September 24: Behalf

I almost feel like I should write two separate updates because part of what I have to share is light and funny and part of it is so tragic it should stand alone. And yet, perhaps we need the lightness to survive the heaviness. 

The tragic part does not directly involve us, but Carl and I felt it keenly. It was a little too close to home. There was a school bus (a van in size) going to Serra Catholic one morning and it was involved in a terrible accident. The bus made a left turn at a difficult intersection where there is no traffic light and it was difficult to get an opening. As they turned they were hit by a car that was probably going a little too fast for the area. A fifteen year old girl was killed and three more students were injured. It breaks my heart to think of how the girl’s parents are feeling and how it was to get the news. I can only imagine what it was like for the students on the bus. How are they ever going to feel safe riding to school again? 

Serra Catholic was one of two schools we chose between when picking Sarah’s school for this year. She goes to the other school. But, one of her best friends from her years at St. Therese goes to Serra Catholic, and many other graduates from St. Therese go there. The girl who was killed was good friends with Sarah’s friend. I haven’t told Sarah about any of this because I don’t think she knew the girl and I don’t want her to be scared or upset. I hope this is the right decision. Carl and I felt rocked by the news, and it felt more scary to say goodbye to Sarah the next morning as she boarded her bus. We reevaluated our common driving routes, realizing we could make changes to eliminate some left turns that aren’t at easy intersections with lights or four-way stops. 

So now a pause to send love to the families of Serra Catholic and a breath to reset in the present moment.

The pool was closed on Monday, but at least I found out by calling instead of showing up to swim. Sarah was upset, but moved through her feelings more quickly than last week. As is common when she has feelings, she inquired as to how the panda [picture] on her wall was feeling. I said the panda was sad on her behalf. “Behalf" was a new word and new concept for her so it took a few tries to use it correctly. She has asked me a few times, “How is the panda feeling about my behalf?"

I told my trainer about her question because we joke about how I often feel like a confused panda when I am at the gym trying to do what my trainer has demonstrated. I told him the story about Sarah’s behalf questioning as I had my back on the floor and my legs on a large inflatable ball that I was rolling towards me as my butt was raised. I said that my behalf was having some trouble, and we both had a good laugh. 

Yesterday I drove a distance away from the house to release a trapped mouse into the wild. I did what I always do. I got out of the car and opened the trap. The mouse did not follow the script though. Instead of running away into the grass, it ran toward the car! It proceeded to hide by the wheels no matter what I did. If I scared it away from one hiding spot it just ran to the other side of the tire or to a different tire! I had to wait several minutes and then I didn’t see it anywhere, so I hope it did run off rather than hiding so well that I squished it inadvertently. I also saw lilacs blooming! I didn’t know that could happen at this time of year. 

Amy had some homework to do yesterday that in theory did not have to take over the day, but in practice dominated much of her time. I think what often happens is that when she gets stuck, her mind wanders to other things and she spends many minutes not doing anything but also not getting the help she needs. After she used up her daily allotment of screen time, I asked her to come out of her room before I approved more time. That is when the tears came and the explanation of being stuck. After a few minutes of discussion we realized that she needed to reread an article in order to write her summary paragraphs. That took a little bit of detective work but she found it and we read it together with the “help” of her stuffed animal who put herself squarely in front of the computer screen and made it impossible to read! Then the stuffed animal gave many kisses which helped loosen Amy’s tension. The stuffed animal even wrote a few sentences under Amy’s guidance, but they were really too focused on cats and had to be deleted. 

Speaking of cats, I have accidentally broken Amy’s heart a bit. I learned that a new acquaintance was hoping to adopt a cat and I introduced her to a foster cat of a friend. Amy has often helped me cat sit for this foster and loves it dearly. So she is quite upset that this cat will most likely be adopted. I know it is the best thing for the cat and the other humans involved aside from Amy, but I am chagrinned to be the cause of Amy’s anguish. 

One night Carl was fixing dinner and was about to ask me to do something related. Instead he asked if I would hop on one foot while tapping my nose, which I, of course, did. One has to be helpful in such matters. Amy thought this was hilarious and the moment quickly turned into a dual performance of Carl and Amy hopping and tapping their noses. I’m sure a similar moment occurred in your homes just yesterday!

September 17: Reconsidering my Perspective after a Stressful Week

Overall, the week felt stressful. I second-guessed myself and judged myself, replaying some interactions with people and wishing I had handled my part of things differently. The days felt extra full, because most of them were. That’t not necessarily bad, but it gave me less time to pause and regroup. 

We always go swimming on Mondays, but Monday when we arrived at the pool, there was a sign on the door announcing that the pool was closed for the day. Argh!! Why that information couldn’t have been conveyed earlier in the day via an email is unknown. Maybe it was a problem that arose just before we arrived. Amy and I were disappointed. Sarah was disappointed and then some, screaming for many minutes. As we drove home Sarah asked to call Mom-Mom to tell her. Mom-Mom sympathized with our woes and remembered a time when she had been all ready to go swimming and her pool was closed. This news helped Sarah shift out of her misery. She does after all delight in things going wrong, just mainly when it is for other people or in books. 

The week also had more things for parents to attend or take kids to at schools. Amy and I went to an event showcasing possible after school activities. When I had asked her a week ago if she wanted to attend she said yes, but when we walked in she instantly deflated. She found nothing of interest on the paper listing the various options, none of her friends were there, and we left after ten minutes. Friday afternoon was a nearly identical experience at Sarah’s school. I met her at the end of the day so we could attend a meeting about the spring musical. As soon as she saw me she started complaining that she was tired and wanted to go home. I was disappointed because if I had known that was how it would go, I would have let her come home on the bus. As we walked to the car she changed her mind and agreed to go meet the director, even if we didn’t stay for the meeting. I’m glad we did that tiny thing because now the director knows who she is. If she wants to do the musical she can be in the ensemble without needing to audition. At Sarah’s old school her support teacher attended all rehearsals with her, but at her new school that level of support is not provided. Understandably because it is going above and beyond to stay after school so often. So if Sarah decides to do the musical then I will attend rehearsals as her support person, although part of me thinks I’m the worst option for that role because she will voice all her discontent with me in a way she might not with someone else.

Wednesday night Carl went to an event at Sarah’s school that was just for parents. He met her teachers and saw her various classrooms. While we can laugh that this kid - who didn’t start talking till she was four and a half - now talks perhaps too much… it is actually a bit of a problem to solve. At home we may find it annoying when she interrupts conversations or talks while we watch movies, but we have become so accustomed to it that it’s just part of life. We now realize that we need to help Sarah develop the skill of being quiet and talking when it is her turn but not talking on top of whatever else is going on. When I’m in my bubble at home then it’s easier to just focus on being delighted with Sarah’s Sarahness. When I am reminded of just how different she is from her age peers and when I feel like I need to change things to help her navigate the rest of the world more successfully, that can feel weighty and overwhelming. I can feel sad and as if something is wrong. It’s an interesting line to walk to believe there is nothing wrong and to work towards change. I know that was our whole Sarah-Rise premise, but it is an attitude that needs frequent refreshing. 

In other news, my office continues to be freezing and while I’ve been told someone will look at it, nothing has changed. Sometimes I wonder if I’m being overly sensitive about this thermostat issue, but I think I’m right that it has never been this bad in my whole time renting this office space. On Friday my client, who has never in 14 years asked for a blanket, asked for a blanket!! 

While I have been grumpy and stressed for much of the week, I can also see that perhaps it’s not the fault of the various appointments, closures, screams, or things to do. It is actually how I’m thinking about them or what I’m believing they mean about me. I haven’t shifted much of my internal landscape with this realization (or remembering it for the umpeenth time), but it does help to remember I have some freedom and agency. Although then I am also highly skilled at judging myself for not being happy already! So, I’m focusing on breathing and being present.

Some small delightful things from the week. . . 

Sarah has been enjoying remembering Sandra Boyton’s Moo, Baa, Lalala. As with so many books that she remembers from her younger years and wants to read, we gave that one away. She found a YouTube video of someone reading it so that has been almost as good as owning it. She loves the page about dogs going “bow wow wow” and has called herself “Baby Bow-Wow.” With her phenomenal memory for details and books, she somehow remembered that in a Clifford book there is a page with a large print, “BOW-WOW!” She found the book and the page and has been enjoying it all week. She has also spent time in her room reading Blue Hat, Green Hat, and with each page she explains how each animal is dressed properly except the turkey. I love hearing, “the elephant is dressed properly, the moose is dressed properly, the bear is dressed properly… the turkey is not dressed properly!”

Amy didn’t have school on Friday so she didn’t have to miss school for the appointment with the orthotist to add padding to her scoliosis brace. The padding isn’t to make it more comfortable. It is to put more pressure in certain areas. After the appointment we went to the Square Cafe for lunch, delighting in a return to a past tradition of going out to eat when she has a day off or a half-day. 

Love and hugs to all of you.

September 10: Appointments, Events, and a Malfunctioning Thermostat

This past week had a lot of appointments. On Monday the girls and I drove home from Philadelphia after a short but lovely visit that morning with my dad, stepmom, and brother. That short visit was also a good reminder of how Sarah is notably allergic to cats other than our own even when she is on her usual daily allergy meds. 

Tuesday morning I took Amy to meet with a neurologist, at the recommendation of her orthopedic doctor. Since she has hyper mobility in some joints and has scoliosis they want to know if there is an underlying cause that might influence other things later in life. The neurologist didn’t see anything concerning, but did suggest that we see genetics. That feels slightly stressful, perhaps because it brings back memories of when doctors sent us to genetics regarding Sarah. I’m not sure what I’m scared of, but I feel unsettled. Maybe underlying it all I’m always scared of pain, struggle, and death. Anywho, on that cheerful note… 

Carl got home from his adventures in the Dolomites and Venice, bringing delicious chocolate, a sketch book for Amy that she is rapidly filling, and a striped gondolier shirt for Sarah. It is wonderful having him back, especially with a plethora of school events occurring. Thursday morning Sarah’s school had a St. Anthony program celebration at 8am so Carl drove her to school and stayed for the celebration. That was fortunate because if I had gone I could only have stayed for about 15 minutes before needing to leave to get to the massage school on time for teaching. This upcoming week also has multiple events for kids and parents - at least three events between the two schools, in addition to the usual weekly Schroth. For that I have to leave before Sarah gets home, but I need someone to be with her when she arrives so I’m glad that Carl can often work from home on those days.

Wednesday I picked up Amy early from school to go to Schroth therapy. It was an appointment for reassessment, as required by insurance. Amy has more range of motion in her back in some planes of movement, which the physical therapist said was good. Amy also has more stability in some ways, which is also good. And her wingspan is longer than she is tall, and has increased since she was last measured, which may mean she is in the middle of a growth spurt. That means it is all the more important to wear the brace and do the exercises. Wednesday I had two doctor’s appointments myself and all is well, but it was just so many appointments!

Thursday I picked Amy up from school at dismissal rather than having her ride the bus. When she rides the bus she gets home slightly before 5pm. But that day there was a BBQ at her school at 5:30, so basically if she came home on the bus we would leave home as soon as she arrived in order to go back to her school! My picking her up allowed for about an hour at home, during which time she did her Schroth exercises while intermittently playing with two friends who came over for that short bit of time. At the BBQ, I realized that Sarah and I could just make it to get her new glasses if we left right then. I arranged to have Amy go home with her bestie who lives a block away from us so that she didn’t have to leave her friends so immediately. Sarah was so excited to get her new glasses! 

Friday I collected Amy early from school again to go to the orthopedic doctor for a follow-up now that she has been wearing the brace for over a month. While the brace is mostly doing its job, the doctor wants us to go back to the orthotist to get a cushion of some sort put in the brace to apply more pressure in one area to straighten a curve more. So, more appointments. And then we will go back to the orthopedic doctor a month after getting the brace adjusted. Interestingly, when I was waiting in the school office to get Amy, someone I had never seen before asked if I was there to get Amy. I asked how she knew who I was there for. She said Amy looks like me. While I can understand someone thinking that if we are standing right next to each other, it amazes me that someone who only knows Amy and has never seen me before, could see me and know that I’m Amy’s mom. 

With a shorter work week than usual plus all of the appointments, plus two days when I taught, I only saw two clients! Given that my office is freezing, that was ok. I have asked for a new thermostat, but haven’t heard back from the building manager. What I know is that something hasn’t been functioning regarding the thermostat for the past year or so (after we got the thermostat unit currently in operation). The temperature is set at 76, but apparently it is 67 degrees in the room. It doesn’t matter if we have it set to cool or auto. And the office is humid so my salt lamp sweats a puddle on my desk and the doors stick. And yet it feels so cold that I need to wear long sleeves. If I turn the thermostat off completely then the temperature slowly goes up, but apparently that makes the office next door get too hot. How have I worked in this building for 14 years and am only now informed that the thermostat controls the temperature for the office next door?! And why is my space so cold and simultaneously humid?!

September 3: The Best Bus and a Stressful Airbnb

Sarah started tenth grade on Tuesday. I planned to get up at 5:05 so I could get her up at 5:25 with everything ready for breakfast and the cat fed. Her body clock decided that 4am made more sense as a waking time Tuesday and Wednesday. Wednesday she had a bit of phlegm and throwing up because of the phlegm. Luckily, when you start at 4 am there is time to move through feeling crappy and then feel good again in time for the bus. 

Sarah loves her bus driver and has been enjoying school. I had been so worried about what our new bus situation would be, given years long past when we had unreliable and ever-varying drivers. Last year we had an incredibly reliable and timely driver. I didn’t think it could get any better. In fact, we have just as dreamy a situation as ever!! Sarah’s driver this year (through zzztrip - the Pittsburgh taxi company) gave me his card with his direct number, he is a graduate of Sarah’s new school, and when he was a senior that was the first year the St. Anthony Program was established at the school. He was specially picked to be one of the students to help the St Anthony students feel connected and welcome. He loves Sarah’s enthusiasm about the drive and school and life. Sarah loves to tell him about her day and to do the red light dance when they have to wait at a light. She was delighted when they got stuck in the Liberty tunnel one afternoon because another car had broken down. I feel so beyond blessed to have such a wonderful bus situation to bookend Sarah’s school days. 

Friday after school the girls and I drove to Philadelphia. We only stopped once and I had made dinner packs so we could eat in the car. We made the best time ever, which was fortunate considering that we couldn’t get into our Airbnb. It was 9:30pm, we were tired. I have never had such a situation, but there we were. The code I had been given worked to open the dead bolt, but the knob was locked. I sent a message to the host, but I had no number to call, and there was not an instant reply to my message. 

I was upset and frustrated and confused. Sarah was ready to be done with the day so she proceeded to scream. A neighbor came out to ask what was going on. Finally, after being a tight and unkind mom, I got Sarah back to the car. I called my mom in tears. She and my stepdad hastily prepared an air mattress and sofa bed for us, and we settled in for the night. 

The next day I had a message from the Airbnb host, full of apologies and refunding that night. The knob was now unlocked. We were ready to try again, so mid morning we went back to the Airbnb. I told everyone to wait in the car because I didn’t want to get our stuff out until I was sure of the situation. Rightly so. This time there were large, loudly barking, jumping dogs on the porch right next to the door I needed to reach. The dogs looked like they could easily jump the railing to rip my throat out. I went back to the car and tried calling the host, but got no answer. Luckily, a few minutes later I noticed that the dog owner was now on the porch and the dogs were calm. I approached again and all was well. We got settled and then went out for lunch with my mom and stepdad, followed by a walk in the woods and ice cream. Whew! I have never had such a stressful Airbnb experience. 

We have had a lovely visit with my mom and stepdad. Before heading home we will also have a short visit with my dad, stepmom, brother, and uncle. When we get home on Monday, Carl will be arriving home after an incredibly beautiful and adventuresome time in the Dolomites. 

Overall the week went well but also felt generally stressful regarding parenting decisions. I’m working on keeping Sarah dairy-free to hopefully help her phlegm situation, although that may be impacted by one of her anti seizure meds. I tried lowering the dose but it didn’t seem to change her slight morning cough, which has been constant for months, and her nighttime startle seizures really increased in frequency. So I started slowly increasing the meds again. Each night I pray that she will sleep soundly. But each night I’m a bit scared. 

I worry about how I am parenting regarding Amy and one of her school friends. When Amy was maxed out with stress and feelings about her brace, aligners, lack of classes with her bestie, and missing school for medical appointments related to scoliosis, then she mentioned how the teasing from a “frenemy” in her friend group hurts her feelings. My inner mama bear was floored and angry about the things being said to Amy. I was ready to confront the situation head on but wanted Amy to have the chance to stand up for herself. She said she would but she hasn’t yet. And apparently there is still play and laughter with this friend so I’m not sure what to do. I did email the teachers. I can’t tell if this is bullying behavior or if Amy is actually content with the banter as long as she is feeling strong in other ways. And yet, I think the comments do not help her feel good. I will give it a bit more time before reaching out to the mom of this other kid. 

Sarah continues to love being the Blue Hat Green Hat turkey or elephant. My mom got a blue hat and green hat for her and Sarah especially loves the blue one. Meanwhile, Amy donned her shoe as a hat. Oh turkey! At least with all of the stressful moments, we are also still having lots of laughter and snuggles.