24 Hours of Loopy recap

Wow.  When there are so many amazing moments in a 24 Hour time frame, where do I begin.  From the start I guess…….Disclaimer: I will probably miss thanking someone during this post, please know that we appreciate and value everything that ALL of you do to make our lives special!

Friday afternoon was a hot and sticky afternoon.  The forecast called for a 60% chance of rain with strong thunderstorms possible.  Around 4:30 pm we got a strong shower for a few minutes and then 10 minutes of drizzle, and that was it.  6pm rolled around and with a gentle reminder to Jeff to just keep turning left, this is NASCAR country after all, the Loopiness began.  

Soon after starting, the costumes began and Jeff donned a pink tutu, which he probably won’t admit was his favorite costume.  Invited runners began at 7pm and enthusiastically jumped in wearing costumes that ranged from gorilla masks, top hats, funny glasses and even a pizza box.  In my opinion, the most worn costume was the grass skirt with coconut bra but the cow costumes were a close second. 

Ferris Bueller’s Day Off began at dusk and we had a pretty good crowd of people.  I forgot to mention that up until this point I had already spoken with a dozen or so people who had never heard of Batten Disease.  Usually I don’t have a difficult time talking to people about Batten Disease but I was struggling with it tonight for some reason.  Then came the first wow moment.  A couple came over and asked what was going on so I explained the event and Batten Disease to them, and got the what I call “deer in the headlights, OMG look.”   At this point in the conversation it usually goes one of two ways, a hurried “I am so sorry” and they take off or a “wow, how awful, is there a cure?” and a comment about someone they know who had this thingamajig etc.   This couple was different, they took a genuine interest, asked good questions and made sure to ask my name, Wendy’s name and the boys names.  This young to middle aged man grabbed my shoulder and asked if he could pray for our family and I said “absolutely.”  His prayer was not just about healing the boys, as a matter fact it was very little about that.  It focused on asking God to provide guidance to me as the man of the house and head of the family to provide strength, love and prayer to the household.  Exactly what I needed to hear at that moment in more ways than one.  The most amazing part of this encounter was what I overheard as they were walking away.   They were holding hands and she said “heck of a first date, huh?”

At this point around 10:30pm Jeff’s friend Steve Pieroni showed up and began running with him.  Steve had driven in from Chapel Hill and was running whenever Jeff was for the next 7 or 8 hours and looked like he could have run all day and night all weekend.  I also got a nice surprise from Andy Brown and Jim King who walked loops with me for several hours, I’ll bet we walked 6-8 miles together just walking and talking.

There was a little lull from 2am until 4:15am when two pairs of headlights came down the road and pulled into the lot.  Out piled a crew of ladies ready to run, and run they did, costumes and all for a couple of hours! Thank you to ringleader Steffany Ryan and her crew!!!! 

So by this time Summit Coffee is open, exactly what we all needed.  Our next group of runners officially weren’t supposed to start until 10am but many unofficially joined in the running from 7am-10am.  This is where the fun began with all the running and costumes on Saturday.  Huge thanks to ALL the guys and gals from the Davidson Area Running Team, DART was well represented for the entire 24 hours and as I mentioned earlier many of them came and went multiple times.  I have to say that Chas Willoman was a perfect green Morph guy, particularly with the bounce in his step.  Chad Randolph was perfect as 80’s Dance Fever star Danny Tario(sp) and the cow suit from Randy Klatt was perfect, somehow.

Our music began at 11am, thank you to all the performers, they were all fantastic!!!!!! Thank you again to Billy Jones of Birdsnest Music for arranging all of the performers and also performing from 6-8pm with Billy Jones and the Pocket.  I do need to especially recognize Chas Willoman, he began his day by running a half marathon up in Hickory, drove back down and ran as the green morph for a long time and then came back in the afternoon and kept us entertained with his voice and guitar!!!!!!  I think my favorite song had something to do with Perpendicular Teeth!?!?!?!?!?

Saturday afternoon I also spent several hours speaking with people who had never heard of Batten Disease and had another man and his wife pray over me and my family.  Please tell a friend who may not know about Batten Disease to help us raise awareness.

Saturday afternoon also brought one of my favorite moments as the King family arrived with their daughter Taylor.  Laura Edwards(pictured below) is Taylor’s sister and the blogger for www.taylorstale.com.  Her latest post explains what she did on Saturday afternoon better than I, so take a peek here: http://writethehappyending.com/2012/06/03/might-as-well-keep-running/.  Taylor lives in Charlotte and also is affected with Batten Disease.

Finally the end was near, and there were a couple of surprises waiting for me.   Sunday Union was our band from 4-6pm and they were bringing us home to the 6pm finish.  Their second to last song was a special shout out to Brandon and Jeremy, especially Brandon.  For some reason Brandon is fascinated with Elvis and they dedicated a great version of Jailhouse Rock to the boys.  That started the waterworks for me.  I was just recovered when we counted down the last few seconds of Jeff’s run and the applause began.  And everyone kept clapping, and kept clapping and kept clapping and kept clapping for 5-10 minutes honoring Jeff while hugs went around from our family to his family.   Then Sunday Union kicked in with a goose bump inducing rendition of Amazing Grace that was TRULY
amazing.  They finished by asking the crowd to sing the final verse with them.   Here is the moment as captured by David Boraks at www.davidsonnews.net.

We are so blessed to have the support of family and friends for events like this, we appreciate all that you do!!!!!!!

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About

I am married to Wendy and dad to two boys Brandon and Jeremy with Juvenile Batten Disease, a fatal neurodegenerative childhood disorder. I am also active with the Batten Disease Support and Research Association.

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