I apologize in advance for posting about my children so much, but one of the reasons I joined this forum was to be able to deal with certain situations better, and most of them revolve around my children.
Background: I have three children. Two of them have a genetic bone disease called Multiple Hereditary Exostoses (well, it has several names, this is the one I use most often). The disease is caused by a dominant gene, so any children of an affected parent have a 50% chance of inheriting it. My children get it from my ex-husband. This disease ranges in severity from a minor annoyance to extremely severe. My oldest has a moderate case and my youngest has a more severe case, but not as bad as it could be. We spend lots of time at doctors offices and in hospitals, and can frequently be in for surgery. My youngest was also born 16 weeks early and has additional health issues beyond the complications of MHE. For additional background for anybody who's interested, here's a link to a reasonable explanation of the condition: http://ghr.nlm.nih.gov/condition/hereditary-multiple-exostoses
though the line about "not present at birth isn't entirely correct.
So, the problem I run into is when people ask me why I had kids with my ex-husband knowing that they could be "sick". I love my children dearly and wouldn't trade them for anything. I shouldn't have to explain myself. In truth, I did not realize that the condition could be so severe. My ex-husband and his mother both had reasonably mild cases, with just minor disruptions to their lives. The literature that was out there 15 years ago when I got married wasn't nearly as robust as it is today. It's a fairly rare condition, and therefore doesn't get much attention. If I had known how severe it could be, I might have made a different choice, but I made the choice I did and I have three wonderful children as a result. I can't imagine my life without them.
I get these sorts of questions from nearly everybody; near strangers to family members. I generally respond somewhat like I said above, but some people just keep pressing, and other people I just don't know well enough to be comfortable explaining all that. I'd appreciate any advise you guys have.