June 25: Appointments, Stickers, and Throwing

It was a quiet week. Amy started day camp with one of her BFFs. Camp was supposed to include daily swimming but then the lifeguards who had been hired didn’t show up. We have been told swimming will happen this coming week so our fingers are crossed. Sarah doesn’t have camp at the moment so had some times with Anna, some times with me, and some times with Grandpa. When she and I had time together one day we went for a long walk to a library in search of sticker that she had gotten the previous day at the library with Anna. She loved the sticker so much she kept peeling it off her shirt and resticking it, which of course used up all the stickiness. She began the same process with the replacement sticker so Anna used clear packing tape to convert it into a pin that Sarah could wear. They also made a placemat out of construction paper and tape to match the sticker, which is an LGBTQ+ Pride heart on a striped background. 

Sarah got her fourth Covid vaccine and had her annual audiology checkup. We also all went to the dentist, with Grandpa helping with transportation so Amy didn’t have to leave camp early. So we had our share of appointments. This coming Wednesday Amy starts Schroth therapy for scoliosis. It’s a specialized physical therapy that she will do at the Children’s Hospital. I will have to pick her up early from camp for that, so from the time I leave home to get her till I drop her off before heading straight to my office for my usual Wednesday evening client, it will probably take about 3 hours. We will do this therapy for 18 or 20 weeks if my memory is correct. I’m increasingly aware of how much time I have spent over the years taking care of appointments. It’s no small thing. Because even a very short appointment still probably takes an hour between leaving our house and returning and that would be something as short as just getting a vaccine. Holy heck! Whenever I have a form to complete that asks what my job is I always include “mom” in my list. Making and taking a person to an appointment is of course just a tiny part of it, but still. I think I don’t always give it the respect it is due when I think about my days and how I spend them. Extremely belatedly, thank you to my own parents and step-parents for taking me to all of my appointments over all of the years. 

My current mission is to get Sarah to have some form of physical activity multiple days a week. Whenever we have figured out something in the past that she loves, such as biking on Zwift with her bike stationary while she pedaled and watched her virtual self, eventually that interest wains. I don’t have any specific interest of hers that I’m following now. It’s more that I try to think of someplace we could walk or that she could scooter to that appeals to her. Friday night we went to Walgreens to get her an electric toothbrush as the dentist had recommended. She scootered and I walked. We had a pleasant excursion and as we went to leave the store, the heavens opened and it poured. Luckily after a few minutes it was only sprinkling and we could go home. The moment in the store doorway watching the water moving sideways in the sky reminded me of when Sarah was very little and we went to the library without checking the weather first. When we were there the heavens really opened and it poured and poured and poured. We waited under cover until I realized the storm was not going to let up anytime soon and the streets were already flooding. So pushing Sarah’s stroller, and sometimes carrying it with her in it, we made our way home. I waded through puddles spanning entire intersections and got completely drenched. Sarah had some protection from the stroller cover, but was still wet through. That was quite an adventure. I’m ok that our time at Walgreens wasn’t so exciting. Sarah heard me talking to a friend and saying how the heavens had opened and she now loves that phrase.

Carl came home on the red-eye Friday night, arriving Saturday morning, and is now catching up on much needed sleep. Amy is away with her BFF and family for the weekend. Yesterday the practitioner who has been helping me and the girls worked with Sarah and me again. In working on movements that will help my walking comfort, he coached me through various movements involved in throwing. I feel like it is the first time I can remember in ages of throwing being an easy experience that wasn’t fraught with self-consciousness, worry, and a bit of prayer. I know in my middle and high school years I played softball and would play catch with my dad. I wasn’t great, but I did enjoy it most of the time - except when I got super nervous about games. And my throwing often had a weird hitch that I felt in my shoulder. I never understood how to move differently. Anyway, it was a wonderful experience to realize I can actually throw a ball. With either arm! It’s not magic and it’s not prayer. I just needed this kind of direction to get past the awkward and uncomfortable things I did with my arm and to actually connect my legs through to my arms. 

It’s exciting to learn from someone who knows so much and looks at things differently than I yet have, but it’s also humbling and a bit overwhelming. I wrestle with feeling like I should stop what I’ve been doing with massage and Alexander and learn this different approach, but then I want to stick my head in the sand and hide. So I’m in frequent dialogue with myself to not throw out the baby with the bathwater. Just because there are new things I want to learn doesn’t invalidate what I have been doing. Still, that’s the feeling sometimes when it all feels like a huge paradigm shift. 

June 18: Music Camp, Sideways Cats, and Snail Mail

We now have a rising 7th grader in the house! Amy finished her last week of 6th grade with a fun-filled day at Kennywood with some of her best friends. Kennywood is a local amusement park. In past years we have all gone as a family but this year Sarah had Music Camp with one of her friends, run by Anna at our house, and I didn’t want to cut that short. Also, last year Sarah lasted about an hour at  Kennywood before really wanting to be done. A few weeks ago I asked Sarah if she would want to go to Kennywood after music camp and she said no. 

Sarah had a wonderful week of Music Camp aside from the day when she suddenly didn’t feel well just after breakfast. It was the scenario we are only too familiar with from about a year ago of her suddenly saying, “whoa!” and feeling headachey, woozy, and like she needed to throw up. She did. Voluminously. I was teaching but Anna handled the day beautifully, as beautifully as they facilitated the days when everyone was healthy. So I knew Sarah was in good hands, but it was still hard to be away from her when I knew she felt miserable. Luckily she felt better by the end of the day. We don’t know for sure what brought on her day of sickness, but my immediate suspicion was that it was due to increasing one of Sarah’s anti-seizure medications. It is what she used to be on for years, but as we switched to another one and weaned her off the oxcarbazepine then that coincided with her symptoms of phlegminess improving a year ago. We changed many things though so we don’t know what was the most important shift. We put her back on oxcarbazepine now because clearly the topiramate hasn’t been enough to keep her seizures at bay. But her dose of oxcarbazepine is much lower than it was a year ago. Until Tuesday of this past week when we bumped it to a higher level. Thursday she felt crappy, so we backed the level to what it had been. Fingers crossed this is somehow just the right amount to keep seizures in check and keep Sarah still feeling well. 

For Music Camp there were many fun times over the four days of health. They all made miniature drum sets using old yogurt containers, jam lids, tooth picks, and other recycled objects. They made paper bag puppets and beads that they used to make bead watches and bracelets. Anna made Sarah a beaded ring too. We were amazed by the detailed beading Sarah did, not needing any help to thread the tiny beads. I have trouble even picking up these beads because they are so small. Anna and I both had the sense that Sarah and her friend were connecting and talking to each other more than in past years, which is super exciting because they will be at the same school next year. One subject of conversation was after Sarah had a melt-down Friday when they got back from the playground. Sarah wanted a donut from the batch I had made in the morning. I said no but that she could have one after dinner. She really didn’t like that answer and was loud in her vocal protest. She also slammed the metal lid onto the donut tin. Her friend got upset about how loud it all was. While a double upset was difficult and I was glad Anna and I were both there (Anna handled it incredibly gracefully and calmly), what impressed me was hearing Sarah and her friend talking when there were no adults present, as they discussed what had happened. They then practiced deep breathing to be calm - so deeply and quickly that Anna and I each panicked that someone was having an asthma attack! But all was well. Lastly, one of my favorite moments that I witnessed during Music Camp was when Anna would play a song on the xylophone and the kids tried to guess what it was. Once they guessed it then all of them would sing it together, using their own instruments too if they wanted. It was so fun. I haven’t seen Sarah so delighted and engaged in an activity with sparkly eye contact and clearly enunciated singing in I don’t know how long. 

Carl got Sarah a banner of individual letters that spells “Congrats Grad” and large wall sign that says the same. She had liked them so much when she graduated that he figured she would like her own and he was right. She loves them. He also correctly predicted Amy’s glee when she saw him wearing a shirt that says “I'm a potato,” as she affectionately calls him a potato. 

You know when you see a part of the world and it seems to be sideways from normal? Well, that is often how I feel when I look at our steps and see our cat lying on her side with her feet on the vertical part of the stair, as if her world would be upright if you just rotated the entire house. Amy recently joined her so there were two beings lying on the steps.

Yesterday we went to our favorite lake beach for the first time this season. It wasn’t really warm enough for much water time but that didn’t stop Amy from at least testing it out. She and Sarah also spent many minutes playing in the sand. We finished the day by watching an animated version of Frog and Toad stories, originally by Arnold Lobel. We all love the books and the animated version did not disappoint. One of the stories was “The Letter.” When we were done watching, Amy wrote a letter to Sarah/Toad from Amy/Frog and then pretended to be the snail delivering it.

I have been frustrated by our kitchen cabinet storage situation for a long time, especially regarding containers and lids. Carl bought kits to install pull-out drawers behind a cabinet door and our life is much better now. Our cat wanted to help with the installation though, climbing into the space before the drawers were in. Of course. Just like a cat.

Overall I know things have all been wonderful and good. I will also admit that things have been feeling hard for me these past few days. I haven’t had the space and patience with Sarah that I sometimes have. It also doesn’t help that when Sarah suddenly doesn’t feel well then my whole body fills with adrenaline and also frustration and desperation. It’s as if I’m mad at her (perhaps due to inconsistent answers so it is hard to know what is really going on) and the situation and feeling helpless to make it better but like it is also my job to make it better. Her times of screaming have also felt challenging, and I’m nervous about when she is at a new school with a friend who gets upset by loud noises. That is not a good combination. I’m hoping somehow it will help Sarah figure out different ways of expressing her upset. But I also understand the feeling of being filled head to toe with such frustration that you want to scream. I have moments when I can’t keep it in check either. Carl is about to be away for a week for work and I won’t be working as much as usual so I can be home with Sarah on some days (Amy will be at a day camp). I’m feeling a bit of trepidation about that, even though I’m sure we will have some lovely times.

June 11: Daughter Date Delights

With Sarah home from school, Carl worked from home almost every day this week so I could teach and see clients. On Tuesday I had the day to be with Sarah and we went uniform shopping so she is all set for school in the fall - except for the tiny detail that the school still hasn’t published the start date. It is hard for me to believe that they don’t already know it so why they wouldn’t share it is beyond me. Or if they don’t know it, why is that so hard to determine? Anyway, when we were at the uniform store, Sarah saw an Ellis shirt. She won’t be attending Ellis but she loved the tiger on the shirt so we got it anyway. Can one really have too many tiger shirts? Plus, it’s a different tiger than the St. Therese tiger. She has been wearing her new shirt almost 24/7, as she does anytime she has a new favorite item of clothing. 

Wednesday night I took Sarah to see Blippi live. Blippi is a tv personality with tons of energy and enthusiasm and with shows geared towards little kids. Sarah has been watching his show for ages so I was hopeful that she would like the live show, but I was uncertain given how she felt overwhelmed when we went as a family to see Frozen live. I was prepared to arrive and leave immediately if that is what Sarah wanted. Instead she was unfazed by the cacophony of an auditorium filled with young children. As soon as she arrived she insisted on getting a Blippi shirt so we did that before finding our seats. She was already wearing a Blippi hat. It was an incredible delight to watch her enjoying the show, singing along with the songs and clapping after each one. She knew the songs like any of us know our favorite album and our favorite rock star. We stayed the whole time and even intermission and our departure went smoothly. 

Friday night I took Amy to see The Little Mermaid movie in a theater and we loved it. She dressed in a mermaid costume that somehow used to reach her feet and now comes to her knees. She has grown 3 inches over the past year so perhaps this is no surprise. I think I was smiling or laughing the entire time, except for the scenes that got me teary, such as when Triton says how much he will miss his daughter Ariel when she won’t be living with him anymore. 

Amy’s school had spirit week so each day had a different theme. One of the days the prompt was to dress as your favorite Marvel character or as a teacher. Amy decided to create her own superhero named Glitch. I love that when she didn’t see a Marvel fit for her she stepped outside of the box. 

June 4: Graduation and Baby Bunnies

We now have a rising 10th grader! Sarah is all done with school! Somehow I had no cognitive dissonance when I knew her graduation activities were on Friday June 2, but that her school calendar went through June 6. I assumed she would have the graduation activities and then finish out school on Monday and Tuesday. Ah, but no. She is all done with 8th grade and all done with going to St. Therese, where she was for the past 7 years. She is all done with having the most reliable bus driver in the world who arrived promptly every day at the same time - to the minute! 

Friday at 12:30 there was a slide show at the school for graduates. Part-way through, Sarah was done. She was low-level whining and yelling about wanting to be done. But we wanted to make it through to see her slides. Being a W last name meant a long wait in a class of 38 kids. We also knew that after the slide show all of the graduates would walk through the building one last time before meeting the parents outside. Carl, Sarah’s teacher, the principal, Sonia, and I all worked to help Sarah regain her equilibrium and somehow Sarah managed. She was in a calm-enough state when her pictures were on the big screen and there was a cheer from her classmates. It was nice to have them see her at a swim lesson and in a piano recital to know what she does outside of her school time.

When the graduates emerged from their school walk-through they release balloons and Sarah was delighted to see them all fly away. Then we drove home and Sarah napped for two hours before she and I argued about what she would wear for her graduation Mass. She insisted on wearing cut-off shorts. I insisted that almost anything else would be ok, but not those. Eventually she opted for her uniform shorts and a black and green/yellow musical note blouse. And Goodnight Moon socks of course!

The Mass went well. Sarah’s teacher sat in the pew with us to help Sarah stay at ease and that all went smoothly for the Mass plus award ceremony, which together lasted for almost two hours. When it was her turn, Sarah walked up to the front of the church by herself to receive her diploma. When she won awards for participating in the school musical and being a school helper delivering supplies to teachers, she stood with her fellow award-winners to receive applause. When it was all over the graduates stood up from their families and walked together to the back of the church. Sarah had a moment of being distracted and slowing her pace. Her Resource Room classmate whom she has been with for the past 7 years put his arm around her to get her walking with everyone. It was so sweet! 

There was a dinner for everyone in the cafeteria and then we headed to the gym for some tiger cheers. Amy did cartwheels and lots of cheering. She also had some feelings when we got home. It’s been quite a span of weeks with lots of moments celebrating Sarah and attending her events. That can be hard for a sibling who hasn’t reached those milestones yet and whose school doesn’t do musicals. I was impressed that Amy could verbalize the feelings and we had some nice snuggles. 

The other highlight of the week was when Amy spotted baby bunnies in our backyard!! We have had two bunnies back there almost all spring and have come to think of them as our pets that we don’t have to take care of but get to see often. One night at dinner Amy realized there were baby bunnies with the mom. We watched them nurse! We were seriously beside ourselves and imploding from the cuteness. They were so little! And also so dirt-colored. If you didn’t see the movement you could barely see them. Now of course the bar has been raised so I am no longer satisfied just seeing the grown-up bunnies. I want more baby bunnies!