People say “passed on” or “passed” or “gone to heaven.” I don’t know where she is now, I don’t think we get that information in this life. Hopefully she is somewhere and sighted and walking and healthy.
She passed away at 11:03pm on Saturday, April 8th. In my arms, her hand held by my friend Anna.
I feel tremendous relief for Rachel from this disease and relief for myself and her brothers and sister. Batten Disease is no way to live and I stuck with my choices of DNR and no feeding tube without any hesitation or regrets.
I’ll miss you. She was my personal pain in the ass and I loved the shit out of her even when we drove each other nuts (she was 16, after all).