This week, I came across a new website entitled Her ALS Story. The site “seeks to raise awareness that ALS impacts young women diagnosed before 35 and provide a community for them to connect, learn from each other, and find support so they can live their best lives.” The site provides opportunities to support their community by sharing their stories, shopping their merchandise, and supporting initiatives and research that provide resources to help those with ALS lead better lives.
My favorite section of the blog is the stories of the many women diagnosed and living with the disease. When I look at their faces and read their stories, I can’t help but think that my mother would have wanted to know every one of them. She would have LOVED them. I’m certain she would have wiggled her way into a keynote speaking gig at their Warrior Weekend retreat, a multi-day event to unite members nationwide, creating lasting memories and solidifying friendships.
We would have still met for breakfast, but she would roll from there into her little red van, and my dad would drive them into the sunset and their next big adventure.
–Tricia
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With a tinge of sadness and gloom, this is what I wrote yesterday:
“This week’s posting is a little difficult for several reasons. Nothing exciting has happened. I wasn’t stuck in a port-a-potty, no dancing at a wedding; there were no mishaps in my power wheelchair, no bizarre events in our daily life; it is the usual, average, take care of life week. At first, I thought, if there is nothing to say, don’t. But, if you know me, I can’t leave well enough alone.”
Today, things are brighter. What is the difference? Yesterday, I was physically exhausted for no reason other than it seems my body shuts down on its own when it needs to rest. Also, when I get that tired, I tend to get a little emotional, which, unfortunately, makes it difficult for Cliff. We went to lunch with friends and then home. I could hardly move myself in and out of the van and then to bed at 8:30.
Today is a new day. I would love to tell you it was because I got a great night’s sleep, but nope, that rarely happens. It is just a new day, and I feel better. Of course, it helps that Cliff and I went to breakfast with our very favorite daughter (our only daughter). Bacon and Butter was the restaurant we chose on 21st Street, Midtown Sacramento. It was good, we will probably go back. Since we go to breakfast every morning, we are trying all the hot spots in the Sacramento area. Everyone needs a goal. Also, we take suggestions.
–Susan