May 5: Sleeping, Inquiring, and Potatoes

Last Sunday Sarah needed to sleep A LOT to recover from the energy output from tech week and the performances for the musical. She napped after breakfast. She napped after lunch. When it was time to wake up to get ready for her piano recital she kept asking for one more minute. Then she said, “no, no, I’m too weak to go on.” We debated about letting her skip the piano recital, but she had been practicing her pieces so often and was so good at them and, and, and. It was a tough call, but in the end she did wake up enough and get in a dress. She did a beautiful job at the recital, and then took another nap when we got home. She was probably napping by 4pm. We had a party scheduled for 6pm to celebrate all of her accomplishments and Amy’s art show. At 7:40 Sarah was still completely out, batting nary an eyelid when we checked on her. Since we had to wake her to take her medications anyway, we did wake her in time to be part of the party while she had dinner. And then she promptly went back to sleep!

Sarah did seem quite congested on Sunday and I was concerned that she got a cold after pushing so hard for so long with the musical. But, it turns out it was just her usual seasonal allergies. Since it was a beautiful day we forgot that at this time of year we have to keep the windows closed. Spending the night in her room with the windows shut and the air purifier going made an enormous difference and she was in great shape Monday morning, eager to see her bus driver and go to school. 

I have started appreciating how often Sarah asks all of us how our day was or how a trip was or a certain activity. She has been doing this for a while, but I think she is doing it more often now. She models for me how I could have more space to ask such questions when Carl comes home. Sarah is often eager to know about Carl’s day, how his rowing went, and what he had for lunch. 

Not to be outdone in showing Carl some love, for months now Amy has been constantly reminding him that he is boring, old, and a potato. She comes up with new and creative ways to share this message and we all share lots of laughter around it. 

This weekend we are all having Dad Weekends. The girls and Carl are having a weekend without me while I’m visiting my dad, stepmom, and brother - with an added bonus that one of my aunts is visiting too. 

Just as Sarah needed to recover her energy after the intensity of the musical, so did I. I took naps and enjoyed some time reading on the couch. I also realized I wanted to cut back on more of my teaching and administrative responsibilities and those changes are now in progress. People often ask what I will do with my time now that I’m not seeing clients and if I cut back on teaching.  I will breathe more, notice my surroundings more, and not be so busy that I end my days exhausted. For a long time I loved doing it all and so even if my days were packed I was still thriving. But now, maybe as I come into my own boring old potatohood, I don’t want to be doing all the things anymore. It’s just time for a change, and maybe that will lead to some new thing or maybe it won’t. For now I’m loving slowly clearing our house from years of clutter that I had no time for. And reading! I love reading and want much more time for that. There is also still plenty to do to keep everyone fed and in clean clothes and where they need to be when they need to be there. 

Lots of love to you all, especially if you happen to be a boring old potato.

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. 

March 31: Florida, alligators, and Easter

 We are flying home today after a wonderful spring break in Ft. Myers, Florida. One day Sarah told Carl that he was wearing a sleeveful shirt, in contrast to her own sleeveless shirt. She also happily wore her new socks with foxes on them every time she wasn’t in flip-flops or barefoot.

We spent many hours on the beach and at the pool. The wind was quite strong a lot of the time, especially on Thursday when we went to Sanibel Island. That day Carl and I knew we needed full vigilance and one-on-one attention if the girls went in the water. Sarah opted to stay sitting in the sand. Amy wanted to be in the waves, which were the biggest and most sideways we had seen. Carl went with her and they had a great time getting moved down the shoreline by the waves. They would walk about a block or two away from where I was sitting to enter the water and then get out three blocks away the other direction. Even though Carl was with Amy, I kept a close watch on both of them. On their last excursion they decided to go a bit farther before getting out and were surprised to discover that instead of the current easily bringing them towards the shore as it had been, it suddenly wasn’t. They had to work a bit and swim like they meant it to get in. By that point I was starting to wonder and get grumpy, thinking they were just staying longer for fun but also contemplating what I would do if they needed help. All was well and they did get out so we could make the long drive in heavy traffic to get off of Sanibel. That night I was up for a while imagining all of the ways things could have gone wrong, feeling all of the fears belatedly. 

When we go on vacation, Sarah often suggests getting flowers for me, because we did so once many years ago. It has thus become tradition to get a bouquet that we can actually keep out in easy view instead of hiding it in a cabinet so our cat won’t eat it. Amy promptly pretended to be a big cat trying to eat the roses and then hopping off the counter with her cat butt held high. 

One discussion ended in tears of laughter. We were talking about some friends we could maybe visit briefly this summer. Carl said he thought the kids were about Amy’s age. I said, “Oh, I think they are a bunch older… like 13.” I meant it honestly, not as a joke, but then collapsed in deep laughter given that Amy is 13!

Sarah was in fine form a few hours after having a big meltdown that Carl fielded while Amy and I were beachfully unaware. It was helpful to have Sarah in her sparkliest mode while we waited at a restaurant for a long time. We knew it would be a long wait but I underestimated how much I should have bundled up given the breeze. I was freezing. I was also grumpy because that is sometimes what I do when things don’t make sense to me. The restaurant didn’t take reservations but you could call ahead to get in the queue. We did. They said the wait would be two hours but to show up in one hour. Why?! I cannot comprehend the reason I needed to be there in the chilly breeze instead of snug in our place a short drive away. While I was being cold and disgruntled, Sarah was doing her version of cartwheels and running around with her arms stretched out, saying she was a super hero. During dinner, which was delicious enough to make up for the wait and incomprehensibility, the table next to ours emptied and Sarah found it hilarious when the staff cleaned the table and the food on the floor. She was laughing so hard she could barely get her words out. 

Yesterday we took an airboat ride to see alligators! We saw so many alligators of so many different sizes. We saw a large one snapping its jaw, we saw all sizes swimming and sunning, and Amy and I were beside ourselves when we saw a cluster of babies. In the gift shop Sarah was a goof, hiding in a rack of shirts so all we could see were her legs and feet. After that adventure, Sarah wanted to nap, so Amy and I went to the ocean. Amy was her usual mermaid self, and the waves were back to their normal rather gentle selves. Once we got cold we made our way to the hot tub and pool. Amy then made two new friends, much younger than herself. I think they were five. All of them had a great time, and the parents kept thanking Amy because their kids were having such a blast. 

Easter morning began as most vacation mornings, with Sarah sleeping in all the way to 6:30 and Amy sleeping until 8. Luckily Sarah didn’t notice anything odd as she crossed the living room to get to our room to hang out, talk about foxes, and watch her show. At 8 I told Amy there was a mess to clean up and she got a knowing gleam in her eyes. Amy gracefully found many jelly beans, plastic eggs, and chocolate eggs while leaving many that were in plain sight for Sarah to find. Carl Bunny hid items in varying levels of difficulty from over easy to eggspert. The final hardest items were hard for me to find too. Once I saw them I left them for Amy to find. They were some of the best hiding spots I have ever witnessed, including a sparkly pink foil wrapped egg nestled in a pink rose. 

May you find all of your eggs.

March 24: A Big Week

This was Amy’s big week, starting with her birthday and ending with her talent show at school, for which she was an organizer and performer. She had rehearsals during and after school, and then the performances were Friday night and Saturday morning. She and two friends did a gymnastics routine, elegantly avoiding any collision with the grand piano that was on the stage. 

Monday was a big day for all of us. It was my shared snowy birthday with Amy and it was the usual packed Monday with Sarah’s piano lesson, Amy’s art class, and Sarah’s evening rehearsal. I received a wonderful massage that thoroughly ironed me out, and then had lunch at a favorite restaurant with a favorite friend. Amy’s dinner was one of her favorites, but not immediately. When Carl picked Amy up from art class they somehow got on the subject of broccoli pizza. He made her broccoli pizza as a joke, with a huge broccoli stalk on top of a piece of cold pizza. Then he helped her assemble her actual dinner of a taco. Just as he was making her 3D pizza, she was drawing a picture of broccoli pizza for him. Since she doesn’t like broccoli, this seemed like a gross creation from her perspective, but the rest of us thought it looked tasty. 

As I continue the process of closing my massage practice, I have been emptying my office. I’m feeling quite pleased with my inspiration to change our family room around so that there is room for my office desk and chair in a corner with a window in the front and to the side. This is now Amy’s art desk and I spent hours organizing materials, moving them to new locations and sharpening tons of colored pencils, and making piles of things to donate. Amy loves her new desk when our cat actually vacates the chair long enough for Amy to occupy it. 

We are having a lovely visit with Mom-Mom and Pop-Pop, complete with snuggles, talk about foxes, cat videos, and a failed attempt at making spectacular Easter eggs. I saw a video online about swirling food coloring in whipped cream and putting the hard-boiled eggs in that to make them beautiful and swirly. Epic fail. Some of them have tiny tinges of green, blue, or red. But mostly they have slight tinges of brown. Nothing is vibrant, swirly, or dramatic. 

The biggest thing on my mind and heart is rehearsals for Sarah’s musical. I am wishing I had said no to the whole thing as soon as I learned the rehearsal hours and that I would be her support person. Monday she lasted all of 20 minutes before wanting to be done. She hadn’t gotten a nap so perhaps I could have predicated that she wouldn’t last long. But the show is a month away, the dance routines are fast and complicated, and she never wants to stay the whole time at rehearsal. I felt so drained and awful about it all on Monday that Carl took Sarah on Thursday, with the explicit goal of lasting the whole time. He talked to her a lot about how if she actually wants to do this thing she needs to be at rehearsals, but that she can still change her mind if she isn’t having fun. She continues to insist that she wants to do it. Thursday they did persevere and she made it through. Carl is taking her to rehearsal this afternoon, which will also be a challenge. It’s not late at night but she hasn’t made it the whole three hours since her first Sunday rehearsal. When we try practicing the dance numbers at home she gets tired and whiny and doesn’t want to do it after just a few minutes of the simple moves. We have yet to get to the speedy complicated moves. I feel like we are in way over our heads and I just want to somehow get to May and maybe miraculously this will come together. But it won’t be a miracle. It will be us working our butts off along with Sarah. Part of the hard part is just keeping Sarah in the right mental and emotional state to do this. I feel so tense and anxious about this that I don’t feel like a good helper at all. Tomorrow I start a zoom support group for parents like me who have run Son-Rise Programs, so we want to be in that mindset but have challenges as all parents do. I certainly have a challenge and certainly want help to keep myself mentally clear. Basically, Carl and I realized we need to keep working towards the goal but always with the flexible ease of being willing to have Sarah drop the musical at any point. But whenever she starts protesting I get all tense too. This is hard. I know that we can do hard things but I’m not sure I can do this hard thing.

March 17: Realizations and Celebrations

This week has been full of realizations and celebrations. As Sarah and I drove home from rehearsal on Tuesday, not making it to the end of rehearsal and only making it as long as we did because I let Sarah look at pictures on my phone while I stood in for her and took notes on blocking, I had a realization. I was contemplating my stress around rehearsals and my judgements of Sarah. For a nanosecond I let go of the judgement and really just felt love and appreciation for Sarah. In that precise moment she reached over and gently rubbed my shoulder and then gave my arm a kiss. I do not think the timing was coincidental. I think it was because I got clear and she could feel that. For all that I sometimes may think she is unaware of what is going on around her, what if the opposite it true? What if she is hyperaware of the nuances of people’s feelings and thoughts, so much so that it is too much to manage? In the old days in the Sarah-Rise room I certainly noticed the correlation between my energy and clarity and Sarah’s responsiveness to me. I am ever striving to be more clear with my love for Sarah and this was a good reminder that it is a self-serving endeavor as well. I actually get more of the connection I want if I truly let go of needing her to be anything or anyone other than who she is. 

The celebrations for Amy’s upcoming birthday have begun! Friday after school, two of Amy’s friends came over to help her decorate the cupcakes I had made, and they did an amazing job. They cut open many of the cupcakes to hide caches of decorative balls. Or, as Carl and I discovered, two of them were filled with candy eyeballs! Why did we happen to pick the only ones with eyeballs?! Using modeling chocolate, one cupcake sported a cat butt. Or at least that is what they were calling it. Amy made a topper that looked like a black cat, and other cupcakes were topped with paw prints, rainbows, or sprinkles. 

Friday night we had pizza and started watching a movie. With Sarah, it usually takes two or three nights to watch a movie and we still have to encourage her to be quiet. I got a special dessert from Whole Foods since we were saving the cupcakes for Amy’s parties. The dessert was underwhelming, but having a candlelit moment with Amy and I singing "Happy Birthday" to each other was heart-filling. 

Amy’s first party was yesterday at Urban Air, a trampoline park with a zipline and obstacle course. She had a great time and played hard. Normally napping is against her religion unless she is in the car. A minute after I started to drive home, she was out like a light. I took a circuitous route home to ensure that she got a nap if she decided not to continue it at home. In actuality, she did nap at home too, as did the rest of us. I think we were all out for almost two hours. 

Almost every morning when Sarah gets on her bus, I hear her saying, “I went to Jump again last night!” I keep meaning to tell her driver that I assume that is a made-up trampoline park or something that he mentioned, but that she hasn’t ever been to a place called Jump. At least tomorrow when she tells him she went to a trampoline park, it will be true! She jumped a lot and had a great time. 

After our collective naps, we prepared for party number two. Amy invited a small number of friends to join her for dinner, a movie, and a sleepover. One of them gave her a bracelet with various word-beads. All of the words described Amy, and her friend explained all of Amy’s wonderful qualities. I love how sweet, kind, and loving Amy’s friends are. I love how they see her and I love that she shows up as her real self with them. It is beautiful. 

Amy had requested tacos for dinner so I made the customary array including a vat of guacamole. Amy loves guacamole so an entire avocado’s-worth goes in her taco. After dinner and a round of cupcakes, the girls settled in to watch the second Hunger Games movie. Meanwhile, Sarah said she wanted to hang out with Carl. I folded laundry and enjoyed hearing Carl and Sarah in her room playing their guitars. They sang about foxes, about Not a Boxes, about blue hats and green hats and purple cats. At one point Sarah started saying she was Adrian from Bandits on the Run and that her string was breaking. When the Bandits had their Pittsburgh concert, Adrian’s string did indeed break or come loose and yet somehow he miraculously fixed it within seconds while still strumming. 

Sarah continues to love foxes, including Freddy the Fox, as she has named the small fox emblem  on Carl’s winter coat. When Gregory was with her on Friday, he spent half an hour creatively coming up with new responses every time she asked “what is a fox?” It was beautiful to behold such dynamic presence and fresh energy around a topic where I can stagnate. 

When Anna was here on Wednesday they created cue cards to help Sarah with the musical when she has to be onstage paying attention to, and reacting to, the scene. Anna translated each actual scenario into something Sarah would have a real reaction about, such as things pertaining to her bus driver. Brilliant! 

Lots of love to all of you. May you feel celebrated for exactly who you are.

March 10: Biking, Bandits, and Bears

Sarah rode her bike!! By herself!! Without training wheels and without Carl holding on!! For seconds at a time! She pedaled a bit, touched her toes briefly to the ground, and pedaled more, repeatedly for several seconds!!! As Carl and I celebrated her we looked at each other and affirmed our motto regarding Sarah, “it’s not if, it’s when.” 

Sarah loves album covers and her latest love is the New Republic “Native” album with various animals including what I think is an owl, a buffalo, and a mountain lion. Sarah really wants there to be a bear. As we talked about it one day and she pointed at one animal I said, “I think that is an owl.” She responded, “maybe I will call it a bear.”

Foxes are Sarah’s biggest new love. I’m not sure what kindled her interest. I know a few weeks ago when her bus driver sneezed they had a good time pretending it was because he was allergic to the elusive attic fox as they pretended to drive through an arctic jungle. Now Sarah loves saying the word “fox.” It is the first word she says when she wakes in the morning or from a nap. She follows it by asking me, “what is a fox?” Sometimes I ask her what it is. Other times I come up with various descriptions such as, “a mammal,” “a woodland creature,” or “an animal with a fluffy tail.” When Anna was babysitting on Wednesday, I was in the kitchen and only half paying attention to what was being said, but I heard Sarah say “Exit has the letter x… can you think of any other words with the letter x? … FOX?” It was such a hilarious and beautiful set-up that Sarah created to lead to her favorite word. 

Roughly eight years ago Sarah was evaluated by the public school system to determine her placement in a classroom if she attended public school. That wasn’t the path we took for her but those records are part of her IEP which is renewed and revised yearly. The IEP is new each year but the evaluation hasn’t been repeated until last week! And that was only because we asked for it since it is needed for her to have a supports coordinator in place for when she turns eighteen. I had to fill out many forms too, along with an autism scale questionnaire. I hate such forms and questionnaires that somehow take my wonderful sparkly amazing daughter and put a negative slant on her abilities or lack thereof. The question I really couldn’t stand, but had to answer, was for the autism scale so I had to rank her as “never” up through “frequently” with options in between. The statement to rank was “understands why people don’t like him/her.” What the actual fuck? Firstly, do people not like her? I’m not aware of it beyond how one could generalize that nobody is universally liked, but why would you even say that? Secondly, if someone doesn’t like her, I hope she doesn’t know it!! And what are they assuming about who she is that there are things a person couldn’t like and she would know what those things are?! This was just the most egregious of the questions. I’m glad to leave it in my rear view mirror and not look back. 

Amy had the first of many upcoming birthday celebrations, enjoying her Birthday Bash Sleepover at Anna’s. When Carl went to get the girls yesterday morning he was greeted not by Amy, but by Effie from The Hunger Games. Amy was incredibly made-up so she didn’t look anything like herself but was all Effie. 

We had a wonderful week of concerts. On Monday Carl and I saw Bandits on the Run at Club Cafe. The girls couldn’t attend because of the age restrictions, but I recorded some songs and the girls watched their own virtual concert last night. Sarah quickly got up to dance and then grabbed her own guitar to jam along with the Bandits. For those who may be new to my updates, Adrian from the Bandits used to volunteer in the Sarah-Rise program. What is impossible is that that was roughly twelve years ago! 

Friday night Carl and I went to a Josh Ritter concert. It was just Josh solo rather than him with his band as we had seen him in Philly. He was playing songs that are works in progress, along with the usual favorites. It was a great show but the venue isn’t one I would go to again unless it is a favorite artist. It was at the City Winery and the tables are packed very tightly so good luck if you have to get up to pee. Also, to allow everyone to see and not have their back to the stage, everyone is sideways to the stage so you have to twist to see. My neck was not happy after 90 minutes of that. 

Anyway, yesterday I had a wet drive to see my dad and stepmom and brother in Delaware. It rained across the entire state of PA all day long. At least I had good music to listen to, playing Bandits on the Run and Josh Ritter as the miles sped past.

March 3: Rehearsal Stress and Screams

Remember when I wrote I was having more relaxed space for my nearest and dearest? I’m not sure where that space went. If part of that newly acquired space was due to my expectation of a more open schedule, then perhaps it is no surprise that a completely packed week of work (despite some cancellations and no-shows), plus piano, rehearsals, art class, and Carl being away would not contribute to a sense of spaciousness inside me. Perhaps it was also that Sarah and I got our periods one day apart. Whatever the reason, Sarah and I had many screamy moments together. And we always bounced back in relatively short order, as we do. 

Rehearsal last Sunday went well enough, until Sarah decided she was done and was having none of my trying to prolong things. She did even lie down on the floor in protest in front of everyone. In the past somehow those prone moments always happened in the hall when it was just us. Luckily I was able to get her up quickly, by acquiescing to her demands. This is not how I want things to go. We left and I was very grumpy. As we walked to the car Sarah kept apologizing to me, and yet clearly wasn’t able to rally to stay longer in the rehearsal. At least on Monday and Tuesday after rehearsals, which we also left early, I was able to focus on the good job she did while she was there instead of focusing on what we were missing. 

Perhaps it is too early to predict any desire to participate in musicals next year and the year after, but I am not sure I can handle it even if Sarah wants to. I have myself feeling very tight and stressed about the whole thing and responsible for making it happen. In theory I understand that me being a tight ball of stress about all of this doesn’t help anyone, but understanding that and relaxing are two different things. Realizing that part of the issue for the evening rehearsals is that Sarah’s internal body clock still tells her that 8:30 is bedtime, I have made it my mission to gazooble that body clock. Instead of napping only on weekends and rehearsal days, I am encouraging Sarah to nap daily and then doing my best to keep her up until 9:30 or 10. Or even anything beyond 8:30. Eventually rehearsals will go till 10. Right now they go till 9:30 but we never make it that long. Eventually when they do full run-throughs, we will have to make it. And the performances will certainly go until 9:30 or 10. 

Sarah loves rings but sometimes plays with them or takes them off in anger or takes them off prior to leaving for school. One morning she was removing her rings to get ready for her school day and one of them slipped and bounced away. She said it rolled under her bedside table. She was very upset. I was very upset. Her bus was due to arrive soon. I promised I would keep looking even after she left for her day. Somehow, miraculously, I did find it. . . inside her spider man slipper!! I wish I was keeping a written tally of all of the places I have found her rings because the list is long and impressive. As the saying goes, it’s not lost till mom can’t find it. 

The people who started The Son-Rise Program recently released a documentary, linked below, called “5 Days to Live.” I don’t know if you remember almost two years ago I was sad because Bears was quite sick and expected to die soon. Well, he didn’t! He is still alive and thriving. The documentary goes through his journey around a severe cancer diagnosis and being in hospice, through his experience of turning that around. The beginning is also about his and Samahria’s journey with their son that led to The Son-Rise Program. I highly recommend watching the documentary. It is beautiful and inspiring. When I remember some of the perspectives they share I can even breath a little more easily regarding rehearsals for Sarah’s school musical!

May you find all of your metaphorical rings no matter how sneakily they hide.

https://5daystolive.com/full-length-documentary/

February 25: Brought to you by the letter C

This update is brought to you by the letter C. C for Covid. C for construction. C for car. C for cuttin’ a rug.

Sarah didn’t have school on Monday because of President’s day, but she did have the sniffles so I tested her for Covid and that is what she had. Before testing her I had napped with her, our foreheads touching! And yet, miraculously, I continue to test negative. Sarah was quarantined through Friday and we all masked. Luckily her only symptoms were congestion and a bit of a cough in response to the congestion. She was heartbroken to miss school, especially her bus rides, but otherwise she handled the week well and enjoyed multiple naps per day.

There has been a ton of construction going on in our neighborhood lately as the city replaces lead water pipes. Wednesday night when I got home from seeing a client (masked of course), there was hardly anywhere to park because of all the cones and people from other streets parking on my street. I thought it would be a great idea to save the few remaining spots for other people while I parked in our backyard and charged my car. I didn’t realize that the next morning before I needed to leave for teaching, our street and alley would be packed with construction vehicles so that asking them to move so I could retrieve my car really didn’t make sense. No problem, I thought, I’ll just walk a few blocks away and get an uber. I wasn’t thinking about how my phone only seemed to have SOS mode, so that when I tried to summon an Uber, I couldn’t. As I quickly retraced my steps to take Carl’s car and make him bus to his destination, I saw a neighbor friend and called a hello to her. She asked how I was and I ranted about my situation. I wasn’t expecting a solution, but she offered that I could take her car! As I have noted many other times in my life, it really works out well in surprising ways to share the details of my problems with others. 

Sarah’s school allowed her to attend the semi-formal dance last night even though she had missed school on Friday. I know some schools have rules about such things so I was relieved she could attend because she was really looking forward to it. The flyer for the dance gave specific rules about how to dress, including that girls must wear dresses (not too short or tight or with holes). They said we could submit a picture if we weren’t sure something would be ok. I sent a picture of Sarah wearing a brushed velvet long-sleeved white shirt with black dress pants. I explained that she is really not a dress-wearing kid. They said her pants and top would be fine. Looking back on that, I imagine the person I emailed must have wanted to laugh at my concern because clearly she was presentable and nothing was too tight or too short. They also clearly weren’t enforcing any of the rules. I attended the dance because I knew Sarah might want to leave early and to be her support person if needed. I was that old fuddy-duddy mom being shocked at kids these days!. The tightness! The shortness! The sunglasses in a room so dim I could barely get a good picture! The music that was too loud and un-danceable!

Before the dance Sarah and her friends met at one friend’s house for pizza and extra dancing and pictures while the parents enjoyed hanging out too. I feel so lucky to be part of this group. Sarah now has a group of friends! She really belongs! In a way I didn’t know was missing until we had it. Seeing her at a table with her friends at the dance warmed my heart to no end. And seeing them all greet each other and enjoy being together is beyond compare. I also now feel like I have a parent group pertaining to Sarah that I haven’t really had before. As I was the only parent at the dance, it was fun to text the others updates about what was happening. Our girls were the first on the dance floor! And there were times they held hands to dance in pairs or a circle. This is so much a dream come true. A dream that I didn’t let myself even notice because it truly would have been ok if it didn’t happen. But oh how wonderful to feel like maybe Sarah has a group that could be her group for the next few years and maybe beyond.

Yesterday was a big day because before the dance we went to Chuck E. Cheese to meet the local Higgy friends so Amy could hang out with other kids with scoliosis. Amy had a great time and even got to see her Schroth therapist who showed up as a surprise for all of them, having worked with most of the kids. Sarah had a great time too, mostly watching other kids and games. There is so much flashing sensory input I always feel a tiny bit worried about her having a seizure in the evening, which I also worried about given the lights at the dance, but thankfully all was well. I enjoyed talking with the other parents, one of whom I hadn’t met before but we realized that Amy and I were always leaving Schroth appointments as she and her son were arriving! Carl is away on a skiing trip with friends so he was not part of our big day, but was having a beautiful day of his own. Since he is away, Amy went to friend's house for a sleepover last night because Sarah and I were out late. The sleepover had a theme of Hunger Games and a good time was had by all. 

A week ago I deleted my massage website. I had a tiny pang, as I do with many moments of realizing that chapter is over, but it’s not a pang of wanting to continue. It’s more a pang of farewell to a thing that used to be more meaningful for me, but isn’t my thing anymore. The timing was notable, without my even intending it to be so. Two days after I deleted my massage website, Websy Daisy began creating my website for Watching Sarah Rise. Eventually it will have links for pre-ordering the book, but I don’t have those yet. I do however have a finalized cover! And you can see that on the website. I absolutely love my cover. It is a picture we took of Sarah, but the publisher tweaked the lighting.

Love and health to all of you.

https://www.watchingsarahrise.com

February 18: The End of an Era

This has been a monumental week, although in paragraph form it will seem short. 

On Tuesday Carl and I had one of the best days of our lives. After the girls were on their way to school, we drove to Delaware for a short visit with my dad and stepmom. Then we drove up to a hotel in Philadelphia, had a delicious dinner in a restaurant, and arrived just as the doors opened for a Josh Ritter concert that had general admission. That meant there were no reserved seats - no seats at all actually. We were standing at the very front, as close as a person could be! And because it was Josh Ritter, it wasn’t even too loud at all. We didn’t need ear plugs. At most we were ten feet away from him. Unbeknownst to me, people buying tickets online were invited to submit a dedication that Josh might read during the concert. So there we were, smiling so much our faces hurt, and then Josh read Carl’s dedication to me!! And then after the concert the person behind us said she happened to record that moment and sent us the recording!! And then as we left the venue we were given two free Philly pretzels. If you are from Philly, you know how awesome such a gift was. Earlier in the day I had been saying that to make it an absolutely exceptional day I should get an email with my possible cover designs. I did in fact get that email with possible cover designs as soon as we got back to our hotel after the concert!!! I mean!!! Can you even believe such a perfect day?! The next day we enjoyed a short walk with Carl’s cousin before driving home in time to meet Sarah’s bus. 

In other news, I have come to the end of an era. Just are surely as I knew 26 years ago that I wanted to go to massage school, I now know it is time for me to close my practice. I have juggled many balls for many years and it is time to put some down. I will miss my clients and the relationships built over many years. Some of my clients have been with me since 2000 when I started my practice, sticking with me through my Alexander Technique training, and through my maternity and hipternity leaves. But it is time to be done. I can already feel myself breathing more fully and having more space for those nearest and dearest to me, even though my schedule has yet to actually slow down. It is the promise that it will that helps.

Is there a word for the surprise of realizing you won’t in fact get to relive any earlier moments of your life? I think some part of me always expects that I will do it all again, like watching a movie a second time. I am now slightly startled to realize that such a big chapter of my life is over, and that I won’t be going back and doing it again. Perhaps this just goes with getting older and I am surprised that such a thing is happening to me.

Now about the children...

Last Sunday Sarah had her first rehearsal learning choreography for All Shook Up. She did beautifully, and I also asked the director if it could work to have some of the other students give her tiny tugs to help her get where she needs to be in a timely fashion. He said that would be fine if we need it. Sarah did want to be done before the rehearsal was over but somehow we were able to take enough tiny breaks to have her persevere. It is ever an exercise in keeping my own equilibrium, or at least not getting too off balance. 

Amy has really been impressing me with how she takes responsibility for wearing her scoliosis brace. I still have to nudge her to do Schroth exercises, but even that feels like it is edging into the realm of her taking more ownership over it. I have been considering locating an old-fashioned corset so that I can maybe experience what Amy lives within 18-22 hours per day. 

Yesterday Carl and Amy had a wonderful time going downhill skiing while Sarah and I took naps and read books and watched tv shows. Then Sarah and Carl and I went sledding for a bit. Sarah made some snow angels, but the snow wasn’t the right consistency to build any creatures. 

Love and free Philly pretzels to you.

February 11: Going Really Well/Not-Well

Rehearsal on Tuesday was simultaneously not great and really wonderful. How can something be both? Well, at first glance, it did not go well because Sarah was wearing her new windshield wiper shirt to which I had attached letters spelling out “windshield wipers.” She was so distracted by her love of the shirt and the letters that she did not seem to be taking in any of what the director was saying. When she did sing along a tiny bit, it was when the tenors or altos were singing, though she has been cast as a soprano. She was concerned that the letters on her shirt were coming off or she wanted to take them off. I was stressed. I knew she only needed to be there for half of the rehearsal because she was only in the first song, but we didn’t even make it through that portion of things. Sarah was tired and kept coming over to me or I would go to her if she spoke. We went into the hall twice. I wanted her to recoup and finish out the last ten or twenty minutes. She was not recouping. At one point in the hall she started to go fully prone in protest. I quickly told her she didn’t need to do that and we could go. She got up. I collected our things and we left. I was not very relaxed and she could tell. She was apologizing to me. I was apologizing to her. We made it to the car and then I realized. . . she had actually handled that whole thing incredibly well. For a night when she was distracted and not on her game, she kept her requests to leave quiet, she easily went into the hall with me twice. She didn’t actually scream on the floor. She didn’t disrupt the rehearsal. So really, it all went so well for not going well. Fingers crossed that today goes more smoothly. We did learn things for future rehearsals. Sarah needs a longer nap time, meaning I can’t have other things I am trying to do because she naps best and longest if I am next to her. She needs a shirt that isn’t distracting. Hydration may help.

For her birthday Sarah received a large lollipop and Friday night she delighted in licking it while singing the lollipop song. Meanwhile, Amy is being consumed by The Hunger Games, which she has been listening to as an audio book. Both girls are slightly consumed by their new phones. We got them phones because Amy’s iPod was on its last legs and I was increasingly wishing I had a way of communicating with her outside of school hours when she might be waiting for me to pick her up or waiting for the bus in the morning. Also, a few weeks ago there was an incident in Pittsburgh where a girl with special needs was dropped off for school but the school wasn’t in session that day. The girl was missing for many hours. I realized how terrifying it would be if something similar happened with Sarah, because her school isn’t easily near places where she could go for help. I wanted to have a way to track her and to call her or for her to call me in an emergency. We have Sarah’s phone programed so it won’t work for anything except to call us during school hours. So far, as soon as she walks in the door after school she takes out her phone and starts playing on it before she removes her shoes. We do limit her daily time with it so I’m ok with the magnetic pull it has as soon as she gets off the bus. 

Carl and Sarah practiced “Hush Little Baby” yesterday with Carl on the guitar and Sarah on the piano. Then Amy joined them and they played and sang songs from the musical “Six,” which is Amy’s new favorite soundtrack. Not to be outdone, our cat decided to nibble on the small puppet stage that Amy built out of a box, complete with theater curtains. Those curtains are apparently mighty tasty. 

I hope all of your things go well, even if they are not going well at all. May they go really well for not going well if that is the case.

February 4: Birthday Celebrations Galore

Sarah has a life-changing new skill: swallowing pills! For the past many years, twice a day, she has opened six capsules of an anti-seizure medication to sprinkle on a small serving of yogurt. When we travel this means I always need to obtain yogurt or a similar vehicle for the tiny balls Topiramate. One evening this week as Sarah was about to do her capsules, I saw an image of her swallowing them instead. I casually suggested the possibility, and she did it! There was no learning process. She just knew how to do it and did it. No more yogurt as a vehicle. No more tiny balls of medication pinging over the table as they miss the yogurt dish. This shaves minutes off of Sarah’s breakfast-eating time, which really helps on school mornings.

Sarah’s week was filled with more birthday celebrations. On Wednesday night we had pizza and cake with our local family members, and then last night we went to Max’s Allegheny Tavern for a dance party and German food with friends and family. Many of Sarah’s school friends were able to attend and my heart was full. There have been so many times in my life when I feel like a puzzle piece clicks into place. The first time was when I met my own best friends when I was 4 and thought, “Finally, here are the friends I have been looking for.” Another time was in my college dorm hallway talking to Carl before we were officially a couple. Witnessing the kindness and sweetness of Sarah’s classmates, I feel that same clicking feeling of, “Sarah is really at the right place” for school and with a peer group. 

For Sarah’s cakes and cupcakes I made fondant and decorated it using food coloring and edible markers. She loves tunnels, windshield wipers, red Xes, green arrows, and yellow Xes, so that was the theme for her cakes. She loved them and could have happily looked at them and pointed to her favorite things for many minutes before we served slices. If anyone ever needs a recipe for a delicious vegan, gluten-free cake, I recommend Chocolate Covered Katie’s recipe, but don’t follow the suggestion to add xanthum gum if using gluten-free flour. That makes the batter and result weird. Speaking of windshield wipers though, Carl was able to procure a t-shirt with windshield wipers pictured on the front and that has been one of Sarah's favorite presents. She wants the words “windshield wipers” to be on it too so today she and I will buy some iron-on letters and add them to her shirt.

If you want a great venue for a private party, I highly recommend Max’s tavern. If you want a good time on a Monday, I do not recommend getting a thyroid biopsy. That was my Monday. For a couple of months I have felt like something wasn’t quite right with my thyroid, as if I could feel it physically. After seeing my doctor, I was scheduled for an ultrasound this past Monday morning. They found two nodules and wanted to biopsy one of them right then and there. Of course there was the wait to contact my doctor and get the prescription because we live in a ridiculous society of insurance red tape. Also, who wouldn’t want to wait for an unspecified amount of time for an unpleasant procedure? When it was finally time I was numbed and sampled. I was so tense, filled with fear and adrenaline and holding myself completely still, that after it was done I was a crying, shaking mess. Luckily the next thing on my schedule was exchanging massages with a friend. Instead of an exchange, my friend just worked on me and I can’t imagine a more healing recourse after the trauma of the biopsy. The good news is the biopsy didn’t show anything. The bad news is they didn’t feel that they got quite enough of a sample, so I have to go back in two months for a repeat experience. Except this time I will take something to help me relax and Carl will come with me. 

For the rest of Monday I felt rather beat-up and delicate. I needed many good cries. For one of them Sarah came into my room and noticed that I was sad. She immediately came over to rub my shoulders, touch my head, gather my used tissues, and call “Aunt Jaguar” to come help. I have no idea who Aunt Jaguar is, but since Carl was working from home, Sarah returned with Carl Aunt Jaguar, who also listened to my tears. By Tuesday I felt much better. 

January 28: Rehearsals and Ridiculous Car Business

Rehearsals for “All Shook Up" have begun! Last Sunday Sarah and I were at her school for three hours. The first hour was a talk by the director about all of the various nuts and bolts of the show and program ads (required for participation), and rehearsals. The next two hours were a read-through of the whole thing complete with clips of the musical numbers from the broadway show. In hindsight, Sarah and I probably didn’t need to be there for the whole read-through. It did give me a sense of the show as a whole, but I’m not sure how much Sarah absorbed of that. And it was a lot of sitting still and sitting quietly. Since Sarah doesn’t have any lines aside from singing in some of the songs, there wasn’t anything for her to actually do that day. She made it through remarkably well. There were only two times of screaming prone on the floor, and Sarah waited patiently for me to be done each time. . . 

Of course it was actually her on the floor, but those moments didn’t actually last long even if they felt like it to me. Within about five minutes she regrouped and was ready to go on. Luckily those moments, while possibly heard by the director and other students, weren’t seen. It was a good learning experience for me to realize that she can totally hit her limit and it doesn’t mean we have to abandon ship. It means she needs five minutes. That is what I have explained to others but can sometimes forget myself. 

I had told the director ahead of time that at the beginning of rehearsals sometimes Sarah can have times of overwhelm and big feelings including screaming because everything is new, but to not make assumptions based on those first times about how the whole thing will go. Similarly, when all of the cast members went around giving introductions, I spoke for Sarah because she was feeling a bit overwhelmed. I shared that she had been in Peter Pan, Jr, and High School Musical, Jr. and to please not worry based on the first day about how the whole thing would go. The first day can feel like a lot. 

Oh, and when Sarah was sitting on my lap at one point and reached to put down her binder, we both tipped over onto the floor. This was in full view of everyone. That was a stellar moment and I wanted to be swallowed up by the floor. Instead, we righted ourselves and I just closed my eyes and rested my head on Sarah’s back. 

The next two rehearsals were weekday evenings so Sarah and I took naps as soon as she got home from school, had an early dinner, and went to her school. Those rehearsals went much more smoothly because they were learning the songs and some of the scene blocking. Sarah told me she didn’t want me sitting next to her on the bench so I sat to the side of the room. While we need to practice word clarity (and that may come in time anyway), I could hear her singing on pitch. For the times when she is supposed to get up or sit down, she did so. I was so impressed watching her be mostly quiet or participating and attentive for the better part of two and a half hours. There were a couple of moments the first night when she wanted to be done, but those upsets were smaller and we made it through. 

Sarah had a mix of school days that were great and others that were challenging. Apparently she has a harder day when her lead teacher isn’t there, which is the same as it was at her previous school. On one of her hard days, she had to eat lunch in her resource room instead of the cafeteria because she didn’t stop putting a pencil up her nose. Oh dear. But that is also sort of hilarious. On one of her great days, she worked at the school coffee shop and made sure tumblers were full of ice for making smoothies. 

While there may be times where Sarah seems on the younger side of things and sticks a pencil up her nose, she has also been seeming more grown up, which is fitting for one about to turn seventeen. She clearly, calmly, and politely told me she doesn’t like it when I tell her to get more soap for handwashing and she doesn’t like it when I nudge her (verbally) about getting ready in the morning. She also wanted to start using her alarm to get up in the morning. That is all exciting and wonderful. And it is tricky to figure out how to step back from my nudges but still have her get ready in time without getting distracted. Our first morning of trying to do things differently was a disaster and I was more tense than ever and so was she. Carl pointed out that this is a normal phase when you are trying something new. Anyway, the second day went more smoothly. I still needed to be in her room talking to her to get her to get out of bed. When her alarm went off she didn’t get out of bed to turn it off. She just called for me repeatedly to tell me that her morning sound was going off. I did set a timer on my phone during breakfast so I could just point to that instead of telling her how much time was left. That did seem to work. 

Amy’s MAPS tests went well enough and she enjoyed extra playdates since we didn’t have swimming (because of Sarah’s rehearsal) and her art class hasn’t started yet. For one playdate she and her friend sat on large bouncy balls that were wrapped in blankets that then tied over their own legs and they race bounced around our downstairs on their giant bouncy butts. Amy also dressed as a Victorian vampire as a test run for a possible Halloween costume. She feels like she is late in deciding what to be for Halloween!

Carl and I had rather stressful weeks, but we made it through, and had a night out last night with his family while Sarah and Amy were at Anna’s for Sarah’s birthday bash sleepover. This morning we will go out for a breakfast date. 

My week felt ridiculous in terms of car stuff. I took my car to the dealer for a two hour software update on Monday and sat there working on my laptop while it happened. Except that after three hours it wasn’t done. So they gave me a loaner car and sent me on my way. The update would apparently take six hours, but then there was a glitch and they had to contact the company. So I didn’t know when I would get my car back. For most people with a loaner car this wouldn’t be a big deal, but my car had an appointment Friday to get snow tires at a different location! Luckily I was able to get my car Thursday night on the way to rehearsal. Friday I took it in for snow tires… and it turns out we didn’t get the right size shipped from Tirerack, despite Carl talking extensively to the tire people to make sure we got the right thing. So now I need to make another tire appointment. 

Yesterday Carl played guitar and sang the windshield wiper song with Sarah. It is a song they made up because of her love of windshield wipers. When we dropped the girls off for the sleepover, Anna had streamers with pictures of windshield wipers, red Xs, green arrows, stop signs, and zzz trip - all things she loves about her bus rides.

Anyway, I hope your weeks and windshield wipers are going well.

January 21: So Many Snow Days - Sort Of

There was only one day of in-person school last week. Monday was a holiday, Tuesday was a snow day, Wednesday was a “flexible instruction day” because of the cold, and Friday was another day for schooling at home, which is what a Flexible Instruction Day means. Having assignments to help Sarah complete took me right back to the pandemic days and I marvel that we all survived that time. She still has some worksheets to complete today to finish what was sent home for Friday. Thursday was the only day for in-person schooling and Sarah was so excited she was bouncing on a large exercise ball while waiting for her bus. On the days when she learned that she had to stay home she was very upset, sometimes screaming and crying for half an hour over the upset. Friday was doubly hearbreaking because not only did she miss the rides with her driver but she also missed gym class, which only happens on Fridays. Amy was delighted by the whole situation because it meant postponing MAPS tests, which are standardized tests that she does not enjoy. Friday afternoon the girls did an at-home gym class together to make up for Sarah’s missed class. 

Luckily Thursday was the in-person day because that also meant the girls got to have their fancy braids that Anna did for them Wednesday evening. Sarah’s was a braid that started on one side and went over the top of her head to the other side then wrapped around again. She looked like a princess. Amy had two braided buns. 

Thursday evening we had swimming and while we were waiting for the shower I made the grievous error of checking my phone and informing Amy that she had a virtual day on Friday. Sarah is no dummy and she inferred what that meant for her, even though I hadn’t yet heard. She was very upset in the locker room and shower. I wanted to be swallowed up by a black hole, as the tiny space was packed with people and I felt like I had brought this upon us. Somehow we survived without Sarah having a complete meltdown. Her swim teacher stayed with us even though she was dressed and could have left. That was so kind it gets me teary just thinking about it. 

Speaking of getting teary, last night Sarah had a birthday party to attend and it was also a sleepover. Sarah’s first sleepover at another kid’s house. This was a really big exciting deal. When I dropped her off I felt teary about how sweet and kind the other kids were as they hugged Sarah hello. They all seemed delighted to meet me as Sarah’s mom. I felt so good about our choice of Sarah’s school because these are her resource room classmates. Unfortunately, Sarah then got sick after a couple of hours and threw up, so I picked her up and she didn’t have the sleepover after all. I don’t know if she had a tummy bug or if she wasn’t handling the dairy from the pizza and ice cream. I do limit her dairy intake because it can produce too much phlegm, but it’s usually not instant and I do let her have some on special occasions and usually she is fine with it. So I’m feeling regretful that maybe I brought this upset upon us by not thinking to provide non-dairy alternatives. But maybe it was going to happen no matter what. Sarah’s classmates were concerned about her wellbeing and one of them was by her side rubbing her back, caring for her with the host mom until I arrived. That was also so very sweet. 

Sarah was glued to my side for most of last night in bed (she seems better this morning) since Carl and Amy were away for the night so they could get a full day of downhill skiing today. Last weekend Carl got cross country skis for the girls and took them out for their first experience of it. Sarah had been on cross country skis on Carl’s back when she was a baby, but I doubt she remembers that adventure. I do not think I will ever cross-country ski or attempt downhill skiing again because I’m too worried about any fall messing up my artificial hip. I’m sure many people ski and fall with new hips, but I don’t think that will be me. Instead I have just been bundling up to stay warm inside and outside. I got a new shark blanket bag thing that is both warm and hilarious. Alternatively, I often wear two sweaters or a bathrobe and hat on top of my regular clothes. 

Yesterday we went to see The Red Dress exhibit at the Frick Art Museum. The Red Dress travelled all around the world so that different people from all over could embroider it. Pittsburgh made its own Calico Dress with contributions from many local artists, including Carl’s mom and the mom of Amy’s bestie. Both dresses are beautiful and if you haven’t already seen them I highly recommend going. The exhibit runs through January 28. The museum provided paper and colored pencils so visitors could make their own designs to post on the wall. Amy drew a cat face in a heart and we put it on the wall. Now she can say she has a piece of her art in the Frick Art Museum. 

I hope you are all well and warm.

January 14: Snow Delays, Sledding, and Schroth

Amy graduated from Schroth therapy!! She still needs to do the exercises at home, but she doesn’t need to go in to the Children’s hospital every week or two to see her physical therapist. This is huge. We are both so happy about it. I like her physical therapist very much, but it is a relief to no longer need to figure out childcare for Sarah for an hour on Wednesday afternoons, because the timing didn’t work well to bring her along to the appointments. Amy is ecstatic that she won’t miss any more science classes or rides home on the bus with her bestie. I am thrilled that I can start seeing some Wednesday afternoon clients or have that time to work on other things. I have a lot of book related tasks that need attention these days.

Amy has started wearing her scoliosis brace over her regular shirt so if she isn’t wearing a sweater then it’s not hidden at all. I love that she is this emotionally comfortable with it in general and especially at school. I think it has really helped to attend the Higgy events and zooms for kids with scoliosis. She also charts how much she wears the brace and that has meant I don’t need to remind her to put it on after she takes a break. I still remind her to do her Scroth, but she has gotten much speedier with that, timing the intervals between each exercise so the whole thing doesn’t take an hour. 

This week, every morning when Sarah waited for her bus she did a verbal adaptation of Dinosaur vs the Potty by Bob Shea. Shea has several dinosaur books where it is the dinosaur vs something and involves lots of roaring interspersed with things related to the title. Sarah said “Dinosaur vs waiting for the bus” and interspersed her roars with various sentences about what she was doing. I wish I had recorded her but I was too busy laughing. Mainly her activities were exercise related, either with a large exercise ball or doing her version of gymnastics. 

Tuesday’s bus situation was delayed because of the weather. When I woke I could hear the frozen precipitation hitting the windows so the first thing I did was check the news website for the list of school closures. At 5am there were 4 schools listed as delayed by 2 hours. Over the next couple of hours over 220 schools were added to the list. I got a text from Sarah’s school announcing the delay right as she was about to get dressed in her uniform. I contacted her driver, figuring he might be half way to our house by then. He wasn’t, but he was glad to get my update since he had not yet been notified. Amy’s school followed suit a bit later. Unfortunately, Amy’s driver was extra late because of going back to pick up two kids who had missed the bus, while simultaneously sending the Facebook message group of parents a reminder that if kids miss the bus then their parents need to drive them. Um? If that is the case then why did the driver go back to get those kids? On the one hand you can see that as nice. On the other, you can realize that that meant Amy and her bestie were waiting for half an hour in the snowy/rainy cold and wondering if their bus was actually coming. They were about to give up and contact their own parents for a ride when the bus finally arrived. 

I am yet again a genius in a small way regarding making hydration a game for Sarah. One of the movies she likes to watch is Baby Babble 2 and it has many transitions between scenes. I suggested that she take a drink of water every time there is a transition. Not only does she do this, but she often repeats her favorite scenes thus getting extra sips. 

This weekend Carl’s cousin and her family are visiting and enjoyed playing The Fairy Game with us. That is the cooperative board game that I turned into a drinking game, where everyone has some of their water when the Old Man Winter card is drawn.Yesterday despite the cold and wind, a good time was had by all sledding, followed later by a snowy nighttime exploration which Sarah deemed “hunting for the night bear.” Amy and one cousin made good use of my new shark blanket-bag thing, hopping around in it together so it really looks like a shark has eaten one or both of them.