Tuesday, September 8, 2009

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



  1. Those really were voices of angels. So beautiful. Thank you for sharing. I check on your blog every day and think and pray for you all the time. It was an honor to be a part of Marilyn's army ride time this year. Tell Marilyn how great it was to have her to facebook chat with while I lived in England. She's a wonderful woman and a great example of how one should live their life. Thank you again for sharing your lives with us... Jessie

  2. Jeff & Mare, Thanks for the details. I am in awe of your strength of character Marilyn. God has created a wonderful masterpiece in you. Every time I log onto this blog I feel closer to you guys. Today I read: Be still and know that I am God... What powerful words in such a small sentence. I needed to hear it, slow down and experience really knowing him. Just like reading about you I feel closer to you, He wants us to read about Him and feel close and loved. Love you, praying for you. Megan

  3. Jeff - man...I miss you and your family. I probably shouldn't have read your blog at work as I'm having some trouble keeping myself composed. My Mom did try to warn me that it was quite moving to read.

    I appreciated you as our youth group leader and you and Marilyn for being such great friends to us but I don't know that I've ever taken the time to properly thank you both. I admire you both and the kids you've raised.

    You are all in my prayers.

    p.s. I wanted to apologize for that time we made you sleep in the bathroom in Washington DC because you were snoring so loud...

  4. gabe - thanks for the laugh. i enjoyed my time with you very much. I love you brother.