gif89a Wednesday, September 5th, 2007 | Ophelia

Wednesday, September 5th, 2007

5 September 2007

During the summer I had a new set of tubes from my ear doctor Dr. Karis at Yale. I  went to visit Dr. Leichtman,, a pediatric geneticist who specializes in Down Syndrome,  in Newport News in August and he gave me a good report. I crawled around most of his office and I even said goodbye. I am eating all my usual foods. I love strawberries and tomatoes. I can suck out of a straw without dribbling like some octogenarian and I can sign when I want more food so I don’t have to cry. I can now drink milk and don’t have to stick to Soy  anymore.

I saw Dr Peirce, my pediatrician last week and I now weigh 20 pounds which makes me quite fat. I can stand up in my crib and I am trying to walk but still have not quite figured it out yet. I spent some great days splashing in my new swimming pool with Felicity and Lilbet. Today Poppy was looking at me on the computer monitor at the hospital whilst he was operating. One of his anesthetists, Maria, who has twin 6  year-old boys and a girl,  pulled up my website. She said I should publish my story. Unfortunately my story was easier to write than to publish.


Incidentally Poppy always calls me ‘my baby’

P.S. Poppy read a sad story about Arthur Miller in Vanity Fair. Mr. Miller sent his son Daniel, with Down Syndrome, off to an institution. Poppy already knew this. Apparently Arthur could not face up to it. He gave his son a name and then gave him away. Poppy put me in an institution also. It’s called home. I don’t think Poppy ever regretted his decision. . Emily Perl Kingsley’s  article “Welcome to Holland” says it all:


by Emily Perl Kingsley.

Copyright © 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.

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