Emily Perl Kingsley's 'Welcome to Holland'

The day Eli was diagnosed a fellow special-needs mom posted this to my wall. A friend - who has been my guide through this - shared it again today. 

This has been a difficult last several days and reading this again was needed. 

And I absolutely love tulips. 

Photo courtesy of Google images. Original source could not be found. 

Welcome to Holland

by Emily Perl Kingsley

©1987 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.

Covering Giant Little Ears

I knew the church would be crowded. All of the Chreasters would be there (those who only go to church on Christmas and Easter) and I had no idea how this would go. I wanted us to sit together as a family. I didn't want to put Eli in the nursery like we do every Sunday - wasn't even sure if it would be open. He looked so precious in his seersucker suit - the one Logan was too big for before he even got to wear it. 

He knew he looked cute which made it even better.

We arrived ten minutes early and all that was left was the center of one of the back rows. To exit the pew we would have to climb over people. I can't tell you the anxiety that gives me. So many good friends and family say not to worry when there is a meltdown - that no one notices - but I know, I know, that every single person in earshot notices when those happen. Yes, it is going to make me sweat. Yes, it is going to make me feel like the worst mother in the world. Yes, I will feel helpless and isolated and unable. I am not going to watch those stares and disgusted looks and anything else - and I am not going to pretend for a moment that they aren't there. I am going to take my child away from the rest of the staring and judging world and hold him or not hold him - whatever he wants to do - as quickly as possible. And in church, or any place with rows, that means we sit on the end. 

But we took deep breaths, looked at each other, and politely asked if we could have a seat. 

Eli's face was almost sad looking, his body sunk into C's as we were seated. I could see it, there were too many people around him. Too much of a crowd. He quietly became very still in C's arms. He just cuddled there - not moving, not crying, not making a noise. He didn't blink - he often doesn't blink. Just stared into whatever world he was in. 

He didn't move or readjust when we stood for the opening song.

And then the Gloria started and for the first time I saw my little one's hands jerk up and cover his ears in reaction. He kept them there, pushing his face harder against C's chest. His little hands stayed there until it was over and then for several minutes after. 

He did it again at mass this past Sunday - when the Gloria began. And once more when we sang his little brother "Happy Birthday". No tears. No screaming. 

He just covers his little ears and curls into himself or whoever is holding him. 

He's my little Eli. 

And sometimes, even giants cover their ears.