Monday, 20 February 2012
Kind hearts and consciences
With all the controversy going on at the moment surrounding the NHS and various reports being circulated about standards of care, I thought I'd just stick my head above the parapet and pay tribute to all the many wonderful medical professionals who have dealt with us since Aila's diagnosis two years ago. A big huge THANK YOU to you all, for making a difficult situation that bit easier to cope with. We have met with loads of care and kindness and this morning was no exception; the cheery nurse had plenty to do hooking Aila up to an exceedingly beepy monitoring machine at 15 minute intervals but still kept us plied generously with toast, tea and blankets. (I would like to include Aila's hospital lunch in this tribute but alas that would be pushing things. It was nice that she was offered one though and I can honestly say I've never tasted custard like that before!)
In the midst of all this generous care, though, I do have a dilemma. I guess it's just part of living in a world whose heart, though often kind, doesn't always beat to the same rhythm as that of a Christian pro-lifer. It would be so easy if the world really were divided into clear "pro-life: good" and "anti-life:evil" camps but of course it just ain't like that. Differing worldviews and ethics can be married to differing motives in a bewildering variety of well- and not-so-well-meaning combinations, until one ends up finding oneself in the position of the Biblical farmer who was in danger of pulling up his wheat whilst trying to weed out the darnel.
I have noticed several excellent projects that they support. In the case of Friedreich's Ataxia in particular, there seems to be a lot of very hopeful research going on and I would like to donate towards it as and when I am able. I just don't know how to do that without quite possibly inadvertently funding projects that do not accord with my conscience. And I don't want to not fund the "good" research, because every day I see my daughter struggling with her condition and I would move mountains to help her if I could.
My worst nightmare of course is that a treatment which dramatically alleviates or reverses the damage done by the disease will be developed, but using a technique which I cannot in conscience accept. I cannot imagine anything more heart-rending and soul-ravaging than watching your child deteriorate with a curable condition. If the illness were mine, the choice would be easy - I would suffer and if necessary die rather than use the treatment. But it is not mine; I only wish it were.
By the time anything like a cure might be on the horizon, the choice of whether to take it up will be my daughter's as an adult, not mine, though that is cold comfort. I can only hope and pray that it will be a choice between equally ethical alternatives. In the meantime, given that I do not know of any specifically "pro-life" institute devoted to researching into conditions like Aila's, my dilemma continues. How do I support the wheat of those ethical alternatives whilst making sure I am not also feeding the darnel of embryo research? In this complicated, topsy-turvy world where the sun shines on the good, bad and well-meaning alike, can I?