My son's condition means he'll likely die before age thirty and I find myself simultaneously trying to make every moment count and also just living normally because the alternative is paralyzing.
More people experience this than they realize.
The knowledge of abbreviated time creates an impossible tension between hypervigilant meaning-making and the necessity of ordinary life.
“Where Are You with Rare and orphan conditions?”
If this sounds familiar, the Library can help you find the bigger picture.