September 26: A Week With Too Much

This past week felt extremely packed from Monday through Thursday. I felt like I was barely keeping up with what needed to happen, barely breathing, barely staying afloat. What is always an odd juxtaposition with that feeling is that when I’m actually teaching or giving a massage then I’m not stressed or feeling time pressure. It is just all the in-between stuff. Plus there were many added things that we don’t normally have in a week.

Monday I got home from visiting my friend (a 6-hour drive away) in time to meet Sarah’s bus and take her to her piano lesson. That meant leaving basically as soon as she got off the bus. For this week I will see if she can get off at the bus stop prior to hers, which is a block away from her piano lesson. After piano we have 45 minutes before it is time to get ready for swim lessons. 

Tuesday, as soon as I got back from teaching, I got Carl’s help to put our cat in her carrier for a vet appointment. She has been over-grooming and scratching too much for a while. Prednisone helped with the scratching, but the vet doesn’t want her on a steroid forever. So we switched to a liquid allergy medication. The med she was on to help with the overgrooming meant she wasn’t eating her dinner so we switched to something that I put in her ear. I zoomed home from the vet to meet Sarah’s bus. As soon as Sarah got off the bus, I took her for an x-ray of her abdomen. I have been wondering for a while if she was dealing with constipation/impaction despite daily miralax. It turns out that I was right to be concerned. Additionally, the x-ray shows lumbar scoliosis (her spine in her low back curves to one side) which I am distressed and concerned about. I haven’t been able to speak to the doctor about it yet. Overall the process went smoothly except for feeling like a grumpy mean mom in the waiting room as I tried to help Sarah with technology. I kept thinking “Oh my goodness, we are that family! We are the ones causing a disturbance and everyone is looking at us.” I also felt grumpy and mean as Sarah went into screaming mode when they wanted her to take off her clothes and put on a robe for the x-ray. After a minute of screaming I went to ask if she could please keep her shirt on because she really didn’t want to take it off. They agreed and then all was well. As soon as we got back from the x-ray it was time for her shower and then for her session with Sc. Then I went to get groceries, as I usually do.

Wednesday I had a longer work day than usual so Anna met Sarah’s bus and stayed with the kids until Carl took over at 7. I had time after work at the massage school to come home for one hour and make dinner, but then it was time to go see my evening client. I used to always see an evening person on Thursdays, but just changed it to fit our schedule better overall. Anyway, it just meant that Wednesday felt different than usual. 

Then Thursday was mostly normal but was still full with work and an unexpected but necessary errand of going to get Sarah’s backpack where she had accidentally forgotten it in Anna’s car. In the morning we discovered it was missing and there was much upset on Sarah’s part and much tension on my part as I worried that her upset would mean she wouldn’t get ready for the bus. At least she was able to tell us where it was so we didn’t spend our morning tearing apart the house. Amy leapt into action with letting Sarah borrow one of her backpacks to which Amy taped paper cats and musical notes that she drew. It was picture day so Sarah got to wear her favorite new shirt with cats and musical notes. She wore a matching mask and her musical note pants made by Grandma. I also took the kids to get much needed bang-trims on Thursday afternoon, but we had to leave as soon as Sarah was done with her SR session with G. I felt like I didn’t really exhale until Thursday after the bang trims, aside from when I was breathing relaxedly while working!

Friday morning Sarah’s bus was so late that I drove her to school (after many minutes of waiting and wondering and communicating with the other parents on the route and having Sarah scream in upset) and had my fingers crossed that the afternoon bus would be timely. It was.

I have felt generally mad at many people and many situations for most of the week (aside from when I was working). So this week felt hard and I’m glad yesterday and today are relaxed days. I’m letting the kids do extra technology because I feel a need to be a lump on the couch. Overall I think the past few weeks have felt more stressful than anything since the early days of the covid shut-down. Maybe I am just forgetting other hard times. I’m sure I am. But still. It hasn’t felt easy.

Carl was away all day yesterday for a bike race. He has a work meeting this morning and tonight leaves for the week for a work trip. So extra Peppa Pig episodes and naps for Sarah. Amy had a long play date yesterday and will probably so do again today once she finishes her homework. I will not do much.

On a more positive note, I leave you with this small conversation Carl and Sarah had yesterday:

S: The boat goes up, and the boat goes down. The boat goes up, and the boat goes down. 

C: What’s that from?

S: Peppa the Pig

C: What’s it about?

S: A boat ride with Grandpa Pig

C: Why does the boat go up and down?

S: Because they are singing, “The boat goes up, and the boat goes down.”

September 19: Results and Improvements

Sarah’s EEG has been read but her neurologist wants to consult with other epileptologists before giving his suggestions to me. He thinks Sarah’s moments of waking with a start may be seizure related. The results that came from whomever read her EEG also indicate that they are possibly seizure related. Even though that confirms my suspicions, learning that initially had me feeling overwhelmed by sadness. I want my baby to be ok! I know she is 14 and not a baby, but that feeling of wanting to protect from harm never goes away. I also know this is probably good news in that maybe the solution is just increasing her meds a bit. If the startle moments weren’t related to seizures then we would have more of a mystery. 

Sarah’s bus situation seems to be resolved with a good and regular driver (knock on wood). The driver delights in the kids and engages them in activities while they drive, such as counting how many dogs they see. 

Amy’s PSSAs are almost done. Just a few more days this coming week. I learned that I can send a snack with her so that she doesn’t have to make it till the 1pm lunch. I don’t know how easy it will be for her to find time to have the snack, but hopefully that will work. She says she is usually one of the last kids to finish and she hates feeling slow and then it’s not as quiet in the final minutes. 

Amy had some math problems from her class work that she needed to finish at home. When I glanced at one and realized she needed to add more detail to her answer she imploded with feelings. It is hard to think when a problem feels overwhelming. After sharing ideas for how we could destroy the math sheet and after tears and snuggling, she was able to approach some of the problems again. While she did so, I talked with Carl. Together we came up with the idea of writing a new problem similar to the original but all about cats. I did so and showed it to her. She instantly understood how to go about solving it and explaining her answer. All I did was change the text from something about apps and data storage amounts to cats and their weight. So now we know for the future that if she is feeling overwhelmed or stuck about math, then we just need to translate the problem into Amy language of cats or witches. 

I am currently visiting one of my best friends of 40 years. We hadn’t seen each other for a year and a half. Friday night I attended a Pink Gloves Boxing class that she teaches. It was so fun, and it was a great workout. I’m still feeling it today. I wish that Pittsburgh had such a class. Yesterday we went for a beautiful walk in the woods, spotting a few small frogs and an ent (a baby newt). It is wonderful to be together. And I have slept incredibly well! 

Carl and the girls are having a Dad Weekend. Yesterday they went to a lake beach. When he sent me some pictures I marveled at our big grown-up kids. How did that happen?! I know Amy grew 1/2 an inch in the past month. Sarah probably isn’t growing taller anymore. But weren’t they just infants?!

September 12: Several Flavors of Stress

We are still waiting to hear from the neurologist about Sarah’s EEG. It has been almost two weeks and that is the time frame I was told to expect. Her sleep this past week has been better overall with fewer times of waking with a start. Most nights she still comes into my room around midnight and asks to switch beds with me. In the past I used to resist this some of the time, but lately I just want to sleep no matter how it happens. Plus, when I am in her bed it is the bed frame that was mine when I was younger so there is something nice about that. 

Overall I know this past week went quite well, but it felt stressful. Amy only had three days of school due to Labor Day and Rosh Hashanah. On Tuesday Amy and I made a cake following a recipe from one of the books she recently read and loved. It was a Delicious Orange Cake. That was the title of the recipe and the result was true to the claim. It was also really easy to make, unlike petit fours. Since Amy is an amazing Playdoh cake maker, creating multiple layers and covering her creations with rolled Playdoh that looks like fondant, I thought maybe we could make petit fours. Ha! I will certainly appreciate them more when I eat them elsewhere but I’m not going to make something that takes so much time, requires such precision, and involves 3 sticks of butter just in the cake batter! Anyway, after we made the cake, Amy had a playdate with her BFF and then had her usual time with Sc. She had such a fun day that she was not looking forward to school on Wednesday, which is quite unlike her. She normally loves school. But it wasn’t a normal day ahead of her. It was PSSAs. This was her first time taking them, even though normally she would have done so in 3rd and 4th grade, but Covid-19 interfered with that. She was nervous about the testing.

The days with PSSAs were fine, especially after the slight chaos of the first day was smoothed. However, my mama-bear grumble is that on the test days her class didn’t get lunch until 1pm!!!! She has breakfast at 6:30am!! For Thursday and Friday I gave her a second breakfast at 7:30, but still. That is a very long time to go without food. And the school wants them fed and rested to be their smartest!

Meanwhile, some of you may be aware of the shortage of bus drivers in Pennsylvania. It is causing massive problems. From what I have read, the difficulties we had with Sarah’s bus pale in comparison to what some have experienced, but still. Our experiences have been stressful. I don’t like my morning and evening plans to feel like a roll of the dice as to what happens. If there is no bus driver for Sarah’s route, that is ok! If they will be late, that is ok. But the bus company needs to tell me that so I can plan accordingly. Not that I don’t super love standing by my front door for half an hour every morning with my eyes glued to the street while Sarah gets impatient and anxious, but I could do other things with my time! Like drive Sarah to school so she will be on time. 

One morning when the bus was late, the mother of the kid who gets picked up before Sarah called the company and was told the driver was 20 minutes late. But by that point it was already 20 minutes late to get Sarah and we live 15 minutes from the first kid, so the bus was way more than 20 minutes late. When I called 10 minutes later I was told there was no driver for that route! I just don’t understand the lack of communication. I understand the lack of resources and that that will just suck sometimes, but if I am not told what is going on then I can’t make accommodations. If parents are told different things, then how do we trust anything we are told? So far we have had afternoons when Sarah was returned home one or two hours late. We have had mornings with pickup half an hour late or not at all. Friday morning the bus was half an hour late and when I called the company I was told they were trying to reach the driver but couldn’t. When the driver did arrive (and note that it is a new driver every day or two), she said she got lost. I asked if she had GPS. She said her phone was too old for GPS and she was following printed Mapquest directions!!!!! Why do all the buses not have GPS as part of the bus equipment?! If it is a lack of funds, then tell the parents and create a gofundme and I will pay for GPS! 

I will give this company another couple of weeks to get their communication $*^T together and after that I think for my own sanity I will have to drive her all the time. Sarah loves riding on the bus and I love not driving 40-50 minutes round trip twice a day. But I need something reliable.

Meanwhile, on Thursday and Friday there was no crossing guard at the one big intersection Amy walks through going to and from school. In the mornings Carl or I walk her to the intersection so if there is no crossing guard we can help, but until these two days, there has always been a crossing guard. I didn’t realize that a lack of a guard in the morning meant no one in the afternoon either. Now I know. Amy was totally stressed on Friday when she got home. She said it took three rotations of the light for her to feel safe to cross on the all-way walk because cars were sometimes still going through the intersection when it was her turn!!!!!! I am glad she did such a careful job. I know there is no way for the crossing guard company to communicate with parents when there won’t be someone there, but I wish there was. As with the bus situation, if I know what is happening then I can make changes accordingly!!

Yesterday morning it was clear that the girls had feelings built up from their weeks of school because they started the day at odds with each other from moment one. After getting some feelings out in various ways, and after a trip to a new bakery with Carl, they had a better day. At the bakery they saw a friend who was wearing a shirt with cats and musical notes. Sarah really really really wants that shirt. Carl was able to find it and order it for both girls since it speaks to both of their loves, but now Sarah is really really really impatient for it to arrive. Amy secretly made a drawing of a mouse wearing a shirt with cats and musical notes that Sarah could color. Then she made a treasure hunt with clues for Sarah to find and follow that would lead to the coloring page. I’m always amazed when Amy can switch from hating Sarah to creating something so full of love and thoughtfulness for her. After a fun outdoor playdate with a friend, Sarah followed the clues and found the treasure. 

Overall my feelings for this past week can be summed up by a series of !!!!!!!! There was some unexpected kerfluffle at work to be resolved and I did so quickly. I felt stuck and overwhelmed with writing my book and with every change I made I worried that I was ruining it instead of improving it. So that was (is) stressful too. At least I had the bright spot of receiving my Tiny Chef doll in the mail. But still. !!!!

So,  love and !!!!. I hope any of your !!!! moments have been exciting rather than stressful.

September 5: An EEG, Camping, and Muffins

 I forgot that today was Sunday! Since it is a long weekend, today really feels like Saturday. Thus the later-than-usual update. 

This week has not involved a great amount of sleep. Sunday night after dinner Sarah wasn’t to have any food. After 3am she wasn’t to have any water. I slept lightly, on alert for sounds of her getting a drink. This was in preparation for sedation for an 11am placing of the leads for an overnight EEG. A few years ago when Sarah last had an EEG it took two of us to hold her down for the lead placement. So I requested that things be different this time around. The doctor was planning full sedation for half an hour but I explained that I thought partial sedation was an option. She said they could start with laughing gas but place an IV port in case they needed the full sedation. Sarah did beautifully with the laughing gas and needed nothing more. By the time we got to our hospital room and she was allowed to eat, it had been 11 hours since she last had water and 17 hours since she last had food. As you can imagine, she was very hungry. Since it takes about an hour for food to be delivered from the cafeteria, I was glad I came with yogurt and snacks. 

Sarah and I had a peaceful day at the hospital with unlimited iPad use until the battery died because the charger I brought wasn’t big enough to keep up even when it was plugged in the whole time. The break from technology was nice. Sarah and I snuggled on the sofa and made a paper replica of a Laughing Bag. Years ago we had a yellow laughing bag that laughed when you squeezed it. Having laughing gas made Sarah think of the laughing bag. In customary Sarah fashion, she absolutely had to have it, but was fine with a paper version stuffed with paper towels and with the laughter supplied by me. 

At night in the hospital Sarah had several times of waking suddenly with a start, sometimes sitting up. She does this at home on occasion, sometimes with such velocity that she falls out of bed. I’m glad it happened during the EEG and I could press a button to get it noted on her chart. I’m still waiting for the results. These moments don’t seem like seizures but I wonder if they are related. 

Every night since the EEG she has had many such moments. Since Carl was away for a few days, Sarah slept next to me and I had many times of going from a sound sleep to saving Sarah from falling out of bed or settling her, my heart racing each time. 

On Tuesday I kept Sarah home from school because I thought she might be tired, even though we were home by 7am so she could have been to school on time. Anna came to be with her while I taught a class. Anna is one of Sarah’s favorite people in the world. As a testament to how tired Sarah was, she napped while Anna was at our house.

Sarah’s school days went well and she even was in good spirits on Friday when a bus scheduling snafu meant she got home two hours late!

Amy had a good week too, and my absence for a night helped her appreciate all that I do. 

We are camping for the weekend. Last night was very rainy but we stayed snug and dry. I made muffins to assure that we had plentiful snacks. A good thing too because Amy has eaten 8 today! It has been abundantly clear at times how everything is wrong with the world when Amy is hungry (but doesn’t feel hungry) and all is right with the world after she has eaten. Sarah can be similarly hangry, as can I. Muffins to the rescue. 

Today a new family set up camp next to ours. Sarah promptly went over and began a connection. Both girls have been crafting with the other kids because luckily that family brought enough to share. Note to self for the future: pack craft projects! I love how Sarah initiated doing an activity with the kids, even if it was parallel play. 

Despite the rain we have enjoyed time at the lake beach at the campground. Amy is a mermaid and swims until she is too cold to continue. Sarah didn’t swim but enjoyed the large umbrella we rented. 

I hope you are all well and have slept soundly.