A few weeks ago I started taking Topiramate to hopefully function as a cluster buster for my headaches. Around that time I also started feeling slightly weird in a variety of small ways, but each way could have some alternate explanation, especially once I got covid, at which point I assumed that my feeling weird was just covid bugs incubating in my system. Once I tested negative for covid I assumed that my feeling weird, tired, not quite right, slightly sick to my stomach, and with a trace burning feeling when I inhaled, was covid still exiting my system. Then I began to wonder if I had a new bug. But all along I also wondered if it was the Topiramate. Having relief from the headaches made it worth it, but I also got the go-ahead from my headache doctor to stop the Topiramate. When I didn’t feel instantly better after one night of not taking it, I went to an urgent care just to see if maybe I did have some new bug. Yes and no. I do have thrush, which is why my tongue looked whitish and why I felt the slight burning feeling when I inhaled, but everything else I have been experiencing and hoping wasn’t anything dire (but fearing it was), is apparently within the realm of normal with Topiramate. The reason I didn’t feel better as soon as I stopped taking it is that it will take a few days to clear out of my system. All of this is helpful to know and gives me pause when considering Sarah who takes a ton more Topiramate than I did. She has a harder time explaining what she is feeling physically, and her side effects might be different than mine, but. . . this may explain why she naps so much on the weekends, because I needed daily naps and sometimes two or three of them. And it can lead to belly upset. While her digestive issues are both life-long and seemingly under control until a few months ago, I do wonder if sometimes when she doesn’t want to eat much if it is because of feeling slightly nauseous, as I was after being on the Topiramate for a few weeks. Maybe how a person responds to a drug changes over time. It also comes down to a choice between the lesser of two evils. Sarah’s topiramate is to control her seizures, which is a top priority. Health and body questions are complicated enough when it is one’s own body, and doubly so when trying to ascertain what is best for another person. I am so grateful for the respite from headaches, and I am praying that it actually worked. I will only fully know once a couple of weeks have passed safely. I am also grateful to have experienced the side effects if this helps me advocate more effectively for Sarah in the future, or understand her body with more sympathy and understanding.
Carl came up with a new strategy for helping Sarah calmly navigate the times when Amy uses the bathroom, especially in the evening when there is face-washing and maybe a shower to prolong the time. Instead of just hoping that Sarah is in a good frame of mind, and instead of reminding her that she will lose technology if she screams and bangs on the door, one of us will sit with her and rub her back and feet while talking about Granddad and how she read books with him when she was two (note that he is still alive and she looks forward to reading books with him in the future – she is just really enamored by an early memory and seeks to recreate it). This week I got to sit with her each night, pretending to be Granddad while she pretends to be her young self. We talk about Granddad’s mustache and how maybe she reached out a tiny finger to touch his mustache and maybe it tickled. We talk about his striped shirt. We discuss why the stroller was kept near the door – because you can see it in the picture she loves of her young self sitting on Granddad’s lap. Not only has this worked to help Sarah have a relaxed, happy, calm experience – and presumably giving Amy a better experience too – but I love it too! I love having this snuggle time every night and am only wondering how I can also get a similar time with Amy. Between Schroth exercises, homework, dinner, showers, and our various after-school activities, there isn’t much free time for Amy to do anything else. We do sometimes get some extra minutes to play Who’s She?, which is a wonderful remake of Guess Who?, all based on influential women throughout history. We aren’t snuggling, but we are playing, learning, and enjoying our time together.
Sarah’s summer camp does some weekend retreats throughout the year, which can also be attended as a day-camper. If you are a day-camper this really just means going on Saturday, and that is what Sarah did all day yesterday. She had a wonderful time swimming, singing and dancing to the B52’s “Love Shack” for the talent show, and hanging out at the campfire. Carl picked her up at the end and said she was a little sad that she wasn’t staying overnight. This is extremely exciting because the point of doing the retreats, in addition to being fun on their own, was to hopefully build up Sarah’s away-from-us muscles to be able to do an overnight. The fact that she is now requesting to do an overnight for the next retreat is heart-filling and is a faster shift than I had been anticipating.
I have a huge appreciation for audio books in a way I didn’t before. I finished the recording for Watching Sarah Rise and am now going through each chapter listening for any word or sentence that needs to be redone. This is a serious process! My week was mainly filled with that and going to bookstores to give them my flyer and ask them to consider stocking my book (because I was given to understand that orders are placed four months prior to publication). I continue to learn that what I thought I understood about how all of this works, is maybe not actually the case for many of the bookstores I have set foot in. Each time requires courage but I keep reminding myself that I can do this, and that if Amy can go to middle school each day and deal with being brave and trying to speak up for herself, then I can go in a bookstore. Most places have been warm and welcoming and at least taken my flyer even if there are no guarantees about orders or stocking or scheduling a signing. At each place I always buy a book because I don’t feel like I can talk to them otherwise, which is perhaps untrue, but is how I feel. Anyway, at one place I didn’t have much time to browse so I went to the classics section and hastily grabbed a book that I haven’t read but want to read in my quest to read all of the classics. It was only after I got home and was talking to my mom that I realized the hilarity of my pick: The Sun Also Rises by Hemingway. Could I have picked a title closer to the Son-Rise Program unless it was a book about the program? Probably not.
May you get to the end of your day and have a moment of hilarity tap you on the shoulder. Lots of love to all of you.
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