February 4

Sarah is now officially 11. I always start thinking of her as her new age about a month before her birthday so when we get to the new age it doesn’t feel new. Her actual birthday was also Grandparents’ Day at her school and Grandpa was in town to join her!

At the moment Sarah is in the hospital finishing her 23 hour EEG, which actually takes less time despite its name. This is just another post-seizure test regarding the seizure before Christmas. She and I Ubered to the hospital yesterday because she loves Uber rides. It was a novel experience to come for an overnight stay when it wasn’t an emergency. The process of getting the EEG wires attached was again fraught and awful. She was screaming and crying and scared and fighting it. I was holding her still with the help of a nurse. It felt awful to physically restrain her when she was so upset, even though it was best to just get it done. Then they wrapped her head and her wires in such a way that she couldn’t mess with them and could be mobile in her room. She had a special backpack that she learned to take with her as she moved around the room or to the bathroom.

Carl had the car yesterday because he and Amy did a special ballet thing at Phipps. Amy got to learn a dance from the lead ballerina in Swan Lake. Then she allowed Carl to participate too and they learned a dance together. When they came to join us in Sarah’s hospital room they performed the dance and it was super adorable. Carl then stayed overnight with Sarah while Amy and I came home. I think all of us were in bed by 8pm. When Amy woke up the first thing she requested was that I continue reading Harry Potter!

When all of us were in the room together yesterday, Sarah tried to do some things she wasn’t allowed to do, like leave the room. While I was just telling her no and getting mad at her, Carl had her pause so he could review the rules with her. After he said she wasn’t allowed to leave, she asked “why?” That is actually a huge deal that she asked that. It shows huge progress overall in her processing and understanding and expressing herself in the present moment.

There are so many things that can seem depressing/hopeful depending on how one looks at them. It is as if they are separate sides of a curtain that can flip quickly in the breeze of one’s perspective. It is so frustrating that Sarah doesn’t listen or heed what we say so much of the time. It is so hopeful that she did listen in that moment and ask why. It is depressing how untypical she is compared to other 11 year olds. It is so amazing how far she has come and that she is learning to swim and she takes gymnastics and she can speak and have conversations and be playful and sparkly and funny and read and write. I can’t stand her stubborn temper. I am so glad she is feisty and determined and brave. I am a terrible mom for yelling and getting tense. I am a wonderful mom for creatively trying different things to help her during the EEG placement. It is not great that we fight a lot. It is amazing how deeply we love each other and it is wonderful how we come back to that love repeatedly even after we yell. It is frustrating how Sarah is a mean older sister so often. It is beautiful how open she is to our coaching her on how to be a kind older sister. My life is harder because of her challenges. My life is so rich and amazing because she is exactly who and how she is. The curtain flickers like a reversible piece of clothing. When I am fed and watered and rested it is easier to focus on the positive side, just as the kids can so quickly switch from being hangry to happy once their basic needs are met.

Amy moved up another level in swimming! She is now a Turtle 2. She can really swim!! With practice she will get more confident and capable, but she can really swim. She swam half the length of the pool by herself and then her teacher let her ride on his back while he swam them both back to where Sarah was. It was so adorable. Amy was scared to swim so far but she did it. Then she was all tuckered out. As with each previous time when she moves up a level, she is feeling scared and uncertain. This change also means she and Sarah won’t be in the same class anymore. They were already bending the rules to let them be together before this, but now their activities are too divergent. They can at least be one after the other. We will get home at bedtime on Friday nights but it is worth it to stay with the same teacher. We love B and he has been amazing with both girls.

Over the summer we had a leak in our kitchen ceiling. The plumber fixed the leak right away but we didn’t want to be too hasty with the rest of the repairs so we are dealing with them now. To redo the wiring and lighting situation our whole kitchen ceiling had to come down. Much of our kitchen is spread around the downstairs. All of the things that remained in the cabinets will have to be washed, despite the careful draping that the workers did. I won’t deal with that until after the new ceiling is up and painted. It is amazing to me how incapacitating it has been not to have a fully functional kitchen. It’s not just the food preparation. I have felt like I couldn’t function fully in life. I couldn’t possibly clean some upstairs rooms when my kitchen is compromised! We have gone out to eat way more than usual. I was able to cook for a couple of days and things are currently usable, butI think tomorrow they become unusable again. As I write, some bit of ceiling still in place fell, probably due to my using our washing machine, which is upstairs. I’m excited that I won’t have a garbage bag taped over the hole in the ceiling and I really like the people doing the work, which is no small thing. I am also eager to have everything clean and back in place.