Thursday, September 17, 2009

Wednesday September 16th

Marilyn slept until 1pm today. She had some difficulties early am and took two doses of her meds. It knocked her out. When she awoke, she requested a bath and the bath aide came right out again and took care of her. Cori was here and helped her. With a lot of visitors and more on there way, gpa and kay took a well deserved evening off.

Cori wanted me to get out for a while so i went up to the park and played some tennis with friends. I keep my phone handy just in case i need to rush home for any reason. My phone does go off and Carrol Thomas tells me there is a problem. I grab my stuff and speed home to find that in adjusting mares mask, the face mask became unsnapped and she was having trouble getting a seal and thereby breathing was difficult.

Later, when Lynn (night angel along with Holly again) and Bob were here, she was having another episode of anxiety caused by not being able to breathe. These episodes continue to become more frequent.

Tia (brians girlfriend) came by tonight as she wanted to give mare something. She told mare that the girls soccer team (of which she is the star) was inspired by the football team so they are all wearing red ribbons in their hair with Marilyns name and ALS on them. They took a team picture with a sign we love you mare and the girls signed it. Mare was moved to tears. Apparently the volleyball team is doing the same thing. Marilyn's story is moving so many to do something, anything to support her fight with a disease that offers no hope.

Brians homecoming assembly is friday. Mare wants to go. I told her that Mary Rebar from ALS said she would pay a heavy price for a big outing. Mare asked with a hint of fear, "what do you mean?" I told her it would just take a lot out of her. Is it smart for her to go? It does not matter. If she wants to go, she can go. She will fight this on her terms. ALS has taken so much from her. It cannot take any memories she wants to create.
May Mare have a restful and peaceful sleep.


  1. love, comfort, & and a big hug to you Marilyn.

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