Sunday, February 26, 2012

Holland Revisited

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.”

Some days I forget we are in Holland.  Most days, we are taking in all the sights, enjoying the experience, and noticing all the beauty in Holland.  For us, Holland has been a bit dramatic, but a very beautiful place!

Matthew is doing so well--he's relatively healthy, he's happy, he's learning and understanding, he's moving, and he's communicating.  We are so excited about how far he's come.  But once in a while, we are reminded we were supposed to go to Italy. It's pretty jarring when it happens. And it happened on Friday as we watched twin 2 year olds running around at the fish fry at church. We were reminded that though Matthew is high functioning in comparison to many other kids with chromosome disorders, he's still developmentally delayed and way behind where his typically developing peers are today. 

We landed in Holland, and may always be there with Matthew.  Thankfully Holland is a beautiful place to be.

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