As for more kiddies I am actually swinging more towards having another now rather than later, we have spoken about this at length this weekend, and personally have come to the conclusion that we cannot rob a future child of 50 yrs of life on the possibility that we carry the gene. If it was a gene for a illness that would shorten their childhood or make them very sick at a young age, I would not even contemplate it. As it stands the worse case scenario is 50-55 years here, thats a long time in medicine. I completely understand that this is a very personal decision and some will disagree with me.
Hi MM
I'm really glad you've reached a decision you're happy with about having another child. I certainly don't disagree with what you're doing, in fact I find your attitude inspiring. If the very worst situation was to occur then fifty years is still a long time to be alive. When I first got my test result I read up on various ideas and theories about life and death (it helped me get my head round things!) and a similar philosophy really resonated with me. Whatever the length of time we are here, each life no matter how long or short is equally as significant and, to the person who lived it, a life in its entirety. If that makes any sense! When I was pregnant and had genetic counselling I was told that the majority of pregnancies at risk of adult onset genetic illness where not tested for the illness because the general opinion is that the child will live a fairly long and healthy life. I don't think there's any right or wrong in situations like this and no-one has the right to judge your decisions.
The illness in my family is slightly different in that it tends to start with having small strokes, onset is typically from the mid 40s, although onset varies greatly and can be younger or older. In the worst case scenario a sufferer could have a huge stroke at any time and die or be left disabled. I've also read on forums that giving birth itself has triggered strokes in some female sufferers, unfortunately this seems to happen literally just after birth, which seems particularly cruel. I don't want to risk this happening to me.
I'm finding it hard to deny myself another child, especially since most people I know around my age are pregnant or have had another baby. Occasionally I feel envious but generally just try to accept that, for some reason, this is how my life's turned out and I have to live with it. I have had a pretty rough time up until now and was hoping my 30s onward would be more settled and peaceful and I think I feel really let down that I have this hanging over me. It made me realise that I had a subconscious belief that some kind of higher power meters out good and bad luck to people and that I was due some good luck at last. I'm not religious so I don't know where this came from- I only realised I thought this way when I had such a strong feeling of unjustice! I know feel life experiences are mainly random and it's literally the luck of the draw!
I'm really really sorry you have reason to feel your mum has the gene. I must be so sad for you to know she is going to get ill and, obviously, increases the likelihood of you having inherited it,
Sarah- Since I've been dealing with my news this has been the best website I've come across. It's really helped to see that people with dementia are still living their lives and happy. It's really reassuring and heartening to know. When you hear the word 'dementia' it conjures up terrifying images which aren't necessarily the reality of the illness. Thank you.
Sorry for the long, waffling post!
xxxxx
