June 2: A 25 Year Reunion

Although this cannot possibly be true, apparently Carl and I graduated from college 25 years ago. We just wrapped up a wonderful reunion weekend, traipsing all around Swarthmore’s gorgeous and ever-changing campus, belting out “I Will Survive” with our classmates in our favorite party room, staying in one of our old dorms, dancing to “Like a Prayer,” visiting my sixth grade teacher for whom I babysat when I was a college student, and generally taking many steps down memory lane. We also climbed to the top of the bell tower, which was not something accessible to students in our college years. I’m not sure why I decided to go up, given my fear of heights. But somehow I thought it would be good to do, and I have survived climbing similar things in the past. When I got back down I gratefully flopped onto the grass, and I will not need to climb it for any future reunion. 

This was our first reunion without kids since we became parents. Sarah and Amy had a fun Grandma and Grandpa weekend that included a trip to the history center. Amy enjoyed her evenings doing art with our cat on her lap, and Sarah spent some time calling us to share how much she misses her bus driver, which is her frequent feeling when not riding to or from school. 

Friday was Sarah’s last day as a sophomore. To commemorate their year of rides together, her beloved bus driver got her a custom-made hat to echo the hat he always wears and that she likes to talk about. Now we have our fingers mightily crossed that we get the same driver next year. Part of that will depend on the renewal of the contract between the pittsburgh public school system and Z-trip, the taxi company that provided Sarah’s bus service this past year. 

Since Monday was a holiday we went to the zoo with some friends. Amy and her bestie did drawings of several animals, and Sarah held the zoo map while pretending to be a tour guide. That day also included lots of walking, but once we got to the aquarium, Sarah sat watching the fish for many minutes. We also watched the penguins hopping in and out of the water. Amy and her friend were observing the gorillas when a large male gorilla charged the glass window, much to their startlement. When Sarah saw a metal jaguar statue, she promptly hopped on its back and sang “row row row your jaguar gently down the zoo.”

May you all have gentle jaguar rides and good memories of your past moments.

May 26: Swimming and a Sneaker Gala

Last Sunday we attended a luncheon to celebrate the marriage of one of my cousins to her fiancé. It was a beautiful day, it was wonderful to see lots of family members that we don’t often see or haven’t seen in many years, and there were bubbles galore so Sarah was in heaven. Amy made use of the drawing pads and crayons, while Carl and I observed all of the much younger kids and wondered how we came to have the big kids! 

Before heading home, we went to the site of the Battle of Bull Run. It was a hot day and Sarah was initially not wanting to get out of the car, so Carl offered to give her a piggy back ride. That offer resulted in short rides for each kid. I always find it hard to reconcile knowing that an area saw a terrible battle with the beautiful, calm, sunny day we observed. After a few minutes we were on our way since we had many hours to drive and the girls had school the next day. We made another stop at our favorite Virginia Farm Market that we had stopped at the day before. This time the girls were even more into playing on the wooden train and in the sand than they were the previous day. It was hard to make them get back in the car since it is increasingly rare for them to play together. We also got more cider donuts, of course! And blueberries, strawberries, corn, and tomatoes.

Monday was momentous. Sarah swam a lap in the big pool were she takes lessons. I don’t know if it is Olympic in size, but it is a normal big pool. She swam a lap with her teacher beside her holding a pool noodle in case she got tired. Sarah’s swimming isn’t quite standard form because it is hard for her to get her body horizontal and her legs tend to look like she is running through the water. But still! She moved safely from one end of the pool to the other and back again with no help. That is huge. 

Our new chair-and-a-half was delivered on Tuesday and our cat approves, in that the sleeps on it, but she doesn’t claw it (knock on wood) and that was the point. We also wanted a smaller piece of furniture where our previous couch had been so that Carl can have an area in which to play his guitar. Luckily, the junk removal people that I called to take away our old couch never called back. To make room for the new item, Carl and I put the old couch on the porch. Now we have a porch couch and we love it!! 

Amy and her friends attended their school’s Sneaker Ball on Friday, getting dressed in fancy clothes and sneakers. Amy looked gorgeous in a blue dress with the sparkly black mesh overlay dress she got at the fairy festival. She said they didn’t actually dance much, but there was lots of food and it was fun to hang out with her friends. Towards the end of the evening they moved to the hall where it was quieter because the main space was quite loud. She slept well that night. 

In preparation for the Ball, Amy wanted to take a shower. She explained to me later that she now knows how to do so without Sarah getting upset. She recently drew a musical note on the mirror in the condensation because she always draws something on that fresh surface. Sarah sometimes barges in and tries to erase what Amy has drawn, but seeing the musical note gave her pause and she left it all there. Now Sarah knows Amy may draw something she likes, so she doesn’t barge in to erase and even was patient while Amy was in the shower. I heard Sarah singing “All Shook Up” to pass the time. Amy and I discussed the possibility of using this new dynamic to her advantage and providing a pencil and paper in the bathroom so anytime Amy goes in she could draw a picture for Sarah. If Sarah knows a picture might be coming, maybe she will wait easily. Of course, so far there hasn't been a moment of screamy impatience.

Sarah is in the home stretch for her school year, with only one full-length school day left. Tuesday is a half-day because the boys’ baseball team made it to the championships and they want the whole school to be able to attend. Wednesday is a full day, and then Thursday and Friday are half days. I don’t remember ever having a half-length school day in my life. If you are reading this and went to school with me or are my parent and remember otherwise, please update my memory!

Yesterday we had a beach day and Amy and Carl braved water that I deemed icy. Sarah put her feet in but mainly stayed in the sand. It was a bit windy and at one point our cabana collapsed around a seated Carl, so all you could see was his upright form draped in blue. It was hilarious. Meanwhile, Amy lovingly hones her skill at roasting Carl for being an old boring potato. To prepare for our upcoming college reunion, Carl and I have been looking through old pictures. He said it was weird that our older selves can look back at pictures of our younger selves but our younger selves never get to see pictures of our older selves. Amy said something like, “if you could see your older self, that self would be in the compost.”

May 19: Screamies and Faerie Magic

Last weekend Sarah had many screamy moments. It seemed like she didn’t have her usual capacity to handle being told “no,” whether it was us telling her to stop doing something or that we weren’t going to a bakery. If it had been later in the month I would have assumed her period was about to start. I was uncertain about sending her to school on Monday, but she really wanted to go. Monday morning at 9:30 her teacher called to say she had a big screaming meltdown and it would be best if I could come get her. Things mostly were back to normal after that, but normal does include screamies. It is just how often they happen that marks a difference.

Wednesday evening she had a big screamy time when Amy used the bathroom. This is unfortunately a common occurrence and is accompanied by pounding on the bathroom door. We have tried many things to shift this dynamic, to no avail. The confusing thing is that Sarah doesn’t do it a hundred percent of the time that Amy uses the bathroom. Sometimes she is calm and says she will go downstairs. But often she screams and insists that she needs the bathroom that instant, refusing to use the other two in the house, and then not actually needing to use it when it becomes available. On Wednesday, Carl tried covering his ears and saying she was really hurting his ears. Sarah proceeded to be upset for a long time afterwards, feeling sad that she had hurt Carl’s ears and trying to do things to take care of him. She hasn’t had such a big screamy time since then, and Thursday morning she seemed extra clear and focused on getting ready for school. She didn’t ask to look at pictures on my phone and she got out of bed and came downstairs completely on her own. She also hasn’t pounded or screamed about Amy’s bathroom use. I don’t expect this to have solved it permanently but any respite is welcome. 

We had a routine checkup with Sarah’s neurologist and learned that one medication, that she has always had as a liquid via syringe, comes as a tablet!! We are on our last bottle of the liquid and then our lives will get easier in that tiny way, which actually feels huge. No more possible hitch when going through airport security due to carrying a large bottle of liquid! No more worrying about the glass bottle breaking! No more syringes!

When I arrived to teach at the massage school Thursday morning I thought I must be in a dream. . . There were kittens! Walking around!! I could hold them! They spent the morning mostly in their cage so we didn’t worry about stepping on them, but on every break we cuddled kittens. Two of my students have been fostering them and apparently they have been at school every day for weeks, just not in my classroom. I felt my whole body chemistry shift towards calmness in a way I didn’t know I was missing. I don’t get that from having my cat on my lap. It must be something about kittens for me, but maybe that calm is what Amy gets from any cat.

Sarah was home on Friday because school was closed due to the Prom. What?! In my day… Anyway, Carl worked from home since I was teaching. That was a convenient arrangement to have in place given that Amy wasn’t feeling well and needed to stay home too. Yesterday morning she still didn’t feel great so we had her checked by her doctor. Nothing to do except rest and hydrate and take ibuprofen. Those remedies can be powerful though.

Yesterday we drove to Virginia because today we are celebrating the wedding of a family member. Amy recovered rapidly as the miles passed, napping most of the time. Since the only thing on our agenda was the drive, we had the flexibility to stop at Berkeley Springs, WV when we saw a faerie festival in the main square. Amy walked in as a human being and emerged as a fairy, seemingly fully restored to her usual vivacity. The festival had a Fairy Clothes Closet where clothing donated by thrift stores was available for people to purchase for whatever amount worked for them. I found a sparkly blue top and Amy put together a remarkably perfect outfit comprised of a green dress, a sparkly black mess over-dress, and a scaly shiny green jacket. After that we went to the face painting area and Amy completed her transformation with green leaves and gems around her forehead and eyes. Meanwhile, Sarah added to her sunglass collection with a pair of purple-tinted butterfly sunglasses.

We capped off that uplifting experience by stopping at our favorite Virginia Farm Market. Sarah loves the sand area and the flags, and we all love the cider donuts. We may need to stop there on our way home later today.

Lots of love and fairy magic to all of you.

May 12: Cards and Concerts

On Friday Sarah was upset when she came home from school, as she usually is on a Friday, because she would have to wait until Monday to see her beloved bus driver. After her initial upset she went off to her room. When she came back downstairs she was carrying a construction paper card that she made with scissors and glue. She informed me it was a Mother's Day card. . . for her bus driver! I’m sure he will be delighted! I say that in gest, and yet…he will be. Many people who are not mothers extend a nurturing energy towards others that is meaningful and deserves to be recognized. The bus driver certainly fills a meaningful, nurturing role in Sarah’s life so I couldn’t begrudge him the card even as I wondered if she had made one for me. 

This morning, after enjoying a fancy coffee and a chocolate croissant that Carl brought to me while I worked on the Spelling Bee game, I came downstairs to a pile of cards and presents. Sarah had in fact made a card for me too, and it is heart-melting. Under where she wrote “Happy Mother’s Day” there is an indistinct drawing that Carl informed me was her attempt at drawing my lips. Inside the card she wrote, “I love your kissis.” Carl said that was all her idea; all he had done was ask her what she loved about me. Amy made a beautiful heart drawing with smaller pictures that represent me and our connections, such as the dresses I have passed along to her, snuggling our cat, the bread I make, and a tiny picture of my book. I feel seen and loved.

Earlier in the week, Sarah and I had a relaxed walk to her eye doctor because she felt like her glasses needed to be tightened. She initiated our walk, and when we arrived she walked up to the desk and told the people what she wanted. I said nothing. I was merely her companion on this journey, making sure she crossed streets safely, but she did the whole thing herself.

On Tuesday night Carl and I went to a Decemberists concert. We saw many people we knew from different parts of our lives and were glad to have our ear plugs since it was loud. Although I tired of standing for 4 hours, it was a good concert. In preparation for this concert we had listened to the Decemberists’ latest album and were surprised that it was comprised of two normal-length songs and one 20 minute song. I never listened to the 20 minute one all the way through. I just didn’t enjoy it and couldn’t stick with it. When the group came back onstage for their encore they said, “We have one more song for you.” I turned to Carl and said, “As long as it’s not Joan in the Garden." Cue Joan in the Garden. I didn’t enjoy it and would have left early except that we wanted to see some friends we knew were in attendance but hadn’t yet seen. Aside from that, it really was a fun night.

Last night was a double concert extravaganza with Carl going to a They Might Be Giants concert, while the girls and I stayed home with Amy’s bestie and livestreamed a concert by Bandits on the Run. Sarah promptly got her own guitar and strummed and sang along. In the picture I took you can barely see Sarah because the room was dark, but you can see her white guitar strap around her back as she faces the Bandits. Long ago when Adrian volunteered in the Sarah-Rise program he would bring his guitar to his sessions. Somehow Sarah getting her own guitar to play along with him seems to bring everything full circle. 

Topping off our week, we have seen a baby bunny in our backyard! It is soooooo cute. Amy and I have been beside ourselves. 

Lots of love and kisses to you all.

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.