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, February 12, 2014

New School, New Skills


 The only thing that Luke loves more than school is Mickey Mouse. Normally, we have time for one episode before school, but there were a few days that getting ready quickly wasn't his cup of tea. After flying out the door to catch the bus while drying up his tears, I told Luke he just needed to get up earlier. He listened.

Monday @ 5:45 am; I'm resting peacefully in bed and suddenly a little forehead is pressed against mine. "Hi momma. Mickey??" Sure...it's only a little early.

Tuesday @ 5:12 am; I'm unconscious to the world when I get smacked in the face with a remote. "Help! Mickey!!!" Um, no. This crossed the line. Nice job waking up earlier like I said, but no.

Rewind to Luke's first IEP meeting last week.....

Luke's teacher:  "Luke is such a sweetheart and he is doing great in class. He plays well with his friends, he participates in circle time, and he is showing improvement on some of his skills. But, he does need to work on listening. Sometimes he tends to only focus on what interests him."

Pause for my reaction. None provided.

"Are you concerned that he prefers to focus on his interests?"

"He is three. Isn't that what he should be doing???"

The rest of the meeting proceeded  as anticipated. No, he can't count to twenty, doesn't understand prepositions, and can't draw a cross or x without help. I have days like that, too. What he is doing is we're at 95% potty trained (woot woot!!!), he's listening to directions, and he's starting to identify letters on his own!

Grandma Malone sent him a little Valentine's card with money for a treat so we talked about buying something and just he and I went to the store. You'll never guess what he picked out......a Mickey Mouse t-shirt and a bag of tortilla chips!!!  See, preferences really are a good thing! He was so cute paying for his purchases. Everyone in line behind him cheered when he paid, and he cheered even louder when the lady took his paper money and gave him back a nickel and a penny. BONUS!!!

Today @ 4:02 am: AAAHHHHH!!!! My warm nest of blankets suddenly flung off the bed and a little midget tugged my arm. "Mickey. Yes. Help!"

Ok, so he focuses a little too well on what he likes. Maybe his teacher was right.....










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