[blindkid] Coping with grief of having blind child fable

SUSAN POLANSKY sepolansky at verizon.net
Tue Nov 9 03:20:56 UTC 2010


Many times over the last 14 years I have used "Welcome to Holland" to help 
others understand how we felt when Jason was born. It was also very helpful to 
my husband and I when Jason was a baby. 

 Susan 




________________________________
From: Carol Castellano <blindchildren at verizon.net>
To: "NFBnet Blind Kid Mailing List, (for parents of blind children)" 
<blindkid at nfbnet.org>
Sent: Sun, November 7, 2010 2:16:15 PM
Subject: Re: [blindkid] Coping with grief of having blind child fable

Oh Rene, I like yours MUCH better!  That was really lovely writing!
Carol

At 01:55 PM 11/4/2010, you wrote:
>I think it would be helpful in this discussion to post the actual analogy.
>It was written (and copyrighted) by Emily Perl Kingsley and it's called
>
>"WELCOME TO HOLLAND"*
>
>*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 stewardess 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.
>
>
>I don't think this analogy is meant to trivialize or minimize the multitude
>of feelings that come with raising a child with a disability. She
>acknowledges the loss and the pain, but she attempts to keep them within the
>context of recognizing that a life mourning what is lost means we miss the
>ability to find the joy in the circumstances that we have, in the
>circumstances that aren't changing.
>
>This article resonates well with some parents, and I've also seen other
>parents who feel very offended. I think it really does come down to whether
>or not the unexpected trip (aka "Holland) ends up feeling  "different" or
>whether or not it truly feels horrible and bad to the parents experiencing
>it (aka "it's not Holland, I feel like I ended up Rwanda during the
>genocide").
>
>  I think there are many parents who feel like they *have* hijacked the plane
>and taken them to a horrible, disgusting, filthy place. And some children
>may not be facing pestilence and famine but they *are* facing disease---
>disease that threatens their child's very life. I can see why they don't
>feel like they've been taken someplace unexpected-but-benign, and instead
>feel that it is indeed a very threatening, very scary place indeed.
>
>But, I think the ultimate point of the story is really one about attitude.
>The loss doesn't evaporate, but the fact of the matter is that we're "here"
>and not at the "there" we expected. We can focus on mourning and pining for
>where we thought we'd be, or we can look around wherever we are and claim
>the blessings of that place as our own. The unstated question that comes
>with the Holland analogy is "yes, parenting a child with a disability is
>different and involves loss, but is that loss and difference malignant or
>not?" And I appreciate the question, and I've done a lot of reflection on
>this story as I relate it to my experience parenting multiple children with
>special needs (one with blindness and MR, one with high functioning autism,
>one with life-threatening cardiac defects, one with cerebral palsy and
>developmental delays).
>
>I've come to a slightly different analogy, because I don't think the process
>of having special needs children always operates on such a linear,
>predictable pattern. So, when I describe my experience, I borrow from
>Emily's pattern but to me its more akin to a comparison between taking a
>huge ocean liner versus a sailing yacht. I was ready to set sail, and all of
>a sudden I found myself on a much smaller boat. It's more challenging to
>learn to steer and to navigate. My littler boat is more vulnerable to
>unexpected waves and big storms and sometimes requires a different level of
>vigilance and action. The learning curve to master sailing this boat felt so
>steep, I wondered when I would ever feel confident in my ability to control
>this ship at all! I had no directions in my sailboat, no guides, just a set
>of tools and supplies that I didn't know how to use. Storms raged, waves
>seemed to come out of the blue and knock us all over the place and I felt
>powerless to do anything but pray and hope for survival.
>
>At first, I was so focused on trying to master my own ship, that I did
>nothing more than take a passing glimpse off the deck and wonder wistfully
>if there was anyone else out in this great blue ocean, or if I was
>completely alone.  I started looking in earnest, and lo and behold there are
>*other* little sailing yachts out in the distance! We shout to one another
>across the ocean, trying to figure out where everyone else is going....if
>anyone else is going in the directions we are traveling, or if we're all
>alone on our charted course, a task made all the more challenging by the
>fact that none of us is really certain as to where each of us is really
>headed. Gradually, we learn how to keep a keen eye for those other little
>boats on the horizon. We learn how to anticipate a brewing storm, how to
>navigate around some of the bigger waves. Sometimes a whole group of us
>gather together. We share what we've learned with the newer captains, and we
>glean information from those more experienced. The wind is quiet, the ocean
>looks like a sheet of rippling turquoise, the water is warm and we stick our
>feet over the back of our boats, chat with our neighbors and friends until
>the sun sets and begins to rise again. And as I watch that sunrise, I think
>of how few people will ever get to experience this beautiful the sunrise the
>way I am, and my neighbors with me. And the whole thing is so beautiful that
>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. In the blink of an eye, the rain beats on my
>sails, the waves wash over the deck, and the wind blows my little boat
>further into the stormy waters. And I hunker down while the storm batters me
>to and fro, simultaneously crying with fear, anger and frustration and
>closing my eyes to remember those be exquisite sunrises. And so I hang on
>for dear life, knowing if I can just hang on and survive, there might be
>damage to my boat, but there will also be early mornings in a calm sea,
>watching the sunrise from my back deck with my friends.
>
>And so it goes, the storms that give way to the sunrise and vice-versa. Each
>one teaches me something different, and something new. Sometimes I make it
>through the storm triumphant and unscathed and other times I'm battered and
>bruised and my sails are hanging by mere threads, but I always always look
>forward to rejoicing with the sunrise, and I know there is always a sunrise
>waiting for me.
>
>
>Rene
>
>Colorado Springs
>
>mom to five amazing kids
>
> >
> >
> >
> > -----Original Message-----
> > From: Gerardo Corripio <gera1027 at gmail.com>
> > To: BlindKids <blindkid at nfbnet.org>
> > Sent: Wed, Nov 3, 2010 1:34 pm
> > Subject: [blindkid] Coping with grief of having blind child fable
> >
> >
> > Hi guys: the other day listening to a Spanish podcast regarding the process
> > parents have to cope through in dealing with the diagnosis of blindness in
> > children a fable came up, thus I'd like to share; probably more then one of
> > you guys will identify yourself with it; I'll adapt to a US version of it.
> > Suppose you book yourself a trip to let's say Cancun, Mexico. Excited you
> > begin packing your things, when the day arrives going to the airport,
> > getting on the plane all excited and can't wait until you get to your
> > destination! You're about to land when the lady in the cabin says we've
> > arrived in Alaska. You say no I wasn't going to Alaska I was going to
> > Cancun! The lady says well you can't stay onboard, thus you have to get off
> > whe
> >
>
>
>--
>" I may not have gone where I intended to go, but I think I have ended up
>where I needed to be."
>-- Douglas Adams
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>

Carol Castellano
National Organization of Parents of Blind Children
973-377-0976
carol_castellano at verizon.net
www.nopbc.org  


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