Future Reflections Winter 2011
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by Rene Harrell
From the Editor: The Blindkid listserv sponsored by the NFB and the NOPBC is a discussion forum for parents of blind children across the country. Recently several listers shared their thoughts about a story called "Welcome to Holland" which is sometimes used in an attempt to comfort new parents of a child with disabilities. Some people on the list wrote that the story brought them solace, while others felt that it seemed to minimize their pain. Here is the thoughtful response of Rene Harrell of Colorado Springs, president of the Colorado Parents of Blind Children.
From: Rene Harrell
To: NFB-NET Blind Kid Mailing List (for parents of blind children) email@example.com
Subject: Re: Coping with grief of having blind child fable
Date: Thursday, November 04, 2010 1:56 PM
I think it would be helpful in this discussion to post the actual fable. It was written and copyrighted by Emily Perl Kingsley, and it's called "Welcome to Holland." Here it is.
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 guidebooks and make 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 place full of pestilence and famine. It's just a different place. 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 begin to notice that Holland has windmills and Holland has tulips. Holland even has Rembrandts.
Everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. For the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned." The pain of that will never, 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, very lovely things about Holland.
I don't think this story is meant to trivialize the multitude of feelings that come with having a child with a disability. The author acknowledges the loss and the pain, but she tries to show that a lifetime of mourning means we miss finding joy in the circumstances that we have.
This fable resonates well with some parents while others feel very offended by it. I think it really comes down to how the parents feel about their unexpected trip. Do they feel that Holland is simply different, or do they feel that they have landed someplace horrible--not in Holland, but in Rwanda during the genocide?
I think many parents feel as if their plane had been hijacked and taken them to a terrible place. Some children may not exactly be facing pestilence and famine, but they are facing disease--disease that causes pain and threatens their very lives. I can understand why these parents don't feel like they've been taken someplace unexpected but benign, and instead feel that they have landed in a very threatening, scary place indeed.
Ultimately, however, I think the point of the story is really about attitude. The loss doesn't evaporate, but the fact of the matter is that we're here and not at the destination we expected. We can focus on mourning and pining for the place we thought we'd be, or we can look around wherever we are and claim the blessings of this new place as our own.
The Holland analogy recognizes that parenting a child with a disability is different and involves loss. It also asks an unstated question: are that loss and that difference malignant or are they not? I appreciate the question, and I've done a lot of reflecting on this story in relation to my own experience parenting children with special needs. I have one child who is blind and has a developmental disability, one with high-functioning autism, one with life-threatening cardiac defects, and one with cerebral palsy and developmental delays.
I've come to a somewhat different analogy, because I don't think the process of having special needs children always follows a predictable, linear pattern. When I describe my experience, I borrow from Emily Kingsley's story, but to me it's more akin to planning a voyage on a huge ocean liner and finding myself on a little sailing yacht. It's challenging to learn to steer and navigate. My little boat is more vulnerable to unexpected waves and big storms, and it requires a different level of vigilance and action. The learning curve is so steep that sometimes I wonder whether I will ever feel confident in my ability to control this vessel. I have no directions on board, no guides, just a set of tools and supplies that I don't know how to use. Storms rage, waves seem to come out of the blue and knock us off course. I feel powerless to do anything but pray and hope for survival.
At first I'm totally focused on trying to master my boat. I do nothing more than take a passing glance off the bow and wonder wistfully if I am completely alone. Then, finally, I start to look in earnest. Lo and behold, there are other little sailing yachts off in the distance! We shout to one another across the ocean, trying to figure out where everyone else is going. Is anyone else going in the directions we're traveling, or are we each alone on our charted course? This task is especially challenging since none of us is really certain where we're headed.
Gradually we have learned to keep a keen eye for those other little boats on the horizon. We learn to anticipate a brewing storm and to navigate around some of the bigger waves. Sometimes a whole group of us gathers together. We share what we've learned with the newer captains, and glean information from those more experienced.
At last the wind is quiet, the ocean looks like a sheet of rippling turquoise. The water is warm and we stick our feet over the backs of our boats. We chat with our neighbors and friends until the sun sets and begins to rise again. I think of how few people will ever experience this beautiful sunrise the way I do, and my neighbors with me. I close my eyes and slowly inhale, trying to capture every sensation of that perfect bliss.
And yet, no matter how good I get at navigating around storms, sometimes they still hit out of the blue. With no warning the rain beats on my sails, the waves wash over the deck. The wind blows my little boat further into the stormy waters. Crying with fear, anger, and frustration, I hunker down while the storm batters me to and fro. I close my eyes to remember those exquisite sunrises. I work just to hang on and survive. There might be damage to my boat, but there will also be early mornings in a calm sea again, watching the sunrise from my back deck with my friends.
And so it goes, with storms that give way to sunrise and sunrise that explodes into storms. Each storm teaches me something new. Sometimes I make it through the storm triumphant and unscathed. At other times I'm battered and bruised and my boat's sails hang by mere threads. But whatever happens, I always look forward to rejoicing with the sunrise. I know there is always a sunrise waiting for me.
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