Last Sunday night, Sarah had the first seizure she has had since being on anti-seizure medication. The first seizure in roughly two years. It lasted less than a minute and she was mostly herself afterwards except for having a headache. Her neurologist increased the dose of medication so I’m hopeful things are back under control. Many people asked how I knew it was happening. I honestly have no idea what makes me go from sleeping soundly to running into her room as fast as I can. I don’t know how I hear the rhythmic whimpers, but I do and I know what they mean. In the past it would take me a long time to settle back to sleep and the next few nights I would be on edge, as if my staying awake would somehow protect her. This time I didn’t fight my initial surge of adrenaline and didn’t try to fall asleep, which allowed me to calm myself more quickly and actually sleep. The next day I spent more time processing the emotions and fears from past seizures and was not on edge at all when it was time for bed. I reminded myself that even without medication she never had seizures two nights in a row and that when she has them they are short and she probably won’t die from one. I know there isn’t a guarantee about that, but it helped to talk myself through some rational points of view. So, after a huge adrenaline rush to start our week, we were all well and back to normal in short order.
The ring tone on my phone is the Tiny Chef singing, “If you’re happy and you know it, heat your oven to 375 degrees!” Sarah loves this and loves the picture on my t-shirt of the Tiny Chef holding a bowl of what Sarah labels mush. She loves Goodnight Moon and the bowl full of mush mentioned in the book, so she now likes to pretend to be the Tiny Chef making mush while singing about heating her oven to 375 degrees.
I’ve been working on a book about our Sarah-Rise program and sometimes Amy reads over my shoulder. She delights in the vignette’s from when she and Sarah were much younger. Last night she said reading my writing was like magic because it made her want to go play with Sarah. She was so excited to think about the new things they could do together. I’ve been slightly concerned about how Amy would feel about the book since it is so Sarah focused, so this was a nice moment to remind me that maybe it is all ok. Maybe even better than ok.
We have had some small but notable moments of success with saying “no” less often and with verbally acknowledging what Sarah is feeling. One reader recommended saying “I hear that you want… I hear that you are feeling…” and that has been helpful. Sarah was extremely impatient for Anna to arrive one morning and the fact that she had two minutes more to wait was intolerable. Since Amy was on a zoom call I was sticking closer to Sarah than usual to keep her quieter. Sarah and I stood at the front door together, her body bursting with desperation. I said, “I hear that you really want Anna here now. I hear that you are having a hard time waiting.” While we have tried saying similar things in the past, this specific language in this specific moment seemed to help. She rested her forehead against my chest and calmed while I rubbed her neck.
I have also had times when I needed to do something and couldn’t be with Sarah when she was upset, but I told her that I knew how she was feeling and she could keep expressing it. I told her I wasn’t ignoring her but that I needed to do whatever I needed to do. That seemed to help her and I felt better too. Carl had a successful moment last night talking with Sarah about different feelings and how sometimes people just want to be alone. He reassured her that she could go into Amy’s room later but that Amy wanted to be alone at that moment. She seemed to understand maybe a bit more than she has at other times.
Yesterday Carl and the girls went for a walk in the neighborhood. They came across an ancient relic: a payphone. Amy inquired as to what it was and was perplexed as Carl explained. It just didn’t make any sense to her with almost everyone now having a cell phone. What do you mean you need a quarter to make a call? What if you don’t have a quarter? It is amazing how quickly technology changes.
I hope you are all feeling heard, whether or not you have a quarter.
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