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AmyandSabastian

A Little Inspirational Message For A Parent With A

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WELCOME TO HOLLAND

by

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

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.

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Thanks for sharing that. I have read that time and time again in my Special Education classes. I had forgotten about it though. I suppose it does sort of fit in with Celiac Disease also to an extent.

-Jessica :rolleyes:

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Thank you for sharing the story. My husband was diagnosed this past May, 2004. After only one visit to our G.P., he saw a Gut Doc who did a biopsy, within a week we had the diagnoses. We know how fortunate he is. We had our college age kids tested, one positive, one negative. The positive almost 19 year old will have an endoscopy within a few days. I have been studying hard since May to feed my husband, he appreciates all of my efforts. But since getting the phone call yesterday about my child I can hardly stop tearing up. I believe that God is in control of our lives, I am thankful that this is a life changing disease and not a life threatening one, or at least it is one we have control over. It's just so darn hard to imagine life at college in the cafe, spontaneous trips out at midnight for a snack and dorm cooking when the R.A. is gone. Your story stopped me in my tracks, at least for a moment I will admit. God is Good All The Time and All The Time, God is Good!

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Thanks so much for sharing the story. :)

gZimmiZ- I was Dx as an 18 year old freshman in college and it's a big adjustment but my 'dining services' dept. was very helpful and midnight snack run can still include french fries :) I've found some ways around diet restrictions and my friends have been very helpful. They know what places I will be able to eat at and occasionally pitch in with cooking. They even made me a gluten-free birthday cake! Hang in there!

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I like the story, I've read it before somewhere when I was looking into what was wrong with my son (other than gluten intolerance, because he has many health issues), and I find it inspiring.

But putting it into perspective, we have it easier than parents of children who are permanently disabled (either mentally, emotionally or physically), because we can leave "Holland" and can still visit "Italy", we just have to bring along our own food!! :D

God bless,

Mariann

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I have seen the poem in a lot of places, when doing research for my son's medical problems and from friends. I like the poem, but agree on it not really 'fitting' for kids 'just with celiac'. My son has some major medical problems and so celiac disease doesn't seem like a big deal at all to me compared to his other issues. Just my perspective, it is helpful to read that there is a silver lining to every cloud.

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I feel much more encouraged after reading the posts even though my 19 year olds Biopsy is positive for Celiac. Determined and facing life with a smile is the attitude I see in my kiddo. The older sibling called, told me, "I wish it was me instead", How sweet! I know things could be much worse for my child, I just needed to vent to someone who understands. Thanks for listening. Holland IS beautiful isn't it! Looking forward to Italy too!

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That's a lovely poem, thanks for sharing it. I know how you feel and then some. My daughter was diagnosed with celiac disease two months ago but she also suffers from 18q deletion syndrome, diabetes and hypothyroidism. It's a challenge every day but we make the most of it that we can. She's our very special child and life is quite a journey with her in our lives!

Lee

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