I think about this a lot, because my sister was so disabled. I wonder what HER life would be like if she was still alive today. The thing is that in recent years they have made strides in both treatment and testing of children that suffer from the same affliction, and the majority not only survive.. but some thrive. What she had was extraordinarily rare, and still is, so it would be difficult to predict how she would be if she were still alive. I can’t imagine it. She is always a child in my memory. As for my life, I think that my role as a caregiver would be in tact.. then again, I never gave that up. It has been a part of me since the day she came home, and I have never been able to let it go. So I guess that isn’t much different, anyhow. I do owe it to her, though. I wrote this on your FB status and it told me I didn’t have permission to post it because you deleted the status, I copy & pasted. lol.