Sorry to hear this. I'm sure there is a range of emotions that I can't begin to understand.
I reflect on something I heard one of my aunts say. The youngest sibling in my dad's family (my uncle) was born with Downs Syndrome. My grandparents spent unmeasured time and effort to care for him and keep him part of the family. They also invested time, effort, and finances for the cause of mental disabilities in the community. Both of them passed away before my uncle, and when he died, my aunt said, "If Dad and Mom were here, I think they would say that something has been accomplished." They were given a special child, and they fulfilled their responsibility as parents to take the best care possible of their child. Their legacy of care for him was a statement of their love and value for him.
In reading Randy's comments, it would seem that the Long's can also say that something has been accomplished. They have cared for their son for the years he has been given. They, too, have expressed their love and value for him. Actions speak louder than mere words. In a world where there is less and less worthy of respect, I have huge respect for that accomplishment!
QQ