@bigbee: Holy crap. Maybe my math is off, but your dad lived to be 68 with CF!?!?
To all the parents with parent guilt...My mom went through the same thing, and though she had me when she was 39 (late), I will probably out live her. As a parent (imagined, I don't yet have children, but I want atleast one), I can't imagine anything more painful than having a child pass before you. There is literally nothing worse that my brain can construct. This is why we must enjoy every minute with those who have an express ticket to the end of the ride.
A long time ago (in my very early 20's), I was in a downtown bar, with another friend, drinking beer and having whatever fun we were trying to have at the time. I saw a guy in a wheelchair, that looked a lot like Mathew Broderic from the movie war games. He was wearing a Ministry concert shirt, I called out to him and gave him props for good choice in music, and till this day, we are very close friends and have been through a lot together. He has MD, and degrades just like I do, but differently.
He has gone from being able to hold a giant way heavy glass liter container of beer with me, to me having to help him get beer in a very small paper/plastic cup. I'm basically watching him die in front of me. We were going to start our own tongue in cheek public access cable show called "Two crippled losers", but the time needed to be able to be granted production status, well, wasn't gonna be.
Where he has his health degrade openly in front of me, mine degrades internally. Where he can't lift a certain amount and people see that, my lung capacity will go down and people won't see that. But neither is more screwed than the other. It's the same ride.
Just remember, regardless if you are a CF patient with the guilt that I have, or if you are normal and have some other form of survivor guilt, just realize it's all the same ride. Nothing will take away the pain, but as a parent, if your child dies at (fill in the blank age wise), you will be in that end result as well, just at a later time. Life has momentary beautiful gaps in it, but those are interspersed amongst way more negative moments. Those who leave us before we die, probably enjoy the same ratio of good to bad experiences, but inevitably avoid a ton of negative crap that is guaranteed to befall those of us who live to "old age".
