Difficulty of Knowledge

I came across this article: Prenatal Test Puts Down Syndrome in Hard Focus (NYTimes): With the increase in prenatal testing for it, some parents of children with Downs Syndrome are moving to educate people in general more about the condition. They're worried that with more testing there will be more terminations and fewer people with Downs and that could further disadvantage their children (oversimplification, go read the article if you can).

As I started reading the article I wondered whether these parents were being selfish in trying to pressure parents into keeping a child they didn't think they could parent so that their children would have more people with Downs around in the future. Then I was stunned to read in the article that "[a]bout 90 percent of pregnant women who are given a Down syndrome diagnosis have chosen to have an abortion." I guess people do need to hear more about Downs in that case. I'm not saying that raising a child with Downs isn't going to be a challenge, that you're not going to have more to worry about for longer as a parent, but all the people I know with Downs are such valuable people. I can't imagine choosing to end a pregnancy with that diagnosis, although I know I'd be feeling even more overwhelmed by the responsibility of parenting.

All the testing that's available now (and I'm sure that what can be tested for and how easy and "risk free" the testing is will only continue to increase), I see as a curse as much as a blessing. [add: another interesting article: Genetic Testing + Abortion = ???.] Same with fertility treatments, and testing for things like Alzheimer's, cancer, Huntington's etc. that you might develop in the future [see this interesting article: Facing Life With a Lethal Gene also in the NYTimes]. For some people it's empowering to have this kind of information available, for others it's daunting or even destructive. Even pregnancy tests you can take before your period is due can make you crazy if you're struggling with infertility, that's why after a few years of ttc I stopped taking tests until I was 18 dpo (which would usually indicate a pregnancy in and of itself).

When is it better to learn to accept what life throws at you as it comes, and when is "forewarned is forearmed" the way to go? One problem I see is that being forewarned doesn't always allow you to find a way to deal with the problem, sometimes it makes things more complicated/difficult. It can give an illusion of control where you have very little. I guess I think it's important to think about what the implications of the possession of greater knowledge are and whether we're equipped to deal with them before we move forward in some of these cases and I'm afraid that not enough people think that through.

Reading: The Orange Girl

One of the things I thought I'd do with the blog is use it to keep track of my book reading. Not that I'm getting to read as much as I used to. My main time for reading has been before bed but often the lights are out or the baby's snuggled up with me and so I can't read (which is sad not least because I don't always fall asleep easily).

The book I most recently finished was The Orange Girl by Jostein Gaarder. It's about a boy, Georg, who is given a letter written to him by his father. His father died when Georg was three. In the letter his father tells the story of "the orange girl" and asks his son a question. The novel is framed with Georg's own writing, telling about getting the letter and his reaction to it, then we begin to read the letter which Georg breaks in on every now and again with more commentary.

It's a love story, well more than one love story really I'd say because there's the orange girl but also a father/son love too. But also it tackles confronting death, it asks you to think about mortality (your own, and that of your nearest and dearest). It asks whether life is worthwhile; at one point Georg's father writes:

Would I have elected to live a life on earth in the firm knowledge that I'd suddenly be torn away from it, and perhaps in the middle of intoxicating happiness? Or would I, even at that early stage, graciously have declined this reckless game of 'pass the parcel'? We come to this world only once. We are let into the great fairytale, only for the story to reach its end!

Later Georg writes (contemplating never being born):

The world! I would never have come here. I would never have witnessed the great mystery.

Space! I would never have looked up into a glittering starscape.

The sun! I would never have been able to place my feet on the warm sea rocks at Tonsberg. I would never have experienced a really good belly-flop.

Now I see it. Suddenly I see the full extent of it all. Only now do I understand with my life and soul the meaning of non-existence. I feel the pit of my stomach heave. I feel sick. But I feel anger as well.

I'm infuriated by the thought that one day I will vanish -- and become nothing, not just for a week or two, not just for four or four hundred years, but for all time.

It's really interesting to read, and think. Georg's father is an atheist so his take on death is different to mine but that doesn't mean it isn't good for me to think about the questions he brings up.

Georg is a 15 year old and I think Gaarder does a good job of writing a narrator who a lot younger than he is (I think he's a teacher so that probably helps).

I consistently enjoy Gaarder's books. I don't know whether it's the use of language or tone of the writing, or perhaps the simplicity of the plots which at the same time ask you to consider complex questions, but I find his books very restful to read (thought provoking as they can be).

I'm curious as to whether there's something about Scandinavian languages, or life there because there is something very soothing about the turn of phrase in the writing. I know it's a translation, but I found I felt the same way about a novel I read by a Danish author a while back. And now I'm reading "Boy" by Roald Dahl and there's a little of that in there, and although he was British his parents were Norwegian and he spent summers in Norway so it stands to reason that might have an impact on his turn of phrase.

The first of his books which I read was "Sophie's World" many years ago when it was fairly newly out, I must get back to it one of these days, it's a nice accessible introduction to lots of different philosophical schools of thought.

Here's a final quote from The Orange Girl that particularly resonated with me:

I don't know if you've ever had that intense feeling of having done something completely futile. Maybe you've left home in awful weather and gone into town to buy something you really need, and you get to the shop at last only to find it had closed two minutes ago. Such things are infuriating, and most irritating of all is one's own stupidity. (Orange Girl, p82)

I'm afraid I get that feeling a lot, it's nice to read it articulated by someone else.

The linky part

The Recycled Yarn Tutorial - How To Unravel A Sweater (via an email list)

Artificial food colouring warning - "Parents are being advised by experts not to give their children food containing certain additives until the results of a new study are published." (BBC) (Also in the Guardian)

Through fire and ice - "The Norwegians' architecture stands up to glaciers, snowstorms and dangerous drivers - and it still looks beautiful." (Guardian)

The New Atheists loathe religion far too much to plausibly challenge it (Guardian)

Aboriginal Romeo and Juliet survive 40 years in the bush (Independent). Glen Stasiuk has made a documentary about this couple , Warri and Yatungka , who ran away together into the desert because tribal law forbade their marriage. They lived in the desert in the old traditional way for many years. They finally were brought back to live with the tribe during a drought in the late 70s that nearly killed them, but they died a few years later. The documentary is called "Footprints in the Sand" and features the couple's son returning to places he lived with his parents. It will be shown on Australian TV in the summer, hopefully it'll make its way onto US and UK telly too, it sounds really interesting.

Just like that! Tommy Cooper's final days - "He was the comedians' comedian, whose unique combination of surreal humour and inept magic captivated the nation. Now the producer of 'The Queen' is to dramatise the last week of a life which ended so dramatically - in the middle of a show" (Independent)
I didn't read this article (yet) but I distinctly remember sitting with my family watching the TV and seeing Tommy Cooper collapsing live on stage, not quite knowing whether it was real or not, the curtain coming down. I must have been about 8 years old, it's just a quick memory and I don't think I really knew who he was at the time, but obviously it made an impression.

And another quilt to make my fingers itchy over at Flikr -- "Crazy"

And pictures like this make me want to get more sewing machine time in to make clothes for my baby, and children of friends (and me...).