Tuesday, August 20, 2013

Welcome To Holland

There is an essay that has been circulating around the disabled community for quite some time and you may have even seen me post it on my personal Facebook page. It’s called, Welcome To Holland.


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.

Okay, so as Wendy’s mom, I personally never mourned over not having a normal baby. I knew at 23 weeks pregnant that I was going to have a “abnormal” baby and I was fine with that and I was totally up for the challenge. In my personal experience, I think when I got to the airport my ticket would have already said Holland because I knew exactly where I was going.  But my point is, this is a really great way to to tell people how it feels to be raising a special child.

Just FYI: most SN parents LOVE Holland and now wouldn’t dream of going to Italy.

Monday, August 5, 2013

Life Worth Living

Those two pink lines can change your world,
but so can a doctor with a few simple words.
“Abnormal” and “rare” will scare an expectant mother to death,
but she knows she’ll fight for her baby until her last breath.
Being a special needs mother is no easy task.
Putting herself first is a thing of the past.
She becomes an advocate and expert and learns to persevere,
because her child has come first since they have been here.
As a mother, she’s always fighting and constantly giving,
because her child was given life, and that life is worth living.