I just want to tell you DP's story.
DP was born with spina bifida, a tethered spine, partial paralysis of his left leg and a back to front club foot. His parents (who were teenagers and completely broke) were told that he probably wouldn't live beyond a few years old, and that if he did he'd be a "retarded dwarf" (this was the 1970's).
I can't imagine what life must have been like for them. As DP entered toddlerhood there were some signs of promise, DP learned to walk and seemed to be developing reasonable verbal skills, but still there was operation after operation none of which seemed to improve things and the future seemed pretty bleak. Much of DP's life was spent in hospital making it hard to keep friendships going at school and he rarely made friends in hospital because people often left long before he did. To make things worse he developed another life threatening illness which nearly killed him.
Adolescence was hard but he had (and still has) an incredible spirit and thirst for knowledge. Despite attempts to send him to a special school (which DP objected to) and the local comprehensive rejecting him on the grounds that they couldn't facilitate him, he found a school which was prepared to take him on. He excelled at school and was an enthusiastic participant in PE. What sums up DP's character perfectly is the fact that he, with his badly deformed legs, took part in every cross country run he could! Apparantly he always came last, but this didn't deter him.
University followed, as did more health problems and more 'advice' from well-meaning people who said that he wouldn't be able to follow his dream of doing the job he'd wanted to do since boyhood.
DP didn't grow up to be a retarded dwarf. In fact, he's 6'3'' and highly intelligent. He's also doing the job he longed to do, living the lifestyle he wanted and now has two fabulous ds. We are a happy, solvent, loving family. We still have some problems. DP has endless hospital appointments and from time to time perhaps we suffer some limitations on our family life. I seem to post on here a lot about gardening, but when you have a DP like mine you have to learn to be handy with a lawnmower and garden spade.
I've read a few of the posts on another thread about sn and tbh don't want to comment on them one way or another. I just wanted to tell you (some) of DP's story because it's so hopeful and because lots of you are going through painful times. I know that determination alone won't mend every sn child, but it did in DP's case. His legs are still rubbish but his life isn't. Corny I know but true. There is hope.