Today was uneventful. That does not mean it was not emotionally draining. You see, ALS is a slow, PROGRESSIVE disease. It doesn't get better, it just gets worse. Apart from Divine healing, it is not going to end up rosie. I am struggling with the Divine in all this. How does a loving God allow this to take place in the life of one of His own? I guess without an eternal perspective you cannot get your arms around this. I have to admit, i'm a little pissed off about all of this and have been for some time. I know that Mare has affected many people and her grace in all of this does spell G-O-D. I just don't feel it. I have no desire to be a part of it. Enough about me. This is about her.
Mare's lone appointment today was with the massage therapist. Hospice supplies a message once a week for mare and her caretaker. Unfortunately for me, i was unable to take part today so Gpa's wife Kay was the lucky reipient of the half hour rub.
We were to have family time today. Lauren is still a little sick so she stayed away to protect her mom. I'm moving her to kirkland tomorrow to move into Northwest university.
I went to practice today. It is a struggle now everyday to know what to do. Do i leave her? Mare is really struggling to breathe on her own so i dont know if i should leave. My daughter has told me we need to continue living regardless of this disease. I guess as long as i am ok with my relationship to mare i must continue to do my stuff. I have no regrets. I have and will continue to take the best care of my wife that i can. I am no good to her if i dont stay mentally healthy.
We decided to invite the walkers over tonight. We have many close friends and the walkers are two of our closest. Bob is considered to be the other woman in my life. Ok, that may sound a little weird but it is all good. I am lucky to have such a good friend. I only wish he wasnt so good at cribbage. He took the cup back tonight.
Putting mare to bed is so weird. Will it be the last time? That is what goes through my head every night. I kiss her and tell her i love her. I try to make her comfortable. She asks me to move her pillow just right as she cant do it herself. I have to get her arms just right as she cant do it herself. I have to move her legs just right as she cant do it herself. I have to get her mask on just right as she cant do it herself. I have to scratch for her as she cant do it herself. I'm not complaining, i will do whatever she needs. I just want you to know what an amazing lady she is as she doesnt complain. Hardly ever. Yesterday, she was trying to get something just right and said, "i just want to move." Can you imagine not being able to move? How does she do it and stay so fricken postive?
I want to officially go on record and proclaim loudly and forcefully that i HATE ALS! I hate everything it has taken from Mare.
May mare have a restful and peaceful sleep.