Erik Quinn: The Heart of a Family: Malaise

Thursday, May 18, 2006


I have a moment to myself before Erik wakes up this morning. Because it was so hot yesterday, Erik cried and cried last night until we finally gave up and got him out of his crib. When he was tiny, I used to sit on the couch with my feet up on the coffee table, position him on his side along my legs, and rock him back and forth. I spent hours/days/months/a year doing that to ease his discomfort (I have seen EVERY episode of Dawson's Creek). I still do that sometimes, although he has to be folded in half at this point. That did the trick last night. We blasted the air conditioner to cool his room off, changed him into cooler PJs, and finally got him to go to bed. I am not looking forward to working upstairs today. Brian bought a swamp cooler for my office, but it has a drip, so I must wait until we locate some plumber's tape. It sounds like a 747 taking off, and I am hoping I can hear what I am transcribing. However, after working in sweltering heat yesterday, I am thankful for it. Sometimes I think of the people baking in the sun outside harvesting strawberries or putting up houses and think I am the biggest wuss. This morning I am failing to find my sense of humor already. There are days when it is hard to see the bright side of anything, and this is one of them. What I have to tell myself on days like today is that maybe tomorrow I'll feel more like myself. In fact, I probably will. Sometimes I'm surprised to find that I feel better even in a couple of hours. We'll see. the trick is to hang on for just a little while longer. Erik has an in-home visit today from EIP (Early Intervention Program) at 3:30.

The Beauty of Holland
by Emily Pearl Kingsley

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 guidebooks and make your wonderful vacation plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very, 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 flight attendant 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 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 guidebooks. 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 awhile and you catch your breath, you look around, and you begin to notice that Holland has windmills. 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 go away, because the loss of that dream is a 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.


Post a Comment

<< Home