April 28: We Made It!!

We are successfully ALL SHOOK UP! The musical by that name is done! We made it! Sarah did a phenomenal job throughout an intense week of dress rehearsals and performances 7 days in a row, getting to bed so much later than usual. She had no spare time for anything outside of eating and sleeping when she was at home. As soon as she came home on a school day she took a nap (wanting me next to her) until dinnertime and then we scooted back to her school. She did a beautiful job with all of the performances, with her best run being last night - perhaps because she had two long naps during the day. Some of you may have questioned our sanity as you read about our struggles along the way… but! For this musical and her previous two musicals, when it all comes together it is profoundly incredible and moving. I always feel teary watching her dancing and doing the moves on stage. It is a culmination of the years of therapies and Sarah-Rise and the continued love and input from all of those who are closest to her. It is a culmination of so much hard work on Sarah’s part! What an incredible achievement for her to set a goal and upend her normal life for four months to make it happen, to wait (mostly) quietly and patiently for so many minutes while then being ready to go on and do her stuff when it was time. It is profoundly heart-filling to witness someone who walked at age 3 and talked at age 4 go up on stage as part of an ensemble to dance and sing her heart out. 

Amy commented that now she will actually get to see her sister again. During these intense rehearsal and performance days, Sarah would be on her way to school when Amy came down for breakfast, Sarah would be napping when Amy came home from school, and then Amy would be asleep by the time Sarah and I got home from rehearsals. Amy is about to start some after school activities, so it is perfect timing to wrap up the musical as my taxi services will be required for Amy, but in a less intense way! 

Mom-Mom and Pop-Pop drove out from Philadelphia to see the musical and they also got to attend Amy’s art show from the after-school art program she was part of for several weeks. Friday was an intricate dance of timing and coordination since Sarah needed to nap after school (my mom sat with her in my stead), but I needed to get Amy at her school so she could be on time for her art show. I got home with Amy and hopped out of the car so Carl and my parents could hop in the car and zoom to the art venue. I got dinner ready for Sarah and me and then we went to get her in costume, dealing with massive traffic jams. After the art show, Carl and Amy then came out to see the musical for the second time, eating dinner as they drove and taking a longer route to avoid the traffic that was slowing my progress. 

It was really meaningful having so many people come see the musical, including family from near and far, Sarah’s school friends, close family friends, and Sarah’s piano teacher. When one of her school friends was hugging Sarah and telling her how proud she was of her, I was all emotional and could easily have cried more joyful tears. It is a big deal to have a peer friend like that. We also managed to keep it a secret that Sarah's beloved bus driver would be in the audience last night. At the very end of the performance, all alumni who used to be part of the cast and crew were invited on stage, and that is when the bus driver (a crew alum) said hello to her. She was radiantly happy to see him, and she was excitedly talking about how she couldn’t wait to see him on Monday and tell him all about the musical! 

When we got home last night I sprawled out on the family room floor to give my body the message that we had finished our race. I had dreams about the musical and needing to be ready for it. I had to remind myself each time I woke that it was over and we made it. 

Today we have Sarah’s piano recital! Then we will celebrate all of the art, musicals, and piano recital with a party at our house at a reasonable hour. The cast parties after each musical performance were too late for our tired selves and wouldn’t have supported a lively connection with Sarah in the way we can do at home.

April 21: Meltdowns, Mom-Guilt, and Medical Appointments

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.

April 14: Sun and Rain

A week ago we were preparing for our Monday trip to Akron, OH to watch the eclipse in the hopes that the weather would cooperate and we could witness the totality. Monday morning we were on our way by 7am, laptops packed for any schoolwork on this virtual day made possible by the pandemic - meaning the kids didn't attend school in person but they had something they needed to accomplish. I think next year for Sarah’s IEP I want to add something so that Sarah doesn’t have to do anything at home or that I get to design something myself because she resists mightily most of the time no matter how small the task. I imagine that none of the teachers assigning things has any idea of the screaming and protesting that happens. Needless to day, Sarah did NOT watch the 2 minute video on the eclipse or answer the questions on the worksheet about it. Carl was successful in getting her to draw a picture about something from her spring break (she drew alligators), but then that paper traveled to and fro each day of the week, never being submitted. Anyway, we were on the road with snacks and meals packed in case traffic was so intense on the return journey that we needed to have dinner en route. We even had our small portable camping potty packed so we could be entirely self-sufficient if need be. 

We parked in a lot at a shopping center and had a looooong time before the eclipse. The girls and I went to Kohls in the hope of finding things Sarah needed for her costume for the musical. We found shoes for the costume and the girls each got something with their own money left over from Christmas. The rest of the time was spent with me searching in vain for beige tights and a beige leotard for Sarah while she trailed behind me, handling all that she passed and wanting to buy everything! Later I went to Walmart on my own, not daring to take Sarah there where she would want even more of everything. Luckily I found the beige tights and leotard-type thing in short order.

The eclipse itself was more exciting than I anticipated, especially the totality. We had chairs, glasses, and blankets. We were surprised by how chilly it got! If it had all been up to me I would have stayed in Pittsburgh. I’m glad Carl had a bigger vision than I did to make this exciting day happen. 

On the drive home we watched as the miles left decreased but the expected duration of the trip stayed constant. Since Sarah had rehearsal that evening we decided to go straight to her school, a decision we might not have come to if she didn’t have rehearsal. But it was such a good idea! It meant more miles but much less traffic. We arrived in time to go to a restaurant for dinner. Carl and Amy then ubered home while Sarah and I stayed for rehearsal. 

The other excitement from the week was the rain, akin to the amount of rain from last week that caused lots of flooding in various roadways. Thursday’s rehearsal was canceled at the last minute as we all got emergency notifications on our phones saying to stay inside because of the risk of flash floods. We actually did go out because we knew the area we were going to was not a flood risk, and we wanted to see Anna in an improv show. Sarah made it through part of the show sort-of quietly but then wanted to be done. Amy and I stayed while Carl and Sarah went out to play in the rain. 

If you heard screams Friday morning that was because Sarah’s school decided to have another “flexible" (at home) day so that people didn’t need to risk driving in flooded areas. Sarah was so deeply upset. She loves going to school, especially the rides with her bus driver. She loves Fridays because she has gym class. And she was extra excited to have a dress down day on this particular Friday. She screamed and cried hard for about half an hour. Meanwhile, Amy would have loved to have a virtual day but her school stayed in-person. After Sarah settled she opted for a nap and slept for over 4 hours!!! I think she wore herself out with the depth of her feelings. 

On the days that Sarah did have school she stayed in bed a little longer than usual but miraculously ate breakfast faster than usual. She was always ready before her bus arrived and to pass the time she pretended to climb mountains or be a cowboy or a circus clown or a gymnast. 

Morning and evening Amy can be found wearing her cat bathrobe that I got her for her birthday. It has a hood with ears and there is a tail at the back. If we say something she doesn’t like she presents her cat butt. She also loves snuggling with our cat while looking like a cat herself. Amy has also been creating more art with her face as the canvas. One day she drew a curved spine on her cheek and decorated it with green and white jewels, representing scoliosis-warrior colors. 

Sometimes it works for me to leave Sarah on her own at home or with just Amy at home. Unfortunately this seems to be less doable than it used to be. Sarah gets more upset more quickly if a parent or other grown-up isn't at home. On Friday I had something to attend twenty minutes before Carl got home. To her credit, Sarah went to Amy about feeling sad and Amy did her best to help Sarah. She helped Sarah find her phone so she could call Carl and find out precisely when he would be home. It was all ok, but I don’t want to put such responsibilities on Amy if I can help it. And yet, I am so grateful that Amy is who she is and can navigate such situations when she is called upon to be the older sister. 

April 7: Snow, Creativity, and Stopping

As is so common for an April morning, I am gazing out my window at snow. True, we are in the mountains of Pennsylvania, but still. Snow! Carl was thrilled, I was glad I still had my snow tires, and Amy was consternated. Sarah didn’t seem to mind either way. Yesterday Carl and the girls enjoyed a short burst of riding on a snowmobile. Amy likened it to a rollercoaster so I was hesitant to try. Carl reminded me that he was “the boyfriend who listened” about me not liking rollercoasters. It is true that after the one small rollercoaster he convinced me to try, he has never suggested or pressured me to ride one since. To his immense credit, he also stopped on the snowmobile as soon as I wanted to stop, which was after mere feet of riding. I will try again when there is more snow and no gravel peaking through underneath. I will try again because I have complete trust that he will stop if I say to stop. 

Speaking of stopping, I have emptied my office completely of everything that was coming home with me. Sarah helped since she didn’t have school. It was truly helpful to have an extra pair of arms and it was nice to have her company for what felt quite sad. I know it was my own choice to close my practice, but that doesn’t mean I don’t have some grief about it. 

As you know, Sarah loves getting red xes at tunnel entrances. She is also skilled at swapping new words into songs or lines from books. And she loves foxes. In the book Little Fox Goes to the End of the World by Ann Tompert, the fox goes to the island of the one-eyed cats. Sarah has started saying that little fox is going to the island of the one-eyed red exes. I adore this creativity that never fails to crack me up with surprised delight. 

Speaking of creativity, when the girls had their annual well-visits, this year it worked to have them at the same time. Sarah really wanted a paper gown with animals playing sports, as she wore many years ago for a check-up. The doctor only had plain blue gowns or gowns with pictures of kids. Amy promptly took a pen from her school supplies and drew a bear kicking a soccer ball on Sarah’s gown. The bear was wearing jersey number 17 to honor Sarah’s age. The checkups went well, and we learned that Amy is in the 98th percentile for height. She is not quite 5’8” but she is close. She is almost as tall as I am and yet I had another moment of not realizing her age. When I printed the guidelines to apply for the Creative and Performing Arts school, I highlighted the areas for grades 6-8. But she will be applying for grades 9-12! In my defense, she is in 7th grade now and has to apply in the fall of her 8th grade year if she wants to get in for high school. So the mistake could be made by anyone!

Sarah and I visited the Woodlands camp for her intake interview. This summer she will attend an overnight week-long summer camp all about music! And two of her friends will be there!! It will be the same week that Amy attends an overnight camp with her bestie. I’m sure the house will feel oddly quiet without them. But, if attending overnight is too much for Sarah then she can switch to being a day camper. I had been waiting for this interview before telling Sarah about the camp because I didn’t want to get her hopes up if they might be dashed. Hopes are now rightfully up and we are all excited.