do you ever feel so different that you just don't fit?

[special2shoes]

or is it just me, I think dd has changed me.
i just got told of for posting on a home birth thread, how dare I say that dd would have died if I had a home birth.
I just don't fit sometimes.

Noooooo, don't look!!

(shit I just posted on the wrong thread) I have emailed mn hq to ask them to clarify, but posted on the thread in site stuff.

tclangerisaLaydee awww I thought you were talking to saintdameturnip

doesnt EVERY child and EVERY adult have a life of certain 'uncertainty' though? it is not unique to people who have disabilities (which is a huge umbrella term anyway)

tclanger, don't worry about it I'll work it out eventually/people will just have to put up with me saying "but who ARE you?" even if I've shared a board with them for ages and know all about them and all they've done is add some bits to the front/back of their name

LadyFio, a huge umbrella? (looks up, in a puzzled way). Oh, I see what you mean

Yup. Every child. No certainty at all. Odd, eh? I think they'll have to go, in that case...

I'm not sure I'm cut out for saintliness.

I have become an expert at sitting on my hands when reading posts on sites. Usually the ones which bother me the most are the ones from clairvoyants or psychics, you know, where they claim to know exactly how your life is and exactly what you can and cannot do, or your children can and cannot do despite never having met you.

Going back to that statement of "parents of disabled children say they would have had termination if they'd known" in one sense that might well be true. In that parents that were to be parents of disabled children may not at the pregnancy stage have had the insights then that they have now.

Before dd was diagnosed, I knew relatively little about disability. So I think it perfectly possible if someone had come up to me and said "your child will suffer from disability and pain every day of her life, wouldn't it be kinder to spare her that?" that I might have been swept along by that. Because it would have sounded so awful.

So strictly speaking, that statement could be said to apply to me.

But now that dd is here it is so blindingly obvious that her life is so much more than disability and pain, and that she certainly wants what she can get out of life, she wouldn't thank me for having entertained thoughts of sparing her.

So with hindsight I would say "don't be silly".

In any case, I refused the amnio because I didn't want to risk being swept along. And for dd's condition there is no test. So that's allright. We can get on with our lives.

Cory, yup. If you're told a horror story and told that 'all parents with SN children regret having them' or words to that effect, then of course you'd agree to a termination. That's why I'm so keen to see people given a really balanced set of perspectives - the best, the worst, all the bits in between, all the help available or not available, etc.

cory you are so right, when i was expecting ds(17 years ago) I actually said I wouldn't keep the baby if the tripple test cam back "bad" I was so ignorant about disability.
surely that is why people need to hear both sides.

I remember breaking up with someone when I was 20 because he said he wanted a child with downs syndrome.

i wish I had the nerve to get on that thread and but sadly I've had to save my now depleted energy for the LEA and health authority these days. SN is where I prefer to lurk post as that's where I draw strenght

I wish there was some way to educate people in such matters

riven i could not have been more clearer! It is after the post I dated earlier, come on!

another thing I think you need to get the full picture is a sense of what being alive can give your child

I think lots of people would consider termination because they think a life of suffering and disability would be unfair on the child

I think I might have done so, certainly if someone had made a lot of the pain thing

but pain isn't everything

not being able to do things isn't everything

you'd also need to get a sense of what enjoyment disabled children can get out of life

Yes, true re the enjoyment. Curiously, I find that I'm able to enjoy all sorts of things even though sometimes I'm in huge pain (arthritis, spinal scoliosis, endometriosis etc), and sometimes I'm treated appallingly by other people (social prejudice, lack of help etc).

Do I wish I was dead, or had never been born? Nope.

confused? I am lol ....

cory, i also think people underestimate the emotional impact of having a termination at such a late stage. We talk about the stress of having to cope with a child with special needs (of which it can be stressful) but giving birth to a 20 week old foetus must be incredibl traumatic and stressful and who knows how that affects some people for the rest of their life.

I know which option I would find easier to livewith but I don't suggest it is the same for everyone, though i do sometimes think it is glossed over within these threads and debates