Saturday, December 11, 2010


Imagine all the people
Living for today

Imagine all the people

Living life in peace 

You may say that I'm a dreamer
But I'm not the only one

It's not often that I think of life without Pompe anymore.  It is so woven into our daily lives that it seems like it has always been here.  I am used to helping Maddie with her violin case because it can become heavy, reminding Emma to be careful not to trip on the stairs, or watching Donna and the girls pack up and head out for yet another treatment. Pompe has become something which I never thought it would - - routine.  So, as I sat in New York City I was surprised to find myself thinking of life without it.

Last Wednesday night I attended a company Christmas dinner at Del Frisco's Steakhouse in New York City with about fifty of my co-workers.  As I sat in my chair overlooking the Avenue of the Americas to the left and the Fox News building on the right something caught my eye that I had missed in the morning's paper.  The news ticker read, "IMAGINE - 30th Anniversary of John Lennon's death".  Imagine.  

Here was a group of my co-workers spanning in ages from their 20s to their late 50's, evenly mixed between single and married, with children and without, and of all races and creeds.  Despite that mix, I guessed no more than three have ever heard the words Pompe Disease.  Other than my manager and a couple special people who I told in the early days, I've mostly kept Pompe out of the workplace.  I've kept it to myself so I did not have the burden of being constantly questioned about the girls and because I did not want people to carry the burden of always feeling they need to ask.  I've kept it to myself so I could concentrate on why I was there, to work.

So as I listened to my co-workers speak about their Christmas holiday plans, their families near and far, and their aspirations for 2011, I began to imagine.  I imagined what our life would be without Pompe and what their lives might be with it.  I imagined our life back in the days when everything was "fine" and how they would manage their lives with the worry of health insurance, the next doctor's visit, and how they would handle the constant chatter in a father's head about the future.  What would they do different than I, or better than I?  What could I learn from them?  Would they proclaim it from every mountaintop or keep it to themselves?

As the dinner wore on and fatigue took one victim after another, my imagination turned from those around me to the wonder of my kids.  I imagined what my kids would be doing years from today.  I imagined what affect Donna's day in and day out dedication to them would be carried when they become parents and grandparents.  I imagined how Emma's desire to become an advocate for rare disease would bear fruit.  I imagined how Maddie's wonderful personality would bring smiles to other kids at next year's MDA Camp and how Carter's strength as the middle child would keep their family bond together years and years down the road. And then I thought how lucky I am that the strength which should be in two girl's muscles has somehow found its way into their souls and has become an inspiration to many.  

So as I put on my coat and wrapped a scarf around my neck, I left my thoughts of life without Pompe behind and walked into the New York City cold humming...

You may say that I'm a dreamer
But I'm not the only one
I hope someday you'll join us
And the world will live as one

Happy Holidays!

Credit: John Lennon, "Imagine"

The IMAGINE memorial in the Strawberry Fields section of Central Park, NYC.