By far the best thing that anyone did for Dusty and I after Coopers diagnosis was to send us this article by Emily Perl Kingsley. Dusty's wonderful step-mom Cindy sent this to us and I can easily say that this was the one thing that helped me place into words exactly how I felt. I have this printed and on my desk and I read it often. I love Cindy more than you can imagine. She has been an advocate and an incredibly strong shoulder for me to lean on. I desperately wish I lived closer to her.
This is an amazing article for anyone who is raising a child with a disability. I think this perfectly puts into words how I feel/felt now that we have Coopers diagnosis.
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
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.

1 comment:
Our pediatrician has this posted on the back of several of the doors in his patient rooms and I just love it. While I'm not raising a child with a disability, it gives me such beautiful insight into what moms who are deal with on an emotional level each day. Glad you decided to share it as well :)
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