I am often asked to describe the experience of raising a child with a disability -- to try to help people who have not shared this 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 Iataly. You buy a bunch of guide books and make your wonderful plans. The Coliseum. Mechelangelo's David. The gondolas in Venice. you may learn some handy phrases in Intalian. 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."
"<i>Holland??</i>" 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 <i>different</i> 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, evre 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.
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<i>Emily Perl Kingsley has been writing scripts for Seaame Street for thirty years. Much of her work on the show has focused on enhancing the understanding and acceptance of people with disabilities. Emily is the mother of Jason Kingsley (1974) and served as the dictation typist for Jason's and Mitchell Levitz's book </i>Count Us In: Gorwing Up with Down Syndrome.
学会为小事高兴，就会有更大的高兴的事情出现。别人为你做了一点好事情，赶紧欣赏他，就会有更多好事情出现。我的太太和别的太太逛街，碰到了便宜衬衫，两人都给先生买了一件。我一穿挺合身，很好；那位先生一看便宜衬衫，说这是啥破玩艺，我这么高层次的人怎么能穿这么便宜的衬衫?把衬衫扔一边了。两位太太的心情就不一样，那位太太再也不会给先生买东西了。美国一个教授来清华大学讲学，领着太太来。送行的时候我给他太太买了一个纱巾，美国人有一个习惯，当面打开礼物，美国太太把纱巾往身上一套，这个美国太太的块头也太大了，纱巾连肩膀都没遮住。美国太太隆重地感谢，Thank you，Thank you，Very Very Much，弄得我十分尴尬，这纱巾怎么这么不争气呢?当时下了一个决心，以后一定要给她买一个大纱巾。还是清华大学的女士明白，说没关系，她可以系在脖子上，我听了以后稍感安慰。