Thanks Mindy. You're very kind to send me such a positive message. And thanks to everyone else too. It means a lot.
Mindy I've added you to my friends list as I have some questions for you regarding PGD if you don't mind. Is it ok if I private message you?
You're right, Seth is 'fixable' by exon skipping 51. I really AM very positive about this, especially as he's so young. It's just so hard at the moment though. I just don't understand why this should happen to us after we tried so hard for a family and, of course, it's his first birthday tomorrow and I keep thinking about how happy I was this time last year....
Thanks again, though, to all of you who replied and have helped me to perhaps worry a LITTLE less.
Thank you for replying Michelle. I think we probably feel the same way. I, too, long for 'the old me', the one who used to sing along to songs on the radio in the car, who used to get excited about Christmas, birthdays. I think perhaps the treatments in the offing will help it come back. That we'll come to realise that the future's not what it was when we were told of the diagnosis.
Like you, I found it so hard to accept. I think especially as I'm not a carrier (yes, everyone seemed to think I'd be delighted by this fact) but it just made it harder to accept why I've been 'picked on'. We had Seth after long and unpleasant fertility treatment and it's just so unfair (as it is for anybody) that we'd finally 'made it' only for it all to go so wrong. Does that make sense? I should be grateful for my lovely little boy but I feel so bitter. As I type, this time a year ago I was just going into hospital to have him. I was so excited (but in pain!) and then so proud of what I managed to produce. He was big and bonny and came out screaming like billy-oh. I was so sure he was healthy and so relieved that it was 'all ok'.
I do, I really, really do, think that the future for the young ones (and the not so young) is going to be very different now from what it's been before though. There's so much in the offing. My gut tells me that the answer will lie in a cocktail of things and that, in time, our sons will wonder what all the fuss is about.
But my biggest problem right now is how to deal with the fact that this has happened at all. And the fact I'm so sad. And the fact that if I am ever blessed with another pregnancy I'll be b@stard terrified the whole time that it'll go 'wrong' again. I also worry, as I said, that Seth won't be 'normal' in his mind/behaviour. It makes me feel better, though, to hear so many people on here say that they have 'normal' kids. I'm glad to hear you say how bright and happy Cameron is.
Thanks for replying again.