Saturday, September 12, 2009

Friday September 11

when i wake in the morning i have a brief moment, ever so brief that it is just another normal day. But then the "great sadness" i spoke of a few months back in one of our update letters descends. For all of us that love marilyn, we experience it. A helplessness of knowing what is to come and not being able to alter her future. So we do what we can. We comfort her, write her, call her, visit her or pray for her. You all are with us, every step of the way.

Grandpa and Kay allowed me to have the most normal day i have had in a long time. In the afternoon, i was able to go watch brian play tennis while they comforted mare. I was in heaven. I always wanted both my kids to devote themselves to tennis. Neither did but they both are pretty dang good anyway and it was fun to watch him. He beat a very nice kid from anacortes 6-3, 6-3. While i was there i got to see some great friends. His coach cheryl and her husband vince have been very kind to us. I got to tell cheryl thank you in person. Patti and Shirley Shanander, long time tennis friends were there and we talked for some time. My good friend Justin B who i love to play tennis with was also there. Of course our conversations were about mare foremost, it was good just watching my son and talking to friends. When brian finished i rushed him to school so he could tailgate before the Mount Vernon football game. He showed me something that the boys were going to do after the game. I could not respond to him.

I hung out at Bob Walkers til the game started. We went to the game and i saw many people who just by the smile they gave me, let me know that "they know."

Mount vernon won the game and as tradition, the team came over to the student section to sing the alma mater and then they did it. Most of the team took off their jerseys to show me what my son had shown me earlier. The QB on the team had the idea to honor brian and his mom by wearing shirts under their jerseys that said on one side, "Fight ALS Marilyn" and on the other, "We are with you every step of the way." I went down to the field and hugged each one i could. Boys who i never met looked at me with the eyes of the great sadness and said simply, "i'm sorry." When it gets right down to it, people are good! Brian was there too. I have not seen him weep much over the past year. It was good to see it last night.

Brian was voted Home Coming King. We are all so proud of him. My only worry is his mom will try to continue to fight so she can see that night in two weeks.

Marilyn is complaining more and more of headaches and difficulty breathing even with the mask. She is becoming a little more agitated towards me. I was here by myself last night with her. She was up several times again. She has asked for dilauted (pain killer) two nights in a row now. It takes away the terrible headaches and lets her sleep.

May Marilyn have a restful and peaceful sleep.


  1. Jeff, thanks for saying “You all are with us, every step of the way.” That’s what I feel. I imagine I speak for others as well, that in a very real sense we are experiencing this pain and sorrow with you and Mare, Lauren and Brian. Our footsteps fall so much lighter on the path than do yours, but please know that you are constantly surrounded by our love and prayers. Bill & Lois

  2. Marilyn: Brian DID get Homecoming King - so awesome. You guys made such a great young man.

    Jeff: Oh my goodness - I so wish I could have been at the football game. What an awesome tribute to your fam. I am so misty reading about it. It's so great that through this pain it's giving these young people a way to express compassion, what a growth experience for them.
    I'm sorry it's your suffering that is benefitting so many people. I'm praying constantly for you all.
    And remember - it's easiest to be impatient to the one you most love; you don't need to put on any masks because you're so safe and connected to that person.

  3. That's so cool about the football team! You have many, many people who love you and are supporting you and your family, Jeff. It was truly a privilege to be able to be one of the ones to stay with Marilyn the other night. I will always treasure that experience. You guys are on my mind continually!

    Love you,
    Kim K.

  4. I bawled so loud as I read about what the boys did after the football game. Oh my gosh, so touching. I just can't get over all the ways so many people have stepped into your lives. Oh, Jeff, my heart is aching to be there. I am wondering what happened to your entry for saturday. I didn't look yesterday and I couldn't wait to get home from church today so I could catch up. I didn't even want to stay after for the fellowship lunch. I am praying everything is ok. Marilyn is not irritated with you, Jeff, it is her disease. She told me she felt trapped last time I talked to her. I can't get that out of my mind...That she feels trapped in her body. I wonder if she feels trapped because she has so much life left in her and wants to stay? Or is it she needs to be set free by the Jesus taking her home? I think perhaps both. Thanks again for the picture with the boys in their shirts with Mare. I amglad to hear Brian finally shed some tears. Maybe I could give him some of mine because mine just don't seem to be stopping. There is no time and place for grief. It comes to me unbidden, almost every day now. I will check the blog again later today for another entry. Until then...

  5. Jeff, Mare & family,

    What beautiful experiences you are still enjoying as a family and community despite the great sadness. Thanks for sharing these neat moments. They uplift everyone!

    I KNOW your suffering is yielding great graces as it is joined with the redemptive passion, death, and resurrection of our Lord. There is no meaningless suffering when united with His. I have been blessed by the flu for the past 3 days and have taken the opportunity to be in prayer for even longer each day with you in my heart and my intentions.

    I pray in thanksgiving for the courage, strength, will, and compassion you have all exhibited. May these virtues burst forth upon and within each us as we strive to become more like Jesus following your precious example.

    Love, Cindy