As a caregiver of my daughter with a disability, I often get approached about why I do this when trying to balance a career and a life with my husband and older daughter. At times, I am at a loss for words and tend to over explain my circumstances. I kindly am told of various residential options in the area--of which I have tried out--and my "needing to get a life". I would even get some raised eyebrows when I say I am now comfortable with having my daughter reside in our home. I have respite care also provided for her. As caregivers, we are made to feel bad that we don't have the same life as others. I was trying to find a way to tell my friends and family what the experience is like. This came answered unexpectedly when I came across an essay recently that eloquently explained the life I have and live in deciding to care for my daughter. The essay was written by Emily Perl Kingsley, titled "Welcome to Holland". Ms. Kingsley also raised and cared for a daughter with a disability. Enjoy:
Welcome To Holland
by Emily Perl Kingsley. Copyright©1987 by Emily Perl Kingsley. All rights reserved. Reprinted by permission of the author.
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 guidebooks. 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.
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