Heartbreaking post! Made me remember one of pg's essays that I like but haven't really gotten into practice:
Life Is Short (
http://www.paulgraham.com/vb.html):
"Having kids showed me how to convert a continuous quantity, time, into discrete quantities. You only get 52 weekends with your 2 year old. If Christmas-as-magic lasts from say ages 3 to 10, you only get to watch your child experience it 8 times. And while it's impossible to say what is a lot or a little of a continuous quantity like time, 8 is not a lot of something."
Even if your child does not die, the way s/he is at a certain age is a fleeting moment that will never come again.