Sarah had many instances of experiencing the howling fantods this week. That is a new term I learned, although it is an old one, that means having extreme disquiet of the body and mind. Although we are used to the howling fantods when Amy uses the bathroom and Sarah can’t stand it, that particular scenario went relatively well most of the time. Sarah was ever vigilant when Amy shut the bathroom door, but instead of yelling and pounding Sarah stood in the hall saying she was pretending to be a shark or an octopus or any number of other sea animals. She even did pretty well about not slamming the door open when Amy emerged.
The biggest issue Monday evening was Sarah deciding at dinner time that she desperately wanted an Apple Watch. I said no. I explained that it was quite expensive. She then ran up to get her cat bank, shaking her coins all over the kitchen floor hoping to make pennies turn into hundreds of dollars. She also protested every fruit or vegetable on her plate. I did make one exchange of peppers for cucumbers, but she ended up not having any of them anyway. Assuming she was partly hangry, and had the raging hormones of one approaching her period, I was telling her to eat some of her chicken, which I knew she liked. In protest over the whole concept of dinner or perhaps just our power clash over the Apple Watch, she then lifted her water glass and began to tip it as if to pour it over her dinner plate. At that moment I lost what semblance of calm I had been maintaining, and reminded her quickly and sternly that if she did that she would absolutely not get a treat after dinner. Treats are reserved for those who eat their veggies and generally behave well during dinner. That got her attention and she didn’t pour out her water on her plate, but neither did she easily eat dinner. Luckily Carl got home at that point and took over. Sarah had many more tears and talked about why I was mad. Eventually she did eat her chicken, but that was about it for dinner.
Sarah was also desperately waiting for a book we had ordered to arrive. For a few days she was able to handle it relatively well because I kept saying I didn’t know when it would arrive. But as more days passed and as I got the tracking information, her impatience grew. Tuesday afternoon when she got off the bus she immediately was looking for a package. But the book hadn’t arrived. In her upset she threw her water bottle on the floor. I told her that if it broke I would be using her money to buy a replacement. That did not change the throwing. Instead, as her upset grew, she went to the kitchen and started pouring the water out on the floor. When I said she needed to clean it up she grabbed the hand towel and started mopping up water angrily. Then she got up and took off her pants. I was wondering what fresh hell we were entering. She then used her pants to mop up the remaining water. While she did so I went upstairs and hid her iPad. I wanted to have a bit of control over the order of the rest of our day. So once she had fully calmed and wanted her iPad, I said she needed to clean up her pants from the kitchen and her room. She did so, had some iPad time, and had a good play session with Gregory.
Wednesday morning Sarah’s period started and I felt relieved, thinking her inner storms would calm a bit. They did, but we weren’t out of them entirely. There was still screaming impatience about the book not being here after school on Wednesday and Thursday. Luckily the book, The Very Busy Bear by Jack Tickle, did arrive Friday before Sarah got home. She was one very happy bear looking at her book - a book we used to have but gave away.
Thursday night at dinner the girls were in fine form, pretending to be a baby panda/crocodile/tiger (Sarah) or a baby kitten (Amy) who misbehaved in their high chairs. Then they got up and pretended to be wearing roller skates and slipping on banana peels. For all of the struggly moments, this warmed my heart. I love it when Sarah and Amy play together, finding the same joy and hilarity in a scenario that comes from their imaginations.
Yesterday we celebrated Sarah’s 16th birthday party at the zoo in their party room. Since I try to limit her dairy intake I heated non-dairy pizza from home, packed it in an insulated bag, and wrapped an electric heated vest around it. That worked! The party was wonderful, including some of Sarah’s kid friends, some family, and some of Sarah’s grown up friends and Sarah-Rise volunteers from the past. Sarah and Amy loved the indoor slide that went through a tree and I think they enjoyed petting the few small animals that were brought in for visits. The zoo handlers cautioned everyone not to squeal in delight because that could make the animals excited. I did my best until the armadillo came out and then I accidentally let out a small squeal. It was so small and cute and earnest and armadillo-ish!
There were moments when Sarah wanted to leave or do something other than the planned order of things. I instantly felt tense and was worried we were getting into the familiar control battle. What was striking was how Carl and Anna could arrive and totally shift the energy and flow of the moment. I know Sarah and I do have many moments of wonderful connection, but I’m so grateful to have others who can connect well when I am stuck. Amy and her BFF were excited to play on the big outdoor slides we had seen when arriving. Amy was very angry when it turned out all of the slides were off limits, perhaps a winter precaution because the slides are metal. Still, she did enjoy seeing the tigers, linx, leopard, and lions. We also loved seeing a giraffe head glad past in the background as we were looking at other animals. It was helpful that Carl and I had driven separately so Sarah could head home earlier with Carl while I stayed with Amy and her friend for a bit more zoo time.
Last night was the Great Birthday Bash Sleepover at Anna’s. They made pizzas and cake and watched Turning Red, which is one of Sarah’s favorite movies. Anna painted Sarah’s nails to look like little panda faces and gave Sarah a nightgown with zoo animals wearing sunglasses. A good time was had by all until about 1:30am when Anna woke to Sarah having a seizure. What is remarkable is that I had just put a new emergency seizure medication in the Just-in-Case bag that always travels with Sarah. Her previous emergency medication would have involved sticking a needle into a tiny glass bottle, drawing up the medication, snapping off the needle and replacing it with a nasal spray attachment. We had never needed it but I always felt overwhelmed by the idea of needing to do something so carefully in a high-adrenaline moment. Before the sleepover I had realized our emergency meds were expired and this time the neurologist prescribed prefilled nasal spray things. I even explained all of this to Anna, but we agreed the likelihood was small. Sarah hadn’t had a seizure since the Fourth of July a couple years ago. We still didn’t need the emergency meds, because they are reserved for seizures that last over 5 minutes. But still. Knowing we had the prefilled sprayer helped me stay calm on the phone. It was certainly a big event to have in the middle of a sleepover. Carl and I went over to Anna’s where Amy met us at the door. Sarah was sleepy but otherwise in good shape. So after a while we decided it was best to let Sarah stay where she was and that the sleepover could continue. She had some tiny startle seizures a few more times, but no more big seizures. I think everyone’s adrenaline levels have now returned to normal and we all got some sleep. I’m so glad I made donuts as a breakfast surprise for Sarah, because yesterday morning she was screamingly upset that I wouldn’t make donuts right at that moment. But knowing that her evening was rough, I am glad she could start her day with a favorite item. Overall, I think everyone involved handled the whole seizure scenario as well as could be. I don’t know how Amy is feeling about it all. This was the first time she witnessed a seizure. She seemed calm and ok as she let us in last night.
Later today the plan is to make a cake that looks like a panda. Sarah loves pandas, perhaps because she loves sadness and the dark patches by panda eyes could make them look sad. All of the presents from her party were panda-tastic. She received a pair of panda leggings, ducking out to the bathroom to put them on in the middle of the party! Before her party I also gave her a present from her great uncle. It is a panda shirt from the Smithsonian zoo. It was hard to get a picture of Sarah looking up when she first put in on, because she was so intent on looking at the pandas.
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