[blindkid] Coping with grief of having blind child fable

[Melissa Green]

Love your version of coping with having a child with a disability.
I think that it can apply to adults like myself as well who are blind, or 
have other disabilities as well.
You do experience many storms and you can come out either breused and 
damaged, or unscathed.  However, each storm and or battle makes you stronger 
and wiser.

Blessings!
Melissa Green
----- Original Message ----- 
From: "Rene Harrell" <rjharrell at gmail.com>
To: "NFBnet Blind Kid Mailing List,(for parents of blind children)" 
<blindkid at nfbnet.org>
Sent: Thursday, November 04, 2010 12:55 PM
Subject: Re: [blindkid] Coping with grief of having blind child fable


>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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