Sunday, July 21, 2013

July 22, 2013: Happy Birthday everyone!


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 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.

Sunday, July 14, 2013

July 14, 2013: New Friends...


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!

Monday, July 8, 2013

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


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.


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.