Saturday, September 12, 2009

Saturday and Sunday the 12th and 13th of September

Today was a day of singing. Dr. Bynam came with his quartet and sang for mare. She loved it.
Music is such a part of who she is that i know that meant so much to her to have those gentlemen take the time to sing to her. Lauren was also singing today. She was at a scholarship contest for the Eagles that she has participated in the last three years. She has finished 3 rd and 2nd and is hoping for 2nd again so she can compete again next year. She sang "you raise me up" in honor of her mother. She got a little choked up and so did everyone else as she told them why she was singing the song. She ended up taking 3rd again but that is $500 more dollars we dont have to shell out for next semester.

Before mare lost her ability to use her arms she started making quilts for the kids. As the disease progressed, she needed help from her quilting buddies but they both got done. They are so beautiful and it makes me happy to think that long after their mother is gone, she will be tucking them in each night and keeping them warm, the kids will be able to hug their mother too. The attached picture will be sewn into the back of Laurens quilt. This is my favorite picture of them.

I put in my second night with mare alone. She was up many times. Her throat gets so dry from the machine. She needed water several times. She is still quite short with me. She figured out that we had not been giving her the anti depressant the doc had put her on. you are not suppose to go cold turkey on those. I quickly gave her one :)

She awoke Sunday and wanted to get out of that stinking bed and into her chair. We were not sure it was the best idea. At this point, whatever she wants to do she can do. I mentioned a few days ago that Mary Rebar said the nutrition she is getting in her tube would cause a rebound effect and she was right again. We got her into the chair and her sister Kathy and neighbor Lisa washed her hair. She loved it. We did notice that the disease continues its ugly progression of stealing from mare. She is not able to use her right hand to control the chair like she use to. That is just from the 6 days of being out of the chair. It doesn't stop. It just keeps taking. But not her sense of humor.

On Saturday, mare asked if i had called about the batter pack yet. I confessed i had not but would do so on Monday. She said, "why not today" in that cute little voice she has been using trying to talk on the machine. I said because they are probably not open and i would call on monday. She responded, "what do you think they are going to do if someone calls and and needs a ventilator, tell them to wait til monday?" I'll make the call. The batteries packs are pricey. We had visitors drop off a card today. Very cute and funny, and had a check inside. I did not look at the amount as i did not want to appear rude and quite honestly, am a little embarrassed by all that so many have given us. When they left i opened it to find it written for $1,000. It will cover the battery pack for mare to be able to travel if she needs it. Thanks to all who have helped.

She had some visitors after that. Dr Knudson from the womens clinic brought her some beautiful flowers. Gpa and Kay brought flowers from church. The young man from the football team, Jake, who had the idea to honor mare and brian with shirts. He said there are pictures online at either or nwc athletics. I have not had a chance to search so maybe someone could and post the link? My dear friends Cindi and Jim also showed up. Cindi is a tremendous tennis player who played #1 at the UW and was like athlete of the century or something like that. I went to nationals in texas with her for mixed doubles and we went 5-0. I played ok but she rocked and gave me the best tennis experience of my life and i will ever be grateful for that. She has found a good man in Jim and i was so glad to see them both. Bob and Mo stanton also came and then it happened.

Mare wanted some sunshine. We were going to try to hook her machine up to an extension chord so she could go outside. we got ready to do all this and made the switch. Every time we take her off the machine it is so scary. We switched the machine to the extension chord and all was well. Until we heard an alarm and the machine went off. I freaked. I tried to see what was wrong but couldn't figure it out. I remembered we have a back up machine and we quickly got that out, plugged it in and after some struggles we got her breathing again. Nerves were shot. I was shaking for several minutes. Lisa and i took the other machine outside and plugged it in and everything was working again. I must have loosened a chord that caused it to alarm and shut off. We tried it again and Mare is currently enjoying some sun and friends and neighbors on our covered porch. She is living life. More that most. Taking advantage of each moment.

I talked to the school district and found out i dont have any sick days this year because i have not worked yet. They are going to put out a request for shared leave again as i did not use all the days given me last year even with all the days i took off to be with mare. My fellow teachers have been more than generous to me. Again to the point of embarrassment. At the very least, i can put in one day and then get my days to use for this year.

Two more angels are coming to take care of mare tonight. I get to sleep. If you would, remember our dear friends Pam and John (john has cancer) in your prayers if you pray.

May mare have a restful and peaceful sleep.


  1. Will add Jim and Pam to my prayers, Jeff. I had to share this passage from Mark Twain's book on Joan of Arc. It surely describes Mare. All the ladies will get a kick out of this:

    Joan and her band of men were on their way to the king and her scribe writes, "But if we had had hard times before, I know not what to call the five nights that now followed, for the marches were as fatiguing, the baths as cold, and we were ambuscaded (ambushed) seven times in addition, and lost two novices and three veterans in the resulting fights. The news had leaked out and gone abroad that the inspired Virgin of Vaucouleurs (Joan of Arc) was making for the King with an escort, and all the roads were being watched now."

    Here's where it gets good. "These five nights disheartened the command a good deal. This was aggravated by a discovery which Noel made, and which he promptly made known at headquarters. Some of the men had been trying to understand why Joan continued to be alert, vigorous, and confident while the strongest men in the company were fagged with the heavy marches and exposure and were becoming morose and irritable. There it shows you how men can have eyes and yet not see. All their lives those men had seen their own womenfolks hitched up with a cow and dragging the plough in the fields while the men did the driving. They had also seen other evidences that women have far more endurance and patience and fortitude than men--but what good had their seeing these things been to them? None. It had taught them nothing. They were still surprised to see a girl of seventeen bear the fatigues of war better than trained veterans of the army. Moreover, they did not reflect that a great soul, with a great purpose, can make a weak body strong and keep it so."

    That passage touched me and made me think of Mare's great strength of soul and body which is evidence of her great purpose!

    Thank you Mare!! You are WOMAN!

    Love, Cindy

  2. thanks cindy, i read this to mare and it made her smile.

  3. Jeff, It was a blessing for Pete, baby Jack and me to see you and Mare Sunday.
    All day while we hiked in the beauty of the North Cascades both Pete and I were thinking of Marilyn and her incredible strength and grace. We were renewed in gratefulness for our physical bodies which are still working so well, so well that we don't have to think about it or try to do anything at all, just pretty much do whatever we want. We were reminded that we have to give it all back eventually.
    I am so grateful to Marilyn for helping me learn how to hold and comfort my little baby when he weighed 4 lbs and was in the incubator--- now so big he won't sit still and wants to pull on everything, like breathing tubes! Anyway, I still remember how she showed me to place one hand on his head and one hand on his chest, and just hold them there. No moving, no patting, no rubbing, just stillness and presence. For the rest of my life I will remember how Marilyn ministered to both Jack and me during those weeks. I learned alot about BEING and RECEIVING during that time -- sometimes you can't do anything except BE THERE. Thank you Marilyn.
    And thank you Jeff for sharing your journey through this blog. Blessings and peace to all of you.
    Love, Elizabeth Beglin

  4. Elizabeth, thanks for the kind words and also for the WONDERFUL meal. We had enough to feed all of the kids that showed up too!

  5. Hi Jeff, I'm really good frieds with Tia and with Brian. Debbie sent my family ths link and it has moved me so much. Me and my friends down here in Alabama are praying for Marilyn and your family. On October 3 I am going to be participating in the Alabama Walk to Defeat ALS to support Marilyn, your whole family, and to find a cure for this disease. Here are some of the pictures of the shirts the football team wore from the NWC Athletics website. Peace and blessings to you and your family,
    Lauren Whisonant