Tuesday, May 10, 2011

Here I go...

After reading some of my friends blogs, I've really enjoyed them and I decided to take a stab at this myself. About the title, many of you who have a special needs child will probably understand, but those of you who don't, let me explain.

When we (and yes I mean we as a family, as it's all consuming) were first diagnosed with Rett Syndrome we were given this little story about going 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.

Now, Emily is right, Holland isn't a terrible place. But I don't WANT to live there nor do I want my daughter to, hence the name of my blog and the reason I will fight for a cure for Rett Syndrome till the day I die.

I'm sure this will be a journey and thanks for coming along for the ride.


  1. I, too, received the essay. Had the pleasure of talking to the author last year to ask for permission to distribute it at a conference. She was awesome! I also liked including this with Christmas cards years ago to help our family and friend understand that we are not "tortured" or "miserable" just living a different adventure. Besides, I always did prefer tulips to wine!

  2. yay!! so excited! i really wish I had thought of this blog title though! its perfect!