Wizard of Alz blog

I met with the attorney to sign the new documents changing my Power of Atty (POA), to someone else other than my spouse. If something happens to me, my LO could not take care of business for herself much less for me. I chose someone whom I trust to take care of her the best way possible.  I love her.

I felt sad; like another loss was notched, among the many losses I’ve experienced so far. All the while, knowing that this is only the beginning and yet still trying like hell to not focus on the loss but instead focus and enjoy what is still left! Do I sound like a crazy person!? because sometimes I feel like one!!  I love her.

I also made the decision to cut back on work severely, (self-employed; finances should be fine), so that I can spend time and enjoy life with my LO while we can. I had been toying with the idea for a while, but it became clear what I should do after I asked the Dr. what he thought her progress what like, slow?… fast?… He was pensive and thoughtful for a few minutes and then said he thought she would be in the late stages in about 5 years! I was shocked into reality!  Just typing that brings the tears and sadness all over again. I guess I’ve been doing such a “good job” not focusing on the future that it really hit home how fast 5 years is. (now, I know he doesn’t have a crystal ball and I can’t take the prediction to the bank, but I do respect his opinion.) So the decision to not work as much was easy.          I love her.

I pray most every day for the strength and courage to do what is in front of me. I don’t pray for her to be miraculously  cured; or for the research community to hurry up and find a cure. That’s not going to happen. What is going to happen, is that she is going to continue to decline and to lose function and I will need to continually adapt to the “new” situation. It won’t be easy nor pretty. So I pray for strength and courage to do the best I can.                 I love her.

I don’t want to give you the impression that I’m an Angel or anything like that! (of course, some of you know better) because  but some days I revert to my natural state of being which is a self-centered and selfish SOB! (which is why I have to pray every day!) I think about me and how my life is affected, what I’m missing out on… etc. I wish this wasn’t happening to me; it’s NOT fair! Poor me!! OK! I’m human. So I’ve learned to not deny those “feelings” but instead express and acknowledge them.(this blog and friends really helps); but I also know I can’t stay “there” too long. Dangerous territory ….. I do love her.