Sunday, March 16, 2014

This Was NOT What We Had Planned!

Photo courtesy of the Mead Family
"We always wondered how Carter would wear a wedding ring without a left hand. Today we discovered he likes to wear a wedding ring on his twins. I think he looks adorable wearing Daddy's wedding ring!"
Just think...

All your life, you've planned to become a parent.  You've looked forward to the day when you would be raising children, coaching Little League, watching gymnastics routines, the first day of school, prom, graduation, weddings, watching your child become the next MLB star, or President of the United States.  And then...something happens to change your world.  Your child is born, but not as you had planned. 

Over the past two decades, I have had the pleasure of working with many families who have experienced this revelation.  Some families were aware that there may be a physical or neurological issue prior to the birth, some found out immediately in the first few moments of birth, and others experienced it within the child's first few years.  The timing has never been important with these families.  They all experienced fear, anxiety, and nervousness that they would have no idea how to help their children to grow and succeed.  Yet somehow, even in spite of some professionals telling them that their children would not succeed or even survive, they have faced the odds and are raising some of the most amazing and accomplished children I have ever met!

This poem, by Emily Perl Kingsley, has been used often to try to better explain what life is like when your child is born with challenges.  Although at times it is certainly hard to find a silver lining or keep up a positive attitude when faced with what seem to be insurmountable struggles, just think about what you might be missing...


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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