Smack, I also have a child with Down Syndrome. Her name is Emily and she is 10. She is the youngest of my 3 kids and when she was born it was a total surprise when the Dr. told us of her condition. Most of her physical problems are relatively minor. She has had numerous problems with her ears, very mild heart defect and the most significant problem was a stenosis of the duedenam which required surgery when she was 2.
Emily also has speech problems. It's very hard for strangers to understand her. She does, however, have very good receptive language skills. She understands everything!
I'm sorry to hear that your son has had such a rough time of it. Will they ever be able to help him so he can eat solid foods? I feel really lucky with Emily. There are so many other things that are so much worse than Down Syndrome. I don't dwell on what might have been and am in fact surprised when some stranger makes a point of commenting on the DS. as she looks just like any other kid to me. She's been a real joy.
I ran across this the other day, I have read it before and I think it is very good. Hope it copies.
A Trip To Holland By Emily Perl 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 guide books and make your wonderful plans... the Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It's all very exciting. After several 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 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 a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And 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 experience will never, ever, ever, go away. 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.
I haven't posted much as I haven't made an introduction and feel like something of a sneak. Will have to psych myself up to do that one of these days.
Take care, Adrift
