Well, I would have to say that it doesn't happen often, but every now and again I wake up in the middle of the night worried about the future of my youngest daughter. Her syndrome has left her unable to communicate her needs and epilepsy that is somewhat under control but still present and hindering progress. Although she completely understands and is starting to show some improvements in her motor skills, she will undoubtedly need assistance for all of her life.
Hence the renovation we just went through, to enable my wife and I to take care of her more easily as she gets older.
What wakes me up however is what happens when my wife and I are gone, who is to be her advocate ? Who will be in her corner fighting the system to ensure that she is getting the best care, treatment and compassion that she deserves. I imagine it's not so different for when people start worrying about their parents, but I get stuck on the fact that she is 9, and I am in my forties, mathematically speaking it's coming, like an accident in slow motion that can't be avoided.