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

Heaveno!

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.

August 19, 2012: Catching up...

Heaveno!

Hi gang!  Boy, I am sorry I've dropped the ball a little on here!  I'll catch you up, never fear!

So, hmmm... last you heard I had just returned from Santa Fe, NM from an amazing business trip.  That was Monday night, I think.  Well, only 2 nights later, we were busy packing for a family reunion on Hilton Head Island, SC!  We were away from that Thursday through this past Tuesday.



It was AWESOME.  It was my mom's 75th birthday party, and the only gift she wanted was to have all her kids and grand kids in the same place at the same time, so, we made it happen!  Even her brother and sister-in-law from southern Arizona flew in for the reunion!  Why HHI?  Well, my brother works at the Westin there on the island, and was able to get us some screamin' family discounts.  Plus, my sister Mary lives in NC, so her big family of 8 could make it without all having to jump on a plane.   All together, there were 23 people at dinner for her birthday.



This was the largest family gathering I can remember us having in maybe 30 years that wasn't a wedding or funeral.  Mom has 12 grand kids (including Bella) from the ages of 25 down to 1... (on Wednesday (Happy early birthday, Julian!)), and it was the first time all these cousins got to hang out together in the same place.  It was really neat to see.  My siblings and I (4 total) have only been together maybe 3 times in the past 20 years... I remember a photo shoot in approximately '92, then in '97 for a day (my dad's funeral), then in 2002 for my mom's wedding to Ralph, then this past weekend.  We have all lived all over the globe and the country most of that time, all having kids at different times, so we've been really geographically spread out.  It was neat to see the three of them again, and again, all at the same time.  It was surreal.







We spent hours and days in the amazing 85 degree water playing in the waves.  I rented a boogie board and spent 2 days just launching Ali on wave after wave after wave.  The waves were great because they were beach break waves (close to shore where you can stand where they break) and the sand was soooo smooth and soft. It made for perfect beginner waves for a little kid.  Plus, Ali being only 50 odd pounds, she floated along the top of the smaller waves with ease.  Me, at 160, just sank like a stone!  LOL.  We also took a boat ride and watched wild dolphins swimming along in the bay.  Ali got to skipper the boat, and Julian got to don the hat and give orders!





We ate a lot of great fresh seafood, and just enjoyed hanging with family so much, that I'm hoping we can do it again next summer.  My other sister, Tracy, has a summer house in Cape Cod, MA, and there is a rental house right across the street, so I'm already plotting to figure out how and when we can take that house over for maybe a whole week next time!  It just felt so good to be around my family again.  Ang's family lives locally and I love them, but I miss my family, too.  I'm sure y'all can relate to that.  (haha I just said y'all).

Julian loved the waves and the water!  He just had the biggest grin on his face, you could see it was really tickling him... like, "WHAT IS THIS??"  He's used to pools, and has yet to be in the pacific ocean out here, mainly because between cold water temps, nightmare parking, and sand,sand, and more sand, we opt for the convenience and comfort of our own community pool about 30 seconds from our front door.  Still, the best was once again, like in MN, watching him feel compelled to eat sand.  Too funny.  Yup, still didn't like it.  Shock.



In other news back home, Ali swam in her second swim meet yesterday!  That was the second proudest moment I've had as her daddy... first being when she danced at her first talent show back in the winter.  Watching her pounce as soon as the horn went off and lead her heat all the way to the wire (where she was edged out) in the freestyle was another surreal moment.  Ali is definitely NOT the most dextrous athlete on land, but in the water, well, it suits her better.  She also swam the butterfly, and came in second in her heat there as well, and it was her first time swimming butterfly!  That took guts!  She was nervous beforehand, but she stuck it out.

Yesterday, we also had the wonderful chance to have the one and only Sara Cooper shoot Julian's first year pictures at Pioneer Park in Tustin, CA.  Holy cow, the pics are SO CUTE! CLICK HERE to see some of her pics from yesterday!  Sara is SO GOOD.  If you live in Southern California and ever need a fun and fantastic photographer, see Sara! CLICK HERE to check out her blog and photographer site.

Alright, this week is a busy one.  Julian's birthday is Wednesday, school starts for Ali on Thursday, and I get the opportunity of a lifetime to be the keynote speaker at my alma mater's freshmen orientation on Thursday night!  I get to share Bella's story, and how, by going to Chapman University, I was exposed to the ideas in music therapy that allowed mommy's voice and daddy's music to touch Bella on her first night on Earth, trapped in an isolette, but comforted by a little ipod playing her birthsong and bedtime stories read by Ang.  THANK YOU to my friend, colleague, and mentor, Christine Stevens, for giving me this chance of a lifetime.  It's ironic; Christine will be in Colorado promoting her new book, "Music Medicine," a book that got finished in the time that it did because of some coaching I gave her.   Normally, she does this opening event for Chapman.  Last year, she wanted me to work it, but it was Julian's birth-day!  This year, the timing was just right.  Christine is a phenomenal trainer, teacher, and author, and I highly recommend checking out her new book.  CLICK HERE for more info on it.

Saturday is Julian's birthday party at grandma and grandpa's house, and it is SOCCER THEMED!  The new season kicked off yesterday in England, so soccer fever is coursing through my sore legs and back (just played myself tonight)!  Looking forward to brainwashing Julian early and often! LOL.  GO ARSENAL!  (p.s. no comments on Van Persie going to ManU or Song to Barca... TRUST ME, I already know...)

Alright.  That's the scoop from here.  Gotta run, I am BEAT.

Miss you all,

God night.

August 6, 2012: "Pollenated..."

Heaveno!

Sorry I missed posting last night!  It's been a long weekend.  I just walked in the door 90 minutes ago from one of the most inspiring 3 day conferences I've ever attended.  I was invited to speak at this event in Santa Fe, NM called Muisc, the Brain, Medicine, and Wellness: a Scientific Dialogue.  It was held in concert with the 40th anniversary of the Santa Fe Chamber Music Festival, which brings internationally renown musicians together each summer for some amazing concerts.  The symposium was a lineup of speakers who are the top researchers in cognitive neuroscience who have been studying the interaction of the brain and music, top clinicians in music therapy, and some top musicians who are bringing music out into the community specifically to heal.  I can't remember if I've shared much about this, because it was a little hit or miss as to if I was participating and what I would be speaking on.  We settled on the two roles of music as therapy and music in therapy in the outpatient cancer center setting.  I basically shared about the program I am building (brick by brick) at UC Irvine, and all the research that informs my clinical actions.  My job as a saw it was to show the attendees the multiple levels of musical experience that are available for cancer patients.

It was amazing.

I had the opportunity to present alongside researchers whose books I read in college!  I spoke yesterday afternoon, and hit it pretty for out of the part.  The comments and feedback I got were very positive, so I was quite relieved.

When Susanne Hanser, the Director of the Music Therapy Program at the Berklee School of Music in Boston, who is one of the authors I read in college, presented this morning, she was gracious enough to quote ME TWICE during HER talk!  That rocked.

I got to meet so many of the brightest minds in our combined fields of music, neuroscience, and medicine and brainstorm on new questions, ideas, etc.  There is so much to talk about, but I am so tired.  We uncovered a GIGANTIC population of patients that have a real need for our services, and we couldn't think of ANYONE that has been doing any research on them.  I don't want to disclose any more than that, but suffice it to say, I could get my doctorate just from working on this one problem, it's that big.  Not that I need any new projects!

Kudos and big thanks to Ang for wrangling the kids while I was gone.  Ali had her first swim meet, her second reading class, and swim lessons from Saturday through today.  Great job honey!  I love you!
I will post pics soon.

I'll have LOADS of pics next Sunday night, and I'll see you then.  I just gotta get to sleep for now.

God night.