Tuesday, September 8, 2009

Monday September 8th

its 130am and Lauren is with her moms bedside. Lauren is my rock. She has been so strong througout this whole ordeal. She has her moms beauty and strength and grace. I know she will be a stonger woman after this is all over. I am so proud of her. Brian has his moms compasion and personality. My two amazing kids are such a reflection of their mom. Marilyn will be with us all long after she is gone through the life and accomplishments of our children.

It was almost a year ago that we got the official diagnosis. Although i knew it was ALS long before the doctors told us. I was reflecting tonight on how our lives have changed in a year. Things i now take for granted would have been unthinkable a year ago. Flushing marilyns feeding tube. Bathing her and helping her go to the bathroom. Giving her injections of serious medicine. It is all part of a normal day now. So surreal.

Marilyn was in rare form today. She finally was able to get some sleep between visitors and when she woke up, her sister and her boys were surrounding her and of course kathy was crying. Mare woke up and said, "am i dead?" She was throwing out the one liners today like others take a breath. Bad metaphor. She was flippin it to me and my sister lisa who came up to spend the night to help. She was in a good mood. Almost every word was a joke. Amazing when you consider if she were to take off the mask, she would probably pass in just a few minutes. I think of all the self pitty parties i have and feel ashamed when i am with her. So courageous. How does she do it?

A friend of mine that i have not known that long told me her husband with ALS finally got to the point that he took off his mask and passed in ten minutes. Someone asked me today how long Mare can continue like this. I told her it was hard to tell. The rapid progression of this damn disease will eventually make even the bipap machine useless in helping her to breathe. Her lungs or heart could go any minute. Or, Marilyn could continue to bless us with her story for a while. Time will tell.

I made the decision to take the first two weeks off work which was to start tomorrow. Apparently, june july and august were not enough for me. I cant leave her like this. A good friend stepped up and will sub for the first two weeks or more. I have enough days on my own to take the first three weeks off. I was hoping not to do this as i know i will need time when this is all over too. Another friend took the responsibilities of my tennis team. I am so fortnunate to be surrounded by such supporting people.

Gina had to go home today. That was so hard for her.

We played the lullaby for mare again. If you did not listen to it, you must. Check out Sundays blog and cut and past the link.

May mare have a restful and peaceful sleep.


  1. I am right there with all of you. Loving and praying and holding you.

  2. I was so blessed to spend some time with Mare, my brother and his family. I honestly don't know how they do it day by day. I was so nervous just giving her something to drink. I just held her hand and gladly took in a weak smile from time to time that warmed my heart. Talk about proud... When I witnessed everyone's great strength in helping her, that was a moment. I am glad I got to be a part of it. Her father who has had to deal with this horrible disease more times than anyone should, was at her side, either holding her hand or reading to her. Jeff had to administer drugs to her and Mare was telling him the dosage to give her. He was a nervous wreck, but he is a good husband…He never gave up.
    She had us rearranging her bed and wanted everything in order. She was very precise as to where she wanted things. ( I told her she reminded me of Aunt Mona ) It gave her something to do, I think, and also some control. She was very happy when we were all finished.
    While Jeff was playing the guitar for her, Her dad was thinking of a song from church that he liked. They tried to find it in the song book but to no avail. She told Jeff the notes to play from song her dad was talking about. When she was done doing that she said “there’s your song”. It was funny.
    When here sisters left and my heart just literally ached for them. How hard that must have been.

    I always thought if something were to happen to me I would want Marilyn to take care of ME not the other way around.

    I had a hard time leaving today as well.

    Jeff, I know you have some nurses to help tonight, so you get some rest and know she is in good hands.


  3. By the way, here is the song that Jeff sings to Mare "A Better Man" by James Morrison. I can't listen to this song anymore without crying. It's beautiful. Take the time to listen to it.


  4. So the one that says Cammie is from me, Dorothy. Don't know how the Cammie got in there.

  5. Marilyn

    , holly erker with the ballard eagles drill team from when kath instructed. i just want tell you how much you continue to inspire me! i obviously was not on the team at the same time you were, however, i had the chance to follow in your footsteps when u were youth queen if i'm not mistaken from '81? i've always been so proud that i could follow e of the ... Read Morejones' girls footstep even so many years between achievements from my year in '96. all your efforts and activities and support for the drill team is still felt and appreciated today. you are amazing with an amazing family i feel so honored to have known since 1989...
    hugs and my best wishes from vegas!!!

  6. Thank you for this blog Jeff. I can't tell you how much it inspires me and I'm sure many others to have a window to the beautiful love you and your family are sharing through this tough journey. My words can't express the pain I feel for the emotions that must rush through all of you to see such a wonderful person be stricken with such an unforgiving disease. Marilyn's graciousness has prevailed despite it all and that is a testimony to all of us. I wish all of you comfort and am so happy to hear of all those who are close to you and able to strengthen all of you with more love! This is tragic with out a doubt but none-the-less a beautiful thing to see such love present, surrounding, soothing. Marilyn and I were grade school friends. I think their phone number use to be 783-3314:) Don't know if that's right because my middle aged brain is lacking... but I can tell you I called their number all the time!!! Funny the things we think of... It's so hard for me to think of Marilyn feeling bad. It makes me feel about 8 again... helpless. Again, thanks for sharing your lives with me/all of us who care. Cindy Manlove-Moran

  7. I totally agree w/ you when it comes to Mares humor through all of this. Both Dan and the kids said the same thing when they piled into the car after visiting on Sun. Proverbs says that a joyful heart is good medicine. Even in the middle of all of this I truly see Mares joy. <3 Beck

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  9. Thank you Jeff for all of the updates on Marilyn. You all are truely blessed to have so much love and support as you do from family and friends. I was heartbroken when I learned of Marilyn's diagnoses. How could this happen to such a wonderful person as Marilyn is. Even though I hadn't talked to Marilyn in over 20 years until a few months ago, it was good to hear her voice, and do alittle catching up. Marilyn's strength and inspiration is so amazing.
    Thanks again Jeff for your updates.
    Mary Craigen Anderson