January 29: Howling Fantods, Birthday Celebrations, and Seizures

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.

January 22: Being Present with Impatience for Presents

Did you start your morning having a hard time waiting for your birthday presents? Did you start your morning as a baby crocodile even though you were a baby panda when you went to bed? Sarah did both of these things. Yesterday she had BIG FEELINGS about waiting. At first I was trying to get the feelings, or at least the volume associated with them, to stop. Then I remembered that sometimes people have feelings and they don’t need to be stopped, just listened to. How have I known this all of my life and yet sometimes still forget in the face of Sarah’s intense screaming? I think that question contains the answer. Anyway, it was much better to just listen and be with her. I felt calmer and I think it helped her shift to the tears under the screams. Clearly, as this morning demonstrated, there are still big feelings. I am reminding myself today that I don’t need to be scared of her feelings or try to shut them down in any way. 

As I move through revising my book, I learn things from my past self. I’m hoping such things can also help future readers. The thing I remembered this week was the importance of connecting to Sarah before I ask her to do something. So simple and yet often not what I do. I also remembered that I want to be the most interesting thing going on if I’m wanting to connect, especially if technology is already in use. On at least two occasions if I sat next to her with presence and enthusiasm she eagerly turned to me and talked about the panda on her wall being sad and gave me chin presses of love and sensory input. For anyone unfamiliar with a a chin press it is when Sarah presses her chin into the top of someone's head quite firmly. This isn’t something everyone tolerates or enjoys, but I love them. 

Twice now Sarah has taken the printed draft of my book and taken it to her room to read. I don’t know how closely she is reading, but she has brought up subjects from her past that I wrote about. I know she does that anyway - grabbing a memory from her past, seemingly out of the blue - so I can’t be completely sure it was from her reading, but probably. 

Sarah likes to help Carl make Hello Fresh meals on the weekends. Her biggest love is to make the sauces. Yesterday she wore my Tiny Chef apron while making a sauce and talking about how she and the Tiny Chef matched, because I have his picture above my counter.

On Friday Sarah didn’t have school so Anna came to hang out with her while I saw a client. Anna and Sarah used a plastic bead necklace to turn her small musical note bag into a purse and then took the bus to the Squirrel Hill library. Sarah loves that library because she can watch buses from the windows and at this point at least some of the librarians know her by name. Sarah is skilled at asking for whatever book she has most recently decided she must read - usually a book we used to own and then gave away. I may never give away a kids book ever again!! Her book of the moment is The Very Busy Bear, which the library system does not have! Luckily I did find a used copy and it will arrive in a week or so. I haven’t told her that I know the shipping information because she handles it much better if I say I don’t know than if I tell her a specific date. Any specifics result in the same screaming and impatience that are happening regarding her birthday presents now.

Amy is selling Girl Scout cookies. This year things are different than past years because you can’t order for mail delivery until February 27. You can order online for girl delivery if you live near us, but the new cookie for the year is only available for mail orders. Her troop also didn’t get the paperwork they normally do so I found an order form on Etsy and printed it so she can still go door to door. If you live near us and want her to knock on your door, let me know! I think the cutoff for placing girl-delivery orders may be Jan 31. You would think the website would be clear about this and make it impossible to select girl-delivery after a certain date, but you would be incorrect. 

https://DigitalCookie.GirlScouts.org/scout/amy112560

I’m back in physical therapy, but this time to preserve my left hip. It’s mostly in good shape but was starting to speak to me in the way my right hip used to when it started to have issues. I can tell that with PT and seeing my trainer I am getting notably stronger. It also helped that I told the PT that I never do the exercises I’m supposed to do at home if they involve lying down. So she gave me standing equivalents and that works much better. I can do them while waiting for Sarah’s bus or a client.

Despite the regularity of having a range of emotional experiences, I’m still always surprised by how different I can feel on different days. There were a couple of days this past week when I was so stressed and so much in my head that I couldn’t sleep well. And then there were other days when all was right with the world and I felt peaceful and happy. True, some of the things I had been stressed about resolved before I felt peaceful, but still. Each reality can feel like the only reality when I’m in it and I wonder how I ever feel otherwise. It’s akin to being sick and well and how impossible it can be to imagine or remember the alternative to whatever I am feeling.

I hope you are feeling peaceful and well, but if not, let’s all remember not to be scared of feelings (our or other people’s).

January 15: The Great Mouse Proofing of 2023

The Great Mouse Proofing of 2023 is now complete. We hope. The struggle against the mice in our mountain house has been ongoing and we have tried various measures to stop them, all seemingly to no avail. Last weekend we discovered that they liked to take food out of the trash and carry it into our multipurpose drawer, leaving it there along with lots of poop. I cleaned the drawer well. They repeated their process the next night. Carl put a camera in the drawer so we could check on them while we weren’t at the house and the mice went into the drawer every night! Before we left last weekend I put Mice Eliminator Packets in some of their favorite places, including under the kitchen sink. We closed the live trap as we always do when we leave. Yesterday Carl found the live trap completely open, devoid of food, and moved. The part that normally has the bait was sitting next to the Mice Eliminator Packet! Yesterday Carl and Sarah emptied and cleaned all of the drawers and cabinets. They put wood strips in to seal the passageways the mice were using to get into the drawers. Carl also put all of our spare bedding in plastic bins, after throwing away yet another sheet that had been shredded extensively. I brought out 8 new live traps. We set four last night and caught one mouse. More than ever we relate to A Visitor for Bear by Bonnie Becker. It is about a bear who keeps trying to stop a mouse from coming in his house and no matter what he does, "there was the mouse! Small and gray and bright eyed!" We are hoping our measures are more successful than the bears. Otherwise, if we follow Bear’s example, next Christmas we will be exchanging presents with the mice and going sledding with them. To that end, Carl is already softening as he plans to take a snack to put next to the trapped mouse when he sets it free.

For a few days, Sarah’s trademark braids were nowhere to be found. After a bath she often puts her hair back in a very messy do with a plastic comb clip. She also wanted to have me use the bird’s nest hair holders my mom gave us to hold a bun or ponytail for going to school. All of these new styles point out how much of a teenager she is, with sweet 16 on the horizon. She also likes to jam to her favorite music while holding an inflatable guitar. Unfortunately, her timing for this is usually on a school morning when she really needs to be eating breakfast. Her favorite song of late is “A Color Just Right” from the Bubble Guppies show. 

Sarah has started rehearsals for her school musical, High School Musical Jr. On the second day of rehearsal, Sarah and one of her classmates went down before their resource room teacher was ready to assist. Sarah was upset that rehearsal was not like it was for Peter Pan Jr and she wanted to be done right away and started screaming about her feelings. Her teacher hot footed it to rehearsal as quickly as she could. From now on Sarah will only attend rehearsal if her teacher is there. I don’t yet want to tell Sarah that the whole thing is optional. Of course she doesn’t have to be in the musical if she doesn’t want to. But she loved it so much last year and I hope that once she gets more used to this musical she will love it too. We watched the movie on Friday and Sarah watched maybe a third of it. I will also play the music when we drive places so she can get used to the songs. 

Amy’s leggings arrived and they fit!! Old Navy and Gap for the win!! Still size 14 of course, but now Amy’s leggings come all the way down to her ankles, which is a relief.

Amy has been creating lots of art using a light-up tablet tracing thingie that at first resulted in many tears. She claimed it was not as easy as the box made it look and it was pointless and way too hard. There were at least two big crying sessions about that. And then she persevered and made beautiful art. She uses the template of an outline of a person and adds stickers that provide the outline of clothes. Then she traces the completed person and then colors her creation. Unfortunately I haven’t taken a picture of her work, but I have been impressed as I always am by her sense of how to combine colors. 

The closer I think I am getting to the finish line regarding my book, the farther away that finish line seems to move. I know each step along the way is necessary and that I’m only ready to learn more of the steps as I move along the path, but it can be discouraging. I’m realizing now that I need to cut some portions out entirely and rearrange others. I am feeling like Amy did when the tracing kit seemed impossible. I know it’s not quite impossible, but it feels unwieldy and hard. The more I work on this whole venture the more in awe I am of people who write full-time and get published. I had two talks with such people this week and it was quite helpful, even if simultaneously daunting. 

January 8: Socks, Screams, and Tiger Logos

We had an easy drive home from visiting my family…. Until we walked into our house. Before we left for our trip Sarah had wanted to order Goodnight Moon socks for my brother, to match her own. As I ordered the socks, I also found a new pattern of Goodnight Moon socks and ordered two pairs for Sarah. She seemed interested in when they would arrive, but at peace with the information that the package would not arrive at any of the places we were visiting. I said they would arrive after we got home. Oh no!! Error!! Alert! Alert! I should not have said that. I should have lied and said I had no idea when they would arrive. I didn’t know the specific date, but it didn’t mean anything to me because the socks would arrive whenever they would arrive. Meanwhile, Sarah was fully expecting the new socks to be waiting for her when we crossed our threshold. They were not. The screams and upset from Sarah were monumental and lasted for maybe an hour? I'm not sure. I stuck around for unloading our rental car and then drove out to return it and get our car from the airport. Carl stayed at home to deal with the screams. 

As I drove away, grateful for the peace but also still upset about how upset Sarah was and how mad I felt in response, I was thinking about how I would have survived the moment if Carl hadn’t been there. I know I have lots of practice with dealing with Sarah’s upsets, but I didn’t have the capacity on this day. I could understand why people sometimes do violence to their children and that scared me. I reminded myself of the friends and neighbors nearby that I could have called or gone to to ask them to step in while I stepped out. Or I could have just left the house and Sarah could have screamed on her own, with Amy probably staying in her room. I’m gad Carl was there and his usual calm self so that I didn’t have to think about it, but it is still a good reminder that I don’t have to push past my limits when there is a village to help.

Sarah had school on Tuesday and the bus came even earlier than ever before. She didn’t even have time to brush her teeth, but she did make it on the bus. Amy didn’t have school until Thursday so we spent hours on Tuesday and Wednesday searching a multitude of stores in person. We were looking for cozy fleece-lined leggings that would actually fit my long-limbed daughter. She is 11 but needs size 14 to get the length, but that often makes the waist not fit right. Target has stopped making this legging product that they have made for at least the lifetimes of my children. When I have tried getting things online they often haven’t worked, so I was determined to find the things in person. Nope! Some close possibilities and lots of total strike-outs of stores that didn’t really have anything Amy-ish at all. In the end I did order some online from two more stores. Fingers crossed. We did at least find pajamas that fit Amy instead of showing 4 inches of leg above her ankle. The pajamas are size 14 of course.

Yesterday Carl and Amy went skiing while Sarah and I had a cozy day indoors. Amy had lots of practice getting up from falling, because the hill they went down was bigger and harder than any she has done before. Still, Carl said she persevered impressively and overall they both had a good time. Sarah talked about going to the zoo and I kept offering and asking, but she kept saying she wanted to go later. 

Sarah has been talking a lot about an episode of Caillou in which the dad is wearing a baseball uniform with a button-down shirt with a tiger logo on it. Sarah really wants to be Caillou touching the tiger logo or to be the dad wearing the logo. While her school sweatshirt has a tiger on it, that apparently doesn’t fit the bill. Last night Amy quickly drew a detailed tiger head with a roaring speech bubble and taped it to Carl’s shirt. Sarah was delighted, pointed to it many times, and later taped it to her own shirt. 

May you have the socks and shirt logos of your dreams.

January 1: Christmas Travels

While in chilly Florida, we went to the Tampa zoo and met up with a friend of mine from elementary school whom I hadn’t seen in over 30 years! She was in Florida with her family and it was really great to see her again. The kids loved the zoo. They ran to get to the animals and then at each one Sarah would kneel on one knee, as she has observed Blippi doing on tv when he goes to a zoo. The biggest highlight was the carousel, especially the panda that Sarah could ride! Both kids went on the carousel many times and even tried the small tiger rollercoaster. Amy went on the coaster three times. 

On our last day it was warm enough to eat at our favorite outdoor restaurant where the kids can play in the sand or play a giant Connect Four game. Then we went to a glass museum and Sarah protested the very idea of going in. We prevailed upon her to at least walk inside, at which point her protests grew louder. So I went back to the car with her (grumpily) and took a turn seeing the museum after Carl and Amy were done. We also found an ice cream shop that had non-dairy options since that is best for Sarah at the moment. Across from the ice cream shop there was a grassy area with banyan trees. The girls had a great time running around. We finished the day with time in the pool and hot tub. Carl didn’t go in the ocean that day, but he did so on an even chillier day, very boldly and quickly. 

We had flown to Florida on Southwest but were feeling quite fortunate that we happened to have tickets on American Air to get to Philadelphia. We had a short delay but that was the only hiccup. We spent a couple of days visiting my dad, stepmom, brother, and uncle. That was wonderful and included a trip to the Delaware children’s museum and a playground. For our Christmas celebration with them, among many wonderful things, Sarah was thrilled to get a panda watch, Amy was delighted to get art supplies and American Girl doll clothes, Carl was excited to get Fritos and a Lego kit, and my socks were knocked off when I received a family heirloom and a binder of family history to go with it. Crocodile Dentist is a game that has been a big hit with all of us. 

Now we are finishing our trip with a couple of days visiting my mom and stepdad. We had a lovely Christmas morning yesterday. Carl got a book of useless information that we all found fascinating, although I can’t remember a single thing to share here. Sarah now covets a new musical note bag, Amy has more art supplies that she has been wanting for ages, and I received a photo album of my young self. Amy kept looking at the pictures and wondering why I looked like her. I suggested maybe it is that she looks like me. 

Overall this whole trip has been a much-needed restful time of being together. That said, I will also admit that for many days I have had less patience for Sarah’s repeated requests for me to say certain things or to ask how people are doing when I have no way of knowing. But asking how they might be doing is our attempt to steer away from her asking us to ask her what happened to a given person. I have been feeling hypocritical as Carl reads through my book draft, about the earlier Sarah-Rise days, because I don’t feel like I have been in a loving, present, or spacious heart space with Sarah lately. 

I hope your days have felt spacious and supportive.