Our Babies

Our Babies
Luke and Claire

"Welcome to Holland"


By Emily Perl Kingsley, 1987. 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.
Showing posts with label Claire. Show all posts
Showing posts with label Claire. Show all posts

Thursday, June 19, 2014

Celebrations!

Paaaarrrrtttaaaayyyyyy!

It has been a fun-filled week of celebrations. Thanks to the Spurs NOT choking in the finals, Claire and Luke got to party in style waaaayyyy past bedtime. Why go to sleep when you can drive downtown with 5.5 kazillion other people, honk the horn, and yell out the window like a crazy person? Judging by her hair, Claire clearly had a wild time. Luke, on the other hand, was not a fan of the chaos, so he passed out while Claire practiced for her future partying days.


 The Spurs got the week off on the right foot. The celebration continued it was finally time to pick up Claire's new "legs"! Now, the average person might just call them "braces", but the truth of the matter is that she can not use her legs for weight-bearing without them - hence - "legs". As soon as we put them on she was instantly able to bear weight effectively for the first time. Don't get too excited over that - it was probably just the sheer weight that holds her legs down, but whatever, it is a step in the right direction.

Speaking of the right direction:  Guess who has a VERY happy nutritionist?!?! It's not about the number on the scale, but rather, it is about improvement. And improve she did! We are going to just keep chugging along with shoving food in her face. Luckily, we have new special juice boxes and some 'roids to make her grow. The doctor says it is just an "elemental supplement", but we know the truth. Watch for upcoming pics of her flexing her guns.

Let the celebration continue - tomorrow is Friday!