I very much agree with the fact that EVERYONE needs to really think about whether or not they can bring a child into this world or raise a child and what their reasons are for wanting to do so. I think this is especially important for anyone who has a serious condition or disease or is a carrier of such a disease. We must really really look at what our reasons are for wanting to have children and how we <b>and they</b> will feel about that at every stage in life.
I very much appreciate your perspectives on things. Its is great to hear it. I think we get caught up in how things will effect us and don't always think as much about how it will effect others in our lives.
Just curious if people would feel the same if they were adopted by a person who was in remission from cancer or some other disease? The risks are fairly high that cancer can come back and may lead to death. So, would you feel the same about someone in their early years that had the disease, now felt wonderful and had a great opportunity handed them and chose to raise a child?
Similarily, I do know of CFers who have adopted from a third world country or a place that is horrible for orphaned children to grow up. I make the argument (and ask), is it worse for a couple (one parent with CF) to adopt this child and bring it into a loving home knowing it may one day have only one parent? Or, is it worse for the child to remain in an orphanage (or worse.. on the streets) without any parent to offer love and care? Clearly, the countries and/or agencies who do adopt to people with CF feel it is more important to place the child in a loving home even if it means the child MAY be faced with the early death of one of the parents.
I also want to mention, as I'm sure has been said, that many people are now living well into their 50's with this disease and can manage it pretty "well" considering. So, it isn't necessarily the case that a CF parent will die and leave their children with a single parent ealy in life. And, as far as dying later in life and leaving a child, I had friends growing up who had to watch a parent go through a debilitating illness (cancer, MS, etc.) and pass on. So, although those parents did not choose to bring up a child with the knowledge they may die early, it is still a real possibility for anyone, CF or not.
Now, seeing what a parent has to go through to "survive" this dreadful disease is also very real and I appreciate the candidness of the "children" of CF parents that posted how that makes them feel. I very much respect your experiences and perspective on such things. It certainly made me think.
I'd like to make the case that diabetics may also have to be on painful dialysis someday or cancer patients go through painful extensive treatments for cancer... So should no one with diabetes adopt or have a baby since they may end up needing extensive treatments and die painfully and early? In fact, smokers may very well develop emphasema and/or lung cancer, require nebulized treatments and hospitalizations and cough up loads of mucus and be very very ill and die early. Should they not have children because of this? I know neither of the children are suggesting people with CF don't procreate, but I'm just being the devil's advocate here to see another perspective. Just some things to ponder. In all situations, I agree people need to give it some serious thought.
I realize the CF treatment things are more routine and everyday, whereas a diabetic who brings a child into the world may not get very ill and need dialysis until later in the child's life. But, many CF patients are very healthy (and should be if they're considering child rearing) and may require very few hospital visits, so it just comes down to explaining the nebulized treatments and vest (many children who see me doing it have actually wanted to try it since its like an "astronaut"). I lead a fairly normal life aside from these things and have even regained 10% of my lung capacity in the last several years from exercising, so feel that would be the only thing that would really set me apart from other parents that have health issues (diabetic parents, etc.). I have a relative that has severe fibromyalsia and is raising 3 girls. I think her staying in bed all day many days and in constant pain for a great majority of the girls' lives is far more "visible" than my disease. Just another thing to think about.
Very interesting topic. Thank you for starting it and all the wonderful posts!
Edited to add: I also want to mention that though my husband have tried to have a baby and looked into adoption, at this point we are on the fence as to whether we ever want children. So, I am not writing this trying to advocate for all CFers to have children. I'm just throwing out some other things to think about. This is an extremely personal decision and should involve ALL parties involved (including, and most importantly, the unborn or unadopted child.)