Skip to main content

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,
Matt

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

Comments

  1. Oompa Loompa Doompity Doo.

    ReplyDelete
  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

    ReplyDelete
  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.

    ReplyDelete
  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

    ReplyDelete
  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! ;)

    ReplyDelete
  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

    ReplyDelete
  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 !

    ReplyDelete
  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

    ReplyDelete
  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.

    ReplyDelete

Post a Comment

Popular posts from this blog

The New Adventure

Madeline Jane Crowley is an 11 year old girl living in suburban Philadelphia who was diagnosed with Juvenile Pompe Disease on November 18, 2009. Maddie is a vibrant child filled with humor, energy, and wonder. She believes in her family, friends, doctors, and the magic that can happen when people dare to believe. Her care is being lead by Dr. Bonnemann MD, Asst. Professor of Neurology and Pediatrics, at Children's Hospital of Philadelphia (CHOP), and includes a team consisting of a Genetic Counselor, Physical Therapist, Clinical Trial Specialist, Nutritionist and many others. Maddie will begin treatment with Genzyme's Myozyme drug in January 2010. What this means, we don't know. But we do know that our family and loved ones will support her every step of the way. Whatever happens we will fight for our daughter and will succeed in helping her and many others battling this disease. All for one, and one for all! Sincerely, Matthew and Donna Crowley

July's Forecast...Reduced Snowflakes

The night before we moved from our Northern California home a friend who learned we were moving to the Northeast asked me a question.  "Do you know it snows there, even when you don't want it to?"  I laughed it off speaking instead about the beauty of the Northeast, my new job opportunity, and of course the cheesesteaks.  While I thought it was a humorous question at the time, I must admit I repeat it each winter as I gear up to clear the snow from the driveway.  Seven years after living on the east coast I've realized I have two favorite parts of a winter storm.  The first is watching a heavy snowfall where the snowflakes are so large and distinct you can reach out and touch the magic of winter.  The second is when that last bit of snow is washed away by a gentle spring storm clearing the way for warm, sunny days.  Sure there's all that other "stuff" in winter that's cool too, but when it comes to co...

With a Little Help From My Friends

Oh I get by with a little help from my friends. Oh I'm gonna try with a little help from my friends. With a little help from my friends… Our long awaited appointment at Children’s Hospital of Philadelphia (CHOP) on January 6, 2010 has finally passed and was well worth the wait. I’ll apologize ahead of time for the length of this post as I summarize a five hour appointment. Yes, five hours. First off, we finally met with all our new friends on Maddie’s Team. I will name them here because we will use the names often in the future posts. Get ready…the list is a bit long. The CHOP team includes Dr. Bonnemann and Dr. Finkel in the Neurology Department, Dr. Mayer in the Pulmonary Department, Livija the Genetic Counselor, Allan the Physical Therapist, Donna the Dietician, Joan the liaison to Genzyme and Alan, Social Worker/Coordinator. The extended team includes Dr. Barry Byrne at the University of Florida; the folks at Genzyme including Dr. Edward Kaye the Vice President for Clini...