July 22, 2013: Happy Birthday everyone!

Heaveno!

I say "Happy Birthday, Everyone!" because today we celebrated 5 July birthdays at grandma's house.  It was another wonderful party at grandmas, eating way too much food, and watching the four grandkids just get bigger and cuter every time they are together.



Ali and her cousin Wilson...

Happy birthday especially to my beautiful wife Angelique, whose birthday was Thursday!  She had to work a half day, so me and the kids picked her up from work and took her to Laguna Beach for an afternoon in the sand and in the waves.  Julian did NOT dig the beach so much... while yes he was content enough to fill and empty his bucket with dry sand repeatedly (what a little Zen Master), he did NOT like walking on the sand, and had NO interest in the waves.  That's a bit understandable, because of the shape of the beach, the waves break RIGHT on the shore, so it's a little intense for a little guy.

Then, Ang picked out a fun restaurant in downtown Laguna Beach, so we walked to our car, dropped our beach gear, and strolled straight to dinner!  Even though Laguna is a haven for art, when we got home, there were two custom paintings waiting for Angelique from her own kids waiting for her on the dining room table as birthday gifts.  They spent the morning making them.  Ali made a card for her as well.  Ali is funny.  She is a creativity machine, but electronic screens are her kryptonite.  Try to get that girl to do ANYTHING if a TV, computer, ipad, or phone is on/open nearby... forget about it.  I call the TV "The Great Lobotomizer."  Does it fry your kid's brain, too?  Oh well.  All I know is that, screen off = creative art and role playing flourishes, screen on = rotten attitude within minutes.  Sooo.... screen stays off when she's hangin' with me as much as possible!



The other funny thing I've learned playing with Ali is that there are definite rules of engagement in play.  If I am asked to build a whole city out of blocks for her, we are not technically playing.  That is just the set-up.  "Playing" doesn't actually begin until we are ROLE playing.  In other words, until I hold a small figurine in my hand and start talking in falsetto, we are not actually playing.  This confounds me, because when I was growing up, I spent more time setting up grand scenes than actually acting them out, and that was just fine with me.  With Ali, it's all in the acting.  I ran into this yesterday, and just laughed at the difference in what the word "play" means to both of us.

In other news, you'll notice a new logo on the right.  PUCK is hosting its first golf tournament in Orange County, CA this fall!  It is Monday October 28 in celebration of EB Awareness Week, and it will be at Tustin Ranch Golf Club in Tustin, CA.  A good friend of mine who works in the golf industry is helping me put this tournament on, and boy, is it A LOT of moving parts.  IF you live in SoCal, email me at Timothy@puckfund.org if you'd like to participate in any of the following ways:

1)  sponsor
2)  player
3)  volunteer
4)  silent auction donor

I'll share more via email with you!

Changing topics yet again, remember how I told you I gave up using credit?  That has been going pretty well.  What a challenge, though!  I have relied on credit to bail me out for 22 years now.  Taking it away from myself has been like taking away my binky!  LOL.  It's been my security blanket, but more than that, it has been my 'aloof' blanket, because the clarity in which I think about, plan, and monitor my money now is so much more refined than at ANY time prior.  I still have a lot to learn, but my little baby cash-only muscles are being developed daily!

This month has been a humbling lesson in just how little I understand cash flow!  Until this month, I would just put what income came in this month and what expenses went out all under one column.. "July".  What I learned this month is that this is not enough.  I am having the best month probably ever, BUT the lion's share of my income won't actually land in my lap till the last day of the month.  That makes A BIG DIFFERENCE! LOL...  That may seem so obvious, but it shows just how disconnected I was with relationship to money, when it is due, and when I can expect it.  I never needed to manage cash flow because I would putt as many of my recurring bills as possible on my card so I only had one due date to manage.  Humbling and scary, but I don't have to do it alone.  Each day, I practice new habits, and I do my best to turn the results over to God.  He and I are getting along better these days as I have begun meditating daily in the mornings and this morning, we basically got back to the relationship we had while we were in Minnesota.  I'm happy about that, because he's a pretty great friend.  It's nice to have him back.  Of course, all it took was the willingness on my part to listen (again).  Ever struggle with that one? ;-)  You're not alone.

God night.

July 14, 2013: New Friends...

Heaveno!

I am ready to hit the hay, but I wanted to reconnect after an a-m-a-z-i-n-g trip, because the trip has everything to do with YOU and THIS blog.

See, back in March, I got an email.  It was one of those emails I had been waiting for since my TEDx experience.  I really want to develop the expert/speaker side of my career, because I believe I will be able to reach more people down those avenues by being hired to come work with and speak with entire groups at a time.  I love my small group and one on one music therapy, but I'm on a mission to inspire and heal and teach millions, so in order to deliver on that mission, I need to be out in front of large groups!

Well, the email asked me if I'd come to speak about music therapy and pain management at two conferences for children and adults with hemophilia with inhibitors.  The meeting planner explained that this means that these patients essentially build antibodies against the primary treatment for their condition.  As a result, they are the most affected with really intense challenges, one of which being pain management.

I asked the meeting planner how she had found me, and turns out it was through THIS BLOG.  She first read Courtney and Patrice's blogs, and then stumbled on mine!  When she realized I had the professional background to discuss music therapy - a topic they had wanted to incorporate - and the personal background as a caregiver of someone with a severe disease, well...

... it just seemed... Providential. 

Well played, God.  Well played!

So, I was hired to come to their two summits this year, this past week in Seattle and in two weeks in Nashville.  I got to drum and play with the kids' camps, and do lectures with teens and adults.  Once we worked all that out, I asked if I could give a "musical keynote" on one of the nights as a value-add, because I really feel called to share our story the way I did in Chattanooga... inside the VERO model.  I feel like God wants me to share that model with special needs parents, and while he planted the seed three years ago in Nov of '10, the u of M was dangerously low on research funding, and we didn't want them to stop the progress they had made, so it was time to focus on them.  Less than 3 years later, thanks to the amazing efforts of DebRA, EBMRF, JGSF, and PUCK, the U of M has seen over a million dollars in research funds come their way.  So, having hit that milestone, it's time to move on and share our story.

The planner brought the idea to the steering committee and they liked it!  So, I got to share our story with this new community in the hopes that they could take the VERO model home with them and use it to empower how they see their conditions.  I was really nervous to see if it would resonate in a positive, motivational, inspirational way, or just hit too close to home...

About 100 people came to the keynote, and afterwards, I was inundated with kind, welcoming, and empathetic remarks and sentiments.  This community was so wonderful and welcoming.  So peaceful and supportive of each other.  So driven and committed and passionate.  They reminded me of so many within the EB community.  Bella was only with us for 17 months, and the last 3 of the months were in the ICU, so in some ways, I never felt like I got to know too many people in the EB community, and the only PCC that happened while Bella was alive took place the weekend she was admitted for her BMT.  Still, Each one of the following people in the EB community came to our aid at one point within that short period of time and walked with us:

Gerri Kelly-Mancuso
Leslie Rader
Jason York
Danial Jones
Marybeth Sheridan
Patrice Williams
Courtney Roth
Jennifer Edling
Brett Kopelan
Becky Pop
Joy Thornton
Sara Denslaw
Frank McNamara
Lonni & Jay Mooreland
Chris Pez Matthai
Kristi Bolte
Meghann Turnquist
Sally Mata
Linda Ainsworth
John Neikens

Now before I get in trouble for any omissions, we've bonded with many more since Bella died, and forgive me if your name belongs up there and I forgot.  Point being, with only being in the community for as short a time as we were, and for never having been to a PCC or Camp Wonder, the list shows that the EB community is an AMAZING support structure for itself.

That's the kind of camaraderie I was around this weekend.  It felt very comfortable to be in.  I felt right at home, and it was SUCH AN HONOR and PRIVILEGE to be granted the opportunity to share my story and my expertise with them.  I fell love with a whole new community, and can't wait to share again in two weeks in Nashville!

So, thanks, Meeting Planner (wink wink you know who you are)!  I may have shared the gift of music therapy and VERO, but YOU shared the gift of this entire community.

I think I got the better of the two deals.

God night.

P.S.  As cool as it was having a professional driver to and from the hotel... 

... this was the sign I liked seeing the best!  Thank you mommy, Ali, and Julian!  You made my day!

July 8th, 2013: Back, Gone, Back, Gone...

Heaveno!

Again, sorry for the inconsistent blogging.  We left for Minnesota, came back, 3 days later I left for Portland, OR for a business trip, then got back, three days later it was the 4th, 3 days later we dropped Ali off at church camp.  Now, I leave for another trip to Seattle in 3 days.

WHOOOOOOSH.

That is the sound of life WHIZZING by.

Sometimes it is exciting, sometimes it is nerve-wracking.

But it's all good.

First off, Minnesota...



How great to be back.  We LOVE it there (probably because we mostly visit in June ;-) ), and we love the friendships that are deepening over the consecutive summers there.  We don't get to see all our friends every summer, but we always get to see a good chunk.  We started off at our friends' cabin up north again.  Bob and Lynne are dear friends and have been for many years, and it's just great getting to spend time with them and their growing family in such a serene place.  Whether it's sunny, or if a storm is brewing, I find sitting on the dock at the lake one of the most peaceful experiences.  I even did yoga this year on the dock, and cooled off by diving in straight from my finishing pose!  That was cool... hahaha.  In the little town nearby, there is a main street with cute shops, an old caboose, a pioneer museum, and some good desserts, so during a rainy day there, we enjoyed time in town as well.







Then, it was off to St. Paul for this year's Time To Fly event.  We were nervous about the weather for race day.  The entire week leading up to the race had some torrential weather, including the night before.  Sheets of rain were blowing by the hotel lobby completely sideways the night before, and even at 6am, there was still rain in the air.

However, God put up his umbrella, and the rain stopped, and even better, the clouds did NOT part, so it remained a cool, peaceful morning to run in!  If the sun had shone, we would have all melted from the humidity, so clouds were GREAT.  I could write for an hour straight about this day.  It was special on so many levels.  We had 113 team members who raised over $33,000.  Our team was largest team and biggest fundraiser.  Many of us ran our personal best times, and I even pulled 2nd place in my age bracket.  This is what we set out to do just two years ago when Ang and I stood around at the end of our first Time To Fly.  I remember saying to the exec. dir. of CCRF, "I get it now.  Game on!"



However, NONE of the success we experienced this year would have been possible without the unending efforts of our Relationship Coordinator, the amazing Christie Zink.  I could write all day just on how amazing she is.  Remember folks, this is a mom who doesn't even have a child with EB, who now has an EB butterfly tattooed on her foot!  THAT is how committed to caring for kids with EB she is.  She lives outside of St. Cloud, MN, about an hour from the race site, and I can't even count the days and weeks she put into coordinating everything on the local end from tents, to food, to prizes, to a chair massage, to motivating our team to overcome whatever their hesitation is about fundraising and get out there and just ask.  I'd really like to clone her to come down to CA and help us with our inaugural golf tournament we are having out here this October!  She is a tireless advocate for the EB community.  In my music therapy community, we give out an award every year to someone in the community who has gone above and beyond to advocate for music therapy when they themselves are not one.  Well, if we had that kind of award, I'd give it to Christie.  She's earned it.





The following day, we spent some time at the Como Zoo and Conservatory.  This is where Bella's MN memorial took place, and we hadn't been back since.  It was an absolutely picturesque day, and it was wonderful to be back to such a serene place.  I was really shocked at how much smaller it looked when we were back inside compared to the photos.  What I've noticed lately is that I can't seem to access too many memories of the memorials "from the inside out."  The memories I have are images I saw through someone's camera.  The images my brain took seem to still be locked up.  When we were walking through the inside garden, I couldn't believe we were able to fit everyone in there, but further, I had no actual memory of it taking place.  Weird.  None the less, my overall memories of Minnesota are really positive, because we worked REALLY HARD at containing the pain of the time there to the hospital itself.  Because we had the GIFT of being able to leave the hospital every night, we felt it was our duty not to bring the pain with us, but to rest, recover, spend as normal age-appropriate time as we could with Ali.  I really learned what the meaning and origin of the word "recreation" meant during the summer of 2010.  I'm further spared by the fact that the children's hospital moved into its own building, so I essentially NEVER have to return to the hospital building itself again.  So, because we managed to keep the pain from 'spilling over' into the rest of Minnesota, I am able to find peace and joy all around there.  We finished up Sunday at a friend's for dinner.  It was great; there were three couples there, and we all went spent the past 4 years making babies with a vengeance, so there were babies and kids and toddlers and buns-in-the-oven all around!  It was great to see so much new life, new hope.



Then, we headed home, I headed back out on the road, I'm back, and BLINK, Ali left for church mini-camp yesterday.  I'm really happy for her that she is beginning this tradition.  When I was going back to school for my degree, the young men and women I was most impressed by were students from our denomination, Christian Church, Disciples of Christ.  We are a progressive Christian church which is open and affirming, and extremely inclusive and non-judgemental.  When I got to know these students better, I learned that their dads played guitar in their church (check) their whole life, and they actively participated in church life including church camp (check).  Not that there is an automatic recipe for 'turning out good,' but one thing I've learned in my 20+ years of studying personal development and now positive psychology (my latest love affair) is that success leaves clues.  Ang and I really don't know how Ali will fare, she's entrenched in a bit of a 'Princess' phase (not like she's into princesses, but ACTING like one), and we're wondering how she'll do 'roughing it.'  We're hoping it's good for her!



Having said all that, I HAVE to give Ali MAD PROPS for something she recently did at her summer camp.  They were having a 5th of July Parade at camp, and everyone was invited to make a "float" or banner out of cardboard for the parade.  Well, the night before, Ali said she wanted to make an EB float and put pictures of Bella and other kids with EB on it.  So, mommy gave her a picture of Bella, and printed off some pictures of our EB friends and angels from the internet, and sent Ali off with a file folder.  Here is what she came back with:



I don't know if you can see the butterfly on her face as well.  She was so proud to share about and represent her sister and EB!  Go Ali.  There is a heart of gold in there for sure!

Last, I want to share an amazing moment at church yesterday.  We have a new associate pastor who started in June and we have a new senior pastor who started (preaching) yesterday.  The best part?

They are both women.

They are fit, they are married, they are active, they are well educated, they are amazing.

As I was rehearsing with the band shortly before the service was to begin, these two beautiful women walked up the aisle.  Each with nothing but a humble, thin, dark green stole to denote any sort of position of leadership.  One in a sleeveless dress, one in a tank top and flowing skirt.  They strode up to the dais exchanging thoughts with a sense of peace and confidence, and how did our new pastor choose to first communicate with her new church family?

She sang the first verse of "Gather Us In" a capella.  The line from her sermon that I had to write down?

"Want a breakthrough?  Ask better questions.  Quality questions reveal the now and the not yet of God's Kingdom."

I'm already a fan. :-)

God day.

June 16, 2013: Minnesota Bound... Again!

Heaveno!

Well, the pre-packing has begun!  We fly out of Orange County at 6:45am Tuesday, so we will go stay at grandma and grandpa's house tomorrow, and grandpa will lovingly give us a ride to the airport at early thirty am on Tuesday morning.  So, that means we really leave tomorrow evening, and Ang and I both work tomorrow!  Funny how this stuff just creeps up on ya.  Ang was on the road Wed, Thu, and Fri this past week, and due to late planes, missed her connection Friday night and literally didn't get in until 2:30 am Sat. morning.

One of these years, we'll figure out that we need a day off before the travel day, and a day off after.  Still haven't gotten that one figured out yet!  LOL.

Plans for the race are going GREAT.  Hats off to our Relationship Coordinator, Christie Zink, for an all-around bang up job this year.  We have over 100 team members on Team PUCK this year!  We're currently at 108, and expect a few famous last-minute-entries by Saturday.  We have 3 tents this year for Team PUCK complete with new race t-shirts, food, beverages, fun kid activities, chair massages, prizes for our top fundraisers, and on-site supervision so parents can run their races and leave their kids at the tent in safe hands... and this is all in addition to what our parent organization, Children's Cancer Research Fund (CCRF) has in store for everyone!  In addition, I think we are going to break our fundraising total from last year!  We set a giant, audacious goal this year, and while we're probably only going to do a little more than half of that, we're still going to top last year, which means we'll probably end up in the $28,000 range.  Still, we are incredibly happy!  Remember, we're just a few parents pulling this off in our spare time.  All our donor money goes straight to EB research, and we cover what little costs we incur through sponsorships.  Above all, nobody takes a salary.  Big thanks also goes out to Ryan Durry, the IT Ninja at (CCRF)!  He has continued to help us with our websites and done a great job.  Thanks, Ryan!  Thank you also to Emily Siebold at CCRF for working with our team to coordinate tent locations, schedule times, race packs, the whole shebang!

I was looking forward to really competing this year in the 5k as I turned 40 and am now the youngest guy in my age bracket (40-49) instead of the oldest last year (39 and 10 months).  I think I came in 5th for my age group last year, so I was really thinking I might have a shot at winning my age bracket, but I'll tell ya... in the past year, I have added so many bumps, bruises, strains, and even sprains, I lost count.  I found that I couldn't run hard without a full 72 hours of recovery time this spring.  Then, 9 days ago, I really pushed my run and pulled/tore something in my right hip.  Feels like my ilio-tibial band, and it's been a hot mess since.  Haven't been able to run at all, and put in two sessions on the recumbent bike in my gym to try to keep a little endurance in my lungs.  SO... I gave up any hope of glory, hahaha.  I'll run hard, and however I do this year is however I do.  If my hip lights up on fire during the run, I'll stop.  I've let go of being attached to any winning outcome... which is NOT easy for me.   In case you haven't figured it out yet, I'm incredibly competitive... but mostly with myself.  I really wanted to better my time from last year to tell myself I really am getting better with age!  Think there's a little complex in there about crossing the 40 threshold?  LOL.

Have you seen the amazing new research that our own Dr. Tolar from U of M has been involved with for EB???  3 years ago, we sat down at a lunch with him to discuss the future of EB research at the U of M and what he needed financially to make it happen.  Well, I'm proud to say that a little over 3 years later, we delivered on our end, in conjunction with the support of the other EB charities, DebRA, EBMRF, and JGSF, and this latest research has really shown that Dr. Tolar is delivering on his end as well.  If you'd like to read an article about what he is up to, CLICK HERE.

In other home news, Ali began summer vacation on Friday.  She had a great report card, and did a great job in first grade.  She's going to go into 2nd grade at her school where they will test the everliving sh#t out of her and teach her how to pass tests.  We've been hearing from other parents whose kids are/were in 2nd grade at her school just how much testing they do, and I was hoping to put her in a creative arts based curriculum private school this fall, but they are full, so hopefully only one more year in test test test mode.  I invested in a creative arts based summer camp for her this summer that will really allow her creative and critical thinking muscles to build.  It's called Steve and Kate's Camp.  I got this amazing brochure in the mail over the winter, and it blew my mind.  Check out their website HERE.  The booklet that came in the mail was basically a paper version of the site... the design alone tells you it's something different.  The artist Ali will be able to flourish in this setting, and she gets total creative control over which medium of expression she wants to learn and practice with.  Whether it's painting, sewing, cooking, engineering, music, animation... it's all there for her.  I can't wait to see what happens!

Thanks for the support from the last post.  I have officially stopped running my business and personal life on credit, and built an initial plan that accounts for upcoming business trips and expenses, all without having to float it all on credit.  It's really scary for me, because I have considered credit like a safety blanket, and I as a result, I've had a rather casual relationship with it.  It would be one thing if I only used it when I need it, AND if I paid it off, but I have NEVER been able to maintain that kind of discipline, despite promises to myself and others.  SO, a new path of financial recovery has begun, and I am grateful to be reminded that every day I'm still here, I can make new and exciting choices with this precious gift of life.

God night!

June 9, 2013: Bridging the gap... again.

Look who just "bridged" Daisy to Brownie today?

Heaveno!

Sorry I don't write as often.  Life is good here.  I am watching Julian RUN from room to room singing and screaching with joy.  Ali is laying next to me watching last week's elimination round of The Voice.    While I am still devastated at the early exit of Judith Hill, I am still all in for Sasha Brown.  The two of them were my faves.  There some real talent on that show, man.  I mean, I've watched entire seasons of Idol where the where ALL 5 of the finalists in the Voice had a better voice than the winner of Idol (in my humble opinion, of course).

But I don't blog on here to talk about TV shows.

What I would really like to talk about is my latest area of life where I have been really struggling, because I am willing to bet I'm not the only one who struggles with it.

I'm blessed that I've never struggled with my weight.  I know that's a tough one for literally millions of people.

I'm blessed that I've never really lost my faith.  I lost any clue how to talk to God, but I never lost my belief in God.  I know that is an area that many people struggle with.

But I'll tell you what.  I have never - I mean since I was 16 - had a comfortable relationship with...

... money.

Two weeks ago, I noticed my credit card balance had JUMPED (again), and I literally jumped in my chair, and said out loud, "How did THAT happen?"

Have you ever had an experience like that?  I understand if you haven't.  I know for a great many people, money is clear to them... how it works, etc.

But when I stared at my account screen, it felt like someone else was "at the wheel," not me.  But that's not the case.  When I looked at my account history, I quickly saw that I had purchased the whole of Ali's summer camp in one charge on my card... but thing was, I had NO MEMORY of that transaction, or any real relationship to what my balance would be when I made that transaction.  It's like I erased it from my consciousness as soon as it happened.

In that moment, I heard all the past "me's" who had stared at either a credit card statement in the mail or logged online and looked with apprehension, like it was going to be a big surprise.  Again, as if someone else was at the wheel.  As if I didn't use the card myself.

When I had my first savings account in Fairfield, CT in 1988, I would walk up to the counter, and the gal, Ved, (I still remember her name, because I made her the enemy) would give me my account balance, and I would literally gasp out loud in the line as if SHE took the money from me.  Looking back, I can see and feel the awkward response of other employees and customers who were within earshot.  Poor Ved.  She had to put up with me that whole summer.

Back in my office, I literally feel to my knees.  I had run up my credit card yet again. Something that I knew was happening but had been keeping a blind eye to since my main hospital contract ended.  I knew I wasn't making enough to get by, and sensed I was financing the difference on my card, but I was really hiding from the stark reality of what was so.

Have you ever PROMISED to do something (over and over), or NOT do something (over and over) and found that you just couldn't manage your promise?

I sat in the full heat of that realization on my knees in my office.  I felt panic overcome my body.

It was time.  Something had to change.  I realized I am forty years old, and this is IT.  I don't get a second chance, and I am lucky to be alive.  I've buried friends, children, patients, all younger than me.  I'm LUCKY I get the rest of today to manifest whatever I want.  Could there BE a greater gift than LIFE?    One thing I've learned through my work in the hospital and my personal life is that tomorrow does NOT follow today for thousands of people... every day.  If I get a tomorrow, what shall I do with it?  For it is GENUINELY A PRESENT given to me by God.

Within this game of life, there are some areas that are kind of 'lynchpins' that affect many others.  Money is one of them, and whether anyone wants to believe otherwise is their choice, but my car doesn't run on love, the bank doesn't want love at the beginning of the month, and neither does Julian's daycare.  They all run on money.  For better or for worse, it's kind of a lynchpin in our society.  Yet, I've been confused about it my whole life.

No more running.  I can't take it anymore.

And so it began.   Time to get some help.  I'm not as strong in math as other subjects, so you know what I did to get through in college?  I got a tudor.  How did I get through music theory?  Tudor.  Algebra?  Tudor.  Stats?  Tudor.  Did I feel "less than" or "weak" in those moments?  Nope, not really, because I was committed to an outcome (graduating with a 3.0 or higher GPA) and was willing to do WHATEVER IT TOOK to create that outcome.

So.

New outcomes:

Solvent business.

Debt free graduate.

Well prepared for retirement.

"Up close and intimate" with money.

Not because I'm obsessed with it, but because until now, I've been afraid of it.

I've joined a support group that works on helping each other break the cycle of debting (I didn't know that was a verb!) and have gotten A LOT of relief sharing my story.  The laughter of recognition in the room from those who have begun this road before me is refreshing.  To hear levity in the midst of something that heretofore has been so frightening...

... gives me hope.

I love this game of life.  Today, I get to re-write my story.  If I'm lucky enough to wake up tomorrow, I get to do it again.  Same for Tuesday.

So many chances for success.

What a gift.

God night.