Oh my Carly, I feel for you. On top of all the loss (as he declined physically) you also must have felt such confusion ... and that comes with so many other feelings. And then to never have it validated ... to never have it addressed ... tough. Even harder in many ways than our case, where I DID end up getting another/additional diagnosis or name to what I was seeing. I so get the feeling of shouting into the dark. If you ever want to discuss/write more, I'd be happy to have you contact me. The ALSA has my email address.