Saturday a lovely woman and her two daughters came to visit. Her husband passed 1.5 years ago after 3 years of living with ALS. She had a lot of valuable information, but there were two BIG takeaways for me:
First, she told me to not feel like a burden. She said that the people who want to help will. The people who want to be there will be there to support, visit, help, etc (promise this isn’t meant to guilt you). It will get hard – but I won’t be a burden to Jacob. Her message coinsides with some words of wisdom that Jacob’s Uncle B. gave to both of us – allowing others to help you is not only a blessing for you, but for them as well. And…I know this is true, pre ALS I always felt better when I could something to help those around me.
Second, she assured me that despite the struggle and loss, there were good times during those 3 years. The talks, hugs, and hand holding were all things that she, and her daughters, remembered fondly. It was really reasurring that there were some bright spots in all of this mess.
March 16: Thank you Brandy for new hair!
Marianne Has ALS 
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