[blindkid] Coping with grief of having blind child fable

[Rene Harrell]

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