I’m stunned to realize it has only been a week that I am looking to summarize because the various emotional rollercoasters feel like forever ago, which I guess means I have successfully let go of the residue. Last Sunday Sarah had a meltdown in rehearsal that included full screaming in the gym in the middle of everything. In hindsight, of course, I could have handled many small things differently and that could have resulted in a different outcome. But, I didn’t. So there we were and I wished the floor would swallow us, but I forcefully propelled us out of the space and into the hallway, so the screams could reverberate more fully! Eventually someone encouraged us to go to the band room so we could close the door and sit down. I think that person expected that then I could be a kind and nurturing mom. I did not have that in me. I was crying too and when Sarah asked why I was crying I launched into my whiny/lectury mom self. Eventually we recouped and Sarah even joined in for the remainder of the rehearsal. The next morning I felt emotionally blah and recognized it as my bad-mom-guilt hangover.
Wednesday when Sarah came home from school, it was impossible for her bus driver to drop her off next to our house because there was so much work being done in the roads (lots of gas and water department work lately). I met her at the end of the alley and instead of skirting the edge of a deep hole, I took us the longer way around the block. It was a beautiful day and Sarah often likes to “go for a run” around the block, even if that mainly entails standing and looking at the world. All was going smoothly and amicably until we came to a “road closed” sign that had been put on the sidewalk because it wasn’t needed in the road. Sarah touched parts of the sign. Just as I was about to gently nudge her to keep going towards home, a construction worker nearby said she shouldn’t touch the sign because he didn’t want her fingers to get splinters or get pinched. Oh dear. As we learn from The Fantastiks, “to manipulate children, you merely say no.” As you can see in paragraph one, it’s not that I have it all figured out by a long shot, but in this moment I wish I could have just handled it by myself. Sarah did not like being told no and she dug in her heels and wanted to keep touching the sign more than anything in the world. I placed myself between her and the sign, but then her force got stronger. I felt desperate to get home and inside. As she fought me, I lowered her to the ground as slowly as possible. She took off a shoe and threw it. She was screaming. I didn’t know how to survive the moment. It was just all too much. Luckily, I had my phone and thought to use it. I told Sarah I wanted to send a message to a neighbor. I quickly texted one of our dear friends who lives across the street from where we were. I asked if he was home and available. Within a minute he was outside and that was enough to shift the energy so Sarah and I could move again. It is beyond words how meaningful it is to know I’m not alone in those moments when everything is just too hard. Once inside, Sarah let loose with more screaming. I’m sure she was beyond frustrated and upset. I was too. I just sat on the floor and cried. Then I called my mom because she doesn’t mind being a phone witness to keep us company through these moments and that helps me stay afloat. Within maybe twenty minutes I felt like I could listen to Sarah with kindness and snuggles rather than feeling mad at her. Then Anna arrived and listened to me compassionately while Sarah got a snack and watched her show. I felt supported near and far.
Amy had two medical appointments this week. The first was with genetics because her orthopedic doctor wants to know if there is an underlying connective tissue situation that would explain the scoliosis. All of the specialists say we are looking to see if there a connective tissue disorder. I prefer to say condition. Otherwise things can sound too scary. Every part of this process takes sooooo long. It was probably about a year ago that the orthopedic doctor said to see genetics. But first we had to see Amy’s regular doctor, who then sent us to a neurologist, who then sent us to genetics, but that was a 7 month wait to get an appointment. Now, we have to wait a month or two for insurance to approve the genetic doctor’s request for a blood test, the results of which will take an additional month or two. We also are supposed to follow up with a cardiologist and ophthalmologist, because that is just how they do things if you get sent to genetics. So many appointments. And so much waiting. And trying not to worry.
Amy had a follow-up with her orthopedic doctor on Friday and her scoliosis curve has increased but not enough to warrant surgery. So that is good, but it’s basically a race between the curve progression and when she will finish growing and how much the brace can do. So, more waiting and more trying not to worry. Meanwhile, Amy continues to handle wearing her brace and explaining scoliosis to those who ask with ever more poise, ownership, and confidence.
On a lighter note, last Sunday both girls helped Carl refurbish some kitchen cabinets so the mice can’t poop on the silverware and so there are drawers instead of just heaping piles of disorganization. I love my new drawers! On Friday night we went shopping for a chair and a half to replace a sofa that our cat has scratched down to the wood. A chair and a half is like a loveseat but a bit smaller and with only one seat cushion instead of two. The girls had a great time at the store. Sarah rode the escalators repeatedly and enjoyed the various striped fabrics. Amy fell in love with a very squishy, plush item that I don’t even have a name for. Sort of like a giant chaise lounge. It was all we could do to drag her away, but the promise of ice cream at Jeni’s helped. Then, yesterday Carl made rainbow bagels with the girls and Sarah enjoyed three naps. The naps were interspersed with Amy meeting with some Higgy (scoliosis support) friends and Carl taking Sarah to Aladdin’s for lunch. I was worried about the length of the last nap throwing off her evening sleep, but I needn’t have worried. When she finally did wake up she easily took a bath and washed her hair more effectively than usual. As Carl has to remind me, always trust the nap. Sarah finished the evening by practicing her piano pieces and singing “not a box” as Carl strummed his guitar.
Anyway, any good vibes you can send regarding Sarah’s final few rehearsals and her performances are most welcome. I feel a weight of anxiety about the week, especially with today’s marathon rehearsal including two run-throughs on the stage.
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