I've noticed that often when doctors don't know what to expect regarding a disabled child, they describe a certain stereotype: the child won't live long and even if they do, will never do X, Y or Z (usually walking and talking). The specifics vary, they may be told their child will die in infancy or by age 9 or before they reach adulthood. Other characteristics may be added to the description such as blindness, deafness etc. But the basic form tends to be similar. And so many times, this is accompanied by statements that the child will ruin your family, must be institutionalised/aborted/not given medical treatment for the parent's sake or even their own.
Firstly, often this isn't completely true, as other respondants have told you. These children often defy the doctor's expectations completely, walking, talking and living a long life. But what if at least part of this prediction is true?
Firstly, what if the life expectancy really is low? The child may well die very young. But even during such a short life, the child greatly enriches their loved one's lives. As Steve Wilsford said on the page A Trisomy 18 Journey:
The biggest surprise was the incredible joy even with all the sorrow of the situation. Though she [his daughter Abigail] was so frail and near death, we cherished every moment, holding her in our arms the entire five days afraid to sleep.
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Another blessing unforseen is the drawing together of our family. I love my wife a little more. I love my children a little more. I hug them all a little more tightly and a little more often. I love my family, friends, and neighbors, even strangers a little more. I cherish my very short time on the earth a little more.
Another issue I'd like to mention is that sometimes it seems that the short life span can be a self-fulfilling prophecy. A child expected to live only a short while is often given less aggressive medical care, which makes it more likely they will indeed die young. Although there may come a time when you realise you need to let them go, it's important not to give up on them too soon.
Secondly, what if the child lives a long time, and yet is so developmentally delayed they never walk or talk? Many people have the misconception that such a child is pretty much in a vegetative state. This is certainly not true. Profoundly delayed people can interact, and though they can't talk they can communicate. It's a bit like a baby. At first glance a newborn seems so helpless and unaware, but if you learn to pay attention, you can see just how aware they are. Also, the vast majority, if not all, profoundly delayed people gain some developmental milestones. Most learn to smile and laugh, for example. If you watch the videos of the trisomy 13 kids at Living With Trisomy 13, you can see several examples of those children interacting with other people. My favorite of those videos shows a girl kissing her mother on the cheek! And many people have said there is something very special about profoundly delayed people. David Hingsburger expresses it well in his book First Contact: Charting Inner Space:
Her statements of joy, of self awareness, shows that people who think she would be better off dead - are simply bigots who choose not to know her. Helen is a radical person. Her message is about radical acceptance. Her life is radically her own. For those labeled "profoundly retarded" emphasize the word "profound."
Ettina