I was given this letter from a doctor when we found out about Kumaka's diagnosis in utero.
by Emily Perl Kingsley
©1987 by Emily Perl Kingsley.
I am often asked to describe the experience of raising a child with 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.
Below is our family's travelogue...
I was told I wasn't going to Italy as I was flying. I didn't enjoy my flight after
that,and I dreaded the landing. I was scared, and I was angry that I didn't get
to go where I wanted to go. I was envious of those that were happily getting off
the plane and jet-setting through Italy having the time of their lives. Once I
landed though, I looked around and realized I could find beauty in this place.
It was not glamorous by any means, but I quickly learned that who I was with
was more important than where I was. I learned the language and found all
the secret roads to get around easier. I met amazing local people who guided
me on my way and I met amazing people getting off the plane when I did. Our
families have toured Holland together, and done many of the same things.
When I get lost, I look for these dear friends to guide me back to where I
belong. I found a strength in myself and my family in Holland that Italy
never would have given us. I found beauty, grace, and knowledge. I found an
inner peace I didn't know existed and when I was afraid of the unknown in
Holland, I found a stronger relationship with God. Italy still sounds like fun,
but I have found resilience in Holland, and that is something I will always be
grateful for. I have moments of longing for Italy, but I love that I am
vacationing in a very special place that not every person is chosen for. I am
grateful for Holland and I wouldn't change the plane's path. Don't be afraid of