Wait, this isn't what I signed up for!

As a parent of a child with special needs, you come across all types of advice through the years.  Some good, some bad, some worth passing on, some not worth a second thought.  You also form a special bond and connection with other parents of children with special needs and we form informal support groups. 

After Joseph was born I went through so many emotions.  Why did this happen?  This is not fair!  This isn’t what I signed up for!  It hurt to watch my friends’ kids who were Joseph’s age running around with their friends, playing soccer, going to boy scouts or a baseball game.  I would sit there and watch with hurt and jealously as they had sleepovers for their kids knowing Joseph would never have one with his friends.   There were plenty more but you get the point.  These days these types of things don’t upset me as much as they do because I’ve come to understand that Joseph is a very happy, loved, and adored little boy.  He doesn’t know any different.  I’M the one who has the problem, not him.  ;-)  

My very first “support group” was a Yahoo Group (yes, I said Yahoo) for children with HIE-Hypoxic Ischemic Encephalopathy.  That was 8 years ago and I am still a member.  In the beginning I asked all sorts of questions and solicited advice, and the group lovingly gave it.  There are veterans in the group—their babies are teenagers or young adults and they’ve experienced most of the trials and tribulations that most of us new parents were just faced with.  I’ve “met” some really amazing people through the years, from California to Virginia, to Pennsylvania, and even Australia and Canada.  Joseph and I have met a LOT of his online friends in person, and those in person introductions and conversations have grown into invaluable friendships and bonds that will last for a lifetime.   By the way, I now consider myself a veteran. 

One story passed along from the “veterans” to the “rookies” is the story of Welcome to Holland.  It is an attempt to help these new parents and others understand the thinking and the world of parents of special needs children.  It a great analogy and I hope you enjoy.  I’ve seen the tulips and Rembrandts, and they are breathtaking.

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.