Monday, August 23, 2010

You Never Give Me Your Money / I've Got A Golden Ticket

Yesterday we received a letter from our insurance company detailing the costs for last month's Lumizyme treatments.  As I looked down at the amount we owe now that we've met our deductible, I reached for my insurance card, grabbed Maddie's hand, and became Grandpa Joe from Willy Wonka and the Chocolate Factory dancing and singing away to...

I never thought my life could be
Anything but catastrophe
But suddenly I begin to see
A bit of good luck for me

'Cause I've got a golden ticket
I've got a golden twinkle in my eye

I never had a chance to shine
Never a happy song to sing
But suddenly half the world is mine
What an amazing thing

'Cause I've got a golden ticket

I've got a golden sun up in the sky

And then I started to wonder what the insurance claims specialist must think when they receive yet another invoice from CHOP for those darn Crowley girls.  I imagine it goes something like this...

You never give me your money
You only give me your funny paper
and in the middle of negotiations
you break down

I never give you my number
I only give you my situation
and in the middle of investigation
I break down

It's clear that this little thing called Pompe Disease, like many struggles in one's life, can be viewed in different ways.  It can weigh you down, force you to question everything, embolden you to fight, or make you sing and dance.  While we have faced many feelings along the way, today Maddie and I were glad to be on the side of Grandpa Joe. 

'Cause I've got a golden ticket
I've got a golden chance to make my way
And with a golden ticket, it's a golden day

All the best,

Credit to:
Roald Dahl, "I've Got A Golden Ticket"
The Beatles, "You Never Give Me Your Money"


  1. Oompa Loompa Doompity Doo.

  2. Everything can be taken from a man but ... the last of the human freedoms - to choose one's attitude in any given set of circumstances, to choose one's own way.

    – Victor Frankl

  3. Ecclesiastes 3:4
    A time to weep, and a time to laugh; a time to mourn, and a time to dance;

    Also from the movie Footloose, which I am not sure if people remember you from the prom scenes as an extra, but I do.

  4. If you are distressed by anything external, the pain is not due to the thing itself, but to your estimate of it; and this you have the power to revoke at any moment.

    – Marcus Aurelius

  5. I always find myself taking a deep breath when that type of mail arrives, but then realize, it is what it is. Lumizyme may be expensive, but we are worth it! ;)

  6. I discovered early that the hardest thing to overcome is not a physical disability but the mental condition which it induces. The world, I found, has a way of taking a woman pretty much at her own rating. If she permits her loss to make her embarrassed and apologetic, she will draw embarrassment from others. But if she gains her own respect, the respect of those around her comes easily." - Alexander de Seversky

  7. Nature's first green is gold,
    Her hardest hue to hold.
    Her early leaf's a flower;
    But only so an hour.
    Then leaf subsides to leaf.
    So Eden sank to grief,
    So dawn goes down to day.
    Nothing gold can stay.

    I never pictured you as a greaser but stay gold Matt !

  8. "And above all, watch with glittering eyes the whole world around you because the greatest secrets are always hidden in the most unlikely places. Those who don't believe in magic will never find it."
    — Roald Dahl

  9. I am worried about the medical condition at both Downingtown East and Lionville Middle School. A report just came out that there is an abnormally high number of male broken hearts due to the beautiful Emma and Maddie.
    The irony is that when Emma is around Greg's heart beats just fine.