Your post is a joy to read.
Having a "Special Needs" member of the family -- as you are finding out -- is indeed a great responsibility but also a great blessing.
I sometimes think the way our society is weeding the handicapped out at the root that is the womb (or as embryos, even, for those who Really like to Plan their Families or overcome their own handicap of sterility), has a twofold effect.
On a somewhat superficial and base selfish level, it leaves folks unable to appreciate how truly blessed they are to be "Ordinary." They become susceptible to the sort of morbid dissatisfaction that comes from failing to be an American Idol of some sort or which results in eating disorders, self-mutilation and other repercussions associated with having failed to be perfect somehow ... in looks, brains, talent, etc.
But there is also that fundamental level where -- absent the opportunity to learn in person that a child with brain damage or genetic malfunction is every bit your essential "equal" (or sometimes "better") as a human being and having as a given the option to kill on sight such sub-humans -- I think we end up with a very skew notion of what is and is not Essentially human.
My aunt has brain damage likely the result of being caught in the birth canal during a difficult labor. She has taught me more about what it is to be human -- or glimpse a real live angel, sometimes it's hard to tell -- than almost anyone I know.
You are so right. Not a day has gone by that I haven't felt the deepest grief and pain for my son. And there hasn't been a day when he's felt sorry for himself. Not one day. He's teaching me more about courage, strength and heart by his example than I thought possible. Try feeling sorry for yourself when your kid can't go a day without nearly dying. Try to feel sorry for that kid when he gets up, brushes it off and goes back to playing. Yup. These kids DO teach us what it means to be human.
I'm really grateful to have stumbled across this thread tonight. It's good to have a reminder. Thank you.