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 the 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. Michelangelo's "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 flight
attendant comes 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. 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
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 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
Emily Perl Kingsley is a writer who joined the Sesame Street team in 1970, and has been writing for the show ever since. Her son, Jason, was born with Down Syndrome in 1974. She wrote a widely read article on the subject, "Welcome to Holland," in 1987, and has been an activist for children with special needs for over 30 years. Her son's story became the topic of an hour-long NBC special in 1977, titled This Is My Son, and Jason co-wrote the book Count Us In: Growing Up With Down Syndrome. By 1981, the duo was making over 100 appearances a year for various groups. Though Kingsley had written scripts for disabled children in the past, her experiences with Jason increased her desire to mainstream the use of different kinds of people, including Jason himself in occasional segments, guest stars like Itzhak Perlman, and the integration of Tarah Schaeffer as a full cast member:
No one looked like my family. They were all so healthy, so perfect. I felt totally isolated, like I had just disappeared. It was something I wanted to change.
Kingsley has written over 20 children's books, hundreds of Sesame songs, and two Sesame home video releases (Elmo Learns to Share and Elmo Says BOO!). She writes for other companies as well, and recently contributed to two Disney Interactive CD-ROMS. She has won 12 Emmys and 9 nominations through her work with Sesame Street, three EDIs (Equality, Dignity, Independence Award) and a Grand EDI from Easter Seals, and an award from the National Theatre of the Deaf. Kingsley recently began a more direct foray into puppetry when she performed her piece In A Contemplative Fashion at 2006's O'Neill Puppetry Conference, with puppeteers Amanda Maddock, Ryan Dillon, Lorraine Gilman, and Stefano Brancato.
* Post ini adalah untuk mengembalikan semangat gua. As a father and a husband, I need to be twice as strong because my family needs me. YES, memang tak pernah ada berita baik setiap kali kami pulang dari paeds, tapi itu bukanlah alasan untuk gua patah hati. Deep down inside, gua yakin Sarra tidak pernah putus harapan terhadap gua. I promise that as long as I'm still standing, I shall be her eyes, her ears, her mouth, her hands, her legs and foremost, I shall be the one who will never give up for her.