December 25: Brrr!

Merry Christmas! Sarah’s favorite present is a shirt that says “off to the zoo” and has many zoo animals printed on the front. Amy’s favorite item is a stuffed animal black-footed cat. She was also excited to give Carl her creation of a book of pictures of Star Wars characters. On our Christmas Eve, she told me what she was most excited about was giving that gift. We all enjoyed a game that Carl found involving planting bamboo and having a panda eat it. Sarah has been especially into pandas lately so it is perfect. 

We had our present-opening morning on December 23 before heading to Florida. It isn’t quite the balmy warm atmosphere we were dreaming of, but we are appreciating that it is warmer than Pittsburgh. But, it is 30 here once you factor in the wind. We wear our winter coats and have adjusted our plans to include more indoor activities. So far we haven’t actually done much of anything, which is also great for a vacation. Tomorrow we plan to go to the Tampa zoo. You know what shirt Sarah will wear! 

Yesterday we put on our swimsuits, winter coats, and flip flops to get down to the outdoor hot tub. Carl, Sarah, and Amy did get their feet wet in the ocean. Carl and Amy braved the heated outdoor swimming pool, and all of us enjoyed the hot tub. At least for a little while. I had decided to stay in the water until one child wanted to go back to our condo but after many minutes with the cold spray blowing from the top of the water into my face, Carl suggested I could go inside if I wanted. My face was clearly not having a good time. I’m not sure if I will go in the water today, though my counterparts may. 

Sarah likes to go on short expeditions from our rental to the exit sign down the hall. The hall is outside so her ventures are quick. 

Today will be full of watching tv shows and movies, snuggling, reading, playing the panda board game, eating, and doing crosswords. 

I hope you are all snug and warm. 

December 18: Five Golden Watches!... And a Tennis Practice in the Snow

Yesterday I woke Amy earlier than she gets up for school because she had an appointment with an oral surgeon to remove two teeth. She and Sarah have both had issues with overcrowding and with baby teeth that have no grown-up tooth behind them to push them out of the way. The surgery was quick and easy, thanks in part to a pill to help Amy relax ahead of time, laughing gas, and novocaine. We were home before 8am and she was even allowed to eat right away. She was hardly sore at all. I gave her one dose of Motrin but that was it. 

I knew that Amy can wrap a present by herself, but yesterday I learned that Sarah can too. Completely of her own accord, she retrieved wrapping paper from the basement and sat down with scissors, tape, a marker for labeling her gifts, and went to town with wrapping. While there is room for refinement, the same could be said of anyone looking at my wrapping presentations. 

On Tuesday when Sarah got home from school, she seemed her usual happy self. I was therefore surprised to read the note from her OT saying that the session that day had been a real struggle. Sarah had been distracted by her watch and then seemingly wasn’t feeling well. When G came for his time with Sarah, Sarah launched into describing the tough part of her day. She had big feelings and was stomping, yelling, and crying. G did a beautiful job of witnessing and listening. I love it when the people who come to my home to be with Sarah respond as I would on my best days. What was puzzling was when I spoke with Sarah’s main teacher the next day. I had been led to believe by Sarah that the OT had taken Sarah’s watch away, so I was sure that was the reason for her big feelings and claiming to feel unwell. It turns out that Sarah gave her watch to the OT! She did so to try to help herself focus. She may have regretted it and wanted it back. Also, it turns out that if ever another kid is sick, then Sarah manifests the same thing for herself. Her teacher initially framed this as seeking attention, but I reframed it as Sarah being empathetic and having strong mirror neurons and a vivid imagination. 

There were multiple moments during the week, usually when I was trying to fix dinner, when Sarah suddenly desperately wanted a watch other than what she already has. She already has two watches and wears one on each wrist daily. One evening she found the old bands for the kid Fitbits (or some similar product) Carl got the girls years ago, that they never wore, and that eventually died from lack of use. But she found the band and really really really really wanted a Fitbit RIGHT NOWˆ!!! I did not handle that moment calmly. The one moment of levity was when I sternly demanded, “How many watches are you going to wear?!” Sarah paused in her upset and calmly answered, “Five.” Amy and I cracked up. Impressively, Sarah’s math was spot on because she knows I put two watches on her wishlist. I have no idea if she will get those watches. I hope so! The next day when Amy came home from school she made the grievous error of removing her own watch and putting it on the coffee table. Egad!! Sarah saw it and immediately wanted to put it on, which Amy did not want. I suggested Amy could put it out of sight, which she did, but still. Sarah was determined to have a watch just like Amy’s. This time as Sarah screamed I just washed dishes and sang a pleasant song and that helped me stay calm. It helped that I didn’t have a time deadline regarding dinner the way I did the first night. 

Friday night we watched the livestream Straight No Chaser concert. That is one of the best things to have come from the pandemic because Sarah loves their concerts, but would be overwhelmed if we were actually at the concert venue. Also, I now know that if they do a livestream again next year we actually have a full 24 hours in which to watch it, so we don’t have to stay up past Sarah’s bedtime to watch it. The best part of the concert was when SNC did a mash-up of “Thriller" and "Uptown Funk". "Uptown Funk" is Sarah’s current favorite song. It is what she wants to listen to as she has breakfast or takes her bath. My playlist goes on to other good dance songs which she also loves, but "Uptown Funk" is where it all begins. As soon as SNC started singing it Sarah was on her feet, imaginary microphone in hand, doing her dance moves and running all around with great glee. And then she was done and wanted to be done with the whole thing and go to bed. Amy stayed up for her favorite song which is the SNC "12 Days of Christmas", a wonderfully messed up, mashed up version of the song that brings in many other songs as the singers fumble their way through the original lyrics.

Because of Sarah’s love of zoos, when I made her bed I added a blanket one of my grandmothers made for me. It has a jungle print with lions and monkeys and other animals, but not some of Sarah’s favorites. Sarah was still thrilled, and pulled it up to her chin so she could pretend it was her hospital gown. Amy then grabbed a small crocodile, a small panda slipper, and a small tiger, adding them to the blanket so those animals could be present. She put the crocodile in the panda slipper and sang “Jingle Bells” except it was “Jingle Croc” and it chomped all the way.

I’m not sure why, but somehow for Sarah snow has become linked to the idea of walking to tennis practice. Keep in mind she has never played tennis in her life. Yesterday as the flurries fell, Sarah donned a winter hat, her musical note scarf, her sunglasses (of course), and her piano bag, heading out the door, ostensibly to go to tennis practice. She repeated this scenario often, leaving the house and then returning to tell us where she had been or where she was going. 

Wherever you are going, may you go with the same style and joy of Sarah attending pretend tennis practice in the snow.

December 11: Social Schedules and Practice Calls

We had a good week, culminating in the holiday party for the St Anthony School Program. Last year, Sarah’s Resource Room (includes multiple grades, but all kids that need a little extra help) performed Rudolph The Red Nosed Reindeer song, but this year it was a Resource Room from a different school who got to perform a song. Sarah’s friend performed and a good time was had by all. 

Amy had a busy day yesterday with a birthday party in the morning and a Girl Scout outing to see The Nutcracker in the afternoon. 

I’m away for the weekend so it has been Carl navigating all of the social activities and making sure everyone is where they need to be. Because sometimes one of both kids are on their own at home, Carl had the idea to practice having them call him from our home phone. He and Sarah practiced while Amy was out. Sarah is good at imagining so the scenario felt quite real to her. She called Carl to tell him she had hurt her knee. She was all teary calling. He then felt as if it was real and felt anxious as he hurried downstairs to her. They both needed some snuggles to calm their adrenaline that had spiked with the pretend. Amy and Olivia practiced making calls today. 

Soon Sarah will participate in auditions for her school musical. She’s been asking about the musical since Peter Pan ended so I’m thrilled that this is getting going for the year. 

I’ve been feeling appreciative of how playful and creative both kids are and how often that can work well for fun times together or as our whole family. 

December 4: Christmas Trees and Ball Pits

Sarah continues her love of zoos, often wearing her zoo shirt that she made in kindergarten. She recently found a picture of herself wearing the shirt 7 years ago. It looked like a dress! Now it fits her perfectly. She also likes to refer to herself as Baby Zoo.

Last weekend Carl had work to do and Sarah didn’t want to go out, so Amy and I got our Christmas tree. While I got help loading the tree on top of my car, I did the rest myself. For the first time in my life! I felt very proud of myself for getting it in the stand and in the house independently. In hindsight, part of my capability may be due to it being a smallish tree! Yesterday we decorated it and it looks earnest, if a bit scraggly. This was probably the most relaxing and least stressful decorating I can remember since before having kids. In past years I have wanted to control the unpacking of ornaments because I was worried about fragile ornaments breaking. This year I let the kids unpack everything and they did a wonderful job. They also didn’t need any help with hanging ornaments, whereas in past years Sarah needed some guidance. Nothing broke! We also couldn’t use all of our ornaments because of the small size of the tree. Also, how did Amy get so tall that she can nearly reach the top of the tree without help?!

It took me all morning to get the family room clear and tidy so that we had space for decorating the tree and spreading out the ornaments. As soon as the tree was done, Sarah asked for the ball pit to be brought up from the basement! So much for my clear room. And yet, what is a clear room for except to encourage playing with toys? Carl had the idea to use the large cardboard box that Sarah has been using as her boat. It is much bigger than the original frame and tarp that we used to use for the ball pit. The only hitch is that now Sarah doesn’t have her boat available for eating breakfast. Or we will just have to be extra creative for how to balance a plate and cup when in a ball pit. Then again, doesn't everyone have to figure out how to eat breakfast in a boat ball pit??

We all had dentist appointments and that went easily. Carl’s appointment was in the morning and the kids and I went in the afternoon. I love having the kids be grown up enough that I can leave them in the waiting room while I get my teeth cleaned without any concern about what they will get into. I suppose it has been that way with Amy for a while, but it is newer this year for me to relax my grip on anxiety about leaving Sarah on her own in various situations. On Tuesday we went to get some bloodwork done for Sarah and while I checked her in, she stayed near the elevators. I felt a tiny bit worried that she would decide to ride an elevator and then I might have a serious issue with finding her. I needn’t have worried. She loved watching the people coming and going. She especially loved watching the nurse who was there to help patients know where to go. She likes to pretend that she is Nurse House or Nurse Panda, directing people about where to go. 

Friday night, Carl and I went to an album release party for The Beautiful Mistakes. Not only was that a wonderful night out for us, but the kids had a special play night with Sc, who used to come regularly for Sarah-Rise sessions. They decorated gingerbread houses and Sarah has a new picture of a sad panda wearing musical notes. I love having sitters who are artists so I never know what creations we will come home to.

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. 

October 30: Tricksters and Pumpkins

I know I haven’t been able to find all lost things, but the number of times I have found Sarah’s lost rings and the manner in which I have found them astounds me. Yesterday she lost a favorite ring while playing in a large pile of leaves at our house. I found the ring after sifting through many handfuls of leaves. 

Yesterday was a glorious day in terms of weather and leaf color. We ate lunch outside and were even too warm in sweaters. Later we met a friend who does our annual family photo shoot. The kids were more amenable to this than usual, including playing in more leaves and throwing leaves at each other so that both have little pieces of leaves mixed in their hair. After the photo shoot we went to Millie’s Ice Cream Parlor for the first time in ages. Millie’s has delicious ice cream, including many dairy-free options, which is how I’m trying to skew things for Sarah lately. When we got home we carved pumpkins, and Amy even cleaned most of the seeds out of hers despite her dislike of such a task. Amy carved a witch hat and stars, Sarah drew many things on her pumpkin in Sharpie but only cut out a small rectangular-ish shape. She says hers is a musical note. Carl did a truck face, perhaps for a robot truck, and I did a happy face.

Sarah was an absolute trickster on Tuesday. Her regular teacher was not at school but got a call from the assistant teachers and thus called me. Apparently Sarah wasn’t feeling well and another kid had also gone home sick so they wondered if something was going around. I quickly canceled my upcoming appointment and went to get Sarah, feeling concerned if she was sick because we have been having such a good run of her being well (knock on wood). Well… as it turned out… Sarah was totally fine! I do know she has strong mirror neurons so when she saw another kid legitimately being sick, she probably emulated all of the symptoms well. We know she also knows all of the things to say when sick or trying to get out of something by being sick. I could see a glimmer in her eye even as we walked to the car. She proceeded to be happy and bubbly for the ride home and then joyously ran down the block after I parked, toting her new library book for which she had been eagerly waiting. Once at home she continued to play happily, easily ate her lunch, and then had a nap. I have never been happier to have been tricked. I was so relieved that she was actually well and she was in such fine form that I delighted in her presence in the house. I almost wanted to shake her hand for her achievement. Instead I chose not to point out anything about her actually being well. 

Sarah's newest favorite book as of Friday is Does A Kangaroo Have A Mother Too? By Eric Carle. This means she likes to ask us repeatedly if a bear has a mother too, to which we reply quoting the book, “Yes, a bear has a mother, just like me and you.” She proceeds to ask about other animals or creations such as “Does Baby All Done have a mother too?"

Having checked with Sarah’s doctors, it seems that her thyroid level is only a little low and the best course of action is just to check it again in 6 weeks. We met with an allergist who ordered bloodwork but I will wait 6 weeks so we can get everything done at once. 

I am still searching for a new swimming lesson and venue, but now for both kids. I had thought we had a new solution figured out for Amy where she would practice with a swim team but without the commitment of a certain number of practices. Thursday was her first official practice that wasn’t just the coach getting to know everyone a little and sorting kids into groups. Amy did not like the practice at all. She loves swimming and loves the water, but wants to go more at her own pace and not be driven to go fast, fast, fast, with hardly any time to rest in between laps. So. Good to know before we needed to sign any paperwork. I’m so glad she knows herself so well. As she said, if she is going to pursue her passions then she wants it to be fun. Yes to that! It has been many days since I sent out two inquiries regarding possible lesson venues for Sarah and no one has gotten back to my emails or calls. Why do places have web forms if they don’t work? And why voicemail if it doesn’t work? I will call again. My dream scenario would be a pool with private lessons for Sarah and lap lanes available so Amy and I could swim while Sarah has her lesson. 

Fingers crossed for good weather tomorrow, specifically from 5pm-7pm. 

October 23: Digging in of Heels and Deja Vu

From the recent concerns about Sarah’s lack of appetite and weight loss to the current issue of her being “pausenated” (constipated) we are having a serious case of deja poo. Sigh. I never thought we would be dealing with these issues again and here we are. The good news is Sarah’s appetite is definitely better even if not quite back to what it used to be. We also saw a GI doctor and got lots of bloodwork for that doctor and for Sarah’s neurologist. I haven’t heard from either doctor about their interpretation of the results but I can tell from looking at the results myself that her TSH is low. That means her thyroid needs some assistance. Being hypothyroid can contribute to fatigue, which Sarah definitely seems to have been dealing with for many months. Thyroid issues have run in my family for many generations so this is perhaps not a huge surprise. 

Otherwise, Sarah did have another good week overall in terms of her health and happiness and school attendance. Amy had a good week too. She went to her first swim practice for her new swim program. It was loud and a bit overwhelming (for me) and was mainly just assessing the kids for what level they should be in, but it was still a good experience. And we learned that practice starts 15 minutes later than we originally thought and is a shorter drive than we thought, so that makes the whole thing easier for us and in terms of Carl getting home to be with Sarah. What was not great was learning that for sure I need to find a new swim situation for Sarah because her place will not allow her to continue past the end of the year. They stop their kid program at age 13 and just didn’t realize that Sarah had aged past that. Despite making an exception for nearly 3 years, they say that they absolutely cannot continue making an exception. The private lessons they offer are too far away. And they say that she wouldn’t really fit with the adult class because there is less supervision. You mean that a 15 year old with special needs wouldn’t fit with the grown-up class?! Astonishing! GRRR. Anyway, I’m trying to let go of my grumbles and to just move forward to finding her a new situation. I have emailed two places but haven’t heard back yet. I also continue to wait to get an email back from one of Amy’s teachers and am ever more frustrated that this seems to be an impossibility. Why make it possible to email a teacher if they won’t write back? 

Amy’s school had a fall festival - the first since before the pandemic - and she loved it. Our timing only made it possible to stay for half an hour and Amy was very upset to not be able to stay longer. Now I know for next year to prioritize attending for the whole time. In terms of other events from the week, thrice I planned for Sarah to go somewhere and thrice she dug in her heels and refused to go. I had arranged for the kids to get their bangs trimmed and Sarah absolutely would not go. I don’t know why, since normally that is something she enjoys. When Amy and I returned, Sarah was downstairs saying she wanted to go. But, nope. That ship had sailed. So now her bangs are still almost in her eyes. But the only way for me not to be too mad about the situation was to decide I won’t make a separate appointment for Sarah. She will have to wait until Amy needs her bangs trimmed again or Sarah can let me trim her bangs myself. Then, at the fall festival, Sarah didn’t want to get out of the car. So she and Carl stayed in the car while Amy and I went to the festival. Yesterday, we wanted to go for a walk to a beautiful outlook point in the woods and Sarah did NOT want to go. That wasn’t a surprise because she basically never wants to go for such walks. Still, I wish we could do short hikes as a family more easily. Last Sunday Carl and Amy went on a hike to a waterfall and the whole experience looked magical, with fallen logs creating bridges to traverse. Yesterday there were no fallen logs but Carl and Amy had fun with a water bottle duel.

After the bang-trim that wasn’t, we did have a nice dinner with Grandma and Grandpa at our house. Now, this weekend we have Mom-Mom and Pop-Pop visiting and that is lovely. It has been many months since we saw them in person. Carl and Mom-Mom played duets of the baritone horn and flute, as they often do during visits. Sarah decided to accompany them on the piano and actually did a notable (ahem) job of keeping time. Amy dressed as Tinkerbell and danced and cartwheeled all around the room while the music played. Sarah also enjoyed trying to play the baritone horn, making the sounds with her voice instead of the force of her breath. 

Lots of love to all of you.

October 16: Roaring Tigers and "Bamboo" Juice

Due to Sarah’s notably decreased appetite, we stopped the Prilosec (for acid reflux) and Allegra (for seasonal allergies) for Sarah (with the blessing of the pediatrician even though she didn’t think that was the issue). We reduced the Oxcarbazepine (for seizures; under the guidance of her neurologist to slowly wean off of it). We stopped the Miralax (for constipation) because it seemed to exacerbate some of the issues of the present moment. Sarah’s appetite maybe increased a slight bit, but it was hard to tell at the beginning of the week. The bigger change was to what foods I offered and when, as I will explain soon. 

On Sunday we learned a lesson that we probably could have learned in the past but I refused to really take it in because I so wanted Sarah to be able to enjoy going to a show downtown. Nope. We went to Frozen and as soon as we arrived Sarah was protesting and saying it was scary. This was before the show even started. So part way through the first act, Carl took her out and they had a better time exploring the venue aside from the performance space. After intermission Sarah was still unhappy being there in general so Carl headed out to take her home. Instead they found a large art installation that she enjoyed playing in and they had quiet time in the sun until Amy and I were done seeing the whole performance, which was wonderful! Amy was thrilled with the whole experience. And now we know that for future shows we should just have one parent take Amy and the other can stay home with Sarah. 

Monday morning, Sarah had a case of the Monday Morning Blehs. She protested vehemently about going to school, naming all of her physical ailments in a list that was a little too complete and detailed. Still, I questioned what we should do. Carl believed that she actually was well and just didn’t want to go to school. It took both of us being creative with snuggles, tiger roars, Carl suggesting they get dressed together for their days, and me driving Sarah to school… but she got to school and had a good day. I then heard from the pediatrician that they were able to get a GI visit scheduled for this coming Tuesday. After noting how Sarah was not eating well in recent weeks and the struggle of the morning, I felt like that appointment could not arrive soon enough. Tuesday morning was easier and she got ready for school easily. I made donuts for breakfast and she thus ate a bigger breakfast than she had in at least a week or two. She ate almost all of a donut! The homemade ones are smaller than typical donuts, but still. This was way more than one cracker. 

I had time to run some errands on Tuesday and reached back in time for my previously honed skills of finding higher calorie preferred foods to get Sarah to eat. I never thought I would be in that mode again. But, I think it worked to remind her body what it was to eat enough calories. I got some of her favorite Silk yogurt and some Naked Green Juice. I stocked up on some chocolate pudding and ice cream sandwiches made with non-dairy ice cream. Every day when she came home from school, instead of asking if she wanted a snack and accepting her “no,” I didn’t ask. I just brought up an ice cream sandwich, a pudding, and a bottle of green juice. Since she likes pretending to be a tiger who roars and eats bamboo (and loves saying “Tigers love to eat bamboo!”) I said it was a bamboo snack and bamboo juice. She usually ate one or both snacks and drank the whole green juice!! That was great for hydration and calories. Her energy level was notably better all week. She got ready easily every day for school that wasn’t Monday. She even collected what clothes she would need and brought them into my room so we could get dressed and roar together. I made donuts every morning or offered left-over donuts. She still napped after school most days, but didn’t talk about being tired all the time. She didn’t talk about phlegm or acid reflux. She was happy. This was one of the best weeks we have had in a long time. 

I finally reached out to the assistant teacher about getting the homework that Amy needed and got a response right away. Meanwhile, we still haven’t gotten a response from the main teacher. But, Amy has finally been able to do the assignment that she has needed to do for weeks. Phew!

Amy and I attended an orientation about a new swim program we hope will work for her. I’m actually a tiny bit on the fence about hoping it works. The actual program sounds amazing. She gets to practice with a swim team but doesn’t have to meet the minimum practice requirement and won’t participate in meets except maybe occasionally. The only issue is that it is a 30 minute drive during rush hour and she needs to be out by the pool and ready five minutes before practice starts. So to make sure we have time and aren’t rushed, we are going to leave home an hour before practice starts. Then it is an hour long. And then it takes about 20 minutes to get home. We won’t get home until 7:30, so that is later than our usual dinner time. This means making adjustments about Carl’s schedule so that Sarah isn’t on her own for too long. I don’t want to drag her along for the whole thing. If Amy likes this new program then it also means she will stop attending the British Swim School and I feel sad about that end of an era. I feel sad that it won’t be both girls going to swim lessons at the same time. All that said, I do hope Amy likes the SwimFit as two of her friends from past school years may be there too, depending on which days they attend practice. 

Carl ordered something that came in a large box. Rather than recycling the box, we put it in the family room and Sarah has loved sitting in it, pretending it is a boat. She also loved tossing leaves in the air yesterday as it was a gorgeous fall day. I went for a walk that was absolutely stunningly beautiful. And then after several failed attempts to get Sarah to join us for a drive, Carl, Amy, and I went on a drive by ourselves. In the jeep. With no roof or windows. That was a weird experience. Carl and I both felt frustrated by Sarah’s complete refusal to even consider going. It felt akin to the times we have wanted to go on a family hike and she absolutely will not go. As I have noted many times in my life, I have a hard time dealing gracefully with things that just don’t make sense to me. I may be occasionally getting better where Sarah is concerned, but only about gleefully saying, “tigers love to eat bamboo” because that has no consequence so it doesn’t matter if it makes sense. 

When Sarah got off the bus Friday afternoon she asked me why her hands felt tingly. Ack. I don’t know. Such things do not help my adrenal glands remain calm. Neither does her saying she feels weak, woozy, and her acid reflux this morning. However, last night we did do an experiment of ordering pizza with gluten and dairy. Prior to that, most of her food for the week didn’t have either (although the ice cream sandwiches do have gluten but they are small). So I don’t know if Sarah’s symptoms this morning are a delayed response to last night’s dinner or not. I’m still glad to have the GI appointment. I wish this all was a little more clear. But I’m still grateful that we a good week. 

Anyway, I hope you are enjoying the fall foliage and are as well as can be. 

October 9: Appointments and Appetite (or Lack-Thereof)

On Monday Carl was working from home since Amy was home sick and I had clients. When it was time to fix lunch he went to leave his laundry room home office only to discover that the doorknob no longer impacted the latch in any way. So even though that door doesn’t have a lock, he was locked in! He had Amy slide a screw driver under the door, only to realize that the screws for the knob plate were all on Amy’s side of things and that was not the moment for a lesson in tool use. Luckily his dad was available to come over to solve the problem and set him free.

Amy is doing well and is finally better from whatever bug she had. She still has plenty of homework to attend to and for some of it has questions for her teachers. We have felt a bit frustrated at the lack of email responsiveness given that her teachers expect that she checks her email daily but they don’t seem to check theirs. I was able to solve one problem by posting a question to the Facebook group for parents at her school and that was a good reminder that when we don’t know something we can expand our queries beyond Amy’s closest friends. 

Sarah was home sick on Thursday, with her sudden onset combination of symptoms occurring as she finished her miniscule breakfast. In addition to that we realized (after a follow-up doctor’s appointment) that her appetite was severely curtailed and had been decreasing over the past week (at least). I felt silly that I hadn’t noted enough of a problem until the day after the doctor’s appointment so then I had to call and now we go back again this coming Tuesday. She has lost at least 2 or 3 pounds in the last month and now barely eats at her meals. For breakfast she has her meds and not much else. For lunch she has chips and hummus or part of a bagel with cream cheese, but is never eating her fruit/veggie sides or her treat, which is unusual. And her dinners have been quite small and then she says she is full and doesn’t even ask for a treat. While the doctor doesn’t think it could be the Prilosec or Allegra, Carl and I opted to take her off of both for a bit and see what happens. If we realize she needs an allergy med we will go back to Claritin or Zyrtec. Yesterday we maybe noticed a slight increase in her appetite. It is all so weird to be concerned about her in this way again. When she was very young she was diagnosed as Failure to Thrive and we stressed a ton over getting enough calories in her. That memory has happily been far in the rear view mirror for years. I know the current situation is different, but it is still stressful. The pediatrician is going to call to get us a GI appointment this week and thinks an endoscopy will be in order. It is hard to remain relaxed about this and not panic that there is something terribly wrong (eg cancer, an ulcer, low motility) and that she will die or it will impact her for her entire life. Just having her eat a tiny bit better yesterday did ease my fears and dire predictions a bit. 

We have also started weaning Sarah off one of her anti-seizure meds, realizing it doesn’t make sense to wait to do so until we figure out the GI stuff because that could take a long time. While I’m excited to be reducing how many meds she has daily, I do feel a bit more nervous every night that she will have a seizure. 

Sarah has shifted slightly away from her love of crocodiles and back to her love of pandas. She likes to say “panda panda bear, in your hair” and to call me Mama Panda. Last night half way through the night she came into my bedroom and asked to snuggle with me, so Carl went to her bed and she took his place. She snuggled up close and reached for my hand and said we were holding panda paws. She has also been wearing a spider ring and likes to put it on people while we sing, “ there’s a spider on my ___ on my ___.” Recently the spider was on my nose!

Appointments galore these days! We went to Sarah’s orthodontist and in about 5 weeks she will start wearing retainers on her top and bottom teeth all the time in lieu of braces. Technology has changed tremendously even since Amy had her first round of braces. Sarah didn’t have to have the clay-like mold made of her mouth. Instead they took a detailed video of her teeth and made a model on the computer that the orthodontist can use to create a model of how he wants things to be and to make the retainers to gradually shift towards the goal. Amy has her orthodontist appointment tomorrow and we will see if it is time for her to go through the same process or if we wait longer. 

Speaking of appointments, I also saw my new headache doctor and liked her and the practice a lot. Mainly I like the flexibility that if I’m in a bad way then anyone can see me and give me injections. It was also helpful to learn that I’m not alone in my pattern of how I deal with the clusters when they happen. Apparently many cluster patients follow the same pattern of “it’s fine, I can handle this, I’m figuring out ways to handle it, I’m fine, oh wait, I’m totally not ok and really need major help yesterday.”

Yesterday we went to Simmon’s Farm to get pumpkins and play. I had an Alexander class to attend so only got to be at the pumpkin farm for lunch but I’m still glad I went. Carl and the girls stayed for a few more hours playing and enjoying the day. Sarah didn’t feel sick and didn’t need a nap! That was huge.

Any prayers and good visions regarding Sarah and her health are most welcome and appreciated. 

October 2: Screaming, Swimming, and Sunglasses

First, I want to follow up on the whole bathroom screaming situation - when Sarah screams and pounds on the door if Amy is in the bathroom. When I last wrote about it it had seemingly miraculously stopped after Carl, Amy, and I decided we would ignore it completely if it happened. Well. I knew the cessation might just have been a coincidence as that happens sometimes anyway. Sure enough, Sarah certainly has more screams and door pounding in her and has let it out in spades over this past week. It does still help me stay calm to know that there is nothing I need to do about it. 

Sarah has also had some screamy moments at school. When her teacher called to tell me about Friday’s screaming episode she explained how she asked what grade Sarah was in, while telling Sarah she would just ignore Sarah while she screamed. I asserted that I didn’t think referencing a grade or age helps Sarah and might add shame to her already struggling self. After all, I’m 45 and if someone were to remind me of that after I lost it emotionally then I would just feel even worse about myself than I already felt. Her teacher understood and we brainstormed other ideas for helping Sarah when she gets overloaded. Because I do think it is Sarah reaching overload rather than seeking attention. As Sarah has been reviving some of her old sign language lately, I looked up the sign for “overwhelm” and taught Sarah and sent a video to her teacher. That way, hopefully, if Sarah is overloaded she can do the sign if she can’t find the words. Or if she has the words, I told Sarah she can ask to just sit quietly at her desk. I ordered some of her favorite books so she can have copies at school to help her carve out a quiet niche and maybe regroup.

Sarah has continued wanting to eat on her own, usually now opting to be in her room with the door shut, “for privacy” as she tells me. The only tricky thing with this arrangement is that she easily gets distracted during meals regardless of where she is, and stops eating to play or read a book. I need to be able to know where she is in her meal progress and give nudges to make sure she has her prescription meds. On school mornings I need to make sure she finishes in time to get dressed in time for the bus. This week she did in fact attend school five full days in a row! A first for the year. The morning bus started coming five minutes earlier than even it’s usual 6:58am time, and every day but Friday Sarah was still upstairs getting ready when the bus honked to signal its arrival. Friday was a dress-down day for a walkathon so Sarah was more excited to get dressed and was downstairs with her shoes on when the bus arrived. She had also woken up half an hour earlier than usual on Friday morning so I’m sure that helped too.

While I’m used to Amy going into her room to hang out on her own, having Sarah want to do that much more often than usual instead of wanting to snuggle with me threw me for a loop. I wondered why I ever didn’t want to do “chirp chirp” with her. Now I missed her and was slightly worried about how solitary she seemed to want to be. I realized that a lot of my interaction over some weeks mainly involved judgement and frustration from me towards her. So is it really any surprise she wouldn’t want to be around that? Now I’m more in a mode of appreciating any time she wants to hang out with me, no matter what we are talking about. I remind myself that it’s ok if things she says don’t make sense. Most days after school she naps if she can and I started napping with her so at least we had that time together. I feel like that has helped us get back into an amicable connection. She even ate dinner with Amy and me a couple of times during the week. It helped that I bought Halloween candles so one night even though she planned to eat in her room, I set the table with her plate and asked her to help light the candles. She then sat down and started to eat. When she asked about going to her room I asked if she could stay but Amy and I could talk only with each other and pretend she wasn’t there. That was acceptable to her and we ended up talking with her anyway. 

I feel like in one week I went from often feeling like I wanted more time to do my own things to suddenly feeling a bit of an empty nest syndrome and wanting to hang out with my kids if they will let me. 

Thursday night Amy realized she needed to catch up on a lot of school work and had many panicked tears. I assured her that even if she didn’t catch up on any of the work, people would all still know what a thoughtful, bright, kind, creative, loving person she is. And that it wouldn’t change how much Carl and I love her from her ear tips to her toenails. She was able to laugh a little and breathe a little and we looked through each item she had to do. She finished most of them and felt much better about it all as she went to school the next day.

Sarah had her first swim lesson as a Turtle 2. It went well and it was so different seeing her in goggles. I got a call from her swim school saying that they only just realized she is 15 and that technically their programs for kids stop when kids are 13. I pushed back because she is so clearly still a kid and fits well with the kid classes. I don’t understand why they can’t just look at her specific situation instead of going by a general policy. I’m waiting to hear if they will make an exception for her, but at least they are allowing her to continue while they make up their mind. If they don’t allow her to continue as a kid then I can sign her up with them for adult lessons but then there aren’t the fun caps and animal designations. 

Sarah has been having fun pretending to be Mrs. Potato head from Toy Story 3 in which she temporarily loses an eye. One day I came back from a short errand to find Sarah wearing a top hat and sunglasses and claiming to be Mrs. Potato Head. Yesterday she often wore a striped baseball hat and sunglasses, telling me she was going to the pool with Granddad. I love how I never know what to expect about how my kids will be dressed or who they are pretending to be.

Amy and I dyed her hair on Monday with purple in the strips of hair just next to her head. I don’t understand what it is about her hair but it does not hold the dye the way we expect. It washes out after one wash instead of lasting for a month. So Thursday night in addition to the extra homework we did the dye one more time since her picture day was on Friday. She did have lovely purple framing her face for Friday morning. My purple is nearly gone, also not really lasting the month I expected, but that is ok.

Sarah and I came up with a song for bedtime, to the tune of “Summertime” from Porgy and Bess. When she and Amy were little I used to sing, “Diaper time, and the livin is easy” but I always had my lyrics say it was ok to cry, where the original song says not to cry. Our new song, which Sarah belts out loudly and clearly, is

Bedtime and the livin’ is easy

Fish are snoozing

And the moon is high

The lights are low 

And the clock is ticking

So come on baby

Close your eyes

Amy isn’t feeling the best today. Last night she was supposed to have a sleepover but ended up needing to come home because of feeling sick. So any good vibes are welcome. She is still sleeping now.

I hope you are all well. 

September 25: The Craziest Week Yet, But I Did Remember To Wear A Shirt

This has been one of the craziest weeks I can remember.

Sarah has yet to attend school for a full week since school started at the end of August. This week she missed two days in full and one partially. I kept her home on Monday because, though her covid test was negative, she was quite congested. She took two long naps, which is not unusual for her on a weekend or day off, but did make it seem like I made the right decision to keep her home. The naps seem to have fueled her for a wonderful afternoon. She absolutely rocked her virtual piano lesson, including playing a new piece before her teacher could even talk it through with her. Then in swimming she moved up to Turtle 2! She had been a Turtle 1 for three years and five months. It’s not like Monday’s lesson was THE lesson to make the difference, but it was still monumental. I was all teary when her teacher told me she was moving up. 

She went to school on Tuesday, didn’t nap at all when she came home, and had tons of energy while playing with Gregory. 

Wednesday seemed fine until Sarah was getting dressed and she suddenly wasn’t feeling well in her customary way of belly/phlegm/headache. What is so difficult with those bouts of not feeling well is that sometimes they wipe her out for a day and other times she moves past them within an hour. I almost kept her home but she really wanted to go on the bus. But I wasn’t surprised to get a call from her teacher saying she wasn’t feeling well and that the teacher would give her Advil and see if it would help. I knew I might get another call. I went to feed a friend’s cats. When I came home I heard Amy crying hard and ran up to find out what was the matter. One of her besties tested positive for covid. Out came a covid test for Amy. Negative. Amy got her sad out and left to get her bus (her new extra early bus!). I hopped in the shower for a quick rinse off before going to meet a friend. While in the shower, my phone rang. I assumed it would be Sarah’s teacher again. Nope! It was a robo-call from Amy’s school saying that the power was unexpectedly out at the middle school and to please pick up my child from school immediately. I knew she hadn’t even yet arrived at her school! Within a minute, with me still wrapped in a towel, I got the anticipated call from Sarah’s teacher saying she wasn’t bouncing back into feeling good and I should come get her. Huh. Keep in mind Carl is still away.  Sarah and Amy’s schools are each 20 minutes away from home, but in opposite directions. Luckily, as I hastily threw on some pants, I got a text from a friend whose kid also goes to Amy’s school, offering to get her. Phew. One problem solved. Except Amy doesn’t have a phone, so how to tell her? I asked the friend to tell her kid to tell Amy what was happening. I didn’t realize that message would be conveyed across seats in a loud bus, so Amy didn’t actually know what was going on. Anyway, back at home, as I called Amy’s school to tell them how she would be collected, I started to head towards the stairs so I could be on my way to get Sarah. Then I realized I was only half dressed and had forgotten a shirt! Details, details. So, back to get a shirt. Then out the door to get Sarah. As I was driving, a call came from a name and number I didn’t recognize. Luckily I decided to pick up. 

After a slight pause I heard Amy’s slightly quavery voice say, “Mom?… There is no power here so parents have to come pick us up.”

“Sweetheart! You will be going home with ____. I have to go get Sarah from school because she’s really feeling sick. You might get home a few minutes before we do.”

Amy evidently was then taken down to be with the seventh graders, since that is where the friend she was going home with was. She felt out of place with all of the bigger kids, only one of whom she knew. Her morning all felt a bit scary and overwhelming. I can only imagine the chaos of needing to manage sending home all of the kids as soon as they arrived. Luckily the wait was short and Amy and her friend had a good ride home together.  Sarah and I got home just a little after Amy did. Sarah then slept until 1pm before she bounced back to health, asking for lunch and seeming like her bubbly self. 

Thursday was picture day for Sarah and she started to feel a little off again as she was about to get on the bus. F#(&Y*! What to do? I asked if she wanted to stay home, and she said yes and then said no in rapid succession. A common and confusing moment of dual answers. She got on the bus. I worried that I had made the wrong decision, but I did have my father-in-law (newly back in town) on call so I could still go to work even if Sarah needed to come home. I heard a little later from Sarah’s teacher that she was happy and well. You can see how different the two days were and yet how similar at the start and thus how hard to make a decision about an appropriate course of action regarding school. Amy’s school still had no power, but she was going to a friend’s house for the day.  I could still see my clients later in the day. We went together to check the friend’s cats that I’ve been caring for. On the way home I noticed Amy seemed a little snerfly. We did another covid test and this one was positive. Darn it all! So… no more going to a friend’s house. And now I had to see what my clients wanted to do. I tested negative and since I had covid within the past 90 days I’m clear to still be out and about if masked. One client opted to reschedule and the other to come in, which was fine because Amy is ok on her own for a bit and she didn’t feel sick aside from the runny nose. She also had a muscle (probably gluteus medius or TFL) hurting her a lot so I had worked on her some but she was lying low compared to her normal cartwheeling handstanding self. Anywho, I also now had to inform Sarah’s teacher about Amy’s covid status and see what she wanted me to do. It being picture day complicated matters because, although there is a backup picture day, I didn’t want to gamble that Sarah would be well on that day. By the time Sarah’s teacher called me I was about to leave to go see my one client, so we decided Sarah would just come home as usual on the bus but would stay home Friday to be on the safe side. Friday was also when the other 8th graders would be on a field trip Sarah wouldn’t be joining anyway because it was to a school that doesn’t have the St. Anthony School program, which is her program. Sarah has continued to test negative for covid. 

So. Now what? I was supposed to teach a 4 hour continuing education class on the Alexander Technique on Friday morning!! But with Amy having covid I didn’t feel like I could ask anyone to babysit. I could have asked another AT teacher to cover for me, but this class is my class. It’s not the same as regular classes at the massage school where any of the AT teachers on staff can swap in when needed and the class format is already determined. This one is my baby and I wanted to teach it! Amy said she and Sarah would be ok on their own. I had my doubts because sometimes even when I leave for 15 minutes they get into a fight. But, Sarah has wanted to be quite solitary when at home lately… And she does love technology…. And Amy agreed to do all she could to keep the peace between them, even if that meant not doing what she wanted to do and giving Sarah preference in all things. I told her I would pay her for such accommodation. Thus it was that on Friday morning, with some trepidation, I left my children alone for 5 hours!! That was a first. Amy has been on her own for a couple of hours and Sarah on her own for maybe an hour tops. Together I’ve left them for maybe 30 minutes at most. And yet, it all went well. They watched their shows. Sarah napped. They ate the lunches I packed and left in the fridge. All was peaceful and well. And my class went wonderfully!!

Sarah often asks me to leave and wants to eat meals on her own and be alone in her room with her books or technology. She even often wants to nap on her own. Oh why did I ever resent it when she used to frequently want to snuggle and do “chirp chirp, crocodile, crocodile” exchanges?! Now I feel rather bereft that it seems like she doesn’t want to spend time with me. That is hard on my heart. I have cried a lot. And yet I also am trying to appreciate that maybe this is an appropriate growing up stage for a 15 year old. She didn’t even spend time with Anna on Wednesday during the 3 hours Anna was babysitting! That was highly unusual. She is also seeming more tired than usual and I’ve been working to get her to drink more water. Some days she barely has anything to drink. She used to like gatorade but even that doesn’t seem to do it anymore. So I’ve started taking water with me whenever it is a moment to transition away from technology or I’m just checking in. I ask her to take a few sips. Yesterday I happened to say, “Yeah-ya” in a dramatic way after one of her sips and she cracked up laughing. So now I say that every time she takes a drink. Today she is drinking a bit more water each time with a bit less complaining. 

Sarah has been reviving signs that she used to know when she communicated primarily in sign language. Yesterday she kept asking me to make the sign for “all done” but today she tells me she doesn’t like that sign and doesn’t want to do it, and that is without my signing or saying it. Puzzling. 

Amy still seems to be feeling fine and her muscle isn’t bothering her anymore. We have been watching many episodes of the Great British Baking show and are thoroughly addicted. It is really lovely snuggling on the couch even while masked, and watching the show together. One afternoon Amy was inspired to bake and made delicious cake pops almost entirely by herself. She will be home Monday and Tuesday, but is cleared by the school nurse to go back on Wednesday. She would have been home anyway on Monday because her school is closed for Rosh Hashanah. 

I have rounded the bend on my book about Sarah-Rise and have started working on the 3rd draft! Making all of the changes from the first draft into the second draft felt like turning a truck without power steering. This time the changes should be smaller, but it still feels like serious work. But oh my goodness! What an exciting place to be. I am torn between an impatience to get it finished and out in the world, dreaming of it being a best seller, and absolutely terrified that this is a terrible idea to publish it at all and what am I thinking?!

Carl finished the BC Bike Race (British Columbia Bike Race). It was an immense undertaking and a huge physical effort and he made it, with heart strings hurting for his friend in whose honor he rode. At the end he received an extra finishing award because the race people knew that he was really riding for two.

And to cap things off for this full week, yesterday a deer accidentally leaped into a giant sink hole that is under repair on the street next to ours. Oh dear. Luckily someone saw it jump in and notified the authorities. Many people came to help and got it out safely. 

I sincerely hope your weeks were a bit more under control and that putting on a shirt was never an afterthought as you headed out the door.

September 18: A Great Week with Lots of Insights

This past week was a much better week and I’ve been feeling great overall. I had a helpful talk with Samahria (the original Son-Rise mom). I said all of the things that I hadn’t wanted to fully admit to anyone about just how deeply I could resent my sweet Sarah for her condition, her behaviors, and how much I felt like my life was impacted by all of it. I realized that sometimes I scare myself about her health, worrying that she will die, in an attempt to get myself feeling loving instead of resentful. Ugh. Airing it honestly helped me let go of it more, as did her suggestions regarding when Sarah had big upsets when Amy was in the bathroom and to put myself more front and center of my life. 

Sarah’s upset when Amy uses the bathroom often comes and goes so I can’t be completely sure that the reason it stopped this time around was my own internal shift, but maybe. We seemed to go rather abruptly from Sarah having extreme screaming and banging-on-the-door times, even doing so after she had been in bed for an hour but then heard Amy close the door and thus got up to protest…to Sarah not reacting at all. The shift coincided with me deciding to react not at all the next time Sarah got upset about the bathroom situation. I talked with Amy and Carl about this too, so we were all in agreement that we were going to completely ignore it as if it wasn’t happening. And then we never got to put it into practice because Sarah hasn’t gotten upset about it again!

I have been reading Emotional Inheritance by Galit Atlas and has given me a lot of things to contemplate with more compassion and understanding than I normally do. Instead of just berating myself for my tense spots in parenting and life, I have realized that maybe I came by all of that honestly. Maybe my relatives going back multiple generations also had such struggles. It is humbling to only now really be contemplating the internal emotional life of my grandparents and what that might have been. Did they also always worry about doing well in school and in life? I know that is such a common thing for people that we don’t really even question it that often. This week I have started to question why I always strive so hard to do well at everything and need that approval from others to feel safe in life. Who was I before I started thinking I always needed to do everything for everyone? Before I needed to get an A on parenting and life?

The really big realization was that I have perhaps been seeing Sarah as an assignment that I needed to do well on. I know I have also diligently worked to support her as who she truly is and to give her lots of room for that, but there is still an undercurrent of needing something from her to feel ok about myself and my choices. As if when the homework assignments of babies were handed out and I realized my kit was missing some components, I just dug down deep and also tried to hurry to catch up to everyone around me. I know I realized rather quickly that catching up wouldn’t be a thing, but part of the drive to try all the therapies and all the dietary things and give all the love has been hoping that it would work. That we would be deemed good enough. That I would be safe and ok. I think that is what a lot of it really boils down to. So, this week I have often reminded myself that I don’t have to always do everything well and it is ok to make mistakes. It is ok, really really really ok for Sarah to be Sarah. Even with parenting Amy and running the household, there is perhaps more breathing room to make choices that aren’t always about taking care of other people and the house. I know I do make such choices all the time and it’s not really new, but to really not feel guilty about reading my book when there are dishes? Well, that is still a work in progress.

We have learned by experimenting that Claritin really isn’t strong enough for Sarah’s allergies so we have switched to Zyrtec. The Allegra was annoying with the twice a day doses or needing to swallow a pill and the fruit restriction. Sarah’s symptoms of phlegm and headaches and acid reflux are much improved overall but we aren’t totally free of them so it is still a journey. 

Remember how Sarah really wanted a certain book about a frog? Well, the librarian who helped order a book from a different library was clearly wise and magical. It was in fact THE book!! Sarah has been thrilled to have it and I even remember us having it before. It is jellyfish who come to tea and it only has a frog on the first page, but it does have holes to poke your finger through. Coinciding with the arrival of the book, Sarah has wanted to eat breakfast on her own in the family room while reading the book and listening to music. When she came home from school each day she went up to her room and shut the door to be on her own looking at the book and then to nap on her own. On the one hand that all seems like normal growing up and into teenager hood, on the other hand I missed Sarah wanting to spend time with me! Even though I so often didn’t want to do snuggle time when she wanted to, once she stopped asking I felt bereft. Sarah has also wanted to eat dinner by herself, either being outside while I am inside or being at a different table if we are outside. Since Carl is away, Sarah still wants to sleep next to me and our interactions overall have been loving and connected, but it is definitely a little different with how often she wants to be on her own. 

Carl is away in British Columbia doing a 7 day intense mountain biking race to honor his friend who died over a year ago, with whom he was originally going to do the race in 2020. The original plan was to do the race to honor the friend’s son who had died. So now Carl is biking to honor both of them.

Sarah has been interested in listening to a version of “Amazing Grace” sung by an acapella group from Swarthmore college from when Carl and I attended. It is my favorite version of the song and I used to sing it to Sarah when she was little. What surprised me this week was that she asked me to sing it with her!! She never does that! She never wants me to sing anymore. But now she does. And she wants me to play the song on repeat, which I’m happy to do. Amy didn’t believe that there were other songs on the album that would feel non-Christmassy so I did play a snippet of “Kiss the Girl.” A little while later, as I still sat at the dinner table with Sarah (an unusual meal together), she sang, “La la la la la… kiss the mom,” and came over to give me a kiss! The timing was perfect as I was feeling sad about something unrelated to kids, worrying that somehow I had messed up in another area of my life. She asked why I was sad. I said I had nickel feelings. She hugged me and said, “there, there, mama, it will be alright.”

Amy was interested in possibly dying her hair so I had ordered Manic Panic, some temporary dye that comes in fun colors. We did a super temporary dye that unfortunately resulted in Amy’s hair feeling like dry twigs that might snap off. It took a ton of brushing to get it to feel like hair. The next day she washed it out and we used the regular dye to put a purple streak in her hair on either side of her face. I used a different purple to dye all of my hair, and the places where I had white hair are definitely the brightest. Sarah got into the dye while I was on a phone call and attempted to dye her bangs. I think she didn’t put in enough dye for long enough and maybe used the wipes meant for cleaning dye away. Her bangs didn’t actually change color, which is just as well because her school doesn’t permit students to dye their hair. Honestly, part of me wishes Sarah had been successful because I wanted to see what her school would have done. But I’m not going to flout the rule on purpose so I’m leaving her hair as it is.

Amy’s school bus did not in fact come any earlier in the mornings than it ever did, except maybe by 5 minutes. She had been told it would come 15 minutes earlier but what that really meant was that she just waited an extra fifteen minutes at the bus stop. Now we have been told she will be on a different morning bus altogether and she has to be out there even earlier. Fingers crossed. 

I got out of jury duty! I turned in my letter from the pediatrician and was exempted within a few minutes of my arrival. The exemption is good for five years! So I took the bus to get home, stopping at the library to pick up THE frog book for Sarah. Then, instead of ubering or busing (I had ubered downtown rather than deal with parking), I walked all the way home from the Squirrel Hill library. For those of you familiar with the east end of Pittsburgh, you know what a long walk that was, especially with the Fern Hollow bridge still out of commission. As I round the bend on my 6 month new-hip-versary, I am so pleased to be able to do such a long walk. 

Lastly, I listened to some episodes of Glennon Doyle’s podcast We Can Do Hard Things in which she interviewed Dr. Becky Kennedy, a parenting expert. Dr. Becky’s way of explaining things was reminiscent of many things I have learned or thought about, but said in new ways and at the right time to be newly helpful. One metaphor she uses is that the parent is like a pilot of a plane. When there is turbulence, if you are a passenger, you want a pilot who will be confident and steady, even if they leave the screaming passengers alone while they go to the cockpit. You don’t want a pilot who also gets scared by turbulence (big feelings from kids) or asks if there is anyone else who knows how to fly the plane. She also talks a lot about active listening and honoring the experience your kids are having, even if you aren’t going to change your answer that they may be resisting. Anyway, I highly recommend those particular episodes. 

I have been watching The Great British Baking Show. Amy has joined me the past two nights and that has been a lovely snuggly time together on the couch. The only trouble with watching the show is that in my dreams I seem to be trying to bake things or need things to be just so. There was a night when Sarah needed to get up to pee, but in my confused dream state I was trying to stop her because we all needed to look the same and stay in our boxes! Last night I can’t tell if Sarah had a few startle seizure moments or if I was just in my baking show dream state and trying to stop her from moving. Maybe both. I don’t know. 

Anyway, I hope you are well and that you have someone to listen to your deepest feelings and help you forge ahead into new freer living.