Thursday, July 4, 2013

Come Together

Here come old flat top
He come groovin' up slowly
He got joo joo eyeballs
He one holy rollers
He got hair down to his knee
Got to be a joker
He just do what he please

He wear no shoeshine
He got toe jam football
He got monkey finger
He shoot Coca Cola
He say I know you, you know me
One thing I can tell you is
You got to be free
Come together, right now
Over me

Many years ago I was that guy in the car next to you...singing along to FM radio and using the steering wheel as a drum set.  Unless the singer was clear or I was lucky enough to find an album with liner notes, I had no idea what the lyrics were so filled them in with something that sounded right.  One song that challenged me over and over again was The Beatles "Come Together".  Despite many mumbles and guesses, I could never figure out the lyrics or what they all meant.  While it might have meant more if I knew the lyrics, I was perfectly fine as long as I could belt out the message "Come together, right now"!  

On March 17th we attended the third annual MDA Muscle Walk in King of Prussia.  Our goal was to raise awareness for Muscular Dystrophy and money for Pompe Disease research.  Once again, we were blessed with incredible support from our family and friends allowing us to raise over $5,000!  In addition, we were joined by an ever larger group of friends who walked alongside us to celebrate the day and show support for our family.

Like the years before, Donna and I were quite busy the days and weeks ahead as we reached out to raise money and ensure we would again have a big team of walkers. We had a rough first part of the year with Donna's mom's passing, Emma's bout with mono, and all the things that come along with prepping for high school graduation and college so it was a bit of a blur.  Regardless, we decided to do our best and hope the event would be as good as in the past.  

Since this year's walk coincided with St. Patrick's Day, Emma and her friends came up with a great slogan which they painted on green t-shirts - "Lucky Day for the MDA".  With a new slogan, new signs, and new energy, the kids and their friends hit the walk with swagger enjoying a great feeling of camaraderie.  In addition to the all the teenagers, we were blessed with several of our friends. Not surprisingly, the MDA put on another grand event filled with several teams of walkers, live music, and fortunately for us parents lots of coffee!   

That morning I was the greeter.  I scurried about collecting last minute donations, directing everyone to the starting point, and distributing t-shirts.  Before I knew it the walk was underway so I found a quiet corner and enjoyed the parade.  At that moment I was hit by the strangeness of it all.  "How did we end up here," I thought.  One part of me could clearly remember a young man singing away to the radio without a care in the world while the other couldn't remember life without Pompe Disease or the MDA.   

At the surface it made no sense for us to be at an MDA event.  Despite all the wonderful things the organization has done for our family, it still felt like a foreign land at times.  This wasn't in the plans a young man laid out while driving down the California freeways, singing away to that Beatles song, but isn't that the beauty of life? Just like the confusing lyrics of the song, you can't always make sense of the future even if it were to be written out ahead of time for all to read.  However, if we embrace reality, support our kids, and lean on our loved ones we don't have to understand what it all means along the way.  We just have to realize the importance of occasionally finding a quiet corner, reflecting on your blessings, and celebrating with those who go out of their way to show their love when they ... Come Together!


Our good friends Greg and Bob once again volunteered to take photos of the event.  Here are a few I think you'll enjoy.  

If you'd like to see more, please see http://mdamusclewalk2013.com/

A supportive group!

Carter and his friends

Maddie and some of the girls

 Showing the signs!

Emma, Maddie, and their friends Liam and Anne Marie

Credit to: The Beatles, "Come Together"