I wish I had some wonderful advice to give you, but I just don't. I can only say that my prayers are with you and your family, and feel free to come here to vent/chat whenever you need to.
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From the movie The Hours: "If I were thinking clearly, Leonard, I would tell you that I wrestle alone in the dark, in the deep dark, and that only I can know. Only I can understand my condition. You live with the threat, you tell me you live with the threat of my extinction. Leonard, I live with it too."