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Friday, November 20, 2009

What's it Like to Have a Special Needs Child?

When my 15 year old was diagnosed, I met a woman whose child was dying of leukemia. She and her daughter were our roommates in the hospital for several months.

She was there when Koby received his diagnosis, and provided so much comfort for us, even though she, too, was suffering.

She gave me a sheet of paper, and on it was a story written by a mother whose son had Down's Syndrome. I still cry every time I read it, and always will.

Now, as a mother of four boys with special needs, and having lost my step-son to suicide not too long ago, these words just really hit home.

I figured I'd share these thoughts in the hopes of helping someone else with a special needs child.

WELCOME TO HOLLAND
by Emily Perl Kingsley

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 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...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 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.



© 1987, by Emily Perl Kingsley. All rights reserved. Reprinted with permission of the author.




4 comments:

Quadmama November 20, 2009 at 4:01 PM  

I've read that before and it always touches me. One of my daughters is considered "special needs," although her circumstances are pretty mild. Have I had to adapt my vision of what a "perfect" child is? Yep... but I can't imagine my daughter being more perfect any other way than the way she is.

KK November 20, 2009 at 7:29 PM  

We read this in my counseling class in grad school. I try to remember it when I give "bad" news to families. It has helped me help parents so many times! I don't work with kids any more, but I remember it well.

Deanna November 20, 2009 at 11:45 PM  

Angela,
You were there when we got Macie's diagnosis and well she turns 5 today. I am so glad you continue to share this story with others.

Too Many Hats November 21, 2009 at 9:29 AM  

Funny, I recently found this on the web and read it. It is very fitting.

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Mom's Fortress of Solitude by Angela McCoy is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License. Based on a work at momsgreatescape.blogspot.com. Permissions beyond the scope of this license may be available at http://momsgreatescape.blogspot.com/2009/06/contact.html.

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Angela McCoy is a freelance writer/editor, military wife and work at home mom (WAHM) to four boys with special needs. Her writing encompasses a myriad of topics -- Autism, ADHD, Auditory Processing Disorder, Cystinosis, Fanconi's Syndrome, kidney transplant, and more -- influenced by her two teenagers and seven-year-old twins. She considers writing to be therapeutic and utilizes her skills to counsel and inspire her readers. Angela is a quick-witted, 'no holds barred,' tell it like it is' humorist who has learned that laughter truly is the best antidote to life's adversities.

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