start writing the events as they happened.

On Tuesday, I was at the hospital doing my thing.  I was feeling a little lonely at lunch, so out of the blue, I decided to drop by the Chaplain office to see if anyone still needed/wanted to grab lunch.  Mind you, I had already passed their office, but felt called to double back.  It had been like a year since I had dropped into their office, and it was a good 30 minutes later than I might have dropped in for lunch in the past, but I figured, why not?

Well, it was a party!  Everyone was there, and as soon as I walked in, one of the Chaplains said, "OH good, Tim.  I need your help.  Can you play a memorial today?"

"Is it here on campus?" I asked.

"Yes, at 2."  She replied.  It was 1:10pm.

"Sure, do I have time to get lunch?" I responded.  I wasn't going anywhere other than the cafeteria next!

"Yes, I'll text you when we are getting ready.  You should know, the patient is 2.  He was hit by a car.  The parents were having a BBQ in the back yard and had been drinking.  Somehow, the child got out and wandered into the street.  He is still on life support, but he was declared brain dead this morning.  We are going to do the memorial, and then they are going to take him off life support."





And off to lunch I went.

What happened during that pause was this... I thought about how God works.  I still trust Him completely.  I may still be a little pissed at Him, and frustrated because I don't know "how to pray" anymore, but I love Him, I know He loves me, and I trust how He works.  He didn't have me "drop in" to the Chaplain's office only to throw me under the bus.  It was His way of letting me know I was ready if I was willing to trust Him again.

So... after lunch, I got 'the text,' and headed up to the room.  I walked into the unit, and quickly realized something... although we are an adult hospital, we have a Level III Trauma Unit for pediatrics.  Last year, I treated a 5 year old who suffered a traumatic brain injury after also being hit by a car.  (Incidentally, that little boy got on the school bus this fall all by himself and has made a miraculous recovery).  I had forgotten about him until I was back on this unit, since I hadn't been back since.  Anyway, as I walked in, the Chaplain says, "Can you play Jesus Loves the Little Children?  Then, maybe 'Yes Jesus Loves Me?"  To which I answer, "No I can't, but give me 5 minutes with my iPad and the answer will be YES."  This is where I give thanks and praise again to my iPad.  I was able to pull up chords and lyrics to both songs within 2 minutes, and I had the Chaplain sing Jesus Love the Little Children as I played the chords, and BOOM, we had it.

As the family started entering the room, I looked through the sliding glass doors, and had a brief freak out moment.  The air blanket Bella had over her to keep her warm?  Present.  A cute quilt to hold it down?  Check.  Stickers and drawings on the walls?  Yup.  Little child with a blanket draped around the top of his head, with a breathing tube coming out of his mouth?  Check.

Holy ____ it was almost an IDENTICAL scene.

That's when I literally looked up at God through the ceiling panels and pointed my finger at Him and said, "Now, I am NOT going to freak out, because I trust You, but I got my eye on you!"  I mean, really?  all the way down to the quilt over the air blanket??? I did NOT see THAT coming.

I walked in, set up my iPad, and we began.  I sang with joy, reverence, peace, and calm... all things that result from my Faith.  Most importantly, I could just 'be' with the child and his family.  I'd been there myself.  God gave me all my experiences, and gave me the opportunity to put those experiences in a bank, where they could be drawn on in the future for the betterment of others, and here I was, just under two years later, drawing on my account.  After the conclusion of the service, I didn't want silence for the family, so I played, "His Love Is Everlasting."  Then, it was time for me to leave.  I went to the mom, put my hand on her shoulder, and whispered, "There are no words.  I just want to give you some love," and I just held her shoulder for a few mindful seconds.  Then, I walked around the bed, and stopped at the foot of the bed and beheld the child.  I did not want to hide from him.  I wanted to be with him, fully, so I squared my body to his without anything between us, and I held him in my smile.  I thought about Bella walking him to heaven, saying, "That was my daddy playing for you.  He's good like that."

Last, I sidled up to the dad.  I said the same thing to him as mom, but instead of just a hand, I reached my arm around his back and gripped his upper arm and gave him a one handed side bear hug.  This latino man was in a room of grieving women, and while trying to be strong, he was struggling.

I remember two particular hugs from Minnesota.

They were from other men.

They gave me the strength I needed; the strength that I was providing my family.

I thought of those two men in that moment, and was so filled with gratitude to 'pass it on.'

Then, I walked out of the room, beaming.  Drained, but beaming.

The Chaplains were concerned about whether I was okay, to which I told them exactly what I said to God earlier about trusting Him to not throw me under the bus.  He didn't have me 'drop in' for any other reason than to give me the occasion to witness my own growth and healing.  It's like He was saying, "How fast will you ever know yourself to be if you don't ever bust into a full sprint?  How strong will you ever know yourself to be if you don't push past what you thought was possible?"  Does that make sense?  I hope it does, because it is so important.  You have to trust something or someone to ever really 'go for it,' whether it be yourself, God, your spouse, whatever.  In order to truly go for it, you have to let go and let it rip.  You have to be a little bit 'out of control,' otherwise, you never reach new ground.  I'm speaking in some vague metaphor language here and I hope it's not coming off preachy; it's just that I don't think I woke up on Tuesday morning and said to myself, "Hmm... I think I'm ready to play a memorial for a child pretty much in Bella's exact situation."  It just didn't go that way, but now that it was offered to me, I took it.  I took it, again, because I had Faith.  Faith that inside this (or any) situation was the seeds of growth and blessings.  Faith that God lays those blessings out before me for me to find, like an Easter egg hunt.  Sometimes those blessings are easy to find, sometimes it takes a little more work to uncover... but they are always there!

That's my story.

God night.

Sunday, September 9, 2012

September 9, 2012: "I'd like to sign you..."


(Sorry for no photos... my iphoto decided to stop seeing my memory card tonight.  Think my drive is bursting at the seams!)

Well, another busy week under the belt.  Julian walks and talks and listens and continues to understand more and more each week.  It's so much fun to behold.  I just can't believe sometimes we got another chance at this.  We are so lucky, and so blessed by God to have another shot at raising a healthy baby.  He just brings us so much joy... we don't take a minute of it for granted.

Julian entertains us, but he also entertains himself!  He is a full on toddler now, walking and babbling, interacting with everything within reach, and able to play by himself for long periods of time while only asking for the occasional giggle or book to be read to him...

...actually, that's like all the time.  The kid is infatuated with books!  He's got two sounds, "buh" for books and "Bah" for balls.  He loves playing with balls and having anyone read him books.  He will bring the book to you, stuff it in your hand, and say, "Buh!"  (Right now, he is pointing the remote at the TV and pressing buttons, wondering why it isn't obeying him)

He's also interacting with Ali just wonderfully.  Two nights ago, he grabbed her brush and reached up and started brushing her hair!  Yesterday morning, when Ali and I were talking about how cute it was, she, rather matter of factly, mentioned that she was crying the day before, and he got her a tissue!  Neither mommy nor I saw this take place, but it points to the connection he is developing with Ali, which is really tender and sweet.

The reason for the post title was because this morning, I hear these words for the first time in my life.  See, as a recording artist during my 20's and early 30's, and then author in my later 30's, these were the words I wanted to hear so badly.  It would be a record label or publishing house, and it would mean that my dreams would have finally come true.  This never came to pass, and as of today, I am still an unsigned artist and author.

However, I am not an unsigned athlete!

In the sports world, players "sign with" professional teams, and professional teams "sign" players to play for their team.  Well, that's what happened this morning!

It was the humblest of scenes. It was a community soccer field in a suburban development in Orange County.  A bunch of guys over 35 still playing soccer in a league called "Coast Soccer League."  I found "The LA Strikers"  through a search of the teams on last year's schedule and contact the teams that came in 2nd, 3rd, and 4th.  Strikers finished 2nd last year, and the manager was the nicest of the three I reached out to regarding trying out for their team this fall.  I played 2 pre-season matches with the team.  The season starts next weekend.  After the beating we gave the other team today, the manager took me aside for "the talk."

"Tim, can I talk to you a minute?"  he said.  Last time I heard a coach say that, I was 18, and the coach of the soccer team at my new college was cutting me in the following moments, and I remembered that moment instantly.  The manager looked at me very seriously and said, "We've got a good team this year, with A LOT of guys, but I'd like to sign you to our team."

You know what?  That was the coolest thing I had heard on a soccer field in a l-o-n-g time.

When I told a friend today the news, he said, "So what does that mean?"  To which I replied, " Oh, all that means is I have to pay him a bunch of money to play with team going forward.  LOL!"  It's nothing major, but it still feels good.  The team is very good, with a lot of really skilled players, but most importantly, they are just the nicest guys, on and off the pitch.  Feels good to be fit at forty and playing club level soccer.  I have a lot of confidence that my 40's are going to go well, given the sculpting and baking in the kiln of life that took place in my 30's.

There is still so much LIFE to experience!  I am so grateful for the chance to experience it.  Between my work with cancer patients and our journey with Bella, I recognize that 40 isn't a given.  Nothing is, including tomorrow.  If I've learned one thing, it's that tomorrow doesn't necessarily follow today, so don't put "it" off.  You may not get the chance to come back to "it."

What is the "it" you are no longer going to put off?

God night.

Sunday, September 2, 2012

September 2, 2012: Forty, and Loving it...


Life moves on!  Just another super busy week over here.  Thank you to all who donated to my Giving Up My Birthday campaign.  As you can see, $570 was donated to PUCK, which will be doubled thanks again to the generous challenge grant by EBMRF and JGSF to total $1,140!  I'm really excited to share the at the beginning of the year, JGSF and EBMRF put a $450,000 commitment to the work Dr. Tolar is doing at the U of M, and here we are in September, and there is only about $123,000 left on the table!  $10, $20, $50, $100 at a time, we inch our way closer to our goal.  Thanks, everyone, for standing with us!  After all, I'm pretty sure all my online friends weren't planning on sending me $570 worth of gifts for my 40th birthday! :-)

Ang and I got - ready for this? - TWO date nights in a row this week!  Friday night was my birthday, so grandma and grandpa watched the kids while we had dinner and a movie out.  Last night, we got a babysitter and attended our friends Steve and Susan's wedding in their home.  I was honored to generate a reading called, "The Invitation" by Oriah Mountain Dreamer.  It is a wonderful poem and here it is:

The Invitation

by Oriah Mountain Dreamer
It doesn't interest me what you do for a living. I want to know what you ache for, and if you dare to dream of meeting your heart's longing.

It doesn't interest me how old you are. I want to know if you will risk looking like a fool for love, for your dream, for the adventure of being alive.

It doesn't interest me what planets are squaring your moon. I want to know if you have touched the center of your own sorrow, if you have been opened by life's betrayals or have become shriveled and closed from fear of further pain!  I want to know if you can sit with pain, mine or your own, without moving to hide it or fade it, or fix it.

I want to know if you can be with joy, mine or your own, if you can dance with wildness and let the ecstasy fill you to the tips of your fingers and toes without cautioning us to be careful, to be realistic, to remember the limitations of being human.

It doesn't interest me if the story you are telling me is true. I want to know if you can disappoint another to be true to yourself; if you can bear the accusation of betrayal and not betray your own soul; if you can be faithless and therefore trustworthy.

I want to know if you can see beauty even when it's not pretty, every day, and if you can source your own life from its presence.

I want to know if you can live with failure, yours and mine, and still stand on the edge of the lake and shout to the silver of the full moon, “Yes!”

It doesn't interest me to know where you live or how much money you have. I want to know if you can get up, after the night of grief and despair, weary and bruised to the bone, and do what needs to be done to feed the children.

It doesn't interest me who you know or how you came to be here. I want to know if you will stand in the center of the fire with me and not shrink back.

It doesn't interest me where or what or with whom you have studied. I want to know what sustains you, from the inside, when all else falls away.

I want to know if you can be alone with yourself and if you truly like the company you keep in the empty moments.

I relished the opportunity to generate this - not recite this - because I have lived so much of this poem over the past three years.  It is REAL, not just rhetoric.  Here's the video Ang shot of it...

Getting two nights together was just a joy.  We love our kids, but I loved Ang long before we had kids, and it's VITAL to keep that initial connection alive, and after two nights together, I just grew more and more smitten with my beautiful wife.  She is just so amazing.  Super smart, sharp, gorgeous, funny, laid back, and devoted.  All in one.  

Today, Grandma and Grandpa threw me a small get together at their place along with Ang's brother and his family.  We gobbled some yummy pizza and an awesome donut-shaped cake.  Fun with family!

I just want to finish up with something very powerful I took away from my friend Steve and Susan's wedding.  They created their own vows, and they weren't mirrors of each other's.  They each generated their own vows, and before they did, the officiant, an old friend Flora Shule, explained that they were requesting that we listen to them going forward as these vows.  It got me thinking, "How easy is it to forget to generate my (or anyone's) vows?"  I mean, can you remember your vows off hand?  And if so, are you present to not only generating them on your own, but listening to your spouse as their vows?  When I think of my vows, I realize that I do a decent job generating them. However, when I think about and imagine Ang generating her vows my way, it TICKLES ME!  It makes me giddy to just think about the woman I love so much, loving me that much right back.  I realize that sometimes I just take our love for each other for granted, like it's on auto-pilot and auto-sustain.  However, there is NO FEELING MORE POWERFUL in this world than the confidence I feel in myself when I really get present to the woman I love, loving me just as much.  I feel INVINCIBLE!  I love being married.
I love being married to Ang.  Life is good!

God night.

Sunday, August 26, 2012

August 26, 2012: Julian is a walking (almost) talking 1 yr old!


Hahaha, it's 10pm here in California, and I SWORE I was going to get to the blog before now.  Does your time ever get away from you like that?  Argh.  Oh well.  Time for some focused typing!

Let's recap the week.

Monday I took Ali and Julian to Sea World, and can I just say that if you choose to sit in "the soak zone" at any of their live events... know that it isn't the "splash zone" it is the SOAK zone, and they use that word for a reason!  It was a blistering hot day, and the dolphin encounter show was already filling up fast, so frankly the only good pocket of bench left we could find that wasn't in the rafters was in the soak zone.  Ali was prepared for this in her bikini under her sun dress, so she disrobed and was prepared.  I had a towel in our bag, so I busted that out for me and Julian as we were not in our bikinis. I had a bad feeling when I sat down and the concrete below my feet was still VERY wet from the last show.  Did I mention it was hot?  That concrete should have been hot and dry, unless of course we were in firing range from one of the pilot whales or dolphins.  There are two BIG black pilot whales in the show that do some real damage to the soak zonees...

...and this time....

...we were among the casualties!

The pilot whale first went over to another spot, stuck its tail out of the water, and flicked gallons of water repeatedly at the same poor slobs... to which we laughed quite hard... then, he or she came our way, lined up DIRECTLY in front of us, and let us have it.  My towel was no match for the deluge!  It was as if the water was literally blasting through the towel like bullets.  I was holding it out in front stretched tight like a taught curtain, and that puppy was pelted to where it just collapsed in a soaking heap onto me and Julian within the third (or fourth) tail flick.

However, it should be said that Ali and I haven't laughed so hard out loud ever, and Julian didn't even flinch.  He thought it was fun.  The water was nice and cold and was a welcome relief from the blazing sun... till we started to STINK!  Lotta whale and dolphin poop and pee in that tank... that's all I can say.
Still, a good time was had by all.

Wednesday was Julian's official birthday, and Ali's last day of summer, so Ang and I both took off work and took the kids to the beach to celebrate.  Cute cute cute watching Julian at the beach.

Thursday was Ali's first day of first grade!  Ang, Julian, and I walked her to school, and that was just wonderful.  What a right of passage.  Again, cute cute cute with the new backpack and clothes... the whole bit.

Thursday night I had the honor of giving the keynote at my alma mater, Chapman University, for their freshmen orientation.  900 kids, only 3 days out from the nest (away from home)... absolutely TEEMING with raw potentiality and possibility.  It was amazing to be around their exuberance and energy!  IT was such a privilege to share Bella's story with them.  Everything I learned about how to use music in the NICU with Bella I learned at Chapman, so I have a lot of gratitude for my education.  It reminds me that you NEVER KNOW in what way you may use information or knowledge you learn today... tomorrow.

Friday we got ready for...

Julian's birthday party on Saturday morning!

What a fun day!  We had a soccer themed party, since I wanted the brainwashing to begin early and often.  Grandma hosted, and Grandpa made an AMAZING soccer ball/pitch cake that looked and tasted fabulous!  Ang bought all sorts of soccer decorations, and when we realized we were going to have 8 kids at the party over 4 due to some late rsvps, it fell on me to figure out how to keep 'em busy.  Ang had created an art station, but we needed something that would use up their physical energy.

So, I thought, how do I know what to do?  Wait, let me consult Google, and let google do the thinking for me.  Trouble was, all the activities were tired, been done for 50 years straight ideas that came up.  So, I figured, this is a soccer themed party... we should probably play some sort of soccer!   So, I through Ali in the minivan Friday night, and we essentially went out on a scavenger hunt.  T-shirts? check.  Spray paint?  Check.  Stencils?  Check.  materials to make goals and corner flags?  check.

We hand made team jerseys for each kid, then set up a field at the nearby park and played 4 on 4 soccer with all the kids divided according to age.  Only 2 meltdowns occurred.  That's a number I can live with!

Julian tried a cupcake and frosting on his actual birthday, but when we dropped a full-on cake in front of him on Saturday, he didn't see the connection, and wasn't really that interested in dismantling it with his bare hands.  No worries.  All in all, it was an adorable afternoon.

Alright.  My brain just ran out of gas.  Probably because I played my first soccer match on a regulation field for a regulation time for the first time in probably 4 years.  I've been playing pick-up, but we've been on youth fields.  What a difference!  I'm gonna be sore tomorrow.

P.S.  If you didn't notice the widget on the right, I turn the big 4-0 this coming Friday.  I'm lucky to reach 40, and thought, "Won't it be amazing when EB kids can reach 40?"  With that thought in mind, would you consider making a small donation to celebrate the milestone with me?  Any little bit would be appreciated.  This is the only time I'm reaching out to this blog community on this fundraiser.  I almost didn't do it at all, but I just didn't feel right keeping my birthday for myself.  Grandma is gonna order pizza next weekend.  That I'm okay indulging in, but I don't need anything.  Really, I guess I'm just obsessed with fulfilling the promise that ten years from now, NO child has to die from THIS disease again.  Wouldn't that be an amazing thing to have happen, and then say you were a part of?  Pretty cool dream in my opinion.  Thank you in advance for your birthday wishes and donation gifts.  I really appreciate you!

God night.