Sunday, June 16, 2013

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!



2 comments:

  1. Tim,

    On the University of Minnesota's website, I notice that their motto is 'Driven to discover'. That motto could have been written for you. You are constantly on a journey of self-discovery and that, I am sure, is the most difficult AND rewarding of all of life's journeys. Congratulations on all the strides you make (literally and figuratively) these days.

    I read the latest research info from Dr Tolar and his colleague - I have no doubt that the Lady with the Fabulous Socks is a huge link in the chain that these magnificent medics are building in their progression towards a cure for EB. You paid a huge price - I can't help but scroll up from this message box and come face to face with that wise, quizzical, amused and cheerful face that is your Bella and feel so sad that she's no longer here. However, I look again at that photo of her and I see a wisdom and a generosity of heart that make me know that she knows the difference she made - and continues to make. Does that make sense?

    My rooftops are awash with June rains, but there's a ray of sunshine in my heart.

    Love to all of you,

    Jane

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