This week has been one of those weeks where I want to say ‘I cannot adult no more’ and curl up in my blankie with my favorite stuffy and watch nonstop cartoons with a big overflowing bowl of captain crunch berries.
The big girl version: Curl up on my sofa in my yoga pants, grab a bottle of port wine and cheese, and binge watch 48 hours of Star Wars, Harry Potter, or James Bond (I am very much a girl nerd, no Lifetime channel for this girl)
Both versions sound wonderful. But since it’s the holidays, I try to plan every last second of our days post-Thanksgiving to January 1st with Holiday parties visiting with friends and family, Christmas shopping, making cookies, Making eggrolls, decorating the house, Christmas events like lights, or train rides, Charity events and volunteering. It can be exhausting, but I like to plan. I geek out on figuring out how to coordinate, multi task and maximize my time so I know what’s coming. I know how to react to changes. I know how to fix any issues that come up because I planned it.
With my deep rooted need to plan things, I also am flexible enough to understand that things don’t always go as planned. I do my best to not let it show. Oh sure I may be flipping out on in the inside but on the outside, I am trying to keep it cool. Phyllis’s ALS diagnosis was one of moments of me trying to be cool as my dad told me. I didn’t cry, I consoled him and her. Behind the scenes, if you looked behind the curtain, like in The Wizard of Oz, someone had just pulled the rug out from under the Wizard and kicked him in the stomach.
I went into fight mode. Thinking, trying to figure something out. How do I plan around the diagnosis, how do I formulate a plan for a fix. For the first time in my life I felt that this is something I can’t fix. For a minute. Then it was calls to specialty clinics, calls to doctors, being a pain in the ass to doctors. Trying to research what can be done. Anything, something, it was a plan. A week by week plan that I felt was crappy and one that would be poorly executed, but it was something.
ALS however, is like the 3-year-old kid that is content one moment with their favorite fruit snacks but then 30 seconds later chucks them at your head because they have decided they don’t like them anymore and will refuse to eat them and wants something else. The normal that we thought we had with the symptoms and changes we were seeing with Phyllis were changing weekly. Just when we thought, ‘We can do this, we got this’ something would change. She needed a walker, she needed to be able to communicate since she lost her voice, she couldn’t eat rice, or salad any more, then later meat. The constant change is the hardest to deal with. I roll with the punches and get up and brush myself off. It’s hard on all of us. But I know it’s hardest on my Dad and Phyllis.
Grandma and her Grandbabies: L-R Hunter, Bryan II, Bailey, and Brody
Phyllis’s status for the Week of November 28th: This week we got a CT scan on Thursday. This will be to check things out since last week she ‘felt like she had a weight on her back right side’. This started an argument with Her and my dad. Apparently she didn’t tell him but told me when I was there to see them. She just smiled at him sweetly and he was saying ‘It isn’t funny’. I was torn between laughing at him with her and then also getting yelled at by my dad or scolding her for not telling him. I chose to just stay quiet and smile. She is also getting the CT to get a feeding tube since she is losing too much weight. It isn’t because we aren’t feeding her. We are all driving her nuts with our constant badgering to get her to eat. It is just getting harder for her to eat. If all goes well, we will have that done next Friday. We also have been and continue to look into alternative treatment options. We see another doctor next Wednesday and I am still looking at other treatments.
Speaking of alternative treatments.
In my need to try to fix things, I try to research things too when something is suggested. Right now we are looking at ‘wellness clinics’ that offer supplements and alternative treatments. That also includes things like Cannabis oils or Essential oils. I will look into anything to see if it is legit and let Dad and Phyllis know. So I have decided to use the power of social media! If you have legitimate suggestions feel free to pass it my way.
In closing, for those that have sent their Christmas cards to Phyllis and my Dad, thank you so much! I know we put a lot on ourselves during the holidays with the need to do everything and make sure it’s perfect. But I have to remind myself constantly that I have to say no to things ( that’s hard for me 🙂 ) and that it isn’t always going to be perfect. What’s important is who you are with and the time you have fills you with happiness. For example, this week I let Hunter decorate our Christmas tree. It is far from the perfectly placed and evenly coordinated ornaments that I would have done. But we had fun putting it up together.
May your holiday season be filled with happiness, the misplaced ornaments, and fun memories.
Peace, Love and Blessings
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Prayers and thoughts for all of you. You are all awesome to be there for her I know it must be very hard on all of you. Family is everything.
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