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.


  1. So fun! Way to go Ali! That's awesome, Sweetie!

  2. I think PUCK should bring Christie out!!!

    By the way, Ken has already let me entertain the idea of 2014 Time to Fly...and actually coming to MN!
    Wooooo Hoooooo!

  3. I absoultely LOVE the fact that Christie is so involved with a cause that does not affect her on a "personal" level! I have always thought that it should be those of us on the "outside" of a cause/condition/disease that should be some of the most involved, mainly so that those on the inside of the condition can focus on fighting the actual disease itself instead of having to try to raise awareness of that disease. Lets spread the responsibility so the weight of something as heavy as EB is not piled on only a few people :o)
    Im so glad the event this year was such a success...I love the comparison pictures of the participants the first year compared with this year. I think it is safe to say that your message is getting through!!
    Kelley from MO