I do well when I have good, empathetic listeners. I also read books and articles about disability, about parenting children with special needs, and stories about people who have suffered. I find the stories especially inspiring because I have suffered too. Life with FOP gets more demanding as the disease progresses. Physical limitations and caretaking needs gradually but constantly increase.
Parents get older and more tired, but the disease progresses in spite of it.
Older parents are universally concerned about finding someone to care for their afflicted child when they can do it no longer. There were many families who were unable to attend the Second Symposium on FOP because they could not manage the difficulties of travel. Disability doesn't mean that life isn't worth living. Having a disability doesn't mean that victories aren't possible, or that gloom and doom must be the mood of each day. Disability doesn't mean a person can't lead a productive life.