What Mom Would/n't Have Done

IDK if this is a parenting issue, per se, but it seemed to fit best...

I was diagnosed in '01 and was able to pretty much follow the line of VHL through my family backward, from me to mom (and her brother) and from mom to her father. Anyway, mom's had a rough summer and is still in for some tough months ahead. She was diagnosed w/a return of her renal cell carcinoma only in her lungs (had 1/2 of one removed, part of the other and a lymphnode or two) this time rather than her kidneys. Thank God b/c she only has part of 1 kidney left! She just started 5 weeks of radiation 5 days a week w/chemo once a week for 5 weeks. My "job" helping w/mom get through this is phone support: I call her just about every night (except weekends b/c dad's home) to keep her spirits up and talk.

Last night the subject of me and my husband having kids came up. We're 33 & 34 and have been waiting while I deal w/soc.sec.dis. Now that I have a hearing date set (nov.10!!) the next Biggie is the talk about if and when to have children. Mom knows b/c I've told her many MANY times that I don't blame her AT ALL for having VHL. #1, She didn't know she had it, let alone could pass it on and #2, It's just luck-o-the-draw that I got it. (my 2 older sisters don't, again, thank God!). We haven't really ever talked about her feelings about if she'd known would she've had us or what her opinion is on if we have kids but last night she just straight up said it: "If I'd known I had this I NEVER would've had any of you. I couldn't take the chance of passing this on. No Way." I know she didn't mean it meanly or to say she regrets having any of us and I didn't take it that way. Mom's said all along that the only thing she ever wanted to be was a Mom and she was ...no IS...a darned good one. She didn't really give her 2 cents on what she thinks we should do...my mom's not like that. If I ask her straight out she might, but she won't say anything unless it either really really bothers her (rarely) or could hurt us in some way.

I don't know. It's been rolling around in my head today b/c like I said, it's the first time mom's ever said anything about passing vhl on. And I talked about how it's different now in that if we do have a child and s/he does have vhl we can prepare him/her for having tests done routinely and to look for certain symptoms. Living w/vhl knowing you have it is certainly better than living w/it and NOT knowing! She agreed and understands and said for sure it's better to know but for her "I still wouldn't have had you, or your sisters for that matter knowing I could pass this on. I just couldn't do that." Any thoughts?

:o)
Rebecca.