One More for the People, by Martha Grover. We’ve only read snippets of this book but it’s supposed to be amazing. It’s about the author’s diagnosis at age 18 with a rare, potentially fatal disease, and about her family, and about life. A quote, selected at random:
“Only in retrospect did we realize that this was the third death in the story: Robin had died, my mother’s fertility had died, but our way of living had died. Our universe had stopped expanding. The mad rush of fertility was over. Our family was now a closed club—no longer accepting new members. And although we never would have admitted it at the time, perhaps Robin was the ballast that kept our crowded little ship afloat.
‘If you had died, our lives would’ve been so different,’ I said to my mother over the phone.
‘What would we have done if we had lost me?’ she said.”