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missmineau

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The land of living skies
Yesterday, my family, my mom included, participated in the 2nd annual walk for ALS in our community. Even though there was a very small turn out it was nice to be able to network and feel "normal" around people who know what you are going through. After the walk, everything seemed to hit me like a ton of bricks. A year ago, my mom was able to use a power wheelchair with her hands, she is now using one that she uses her head to guide. Last year after the walk, we all went out for breakfast and took her home so she could nap. This year we did manage to squeeze lunch in but by the time that was over she could barely hold her head up or speak. Also, this year we did not take her home, we took her to her carehome where we as a family, with her being the major decider, she now lives. It has been a year and the changes have been significant. We do celebrate the fact that she is still breathing and chewing on her own with certain textures like bread being difficult. It was a reminder of how cruel and unfair this disease is! The scariest part is the unknown, I know we are supposed to live for today but I feel pretty on edge most days. I cry for my mom, myself, my family, and everyone else touched by this devastating disease. It was a good cry, a much needed cry. I guess we all reach a breaking point and Ive tried very hard to keep it together ecspecially in front of my mom, but yesterday was hard! I dont think I will ever be able to forgive this horrible disease, its robbed way too many of way to much.
 
Good cries are a way to cleanse us so we can keep going. Good for you for participating in the ALS walk for the second year in a row. It's people like you and your team who will help the researchers find a cure some day! Diane
 
It does hit you really bad every now and then, doesn't it? But yet we maintain...

I think you'll find that the walk will be getting bigger each year it's held as you help create more awareness. I pray that it doesn't because more folks are diagnosed...

Hugs to you and your Mom... keep on fighting!
 
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