For the first time in Amy’s life, we took her to see fireworks. We hadn’t realized she hadn’t ever really seen them up close. She was in awe of the beauty but needed to cover her ears because she hated how loud they were. Towards the end she was in tears about the noise so Carl took her away before the finale. When Sarah and I met them afterwards they had ice cream for all, which doesn’t solve all of the world’s problems but sometimes can solve too-loud-fireworks-dismay.
We don’t think it was related to the fireworks because it was six hours later, but Sarah had a seizure that night. It was the first break-through seizure since we last increased her anti-seizure meds. This time she seemed more aware of what was going on, while being powerless. Sometimes after a seizure she can speak and move normally right away. This time it took a few minutes, which probably felt like hours to Sarah. It seemed like she was trapped in one of those nightmares where you want to speak and move but you can’t. We reassured her that her abilities would quickly return. After she was snuggled next to Carl for the remainder of the night, I took some time to write about my feelings and experience so I could let go of the adrenaline and sleep again. I didn’t have paper or pen easily at hand so I just used my finger to write on the sheet. Evidently, it is the process of writing that helps one’s brain more than needing to save anything legibly for posterity. Because of this seizure we now need to do another overnight EEG for Sarah, currently scheduled for mid-August.
We had a wonderful day at a lake beach on July 5. Amy spent hours swimming, running, doing gymnastics, and making things out of sand. Sarah and Carl made a sand Goodnight Moon House and also went into the water. I bravely got my toes wet in the cold water but that was it.
The kids and I tried to go to the pool one sunny afternoon, except when we parked it suddenly wasn’t sunny anymore. As lightning flashed and thunder rumbled, we returned home. The drive was punctuated by Sarah’s screams, but when we got home we had milkshakes and watched Frozen so the day wasn’t all lost. The next day was Mermaid Day with Anna. They had a rain party with their mer-pets and even managed a quick trip to the pool during a sunny interval. As soon as Mermaid Day was over, Sarah had her time with Gregory and then went for her first Anat Baniel Method lesson in two years. After that she did some Zwift biking and then had dinner with Grandma and Amy. When I came home from work the kids were doing quiet time before bed. Sarah was very quiet. It turns out that having such a packed day and not having her customary nap made for one tired kiddo. When I went to tell her to get ready for bed I found her sound asleep in Carl’s side of our bed!
Sarah has resumed piano lessons in person, which is super wonderful for all involved. Namely, it means that I am not as involved and her teacher can help her more effectively. What I don’t understand fully is why Sarah loves her lessons, but then screams bloody murder if I dare even suggest practicing her new song even it is with help. She tolerates practicing a song she knows better, but otherwise the screaming is intense and commences before I even finish speaking. I know I used to hate practicing piano too, but I don’t think I liked my lessons much either.
On the way home from her piano lesson I sighed in annoyance at another driver. Sarah piped up from the backseat, “Dude, Mama.” It was as if she was reminding me of what I normally say, but she had none of the intonation I normally do. Just a reminder of the word.
Carl was an absolute genius early in the week when he was with Sarah for her bedtime routine, and she was screaming about Amy using the bathroom. I was in my room journaling to get my feelings out regarding Sarah’s screaming and also journaling, as an experiment, as if I was Sarah venting her frustrations about the moment. I have no idea if my writing as Sarah will help with anything but it does help me with empathy and compassion. Carl started talking to Sarah about how everyone needs to use the bathroom and maybe even her stuffed animals and dolls needed to go. She resisted at first, but at about the time I finished writing, she switched to accepting and embracing the idea. Suddenly there was laughter and delight as Amy and Sarah participated in moving a line of dolls and stuffed animals in turns to the bathroom. Each one always closed the door, because that sound is so often the trigger for Sarah’s screams. Some of the cat stuffed animals pretended to use the litterbox. Carl was stuck at the end of an ever-growing line, complaining that he would never get to go, which also resulted in giggles from the kids. I could hear the built-up tensions and feelings releasing through the laughter. Yesterday when Sarah again got upset about Amy being in the bathroom, I quickly pointed out that it was actually Purple Cat in line next and then many other animals were still in line. Sarah immediately shifted to play mode and all was well, only this time I was never going to get my turn. Even Olivia, our real cat, got in line in front of me!
I hope you are all well and don’t have to wait too long for the bathroom.
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