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Two things struck me about this post. First, and this is an important aspect of this blog, SweetSpeakableSorrow, is the ease with which my mother openly grieves her losses. Don’t miss her sentence: “All your life, you learn to value your privacy, personal space, and modesty, and then you are expected to give it all up in a moment.”
Then, as always, she jumps back into the chosen mindset of joy and gives us a bit of whiplash!
Second, my mother adored her two brothers and sister. Although they were half-siblings, her life’s mission was to love them well. She believed with everything in her that, God had given them to her as a gift.
She especially adored her sister, Kathy. In a later blog post, my mother writes of an incident where she finds she accidentally locked herself in a hot porta potty and, again, unable to get off the toilet. Kathy was there for that adventure, too.
-Tricia
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The plan was to go to Oklahoma for Cliff’s family reunion, but since they have had more than their fair share of tornados, we decided to turn left instead and head for Montana. We left Tuesday morning not quite as early as Cliff likes, he is a 6 AM person, but since ALS, I am more of a 9 AM person.
It was a great morning with the first stop at Starbucks near our house; admittedly, I am addicted to venti black ice tea, no sweetener with one Sweet and Low. Thankfully, my husband is an enabler. He ensured I got my fix, checked the stop off our list, and continued our trip.
Next stop, pick up my sister Kathy who agreed to accompany us as my Personal Caregiver. I am not sure she knows exactly what she has gotten herself into. There was some concern about her baggage. Literally, the girl likes stuff. Before the trip, we showed her her space in the van, the only stipulation being there had to be room for my bike. We loved it because she came loaded with all kinds of snacks filling a large grocery bag. In addition to the snack-filled grocery bag, she brought one suitcase, a carry-on, and her purse. Although she was a little dismayed this morning when she realized my suitcase was bigger than hers. She never asked about the allowable suitcase size. Oh well, she’ll figure this out. Kathy is excellent company and a champion caregiver.
The first night in Bend, Oregon, brought some challenges for both Cliff and me. Without being too graphic but still wanting to address my condition is a delicate balance. This disease is frustrating because I feel so good on so many levels but moving, standing, and sitting can be a struggle and very tiring. In talking to Tricia this past week, I mentioned I feel like the girl who cried wolf because I have written about my inability to walk for so long. The muscle weakness is so subtle it reminds me of the frog in the pot of cold water, and the temperature is slowly turned up until it boils. Poor frog didn’t realize he could no longer hop out. Likewise, I can’t hop out or change the temperature.
On one of my middle-of-the-night trips to the bathroom, I knew I was in trouble. My legs were so weak I needed help from Cliff to get up from the toilet. This is the first time. All your life, you learn to value your privacy, personal space, and modesty, and then you are expected to give it all up in a moment.
Although, again, I did chuckle in the middle of this fiasco: guys have no problem in getting a girl’s panties off, but putting them back on is a different challenge.
We have really done well, even though this is only day two of this journey. I could write an exposé on public restrooms, particularly at truck stops, but I don’t want to discourage anyone from a road trip. They are great, particularly when you have a grocery bag filled with snacks. Tonight is Spokane, where we will hook up with Cliff’s sister Betty and her husband Bob, then onto Kalispell, Montana, tomorrow. Great Fun!
-Susan
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