Life with An Extra Chromosome (Welcome to Holland)

Welcome to Holland

By 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 guidebooks 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 guidebooks. 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 awhile and you catch your breath, you look around, and you begin to notice that Holland has windmills, tulips and even 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 go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, very lovely things about Holland."

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We found out Rylee had Down syndrome when I was 20 weeks pregnant. I am often asked if I could do things over again, would I want to know of her diagnosis before she was born. My answer is, most definitely, yes. And this is why.

We knew we were going to Holland shortly into our vacation-planning. (We'd only had 20 weeks to plan a trip to Italy... not 40 weeks.) So, we hadn't bought too many guidebooks for Italy, and our Italian was still very shaky.

"Oh... we're not going to Italy. Hmmm. Well, okay." Though we may have been a bit surprised, our reaction was far from one of devastation. We didn't personally know anyone who had been to Holland, but we knew that we could find the beautiful things about Holland.

We had time, before our vacation, to exchange our guidebooks about Italy for ones about Holland. And really, some of the guidebooks worked, no matter where you were visiting. (There are some ways in which a vacation is a vacation... no matter where you're going.)

We had time to let our family and friends know that plans had changed... instead of receiving postcards from Italy, they would be getting postcards from Holland -- still absolutely gorgeous postcards... just different.

When we got on the plane, we knew we were going to Holland. Instead of being upset, disappointed and shocked that we were not landing in Italy, we could look forward to all the things we'd get to do in Holland. No sadness. Just excitement.

Yes, we had friends that had gone to Italy. And they talked about how amazing it was. But, we also began meeting friends who had gone to Holland, and wouldn't have had it any other way. Friends who visited Italy had stories about the gondolas, and friends who visited Holland had stories about windmills. The stories were all wonderful... just different.

We don't have pain in the loss of a trip we didn't get to take. Later, after visiting Holland, we did in fact get to visit Italy. And it was fabulous. But do I wish we'd gone to Italy first?

Not at all.

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Six years ago today, we boarded the plane to Holland.

And this is the amazing little girl who took us there.

Happy 6th Birthday, Rylee Jayne