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.


  1. What an amazing person you are, Matt!! I truly am amazed at each and every one of your posts and how you are able to convey your thoughts to everyone. You have every reason to be proud of yourself and your family. You all show amazing strength and love in all that you do. Your West Coast family sends all our love and best wishes during this holiday season and throughout 2011.
    Love, The Richard Bennett Bunch

  2. Imagine a Strength and Conditioning coach tripping a player on the sideline? Coach Crowley?

  3. The time to take counsel of your fears is before you make an important battle decision. That's the time to listen to every fear you can imagine! When you have collected all the facts and fears and made your decision, turn off all your fears and go ahead!
    George S. Patton

  4. I feel that there is always chatter in a father's head. I think your head now has yet another voice in the conversation.

  5. ‘The sorcery and charm of imagination, and the power it gives to the individual to transform his world into a new world of order and delight, makes it one of the most treasured of all human capacities.’

    — Frank Barron

  6. “Then indecision brings its own delays,
    And days are lost lamenting o'er lost days.
    Are you in earnest? Seize this very minute;
    What you can do, or dream you can, begin it;
    Boldness has genius, power and magic in it.”
    Johann Wolfgang von Goethe

  7. “Do not free a camel of the burden of his hump; you may be freeing him from being a camel.”
    G. K. Chesterton

  8. All women become like their mothers. That is their tragedy. No man does. That's his. ~Oscar Wilde, The Importance of Being Earnest, 1895

  9. I never pictured you as a New Yorker, but after re-reading this post, I think you and John Lennon heart New York.