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.

Wednesday, August 10, 2016

It's Time

There is always an excuse....
....I'll lose weight later....
....I'll save money after this one last vacation....
....I'll clean that storage room next week....
 ...I'll start blogging again when I am not utterly exhausted....

Well, enough of that. It's time to start writing again.

Throughout the long nights when we are awake with Claire while she doesn't feel well, nothing brings me more happiness than reading old posts from when Luke and Claire were babies. I had convinced myself that I wouldn't forget all of the "little moments", but considering that I'm lucky I remember my pants most days, my memory is sub-par, at best.

Consider this little gem of a conversation:

(After a night of about 3 hours of sleep and a loooonnnnngggg workday, I had just slipped into a hot bath with a glass of wine, when my little sidekick charged through the door.)

Luke:  "Mom, I gotta shit."
Me: "You have to poop?"
Luke: "Yeah...shit."

(sigh....I don't know where he ever heard that...)

Me: "Ok. Go ahead. You don't need me - you can take care of yourself."

(Luke proceeds to finish his business.)

Luke: "All done!"
Me: "Did you wipe?"
Luke: "Yep. Look!!"

(Not checking wasn't a gamble I was about to take.)

Me:  "Luke! There is no toilet paper in here!!! You said you wiped!"

Luke: (slapping his hand to his forehead) "Oops!!! Forgot"

Here's to hoping that I remember these funny conversations and that Luke remembers to wipe.
Throwback picture to last year......
 

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