Our Babies

Our Babies
Luke and Claire

"Welcome to Holland"


By Emily Perl Kingsley, 1987. 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.

Monday, February 6, 2017

Sometimes you gamble on a fart.....and lose

Disclaimer: Someday Luke will hate me for this post.

Disclaimer #2: I don't care.

We have all been there. If you say you haven't, then you are a filthy liar.  Everyone knows that familiar gurgle. You need a toilet ASAP, and the closest one is 15,400 miles away. You think to yourself, "No....not right now....I do NOT need to go to the bathroom."

Crap.

Yes I do.

You take a gamble and let a little fart squeeze out. But, to your dismay, that ain't gas that just came out of your butthole.

It was FINALLY sunny and warm here in SA after several gloomy, rainy days. Nothing in this world is more fun than being cooped up by yourself for consecutive days with three kids - said no parent EVER. So, after therapy this afternoon, we were ready to scamper off to the neighborhood park for some much needed Vitamin D.

Navigating Aubrey and Claire on the play equipment takes all of my energy, arm strength, and it leaves about .01% attention on Luke. So, when he yelled out that he was peeing behind a tree, I didn't think anything of it....until he didn't come out right away. He called out a second time, and I could hear the panic in his voice.

"Mom. Help me. It's poop."

Oh shit.

Our neighborhood park does NOT have a bathroom.

"No it's not poop. Hold it in, and we're going to run home," I yelled from the slide as grabbed the girls and ran toward him.

"Ok, mom...." he said, grabbing my hand.

Suddenly, my hand was unexpectedly warm, and it was not just because Luke's hand was clammy from the impending GI doom.

"When I said, 'Hold it in', I did not LITERALLY MEAN WITH YOUR HAND!!" I cried. It was supposed to be just a short walk, so there was no diaper bag, and there were no random wipes hiding under the wheelchair. Am I new?!?!  Any parent knows better than that.

Luke waddled home, Claire laughed because for once, the poop-tastrophie wasn't her fault, and I found some bleach and a beer. We got cleaned up, and tried that trip again.

Sometimes on a Monday you gamble and win. Sometimes you gamble and lose.

Today, Luke gambled on a fart....and lost.



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