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Welcome to Holland – 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.

c1987 by Emily Perl Kingsley. All rights reserved.

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Um félagið

Neistinn, styrktarfélag barna og fullorðna með meðfædda hjartagalla var stofnað þann 9. maí 1995

Félagið er opið öllum þeim sem áhuga hafa á velferð hjartveikra barna og fullorðinna með hjartagalla. Í dag eru um 500 fjölskyldur í félaginu.

Neistinn miðlar fræðslu hvers kyns sem lýtur að hjartagöllum og meðferð þeirra hér á heimasíðu félagsins og á samfélagsmiðlum. Félagið heldur úti öflugu félagslífi(https://neistinn.is/starfsemi/), fjölskyldum hjartabarna til skemmtunar og stuðnings. Krakka(https://neistinn.is/krakkastarf/) og unglingastarfið(https://neistinn.is/unglingastarf/) þykir einkar líflegt. Þá stendur Neistinn að baki Styrktarsjóði hjartveikra barna(https://neistinn.is/styrktarsjodur-hjartveikra-barna/), sem styrkir hjartafjölskyldur fjárhagslega.

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