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Welcome to Holland

Written 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 some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy a new guidebook. 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, 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.”

The pain of that will never, ever, 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 get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Shortly after I was told that there was something terribly wrong with Troy, just no one could tell me what, I received the above poem.  At that time, it was unknown who the author was.  Every day, since that day, I have carried it in my wallet.  Some people I have shared it with, but mostly I just read it to myself.  Here are my thoughts:

When I arrived in Holland and I really had no idea why I was here, so I joined a group of women who might be able to help me become more familiar with the territory.  There was a monthly discussion group for mothers of children who have disabilities.  I left that group in tears one night after about 5 meetings.   They felt it necessary to make me feel guilty that I was working full-time and they couldn’t escape their children, as well since Troy wasn’t diagnosed, my kid wasn’t like anyone else’s.

My mom, my mom’s best friend, my mother-in-law, acquaintances….everyone had had a friend of a friend who had been to Holland.  They all had advice; I shouldn’t have kept in the car seat as much, he needs better shoes to learn to walk, he isn’t getting enough attention,  I read an article in a British Tabloid that someone’s son learned to talk at the age of 12, maybe it was your breast milk!  On and on the list went.

Most of the medical professionals I met, knew where Holland was, but they didn’t know much about it.  They grilled me constantly, like a finger pointing to my chest:  Did you smoke?  Did you drink?  Did you throw up?  Did you take vitamins?  Did you have sex?  Did you bungee-jump?  Never once did they ask my husband what he did. 

You would think best friends and family would keep in contact with you while you were in this place called Holland, but many of them really had no idea what to say, once you conversed about the things they knew, like wooden shoes, windmills, licorice and tulips, for some there was nothing left to say.  Eventually the phone calls stopped coming.

At least growing up, I had seen a windmill, a tulip and a pair of wooden shoes, so some of it should make sense and feel familiar but none of it did.  There was nothing about Italy or Holland where I was. 

For me, it was much like landing in the middle of a deserted part of China.  No language was common, nothing was similar to what I knew before and it was difficult to meet new people because you tended to keep to yourself since the ability to share was painful.  I didn’t want to be here. 

 

I have learned to appreciate it and I have certainly learned a lot about this foreign destination.  I have shared my journey with those that were willing to listen, but I truly wish I had never travelled to this deserted destination in the first place.  It’s not what I wanted for my life and it certainly is not what I wanted for Troy’s life to be.  It’s not to say it’s a bad place, it’s just not where I wanted us both to be.

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