Saturday, February 27, 2010

Welcome to Holland

Thanks to Facebook and some Pompe email lists, we have met many people who are living the same life we are.  Some have passed these steps years ago while others are just beginning.  Anyways, a new friend sent me the following story which I thought you might enjoy.  This isn't about us or Pompe.  It has a message for everyone who's sharing this adventure with us or have landed in an unexpected place in life.

by: Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Last October, when Maddie was recovering from her muscle and liver biopsies and before we heard the word Pompe, Donna and Maddie worked outside planting bulbs in anticipation of Spring.  Now, those of us on the East Coast will have to wait a bit longer for the snow to melt and the flowers to arrive, but I have a feeling we will watch with extra anticipation for those Holland tulips to grow.  While we may have taken them for granted before, I'm sure they will be even more beautiful this year.

Enjoy the weekend,


  1. Beautifully said!! We have framed picture with a saying in our home,

    A little thing that can make a BIG difference.

    Love, The Richard Bennett Bunch

  2. I have not been to Italy, nor have I been to Holland. I have been to the Crowley home though where year round it is filled with fun, laughter and love. Thanks for sharing this story. Your garden is going to be beautiful this spring! Spring is coming!!!

    The Cestare Family

  3. What a beautiful parable. For those of us in Holland, it iscan be a beautiful place.

  4. “We may have bad weather in Ireland, but the sun shines in the hearts of the people and that keeps us all warm.”
    Marianne Williamson

  5. Mr. Crowley's Opus.

  6. Maddie and Emma- Both of you are such fine young ladies. Your strength and determination is deeply admired. "What lies behind us and what lies before us are tiny matters compared to what lies with in us." -- Ralph Waldo Emerson. Remember this and can do anything! You remain in my thoughts and prayers.

    Catie Gardy

  7. The Crowley family remains in my thoughts and prayers! You are amazing and Matt....the most eloquent writer. Thank you all for sharing your most personal stories. The Crowley5 is an inspiration for us all! Bobbi Filiaggi

  8. I wish the sun be always on your face, wooden shoes on your feet and the windmill always be at your back.

  9. Holland is a dream, Monsieur, a dream of gold and smoke — smokier by day, more gilded by night. And night and day that dream is peopled with Lohengrins like these, dreamily riding their black bicycles with high handle-bars, funereal swans constantly drifting throughout the whole country, around the seas, along the canals.

    Albert Camus

  10. I read the story and I find a fascination that the author chose Italy as the place to see the coliseum Imperfect in ruins. David (naked) or any statue with its imperfections. Venice as a city almost underwater. All of these imperfections that bring fascination and wonder and would make someone want to travel around the world to marvel. I only need to go to Downingtown to the Crowley Stonehenge... to marvel.

  11. grace
    1. Seemingly effortless beauty or charm of movement, form, or proportion.
    2. A characteristic or quality pleasing for its charm or refinement.
    3. A sense of fitness or propriety.
    a. A disposition to be generous or helpful; goodwill.
    b. Mercy; clemency.
    5. A favor rendered by one who need not do so; indulgence.
    6. A temporary immunity or exemption; a reprieve.
    7. Graces Greek & Roman Mythology Three sister goddesses, known in Greek mythology as Aglaia, Euphrosyne, and Thalia, who dispense charm and beauty.
    a. Divine love and protection bestowed freely on people.
    b. The state of being protected or sanctified by the favor of God.
    c. An excellence or power granted by God.
    9. A short prayer of blessing or thanksgiving said before or after a meal.

    Eurphrosyne is Greek for Donna

  12. I am thinking of the Crowleys today and I hope they are well.

  13. Spring makes its own statement, so loud and clear that the gardener seems to be only one of the instruments, not the composer. ~Geoffrey B. Charlesworth

  14. Talk uses up ideas. ... Once I have spoken them aloud, they are lost to me, dissipated into the noisy air like smoke. Only if I bury them, like bulbs, in the rich soil of silence do they grow.
    - Doris Grumbach

  15. The best remedy for those who are afraid, lonely or unhappy is to go outside, somewhere where they can be quiet, alone with the heavens, nature and God. Because only then does one feel that all is as it should be and that God wishes to see people happy, amidst the simple beauty of nature.

    Anne Frank

  16. "Travel is more than the seeing of sights; it is a change that goes on, deep and permanent, in the ideas of living." –- Miriam Beard

  17. “One very important aspect of motivation is the willingness to stop and to look at things that no one else has bothered to look at. This simple process of focusing on things that are normally taken for granted is a powerful source of creativity...”
    Edward de Bono

  18. Faith is not about how we feel; it is about how we live. ... Rule 1: We are all family. Rule 2: You reap exactly what you sow, that is, you cannot grow tulips from zucchini seeds. Rule 3: Try to breathe every few minutes or so. Rule 4: It helps beyond words to plant bulbs in the dark of winter. Rule 5: It is immoral to hit first.”
    Anne Lamott