There are a few unrealistic things in the book - the idea of an orthopedic surgeon making an instant, certain diagnosis of Down syndrome is a bit far fetched; usually we pediatricians are looking at a baby and trying to decide whether the child really has Down syndrome or not, and wait for the chromosomes to confirm it - but overall it was quite good. It gave some glimpses into what it might be like to raise a child with Down syndrome, showing both some of the heartaches and triumphs. The part I found most striking , though, is when the twin brother, who previously has felt sorry for his sister because she has Down syndrome, comes to the realization that he need not pity her because she is quite happy and content with her life - perhaps even more so than he is.
It reminded me of a study done in Canada looking at very premature NICU survivors who were now teens. Although they had some challenges in life, both mental and physical, their feeling of self worth was actually greater than that of a control group of "normal" teenagers. Happiness did not depend on how smart or well coordinated you were.
I like that lesson - happiness does not depend on intelligence - but I wonder how far we can extend it. Certainly there are people with mental retardation, either from Down syndrome or other causes, who lead happy, fulfilling lives. But is there not a limit to how impaired one can be and still have a happy life? I know that some parents of children with Trisomy 18, kids who are much more impaired than kids with Down syndrome, believe that their children are happy, and although it seems to me that Trisomy 18 children have to suffer a fair amount in life, who I am to contradict that? What about more impaired children, though? Kids with Trisomy 13 are usually even more impaired than Trisomy 18 kids. I remember one from my residency who had lived unusually long, to the age of 13 years, and he always seemed miserable.
I don't have the answer to this, but I'm going to be very careful when making value judgements about what lives are worth living.