Archive for July 22nd, 2015


I  was scanning the archives for the blog and came across this entry from four years ago, written in the immediate aftermath of that year’s West End Gallery opening.  It had the story of a young boy with a rare disease and a message that really touched me then and now.  Thought it deserved another run today:

josiah-vieraWell, the opening is over and the show continues to hang at the West End Gallery.  Good opening.  Talked to a lot of really nice people, many new to me.  Many thanks to everyone who came out.   You made the evening complete and  I could not be more grateful.

That said, I was sure glad when the night was over.  There comes a point near the end of an opening, especially in the aftermath of constantly promoting it by writing about it here,  where I am really tired of talking about me and can’t wait for that moment until I don’t have to say anything to anyone.

So later that night, we came home and decided to quietly watch that night’s Jeopardy,  a show I have watched intently since I was a child when Art Fleming was the host in the 60’s. Before it came on, I caught the end of the ABC Evening News and there was a story about their Person of the Week.  It was a young boy, Josiah Viera, from central Pennyslvania who suffers from Progeria, an exremely rare (something like only 54 cases in the world) disorder where the child begins prematurely aging, most having a life expectancy of between 8 and 13 years.  Josiah, now 7 years old, has the tiny body of a 90 year old, taking cholesterol and arthritis medications. He is 27 inches tall and weighs 15 pounds.

But Josiah doesn’t dwell on the hardships of his condition.  Instead he concentrates on his passion, that thing that brings him sheer joy: baseball.  He lives for the game, wanting to play it from the minute he wakes until the end of each day.  He approached a coach at the local t-ball league in Hegins, PA and told him that he wanted to play in the games.  They feared he might not survive more than a single game and indeed, after his first game, Josiah suffered a series of mini strokes and was hospitalized.

But he recovered quickly and his desire for the game was so strong that he was back after three weeks.  The news of this little boy and the joy with which he played the game captured the hearts of the local folks and by the last game there were several hundred fans ( not your usual t-ball crowd!) all cheering him on and chanting his name.  And as he stands on the bag at first base, which seems like a table under his small body, Josiah smile glows with the sheer and absolute joy of being safe.

Absolute joy.  How many of us allow ourselves to feel that?  Josiah’s time here is limited, as it is for all of us.  Yet his life is not sadder for that knowledge.  Instead he has somehow chosen to find joy in those few days, rejoicing in the moment instead of fearing the future or focusing on the  life that might have been under different circumstances, things which too many of us allow to take over our lives.

Life is now.  His pure joy is a lesson for us all.  Life’s too short to not revel in those things that make us happy.

What is your joy and if it’s not the biggest part of your life, why is that so?

Below is the longer version of the story from ESPN on which the ABC story is based.  It’s a beautifully done report.  Have a great Sunday and again, thank you for everyone who came out Friday night– you brought me a little of that joy that I speak of.

2015 Update:  Josiah is now 11 years old and still as much in love with baseball as ever.  He is the an honorary bench coach for the State College Spikes, the St. Louis Cardinal’s Class A minor league team located in central Pennsylvania.  He plays cards with the players before the game, gives the manager bits of advice on game moves and provides the team with much more than they could ever give him in return. He also went to spring training with the  major league St. Louis Cardinal, getting to hobnob and even play a pickup game with their star players.  Throughout it all, that joy sparkles and inspires.  As one player said after going through a particularly tough game, “When I see that little guy across the clubhouse, I know I’ll be fine.”

There’s a great article from MLB.com that gives all the updates on Josiah.  Click here to see it.

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