Monday, September 14, 2009

Monday September 14th

I feel so rested, thanks to Marilyn's night angels pictured right. They had to administer some meds twice during the night. They also told me of some short shallow breathing that i have seen in nights past. It is a cruel reminder of the relentless march of als and its affects on Marilyns body.

Sunday, dispite the mishap, was a good day. Lots of visits and smiles and laughter. Two of Marilyn Sisters came up. Kathy stayed late and played cards with Mare.

Before Mare went to bed she wanted me to read the blog to her. I have not been doing that since the first time i did and she got a little anxious. I told her that i am very honest about what is going on as write. Maybe because she had just had a nice dose of ativan, she told me to bring it on.
So as i read her Saturdays events and brian getting homecoming king, i read the part of me being worried that she would try to hold on til then. She was taken back a bit and said something like, you dont want me to fight? My night angels quickly stepped in to explain to Mare that they understood me to mean that we were giving Mare permission to go not that we wanted her to go. She said, "you know what i'm waiting for? Not brian getting homecoming but brian getting married!"
I'm off to Bham today to get the battey pack for mare. It is also Massage Monday! Not only do they give mare one but me too! Several people have mentioned the possibility of taking some of my previous emails, combined with this blog and some background stuff and writing a book when this is all over. At first i dismissed the idea. Last night i thought well maybe. I'm thinking of calling it Mondays with Marilyn as a take off on Tuesdays with Morrie which is another book about ALS. I would not be the first to do such a project as i have seen many of the same online. But if i could help raise money and awareness to end this ruthless disease, it would be time well spent. My computer crashed so i need all the monthly email updates sent back to my email address. Thanks if you can help with this request.

May Mare have a restful and peaceful sleep.


  1. Hello Jeff & Marilyn..I'm just truly amazed at how strong the 2 of you are, when faced with the daily struggles, that we take for granted daily. I continue to pray for you all daily, and find myself praying more than daily, I can't get Marilyn out of my mind, I often question God why he has to take all the good ones???

    Love to you all
    Laurie Sharp

  2. Again I want to thank you for sharing your lives and your heart with all of us. In reading your updates I am so amazed at the amount of strength you all have had to have through all of this, and especially Marilyn's strength, courage, inspiration, support, and how upbeat she has been through this as well. You all are in the prayers and thoughts of so many. Hugs to you Marilyn.

  3. Jeff, Thank you for these blogs and pictures. I am glad you were able to get good sleep last night, you are doing an incredible job. And I am so glad that Marilyn was able to spend some time outside!

    Marilyn, you are such a strong witness for the Lord; your faith and strength have spoken to so many people. I will remember the way you are facing this challenge all of my days. You have made a difference in my life.

    Prayers for Peace and Strength to your family.
    Love, Connie

  4. Yes, Jeff you have a great gift to write from your heart and speak to many who share the same feelings as you do. Your writings on the blog just reconfirm how the struggle is long, but your faith in each other and your Lord is stronger. God bless you and your family. I think of you hundreds of times a day and wish you well, or at least comfortable for this stage of the disease.
    Love you,
    Judy A