Re: It Could Be Worse Discussion / Faith

March 22, 2005

When I was in the NICU late one night crying over all our lost hopes and dreams

one of the nurses told me that story. For some reason that was the first thing

someone had said to me that actually snapped me out of my funk and began to make

me open my eyes and look at my child for the first time and begin to appreciate

what we had...

Oh, and I did mourn Aidan's clubfeet when I thought that's all I had to deal

with. I remember after we were diagnosed at 5 months we went to EZs for dinner

and I began to cry as I looked around at all the perfect children in there and

all I could see was all these perfect feet, I WAS PISSED. I didn't care it was

100% correctible, all these other people didn't have to go through it, why did

we. So Faith I do acknowledge your frustration and sympathisize as I too

mourned. However, after I had a preemie and was dealing with other issues, I

would have considered myself damn lucky that night at EZs had all else gone

well.

Whatever our children have or don't have bottom line we didn't end up in Italy

and it's hard to see Holland after all your childhood dreams of being a mother

were that of Italy. I do now consider myself lucky as I look at my friend Sandy

who's 11 month old is still in the NICU on a trach with all sorts of issues and

to top it off has just been diagnosed with liver cancer... Everything in

perspective I guess.

Anyway, long story short, mourn, grieve, and all that jazz as you have every

right and I didn't, by sharing my thoughts, mean to take any of that away from

you because you're definitely entitled. Your Italy, I'm sure didn't come with

serial casts and corrective shoes!! :-)

Sorry so long winded, I too think alot about the subject.

Sincerely,

Dawn-Marie dawnmarie2251@...> wrote:

That is one of the most eye opening things I have read in a long time. Thank

you for sharing it with us!

D,

number23 number23@...> wrote:

Glacier

This is the article I mentioned yesterday - about grieving the birth defect.

It's not very long but is a powerful piece of writing in my opinion.

s.

Welcome To Holland

by

Perl Kingsley

and ...

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 . 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.

March 23, 2005

Like I said, I certainly wasn't scolding. And, as I also said, I too have moved

on from the mourning phase and am indeed very thankful it wasn't worse. My only

point was that some people aren't ready to see that particular perspective, and

when I was in my blue funk that particular brand of optimism frustrated me.

Please don't be offended... we are after all discussing feelings, not facts.

Hundley jenhundley@...> wrote:When I was in the NICU late one

night crying over all our lost hopes and dreams one of the nurses told me that

story. For some reason that was the first thing someone had said to me that

actually snapped me out of my funk and began to make me open my eyes and look at

my child for the first time and begin to appreciate what we had...