November 27: Broken Buses and a Thanksgiving Extravaganza

Last Sunday Sarah had her piano recital and did a beautiful job, as always. And, as always, I felt a bit teary watching her. In the earliest days of wondering if she would ever crawl or talk or reach for a toy, who would have ever thought she would be up in front of a small crowd of people playing the piano?

Monday was The Day the Buses Broke. I have no idea what was going on that day to result in the ridiculousness we experienced. Sarah’s bus situation was as perfectly reliable as ever. We have THE most reliable driver ever this year. But Amy’s bus situation was another story. For her morning bus there is a Facebook chat group and the driver is part of it, informing us if there is a delay due to weather or traffic. So why the driver didn’t then post about her bus breaking down is beyond me. She later posted that she didn’t notify the group because a backup bus took over five minutes after the breakdown, transferring the students already on the bus and getting the remaining students on the route. Except… there must have been a significant delay because Amy and one of her friends came home after waiting in the cold for half an hour. It is possible that they were opening my door at the exact moment the replacement bus passed their stop. But it is also possible that because the driver and the bus company didn’t inform anyone of the change, the kids who were waiting wouldn’t have known to get on a differently numbered bus from usual. I don’t know. All I know is that Amy and her friend gave up after waiting in the cold for so long. I wasn’t able to drive them but luckily another parent was. Then…Amy’s afternoon bus is a different bus entirely from the morning bus. It is also always 20 or 30 minutes late no matter what, but we have gotten used to that. We figured that if she got home by 5pm as usual then she and Carl would have plenty of time to have dinner and get into costumes for the Star Wars movie they were going to see. What we didn’t expect was that the afternoon bus would break down too! Before even getting to Amy’s school. When a replacement arrived they had been waiting for an hour after dismissal. The only information coming to the parents was from those students with phones. No communication from the bus company or the school. When I contacted the bus company they said to complain to the school. When I contacted the school they said it was the fault of the bus company. After finally getting the kids, the bus driver then got lost! So Amy got home at 5:40! Luckily, another parent thought to go meet the bus at the stop because the crossing guard had gone home and it was dark and cars run the red light not infrequently. Sarah and I were swimming so I was out of the mix of possible helpers for any of the situation, but I was definitely in the mix of disgruntled parents. I understand that things go wrong, but I think the school and the bus company need to up their communication game. 

On Tuesday the busses all ran as expected, but ten minutes before the end of the Star Wars movie that Amy and Carl were seeing that night (they were seeing the original trilogy, now numbered 4,5, and 6)… the projector broke! So they had to come home to finish watching it. 

Getting Sarah out the door for her bus was more challenging than usual Monday and Tuesday. I’m not sure why, but she had more things that she felt like needed to happen before she finished getting ready for the day, with screams and upset if we said she needed to get ready first. I was glad she had no school on Wednesday. If things are difficult again this week then we will move her waking time earlier. In contrast, Amy has shifted her morning routine so she is truly ready before she does any extra things.

Thursday morning Carl and Amy did a one mile Turkey Trot downtown. Sarah and I stayed home. Then we had a wonderful Thanksgiving Extravaganza with Carl’s parents and sister and her partner. There was so much delicious food! We had six pies, but one of them was a bit of a failure. It was the one thing I had never made before and I tweaked the recipe to make it vegan. It was an attempt at a cranberry curd tart, but it was too tart and didn’t gel. The 2 pumpkin, 1 apple, 1 key lime made with avocado, and 1 chocolate mousse pie made with avocado were all delicious. Carl was absolutely stuffed after plates piled high with goodness so for dinner he had one Pringle and one peet swickle. When I was growing up, the traditional evening meal following the afternoon extravaganza was turkey sandwiches, Pringles potato chips, dill pickles, and sweet pickles (always called peet swickles). So that is the meal we have too.

We came up to our mountain house for the remainder of the Thanksgiving weekend, and it has been a lovely time of pajamas, snuggles, movies, the Great British Baking Show, and food. We watched “Spirited,” the music for which was partially written by someone who went to my high school and who had my dad as a third grade teacher. Although the person writing the music probably had nothing to do with the names of the characters, I’m sure he thought about how he had a teacher with the same name as one of the main characters: Mr. Briggs. It is really such a very small world. 

There has also been some kid screaming and upset this weekend, but that is par for the course. What was impressive yesterday was the post-yelling conversation to work through why Sarah and Amy had gotten upset about a zoo drawing they had been working on together. I think they are set to proceed today to finish it. Sarah is all into wearing her orange shirt that says “zoo” and has an elephant, a shark, and a jellyfish silk screened on the front. That was a shirt she made in kindergarten and it was huge on her then and fits perfectly now. She has a zoo themed blanket out here that she has been enjoying, and then yesterday Amy orchestrated them drawing a zoo on many sheets of paper taped together. Sarah also made Carl a small paper zoo shirt design to match her own. 

One night as Carl, Amy, and I were watching the Great British Baking show we heard Sarah strumming Carl’s guitar and singing, “Don’t put your junk in my backyard.” That is a song by someone else but I don’t remember whom. It was wonderful hearing Sarah belt it out so confidently. 

I don’t understand why three times this year I have been sitting or lying down and when I go to get up my left knee just doesn’t work anymore. It hurts to straighten it or put weight on it. This always resolves within a day or so, but um…? What is going on? It happened again this morning. I really don’t understand it at all and I don’t like it either. But at least I can move around again.

I hope you had wonderful Thanksgivings.

November 20: Snow, Swimming, and Habits

After Amy’s second class of cheerleading, which she hated just as much as the first, she was able to switch to an improv class that her best friend is in. She LOVES it!! Absolutely loves it.

Sarah’s first private swim lesson went well. She refused to get in the water until her teacher arrived, which affirmed my decision to hire someone rather than trying to take on that responsibility myself. Amy and I had a wonderful time swimming laps. Amy created many new strokes combining the leg movements from one standard stroke with the arm movements of another. Quite a challenge to my neural pathways. She also taught me the butterfly and had me do backstroke for the first time in almost forever. 

Sarah had dress-down days all week because I donated sufficient funds during her walk-a-thon fundraiser, as I always do. She insisted on wearing her corduroy pants for the first three days, but evidently her intense interest in her pants was problematic for her paying attention to other things at school. When I suggested that she wear her sweatpants for the remaining two days because that might help her have a better experience at school, she was willing and did in fact have better days. 

One night after Sarah took her bath, I was brushing her hair and she said, “whoa!” I asked why she said that. She said she felt dizzy and needed a bowl. I ran down to get one and returned to find her lying down on her bed. I was inwardly panicking that her mystery symptoms had returned after seeming to have abated. It may have been from having an empty stomach but with extra saliva in it due to her new aligners that she just got that day. Aligners are like retainers, but instead of just maintaining what braces have achieved, they take the place of braces and actually shift the teeth. Sarah just got hers and is already adept at brushing them and wearing them. But at first they felt weird and stimulated extra salivation. Anyway, after a few minutes her feeling yucky passed. She then had a lot of screaming to do because Amy was in the bathroom taking her shower, but I figured Sarah must have been feeling reasonably well to put such force behind her screams of protest. The remaining bit of concern was that her arm was shaking. She has had hand tremors for a while, but the arm seemed new. I asked her neurologist about it and apparently it could have been a side effect from weaning off of one of her anti-seizure meds rather recently. That also seemed to resolve by the next day. 

Yesterday morning Carl and Amy went to a movie theater to see the original Star Wars movie while eating cereal. The theater provided a cereal bar with many types of cereal and then showed cat videos before the movie, so Amy was in heaven. They will return Monday and Tuesday to see the next two movies. 

Sarah and I had a rough time yesterday. It was the one day that seems to occur every month where it would really be best if I was removed from contact with all other humans. Most days I have easy space to say all of the things she asks me to say, but not yesterday. Yesterday I resented the patterns and questions and repetition. I resented all of the whining about various things, but instead of letting it slide off me like I normally do, I yelled back or spoke harshly. So not a great day. I think my internal weather has shifted today, as it always does. 

When I notice my emotional habits, especially the ones that make me less kind to my nearest and dearest, I can feel so frustrated. Knowing that change is in fact possible, I get mad at myself and judge myself for not having made the changes yesterday. Thank goodness for being able to translate everything into the language of the Alexander Technique. With that I can so easily understand that we come by habits earnestly and honestly, that while we can change them in one moment, they may come back in another, and that it is all a process that lasts our whole life. With my physical habits I just notice them and let them go, unsurprised that they return repeatedly. So I’m aiming to have that level of understanding regarding my mental and emotional habits, to gently assess where I am and kindly nudge myself towards where I want to go.  

Lastly, it snowed! Nothing much stuck, but on Tuesday the flakes were huge and beautiful. 

November 13: Changes, Rainbows, and Boundaries

Thank you to all who reached out in support regarding my aunt. She died peacefully Tuesday evening. I’m so grateful that I got to see her first and say goodbye, and I’m also sad that she is gone. Sometimes you just know a person loves you even if you may not see each other often. I always knew she loved me and that meant a great deal. I think she knew that I loved her, but I didn’t ever specifically ask that question. I don’t think I ask that question of many people - except maybe my kids. I do ask them sometimes, “Do you know how much I love you?” They know the answer is to the moon and back or something similarly vast. On my drive home from seeing my aunt it rained off and on, but for one moment I saw a rainbow. I took that as a good sign.

We had our last swim lesson with the British Swim School on Monday. We had a wonderful 5 years with them and I highly recommend them to anyone (if your kid is younger than 13 or you want a class for adults). Tomorrow we have our first appointment with a private swim instructor for Sarah through Sunsational Swim School. Fingers crossed that there will be easy space for that to occur, since it is using the free swim time at a community pool, and for Amy and me to swim too.

On Wednesday my morning canceled so between talking to my (new to me) therapist and going to see my trainer at the gym, I went to Phipps Conservatory. I hadn’t been in years, though we are members. Since they have timed tickets for entry, that I didn’t know about, I had to wait for a bit. I went to the cafe and got a sandwich, which unfortunately turned out to be terrible. Usually I like their food, but this was just awful. I made myself eat it though because I knew I would need the energy later. Then I sat outside in the sun and worked on my book (rounding the bend towards finishing the 3rd and hopefully final draft!). Then I had twenty minutes to walk around in Phipps. It was a glorious twenty minutes and I intend to go back often. The air always feels healthy in there and smells so fresh. One bush had beautiful red flowers that looked like little lampshades. It is called The Biltmore Ballgown. 

Speaking of ballgowns… Amy had her first dance! It was just for 6th grade and, in her words, “It was EPIC!” They had pizza, snacks, games, costume accessories, and a photographer so you could get pictures of you and your friends. There was no dress code or requirement, just whatever people wanted to wear. Amy wore a sparkly sequined black dress over pastel mermaid-scale leggings and had a hair clip with pastel hair that seemed mermaid-ish.

Sarah has had a mild cold all week, but tested negative for covid and seemed to be her usual self all week so still attended school (masked). We also successfully made it to the hair salon for bang trims, though it seemed just as tenuous as the last time I tried (and failed) to get her to go. I explained that I was leaving to get Amy and go straight to get bang trims and so Sarah needed to come at that moment if she was to get a bang trim. She protested vehemently that she wanted to watch her show or nap first. Eventually she said she wanted to go, but she insisted on changing her clothes first, which took more time than I had allowed so I got impatient and anxious. 

I am getting better in many moments at seeing the difference between setting boundaries to take care of myself in a given interaction with Sarah versus trying to control her. Tuesday night I was having a lot of feelings after getting the news about my aunt, combined with several other things feeling weighty, so I was talking to Carl on the phone since he was away for work. He was listening to my tears and then Sarah, who had been in bed, started screaming for me. Since Carl was away she wanted me to come to bed to be next to her, as she sleeps in his spot if it is vacant. Instead of telling her not to scream (or perhaps after that didn’t work) I explained that I was going to finish my phone call and that she could scream or not, but I wasn’t going to come upstairs earlier because of her screaming. I felt calm and centered saying this and it also let Amy off the hook from trying to calm Sarah, which she was trying to do to be helpful. The challenge going forward is to continue to translate situations into seeing my own options instead of trying to force Sarah to be any certain way. When it works I feel good, clear, and empowered. The bang trim moment somehow straddled working and not working. I had the boundary that I was going to leave with or without her, but once I got her consent to accompany me then I didn’t have a way to enforce any boundary about timing, since I really wanted her to come. So this is a work in progress. 

Lots of love to all of you.

November 5: Halloween, Cheerleading, and a Dedication

This update is dedicated to my aunt J. who was recently placed in hospice care. In addition to reading my updates and cheering for our journey all along, she and my uncle financially supported the Sarah-Rise Program and made it feel easily possible to do whatever we thought could be most helpful for Sarah. My aunt always said it was the gift of freedom. That was so true and is still deeply appreciated. Tomorrow morning I’ll be on my way to see my aunt and uncle, hopefully in time, so that is why I’m sending this update out tonight. 

I am currently visiting my Dad and stepmother (Grammy and Granddad). I got to see my brother for an early birthday celebration for him, and my uncle (different side of the family from the one mentioned above) came for the celebration too. Today was a lovely day, even if it was unseasonably warm. Carl and the kids are having a Dad’s Weekend, during which the kids helped him change the bumper on his Jeep, lying down on the wheelie thing to see the underside of the car.

Halloween was wonderful. The weather was mild. This was the first year that we nearly ran out of candy to distribute, aside from the pile I set aside to trade for any items Sarah might need to swap because of her peanut allergy. It turned out that she is so aware of her allergy and what candy she can’t have that I didn’t need to change a single item of her bountiful haul. Both girls had to come back home part way through trick-or-treating to drop off their full plastic pumpkin baskets and get new bags or pumpkin baskets. Sarah was dressed as a musical note crocodile, with a large cardboard crocodile head, a soft tail, and a cardboard metronome that she wore around her neck. She wore musical note pajamas and musical note boots. Amy was Tinkerbell, Carl was Peter Pan, I was Wendy, Anna was Captain Hook and their partner was Smee. What was interesting was that many people had no idea who Carl and I were if we were solo, but if we were together then people instantly knew who we were. The crocodile trick or treated with Captain Hook and Smee while Tinkerbell went around with her friends, and Peter and Wendy stayed home to hand out candy.

I have solved the swimming situation! Hopefully our new arrangement will start in about a week. I found a place that sends teachers to you at your pool of choice and I learned that the place where the kids used to go for swim lessons actually is still open even though their swim lessons haven’t been happening there due to variable pool temperatures. So I will sign us up as members and Sarah will get a private lesson during the open swim time, and Amy and I will swim laps (assuming there is space for us). I am tentatively thrilled about this solution. Our Mondays will still be tight and have piano, picking up Amy from school, and going straight to swimming, but the location for swimming is better. 

Sarah insisted on wearing her 8th grade sweatshirt all week to school, even though technically it is only to be worn on Spirit Days or dress down days. I decided there are only so many battles I can fight and if the teachers want to make her take it off then she has a backup sweatshirt she could change into. But she has come home in the 8th grade sweatshirt every day so either she changes back into it before her bus ride or they haven’t been enforcing the rule. 

Sarah’s appetite is better than it was when it was really diminished, but I still don’t feel that we are back to normal. She mostly stays well (knock on wood) but today had some phlegmy time and said her belly wasn’t feeling the best. 

Amy was supposed to have her first 6th grade dance on Friday but it was postponed, much to her disappointment. She also had her first cheerleading class for Block Zero. Block Zero is a daily class time with fun options to choose from for each quarter. Students have a different Block Zero subject each day, but have those subjects for the quarter. Cheerleading was something she had been really really really looking forward to. And then it was not what she expected. They didn’t spend time doing handstands and cartwheels at all. There was running and jumping and clapping and it all felt a bit fast and maybe overwhelming. She felt like she didn’t fit in, in part because she was the only white student and in part because she didn’t know anyone aside from the teacher. That night she had may tears and feelings about not fitting in, but we also had a good conversation about that and how other people might also have such feelings sometimes.