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.

Thursday, July 15, 2010

What day is it??

What day of the week is it???? Sorry I've been a little slow on updating the blog! Luke and I have been staying very busy while Patrick is at training. Between PT and OT, poor little Luke is EXHAUSTED!!! Miss Anita, Luke's OT, visited him on Tuesday at school. We spent an hour playing and working on strengthening exercises, but she was extremely happy with Luke's progress since his initial evaluation a few weeks ago. Today, Miss Karen, our PT is out of the office for the next 10 weeks due to shoulder surgery :( However, Luke loves her replacement! We made it through our entire session today without a single tear! Then, since we were on the other end of town, we made a special visit back to the NICU to see our favorite nurses who helped us through those first few weeks. While it was fabulous to see them, it was even better to get to carry my baby out when it was time to say goodbye.

Even those of you who just saw him at his baptism would be blown away by how much Luke has changed recently! From holding up his head to smiling to the funny new sounds that he discovers each day, he is getting much more animated as his personality is beginning to emerge. I would take more pictures, but the poor camera is experiencing some technical difficulties. Maybe we wore it out taking 10,000,000 pictures.....Never fear: my handy technical assistant (a.k.a. Patrick) will be back to save the day tomorrow!

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