There was a very moving piece in the New York Times on Sunday, written by a mother whose 18-month-old son was born with Tay-Sachs disease and is not likely to see his third birthday.
Emily Rapp writes that Ronan is “slowly regressing into a vegetative state”, will “become paralysed, experience seizures, lose all of his senses before he dies. There’s no treatment and no cure.”
I could not imagine unaided what it feels like to watch your child dying almost from the day he was born, but this writer (and she is a writer by profession) walks us through it in a remarkable way, telling us what she and her husband have learned about parenthood -- and, indeed, their humanity.

Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice. Ms Rapp stresses how parenting is so much oriented towards the future -- in particular towards, Tiger Mom style, the child’s achievements, “happy endings, rich futures” -- and contrasts this with parenting “for the here and now”.
I have a minor quibble with the kinds of accomplishments she sees as the chief goals of parents (no mention of moral qualities) though perhaps she accurately reflects today’s culture. And there isn’t, or shouldn’t normally be a conflict between “raising adults” as James Stenson would say, and loving one’s children in the here and now, as she seems to imply. Should there?
But she does very well indeed to show how a child who cannot achieve anything humanly speaking, who will never even say “Mama”, can nevertheless bring out the essence of parental love and teach his parents, in a sense, something about being human.
There’s a sad irony in this because the very day after her article was published the news broke that new tests are now becoming available which can detect Down Syndrome in a mother’s blood as early as 10 weeks into pregnancy -- the chief effect of which may well be to increase the number of babies with DS being aborted, and deprive the parents of that very lesson.
Ms Rapp says she had the test for Tay-Sachs twice, although she was not at any greater risk for it, because she is “somewhat obsessive about such matters”, and both times the results were negative. I can’t help feeling that she is better off for that “error”.
PS: Sheila Liaugminas has posted on her blog an amazing video interview with a dying 11-year-old boy. It’s a must-see. Picture (NYT): Emily Rapp and son Ronan.