by jules2 (514 Posts), Tue Nov 24, 2009 05:01 pm
I am trying to decide whether or not I am brave enough to TTC again, after two losses within 6 months. Despite my miscarriage and stillbirth, my greatest fear at the moment is having to deliver very early and having a very severely disabled child, and how I could possibly cope if that happened. I have experienced this in my family - my Dad had a very severe stroke that left him totally disabled and dependent - blind, doubly incontinent, no mobility, dementia, behavioural problems etc (he is now dead but lived quite a long time in this state, I think this is why I fear disability so greatly - I know just how awful it can be)
Please don't misunderstand me, I am sure I would love my child regardless, but I just have no idea how I could cope if this happened. We don't have any family support, and there is little state support available either - would I end up giving up my career to be a full-time carer? Would I just be forever exhausted, overwhelmed, and going through a different type of grief?
I know no-one can answer these questions for me, but I would really like to hear from anyone who has had a very early delivery (say under 28-30 weeks) or very severely disabled child. How is your life now? Does it just feel like an endless round of hospital appointments? With my Dad, although I totally understood that his prognosis was terrible, I could never really accept that and spent months on end off work, spending all my time in the hospital, and trying to encourage him with physio, even though I could see it was to no real effect. I think I might be the same with a disabled child. I'm not someone who accepts things easily and I put up a real fight; I wonder if this is really not the right personality for raising a disabled child, but I just don't know what that might be like in practice.
This is a bit of a ramble, but I hope you can understand, and thanks in advance for any replies.