Our son's rare syndrome means he'll never live independently and my wife and I are trying to plan for after we're gone, but every conversation about his future care ends in one of us shutting down because the reality feels too heavy to hold together.
More people experience this than they realize.
The weight of impossible decisions creates avoidance that threatens the very planning that love demands.
“Where Are You with Rare and orphan conditions?”
If this sounds familiar, the Library can help you find the bigger picture.