[Kate07]

Hi

I have a post that doesn't really fit into boo hoo and doesn't really fit into woo hoo, and general chatter would mean that it wasn't important. Not everyone would understand (on-line or in real life) and so i am putting it out here, because i want to lay it out.

I have been watching this thread for a long time, occasionally posting but not really fitting here yet either.

I have a neuro condition, and it is believed to be genetic. I went many years undiagnosed and my parents were told not to plan for a long life. Never thought i would make 25. Then, i was diagnosed and there was a treatment. Big change in my life, i'm doing well.

Then comes the thinking of having kids. There is a chance of passing it on. My kids experience would be different because it could be diagnosed early .... BUT do i want to pass it on? What steps would i take to not pass it on?

Have been following up genetic testing for 10 years now. I have been the instigator. Geneticists have come and gone and forgotten, but i have kept searching.

Have had different results along the way that look like we might be finding the mutation. I wonder why i keep searching. 1) i want proof. Living with an undiagnosed condition, people start to wonder if it is psychosomatic or something... including professionals.. (those with experience of chronic condition will know what i mean). 2) i want to know chance of my kids having it.

Now, on point 2. What is the point of this knowledge? What will i do with it? Why i am striving so hard? Would i terminate an affected child? Would i go thru PGD? Would i want a child tested at birth? what do i tell my kids if they are affected, and i did nothing to stop this? why why why do i keep searching if the information is not going to change my actions?

Lately, the final (?) lot of genetic tests have come back. the ones i thought would give me the answer. But again they were negative (ie no mutation found) back to step one.

But, i am actually ok with it. It's like i had to keep pushing until i couldn't go any further. And now it's like the information that i was seeking is not there, so i can just let go.

I have been hyper careful re contraception for so long bc i was scared i would get pregnant and not have the information to work with. But now, i can sort of say what will be will be.

I don't know the mutation, so i can't do PGD. I can't do prenatal testing. Can't even do postnatal testing. My only decision is do i have kids the 'natural' way, or do i not have my genetic kids and look at adoption.

I am not scared of getting pregnant though now. I have done all i could, and if i got pregnant, and if the kid was affected then we would work through that. I am probably in a much better situation than my parents because they didn't know what it was, and had no experience of what it might be like.

I am not actively TTC yet, but if it happened i wouldn;t be completely shattered like i thought i would have been in the past.

Getting to the stage of actually participating in TTC will come later (more thinking to do there), but at least i am at ease if it did come earlier.