Message from our CEO

Recently, I was privileged to attend the annual convention of The Arc of the United States. Three of the presenters were Emily Kingsley, an Emmy Award winning writer and producer; her son, Jason; and his friend Mitchell Levitz. Jason and Mitchell have Down syndrome, and a few years back they wrote a book titled “Count Us In,” in which they chronicled their experiences and observations growing up with a disability. At The Arc Convention, Emily told a story about what it is like to raise a child with a disability, and I want to share her story with you. Perhaps some of you have read or heard this story before, but I think it captures the essence of the unique experience of sharing one’s life with a family member with a disabling condition. Here is Emily’s story:

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 flight attendant 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.

This story is emblematic of what it is like to be a parent who discovers that her child has a disability. It also is illustrative of the experience that individuals involved in our organization witness on a daily basis.

Individuals with disabling conditions have unique talents, capabilities, resources, and human capacities that can meet other individuals’ basic, emotional and transcendental needs in ways often unimaginable and unexpected, but always satisfying and fulfilling.

Life is unpredictable, and it doesn’t always seem fair. But if you can embrace and accept the circumstances that result when life throws you a curve, your existence can be enriched in ways you would never expect.

Paul Cesana

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Paul Cesana is the Executive Director of The Resource Center and the President of TRC Foundation, Inc. Paul first worked for TRC as the Director of Clinical Services until 1981. After moving to Aspire, he was offered the position of Executive Director of Opportunities Unlimited of Niagara. In 1988 he returned to The Resource Center as its Executive Director. During his tenure, TRC's budget has grown from $17 million to $80 million annually; the number of employees has swelled from about 750 to more than 1,200; and the number of individuals who benefit from the services and supports that TRC provides to individuals with disabling conditions, their families and the community at large has reached more than 17,000. Paul invites everyone to support the work of The Resource Center and TRC Foundation by becoming a member. For a small contribution, you can experience the sense of warmth and satisfaction that comes from knowing that you really are "Making a Difference in People"s Lives.