Yesterday I had the chance to attend the SMBC Women's Conference. It is a yearly conference with 2 bible talks in the morning and then a seminar in the afternoon. This year the talks were on the resurrection - which even though I am a Christian I never used to think about all that much. But I can tell you that since having A1 I think about it all the time and long for that day in heaven where 'He will wipe every tear from our eyes. There will be no more death or mourning or crying or pain" (Rev 21:4). It was great to hear some talks about the certain hope we have of this as Christians. The seminar I went to in the afternoon was on the topic of medical ethics and euthenasia. The speaker was fantastic and raised some very interesting points. The main point of her argument is that she doesn't believe doctors should have the right to decide whose life is and isn't worth living.
As the parent of a disabled child I totally agree with her. It would be very easy for a doctor to look at A1 on paper (blind, kidney failure, cerebral palsy, developmental delay) and conclude that she has a poor quality of life. We have already had the "we need to discuss what is best for A1" talk with A1's renal doctor. Whenever we see this doctor A1 is never at her best, so her doctor did raise with us the option of not treating her when she gets to ESRF. Now I am not judging this doctor at all - she is a great doctor and it is a discussion that does have to take place. We have obviously told the doctor that we think A1 has a good quality of life and that we would like her to receive one of our kidneys. But it does bring up the question - if M or I aren't able to donate would A1 get a kidney if she were on the waiting list? Or would someone who doesn't even know her decide based on her list of diagnoses that she shouldn't get one?
I think I have digressed from my original point....but I guess when I think of medical ethics the topic is very close to home. If the doctors had of known A1 would be this disabled they would have recommended switching off her ventilator in the nursery I am sure. And you know what we may have even listened to them. But the biggest lesson of this whole experience has been about quality of life. What makes a life worth living? "Before A1" I would have thought a child with her disabilities wouldn't have much quality of life at all, but I can tell you that we live with her and we know she has a good quality of life. She is happy. She is loved. She loves. Yes it is a different life to the lives of her sisters, but I dare anyone to suggest she has a poor quality of life.
OK, I'm getting off my soapbox now. Thanks for letting me 'think out loud'.