Welcome to Holland… again….

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I am re-posting this from last year.  Every now and again I have to re-read this and remember all the tulips and windmills that have come my way instead of focusing on the trip I did not get to take:

Every now  and again I send this poem/writing out to people to give an interesting analogy of what it feels like to raise a child with special needs.  While it doesn’t hold the exact same meaning for me as it did when my boys were very small and newly diagnosed as blind, I tend to revisit it at this time of year: coming up in a few weeks is Rare Diseases Week, a time for parents, caregivers, advocates and doctors of rare disease patients to come together and help push research forward.  I meet lots of people dealing with lots more difficult things than blindness, but one thing  we all have in common:  while we did not choose this path we are on, we celebrate all that it has to offer us 🙂


Emily Perl Kingsley.

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.

If  life isn’t going exactly as you planned, perhaps you can take another look and appreciate your path and what it may have to offer or teach you. Find the windmills… the tulips… and the Rembrandts 🙂

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