Back again

Got back to Charlotte on Sunday afternoon completely spent.   Vegged around the house in front of the TV, I can only tell you a little bit about what I watched, but I did see the crash Elliot Sadler survived at the NASCAR race at Pocono.  To see how hard he hit the wall and got out of the car on his own power was amazing.  Particularly since the engine of the car was several yards away from the body of the car.   Sometimes this is how I feel when I see a certain interaction between Batten child and parent or other people.  It was a very productive Board of Directors meeting and as always it is great to see other families.  As I told a friend earlier today it is very humbling to look around at a room full of people who are amazingly strong.  How else can you explain being able to laugh, cry, smile and show unconditional love to your child, other people’s children and one another?   But sometimes there are certain times that just get me and I hit that wall at 120 miles per hour.  I can never make it through an entire conference without having a good cry and this year’s conference was no exception.  Twice on Saturday night I had to fight off the tears.  The first time was after all the affected kids came in and they are all on the dance floor in one place.  Harry Caray was singing “Take me out to the Ballgame” and I thought to myself how much I wished it were just a simple “One, two and three strikes your out” still. There were dozens of kids in various stages of the disease, parents who had lost their children, and siblings that have had to deal with things that they didn’t sign up for and still showing unconditional love.  One little girl raised over $700 with a lemonade stand to help her sister.  The second time was when I caught a glimpse of a Dad carrying his daughter around for his annual Daddy/Daughter dance.  I wish I had captured that moment on film, the look in his eyes as he danced with her was something that I will never forget.

But then I remember how much these children, families and friends have taught me along this journey and I smile.  I smile and I will climb back in the race car and drive again tomorrow.  Why?  Because that’s what race car drivers do and that’s what anyone affected by Batten Disease will do, it’s how we survive.


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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