Sarah is now officially a 7th grader. Due to the heat she had dress-down days instead of uniform days. She started school on Thursday, riding the bus to and from as she did in the past. You must be thinking that I received bus information in the mail as promised. Ah, but no. Still nothing, despite having been told that it would arrive the week before she started school. I found out her bus details by contacting the St. Anthony Program transportation person who contacted the bus company and emailed me a copy of the letter that in theory has been mailed. Why, why, why, why, why in this age of computer technology is the bus company still sending out letters via snail mail rather than by email?!?!?! Anyway, I’m glad I had other ways to get the details. The bus was about half an hour late getting Sarah and half an hour late bringing her home on the first day. The second day was better so fingers are crossed that in the future it will be timely.
Sarah loved being back at school and is eager to return. She has to wait until Wednesday because tomorrow morning I take her to the Children’s Hospital for an overnight EEG. This is sort-of routine, but prompted by her few break-through seizures over the past several months. She had an overnight EEG a few years ago after her first seizure since infanthood, and it was a nightmare getting the leads on her head. It took two of us to hold her down because she was screaming and fighting the process so much. It was awful to torture her in the name of getting information to keep her healthy. So… this time around I asked the neurologist if there was something we could do to help her be more relaxed for the process. He suggested partial sedation, which is apparently a new thing to offer. This will just be for placing the leads on her head. I’m relieved that the beginning should be easier, but the downside is that she has to fast. She can’t have anything, not even water, after 3:30am Monday morning. Her appointment is at 11:30am!! I am torn between wanting to fast too out of solidarity and wanting to make sure I’m well fed and hydrated so I can really be my best self to support her. If I do eat it will be clandestinely. In theory we will be done by 7am Tuesday morning, but I’ve arranged for Anna to hang out with her while I teach rather than sending Sarah to school. I just don’t know how well we will sleep at the hospital or if it will be stressful for Sarah so I wanted to make sure she has a restful easy day.
Amy’s Monday was tough. She came home exhausted, in tears, and with a headache. It was 90 degrees and she said her class ate lunch outside. Then she had the 15 minute walk home. She also reported that math class was stressful because the problem they were given was hard and other kids buddied up to solve it but she didn’t have someone she felt she could pair with. She needed a snack, water, air conditioning, and a nap. After that she felt much better. For the other 90 degree days I picked her up from school. I also reached out to the principal who said it was optional to eat outside, though Amy said that seemed not to be clearly communicated to the kids. Still, Amy was relieved. The rest of her week was better.
One thing the pandemic really helped with was Amy’s frustration with and anger towards Sarah. Unfortunately, when Amy gets stressed about school things or other life things, Sarah seems to be the recipient of Amy’s feelings. Sadly, with in-person school that dynamic has started again, and I don’t know how to temper it. Yesterday Amy got mad at Sarah for grabbing her owl stuffed animal when they were out doing an errand. It was an errand nearby and Amy came home by herself before Sarah and Carl returned. Amy wrote in chalk on the front steps, “ I HATE YOU SARAH” and signed it “YOUR WORST ENEMIE.” What breaks my heart is that Sarah saw that when she came home because I didn’t know it was there. Once I saw it I poured water over it until it was gone. I don’t know how Sarah felt about it. She didn’t seem upset, but still. Still.
Amy also packed a backpack and sleeping bag and ran away to the tree at the end of our street. When I found her and told her I had been calling for her all over the house and that I had been worried, she burst into tears. So, we went home and I gave her some water. I listened to her tears about how unfair it is that Sarah isn’t more like her and how unfair it is that people like Sarah exist. I totally understand Amy’s feelings and have certainly had such grief myself. And yet. It is still so heartbreaking. I reminded her that while Sarah is sometimes frustrating, she also has us all cracking up with laughter many times. I pointed out that many of the people we love in our life (Anna, Sc, Gregory, M) wouldn’t be with us if Sarah wasn’t who she is. And that Carl and I and all of the volunteers over the years worked our butts off to help Sarah talk, make eye contact, play games, use the bathroom, and read. When I said that Amy had been one of the most helpful people for teaching Sarah to play, she got a small smile in her being that then she tried to hide. Then I steered the conversation towards how Amy would feel if she came home and saw words such as “I hate Amy” or towards her BFF. She knew she would not like such a thing at all. I offered to find a support group or therapist and she bristled at the mere idea. For now I hope I made it clear enough that it is ok to have all of her feelings and to share them with me, but not to say or write them where Sarah will hear or see them. These conversations feel tricky to navigate. I feel like I should now add many words to assure all readers of my deep love for Sarah just as she is and that it doesn’t matter about how we worked to help her or the other people she has brought into our life. It certainly doesn’t matter in terms of her lovability. It does matter when trying to remind someone who is very mad and upset and not feeling loving towards her.
We love the George and Martha hippo books. There is one story in which Martha gets so mad at George she resolves never to speak to him again. But then she keeps seeing things she knows he would appreciate or that she wants to share with him. So she relents and they are friends again. Amy so often resolves never to speak to Sarah again but then once her anger passes she readily connects with Sarah and enjoys that connection. So I will have to trust to that being the truest foundation, and that Amy does actually love Sarah despite the frustrations.
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