Last Sunday after Sarah’s piano recital she slept for 13 hours! I woke her for her evening meds and some gatorade, but then she went right back to sleep. I was worried that she was getting sick and that it would impact her musical. She wasn’t getting sick! I think that long sleep was what she needed to fully recover from her seizure. If there was an impact to the musical it was that getting so much sleep set her up well to handle long dress rehearsals that pushed dinner and bedtime late. Not only did she handle all of that beautifully, she even got up before she needed to each morning and was often ready for school before the bus arrived. For most of the school year she has been racing to finish brushing her teeth and put on her shoes while the bus waits, so this was notable to be ready early.
Friday night and last night she had her performances of High School Musical Jr. It was so good! And she did a wonderful job! I was able to watch a dress rehearsal on Thursday and I recorded the whole thing because I was still nervous that something would happen to mess up the performances. What I learned at the dress rehearsal was that it was nearly impossible to see Sarah. She was in the far back left behind many people, some of them tall. There was one moment when she came towards the front for a few seconds. For Friday night we picked seats in the front right of the auditorium, hoping the angle would help us see her – it did! We saw a few more glimpses of her, but they were still incredibly brief. Last night we sat in the balcony and could see her almost all of the time she was on stage!
I know I marveled last year, but I marvel again this year that she was part of a musical. This is a huge accomplishment, a huge feat of focus and patience and participation with a large group of people. She learned so many songs and needed to do specific moves with them. A couple of her castmates had to tug her back onstage sometimes because she was positioned at the edge where a few steps to one side meant she was offstage, but that all worked. I’m moved to awe and teariness every time, especially when I think about how Sarah’s teacher attends every single rehearsal with Sarah to make the whole thing possible. That is so far above and beyond the call of normal teaching unless you are the director! That is an incredible gift of time and support. And seriously! Sarah was in a musical!!! For the second year in a row!! For all of the Sarah-Rise volunteers and Amy volunteers who made it possible for me to have more Sarah-Rise time, for all of the people who do unofficial Sarah-Rise time still, for the family and friends who give her time and space and encouragement… please drink this in as your accomplishment too! Look how far we came!!!! Do you remember when we were trying to help her learn to speak or sing along with us or copy physical moves or attend to an interactive activity for longer than five or ten minutes?! I know that was years ago, but still. Still! This is immense!
After each performance we came home with those family and friends who had come to cheer her on and had cake and ice cream. On Friday night I felt like I was in an episode of the Great British Baking show as I raced to finish frosting the cake in the five minutes left before we needed to leave the house. Amy laughed at me as I described throwing the frosting in the “squeezy bag” instead of “piping bag.” Sarah is currently all about the letter K for the Killers musical group. She likes to pose her body as a K and sometimes she calls me Mama K. So I piped a K onto the top of the cake. Later, Amy made a K out of candles propped against each other. Sarah was delighted.
I woke this morning to an array of cards for Mother’s day. Amy made a collage that is quite a work of art, and Sarah’s cards have some of her best hand writing ever. Carl’s card pointed out that not only have I done all of the things I wrote about in the Sarah-Rise book, but then I wrote about them and unexpectedly created Sarah’s favorite book. The only times she has been slow to get dressed for things this week was when she was immersed in reading my book draft! Amy is currently downstairs doing something in the kitchen for mother’s day and I’m not allowed to go in… she just brought me toast and scrambled eggs!
In other news, Amy and I met with an orthopedic doctor regarding Amy’s scoliosis. We had been warned by multiple people that the orthopedic doctors at the Children’s hospital are not known for their good client interactions. We lucked out and got a good one! He was nice and answered all of my questions. We didn’t feel rushed and we felt respected. And… Amy has to get a brace that she will wear at least 18 hours a day until she is done growing taller. We knew this might happen so I’m not surprised, but it is still a thing. We also have a prescription for Schroth therapy. The doctor said it hasn’t been proven to be effective, but there are also many people who say it is helpful. With that and the brace, the main thing they do is to prevent the curvature from getting worse. They do not undo the curvature. The doctor also wants us to see the pediatrician again and a neurologist to make sure there isn’t something systemic going on as the cause of the scoliosis. That has me much more nervous than needing the brace. Perhaps that is a gift. Now I think, “brace? No problem!” Just please let all else be well.
Amy got a bad scrape from a rollerskating fall when she tried going down a hill. Since she was only wearing a skort, when she fell on her rear there wasn’t much cloth on her legs to protect her. She got such a scrape that she stayed home from school on Wednesday, a very sad kiddo. Her best friend came over that morning and afternoon bringing little presents, but of course the best present was the visit. Amy’s mostly recovered now, which was especially great because she wanted to dress and move as a cheerleader last night for attending High School Musical Jr.
Some of you have kindly inquired about my book. I’m still waiting. I think it has been two weeks since they said I would hear in three or four weeks. That doesn’t stop me from slightly holding my breath every time I check email or from checking their website almost daily! I still have some small edits to make, so I’m trying to focus my energy on that so that if they ask for the whole thing I can send it.
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