Tuesday Sepember 8th

i remembered a few more lines mare threw at us yesterday. She was complaining that she could feel her nose full of snot and buggers. She asked my sister if she could borrow her finger......

while putting her to bed i was worried one of her bed rails was not up. So i asked if we should put it up. Mare responded with, "what, you think im gonna roll off the side?" She cant move......

Today was not so upbeat. She cried a lot today. The most i have seen in a year of dealing with this disease. I told her she was entitled. She felt trapped in the bed. She has been in there for 4 days now i think.

My sis went home today. She and Lauren were so helpful last night. Lauren had to go to class today also.

I feel for Gpa. Your children are suppose to out live you. He read her scripture and held her hand a lot today with Kay who is always busy cleaning, and doing the household chores i have no desire to do right now.

I have three angels from St joes who are taking care of mare tonight. It is so nice she is in the hands of trained medical staff. I am so tired. Physically and emotionally. I look forward to some uninterupted sleep.

Mary Rebar from the ALS association came today. She had some good advice for me and mare. She told mare that if she goes on the drip of medication, she will be a lot less responsive than she is now. She also told me that based on her experience, we are not looking at hours or days, but one to two weeks. It is only a best guess based on her many experiences with other ALS patents. Thats what suck about this disease. it just does not follow any game plan. But she would know better than anyone, having lived it more times that us.


Bub posted a youtube video of mare singing. Thought you might like to hear what angels sound like.

If the link does not take you right there (im having trouble) just type in Marlyns Army Throne of Grace

www.youtube.com/watch?v=2BdPFWrncM