I just finished a book - "Babies with Down Syndrome". I can't say I learned a lot - but it was helpful in understanding some of the ins-and-outs of Down syndrome. Some of the book discussed things like the importance of cleaning out your child's ears, and when to introduce solid foods. Totally irrelevant for us. My point is this...I was reading the last chapter, "Legal Rights and Hurdles" (which alone made the book worth it), when it dawned on me that this all pertains to Carter. We will look back at this chapter time and time again over the next 20 years.
And I thought...most families aren't reading about legal rights when they're thinking about bringing a child into the family. That's just.....not normal.
I closed the book, a little disappointed. "Is this going to be our life? IEP's and NCLB and LRE and...oh boy...what have we gotten ourselves into....".
No. I'm not going to walk away from this frustrated. I'm just not.
I picked the book back up, and went looking for some additional reading lists in the back of the book.
I came across this story - I've read it before - but I always thought it pertained to the parents who didn't choose their special needs child. I thought it was only for the parents who were shocked to learn their child had Down syndrome. Clearly, that's not us - at all.
"I'll read it anyways..." I thought......
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"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 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...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 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. |
© 1987, by Emily Perl Kingsley. All rights reserved. |
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Beautiful, right? If you're oblivious to what this means - Holland signifies a child born with special needs. Italy, of course, signifies a 'healthy', 'normal' child. Still clueless? Re-read, then.
As I read the story again - and again, I realized that it applies to us perfectly. There are times we're going to wonder what Italy might be like. There are times we might even wish we could leave Holland for a while. And that's okay. But there is beauty in Holland, that we would completely miss if we were in Italy. And someday...someday we'll go to Italy, and that will be incredible, too. But for now - we're going to Holland.
One Thing I Know For Sure: I love tulips. And there are lots of tulips in Holland.
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