December 31: Snorkeling

Our plan, whenever going somewhere sandy, is to spend time at the beach and the pool, the beach and the pool, the beach and the pool. Our trip to St. Thomas worked beautifully for that plan. We also had the added bonus of having Mom-Mom and Pop-Pop with us too! We stayed at a place where my parents had taken me when I was in high school and college, including one year with Carl joining us. Impossibly, that was 25 or 26 years ago!

We had gotten snorkel masks and tubes ahead of time so the girls could practice during our weekly swim time when Sarah had her lesson. When we got to the island we rented flippers and one life vest for Sarah to wear. It took Sarah some time of easing in slowly to get comfortable. Amy was at home immediately like the mermaid she is. I used to be an anxious snorkeler but was much more comfortable this time. We even went on a snorkel cruise. The captain suggested having Sarah hold onto a life ring that the captain pulled through the water. That worked to get Sarah really comfortable with the whole thing. By the end she was snorkeling independently, still in her life vest. She would have stayed in the water as long as time would allow. Amy sometimes got cold so if we do such a trip again I think we should get her a wetsuit to keep her insulated. 

Amy was delighted to discover many cats wondering around the property. A black cat named Midnight even let Amy pet it and give it snuggles. 

We celebrated Christmas with stockings and a very small present exchange with Mom-Mom and Pop-Pop, plus Pillsbury cinnamon rolls as is my family tradition.

We loved the tiny lizards scampering everywhere and were lucky enough to see four iguanas. One day we went to a different beach and Sarah rocked out to the live band. We also watched the Straight No Chaser livestream concert and Sarah pretended to have a microphone to sing with them. 

After our time on the island we flew to Philly so we could spend time with Grammy and Granddad and my brother and uncle. Much fun was had playing the new Atari system I got for Carl. It was his idea so perhaps it’s not a surprise that we each bought each other the same game! Cosmic Ark was my favorite back in the day and we each got it for the other. Sarah has been missing everyone, but especially Granddad, a lot since getting home so hopefully we can have more family visits soon.

December 24: No More Goodnight Moon

I turned a game that Carl got for the girls into a drinking game. They don’t know that adults often play drinking games. What they know is that when we play The Fairy Game, a cooperative endeavor to save a garden, if someone draws an Old Man Winter card then everyone takes a drink of water. Keeping everyone hydrated is no easy task so clearly I just need to have us play the game daily. 

Sarah’s usual pattern with books is to love a book intensely and look at it all the time for weeks or months and then suddenly decide she is done with it and it needs to live in her closet or be given away. After years of loving Goodnight Moon and constantly wearing Goodnight Moon socks, she is done! She wants to give the book away and she actually thinks that I did already. What I did was hide it in the basement to await a change of heart. If she never wants it again that is fine but I learned my lesson after buying Brown Bear, Brown Bear, What Do You See? multiple times. Sarah has also started wearing all of her other sock patterns. 

When she came home from her last day of school before winter break, Sarah walked in the door and burst into tears. She was so sad that she has to wait two weeks to see her bus driver again. She sat on my lap for half an hour crying and talking about her feelings. She only got up and took off her coat and shoes when Anna arrived, but then continued processing her feelings. She has been similarly sad after most of her naps lately, as if remembering anew that she has to wait to see her best bud. 

Amy worked her tail off doing homework before winter break. She still has one project that is due when she returns in January that involves making pages of a graphic novel to go with a book the class read. It’s not something she wants to rush, and I’m incredibly impressed with her work. I’m not surprised by her ability but I’m ever impressed with her increasing skill. 

After much deliberation and with input from my publisher, I have a new title for my book. In January 2025 you can look for Watching Sarah Rise: A Journey of Thriving with Autism. It is astonishing how much effort and debate went into the process of finding a simple title that everyone was happy with and that conveyed enough about the subject matter. 

December 17: Gingerbread and Board Books

Last Sunday the girls and I made gingerbread cookies, and I marveled over how little they need my help with it anymore. I still put the trays in the oven and take them out, but that is largely because Sarah and Amy are busy rolling, cutting, and decorating their dough. Amy mostly used cookie cutters but she did go beyond that when she made a scoliosis brace cookie. Sarah mostly made musical whole notes with a circular cookie cutter, but she also made some notes just by rolling and pressing  the dough in her hands. I made the large cookies that comprise the walls and roof for a gingerbread house, which they decorated on Tuesday. The house is so large that it needs a day or two for the frosting to dry so that the pieces are stable and can withstand the application of many pieces of candy.

Amy had another follow-up appointment regarding her surgery. While it is absolutely the best case scenario to be told all is well, it did feel frustrating for her to miss some school to go sit and wait for a long time and be seen for all of five minutes, being told exactly what we heard in the follow-up with a different doctor the week before. She then missed the same class at school the next day for her Schroth appointment. It’s been a year of appointments and missed science classes, which is the most terrible thing to miss since it is the one class she has with her bestie.

Sarah went on a field trip with her Resource Room classmates on Thursday. They went to Walmart and a mall and the Olive Garden, with each kid bringing money to pay for their meals and any gifts they purchased for family. When Sarah came home I asked her what she had for lunch and she replied, “Too much.” I think most of us can relate to that feeling after dining at a restaurant! Sarah also told me that she and one other girl watched buses while they were at the Olive Garden. I love knowing she had a bus-watching buddy.

We went swimming as usual on Thursday but Sarah’s teacher unexpectedly didn’t come. Amy offered to hang out with Sarah while I swam, and she coached Sarah on kicking, getting kickboards for both of them to use. When we traded so Amy could swim, Sarah practiced a bit of kicking at the wall with me. The main challenge is to help her keep her knees straight while kicking. 

Yesterday we had a small first Christmas to open gifts that had come from Mom-Mom. The girls were quite surprised and love their new things. Sarah got a musical note watch, which she says she will never take off, and a handful of Sandra Boyton board books. She tells us that now she has eight books with pictures of Blue Hat Green Hat on the back cover! I love that that is why she likes getting more board books. Amy is in love with her new stuffed animals and is rapidly reading Deenie by Judy Blume, about a girl who gets diagnosed with scoliosis. 

One of my adventures this week has been trying to come up with alternative titles for my book, along with subtitles that would give a bit more explanation about the content. It’s tricky to get out of my mental groove after calling it Sarah-Rise forever, but I do have a handful of ideas. I’m waiting for my publisher to respond with feedback so we can finalize whatever the new title will be.

December 10: But

Sarah’s favorite sentence construction of late involves words preceding “but” and then the word “but” with nothing after it. We aren’t exactly sure how this came about, but….

It may be from some episodes of Daniel Tiger and/or when Sarah's bus driver tried to console her when there wasn’t a lot of rain when she wanted rain and he said, “It’s ok to feel disappointed, but…” I’m sure he actually said more words, but Sarah can’t tell us what they were. I’m equally sure Mom or Dad Tiger said words after their “but” but I don’t know what they were. Sarah got out the book My Friend is Sad by Mo Willems and turned it to one of the pages in which Piggie says, “But…” and cracks up looking at it. She often wants us to dialogue with her, pretending to be Gerald saying, “but you were not there to see him” so she can be Piggie saying, “But.” Sarah made a book with Anna that has pictures of tigers and the word “but” on every page. That’s it. No other words are needed. Carl and I have been enjoying the hilarity of having a long preamble about something, saying, “but” and then just leaving it as is. 

Amy figured out how to make her Schroth exercises more palatable. She has her American girl doll, who also has a brace, do the exercises with her, whether on a small ball or small chair or small blocks. It is really adorable. I love how Amy brings her creativity to any situation to make it better. 

It was another week packed full of things. I remind myself that we aren’t overloaded. We are at capacity, but it’s not too much. And it’s all good things. It is also true that we haven’t had a lot of flex time, and we sometimes have to get creative about arrangements. Wednesday evening there was a neighborhood holiday potluck. We haven’t been to one since maybe before the pandemic, unless my memory is faulty. You could also tell me I was there last year and I would believe you, although I think it has been years. The girls still made a beeline for the kids' room, and though they were massively too big for some of the bikes, that didn’t stop them from riding. Amy took a coloring book and drew a scoliosis brace on one of the Disney princesses and wrote “scoliosis strong” on it. I hope that someone else who goes through that coloring book in the future may find a surprise of support just when they need it.

I’ve been contemplating my own work lately and realizing that just because I’m good at something isn’t a reason to do it. The reason to do it is if I still love it, and luckily I do still love all of my jobs. After 21 years of studying the Alexander Technique, and over 16 years as a teacher, I am finally realizing I might actually know a bit about it and be able to teach others without always second-guessing my abilities. Also, how can I be old enough to have those numbers make sense? 

I hope you have wonderful weeks. I do not have answers to any life questions, but…

December 3: A Packed Week of Wonderfulness

Our whole week was packed with fun experiences. The girls didn’t have school on Monday so we got our Christmas tree. We let it settle for the day and decorated it Tuesday after they were home from school. My favorite part was when Sarah wanted to climb a short step ladder, but then actually leaned down to reach branches lower than the ladder. 

I took a week-long zoom class through the Option Institute called Exceptional Woman. As with other classes I have taken there, including all of my Son-Rise Program training (the Option Institute is also the home of the Autism Treatment Center of America), it was life changing in the best way. The premise of their work is that we can look at our beliefs and change them, thus living freer and happier lives. This week I realized that for all of Sarah’s life I have been holding the belief that my fear for her well-being was keeping her safe. I also suddenly came to the understanding that it has actually always been my love keeping her safe, to the extent that I can control that, and that the fear is an extra experience but not the key factor. So I can begin to let go of my superstitions and fears and go more towards feeling my love for her, trusting that I will be guided by that to best help her. The same of course also goes for caring for Amy, but I have historically had less fear for her life, and she has had fewer life-threatening moments. 

Thursday evening we went to the St Anthony Program Christmas party and had a blast. This year there was a dance floor and both girls delighted in dancing. Sarah danced the whole time there was music and loved it when I said she was cutting a rug. I danced for a little bit but then Sarah asked me to sit down! That gave me time to hang out with a friend whose daughter was also dancing. 

Friday evening we had a Higgy event to meet up with other families with kids who have scoliosis. Amy loved connecting with new friends who know exactly what it is like to wear a brace. The venue was Chuck E Cheese, which I hadn’t been to for maybe 35 years, so it was understandable that things had improved. We all had a fun time playing games and connecting with the other people. 

Yesterday morning Carl and I dropped the girls off with Anna for their December bash sleepover that they have been eagerly anticipating for months. Then we hopped in the car with Sonia and her partner and drove to Washington DC. At a rest stop I saw a fun play area with Big Bird and wanted my picture taken to send to Sarah. We got that, and I also got a wet butt from the puddle of rain water I didn’t notice on the seat! 

In DC, we met up with four other family members from different branches of my family, had a delicious dinner, and then saw Swept Away, a musical based on the album Mignonette by the Avett Brothers. I highly recommend it if you live anywhere nearby. It was riveting, powerful, and moving. Our dear friend Adrian Enscoe, from the early Sarah-Rise days, is in it and is incredibly good. 

Aside from all of our big events, some small moments of delight included Sarah talking about falling in gym class. She cracked up as she pretended to be her teacher telling her to be careful. She cracked up further when I said there was a turkey down! A baby Bow-Wow down! That baby musical note wiped out!

Furthermore, when Sarah packed for her sleepover she had a tote bag for any books or toys. She put one item in her bag: Blue Hat, Green Hat. 

Overall it was a great week! It was packed solid with  wonderful people, connections, and parties. 

November 26: Turkey Trots and Higgy Zooms

Sarah had a piano recital last Sunday and all went smoothly once we got out the door. It can feel tricky to balance making time for a nap prior to getting dressed nicely for something while leaving enough time to get dressed and get past any protests. Thanks to Carl helping us both stay mostly calm, we made it.

Amy is ever more recovered and has started wearing her scoliosis brace again. I forgot to mention in my last update that she attended another Higgy zoom. Higgy Bears is a nonprofit group offering community and support for kids and teens with scoliosis. If you know anyone in that category who doesn’t already know about the Higgy Bears, I highly recommend it. Amy has loved both zooms and wears her “bent not broken” bracelet all the time. It’s a big deal to wear a brace for most of every day and to have to do exercises daily so it is wonderful that she has a place to go where everyone knows what one or both of those things are like. I don’t know how much they talk about scoliosis, but I do know they play games and she is always glowing after the zooms. 

Amy had a gloriously long play date with her bestie on Wednesday and dressed up in all sorts of things from our costume bin - that is when I knew she was really recovered. It is astonishing to remember that two weeks ago today Amy and I were waking up in the hospital after her surgery. It is wonderful how quickly young bodies heal, especially when the cuts are laparoscopic. There is still some more healing needed before she will be doing cartwheels, but now she is allowed to go swimming and to pick up things over 10 pounds. 

Thursday morning, Carl and Sarah ran the Family Fun Run Turkey Trot. Last year Amy participated too, but this year she wasn’t quite healed enough for running a mile to make sense. Sarah loved it and even won a hat after racing a person in a turkey suit. I stayed at home cooking, and then we had a delicious Thanksgiving meal with our local family. We always make enough food to have plenty left over, including 4 different kinds of pie (pumpkin, apple, chocolate, and key lime). The chocolate mousse and key lime pie are recipes left over from our GAPS days and involve avocados. Luckily my avocados behaved and ripened in time. 

Our days since Thanksgiving have involved ample dining, desserts, napping, reading, and playing Kittens in a Blender (Amy’s latest favorite card game). 

Love and naps to all of you.

November 19: Recovery

Last Sunday the surgeon on duty said that Amy was free to go home as soon as she felt ready, but at that time Amy felt anything but ready. Carl and Sarah visited, bringing a sad-faced balloon (selected by Sarah of course!) and a new Beanie Boo stuffed animal. After lunch we put in the request to be discharged and a mere (!) four hours later we were on our way home. It was so nice to be in our own beds and allowed to sleep without interruption. Amy slept for about 12 hours that night. She spent Monday and Tuesday at home, but I could tell she was starting to feel better as she needed pain medication less often and she started doing art in her room. On Wednesday she went back to school, having been instructed by the doctor to take it easy and not participate in any contact sports. We communicated ahead of time with her friends to let them know any hugs had to be gentle, because hugging each other hard is their contact sport. Amy felt loved and appreciated as the texts, pictures, and videos came in from her friends while she was at home. They missed her so much. She is mostly back to normal and has resumed her Schroth therapy exercises, but she is not yet able to comfortably wear her scoliosis brace. While she normally aimed to wear it for 20 hours a day, I think it is important for her to be more fully healed at the incision points before putting any undo pressure there. When she tried it yesterday for a minute and I asked how it felt, she said fine, but then she tearfully admitted that it would take getting used to how it hurt where her belly button had been cut. I told her to take it off immediately and we would try again another day. It’s hard to be a momma bear wanting to protect and take care of a baby bear from two different perspectives that collide with each other!

Amy received the best present when her bestie came to deliver cookies. It wasn’t the cookies (although they were super delicious) so much as the BFF's gentle hug that made Amy’s day and brought the biggest smile to her face that I had seen since her pain started. It is amazing to think back to a week ago this morning when Amy was in such rough shape - the way bodies can heal is remarkable, as is modern medicine and laparoscopic surgery. If it weren’t for modern medicine most family members that I know would be dead, as would I, maybe many times over.

Sarah had a good week, including staying after school for a few minutes on Thursday to sign up for the musical. I’m still wondering if this will actually work once rehearsals start and I go as her helper. It seems like she is the only one from the St. Anthony program doing the show, so the only one who might need a little help. At her old school there were more St. Anthony kids in each musical so it seemed like more of a done thing, and I was more sure of her acceptance by the other students since she had been a part of the school for years. So fingers crossed for All Shook Up, the musical based on Elvis, that will start rehearsals in January.

Yesterday we got our covid boosters, making it a family event as we did for our flu shots. First shots, then a CVS shopping spree where I let the girls pick out cookies and snacks and nail polish. Apparently the shot yesterday was much more painful for Sarah and Amy, but especially for Sarah. Perhaps you heard her scream? She has had tons of shots and bloodwork in her life and often handles all of it calmly, with the exception of anything to do with EEGs, for which we now know we need laughing gas. I was surprised to hear her scream yesterday, but felt like we were in a good place for handling it. Carl sat with her for many minutes, while the staff members brought her tissues and water, and Amy waited patiently so they could do the snack selection process together. I was standing in a very long and slow-moving line to pick up a prescription, and by the time I was done the girls were ready to load up on Goldfish and Milanos.

We got a new printer yesterday and Sarah delighted in using the copy feature. If left to her own devices she would make copies all day and use up all of the toner and paper as she pretends to work at FedEx/Kinkos. She made a few copies of pages from my book draft, as she knows that is what I go to collect at Kinkos. 

Speaking of my book, I’m thrilled to have been provided with my publication date: January 21, 2025! That means the publisher needs my entire manuscript by January 2024, along with other things so they can create the cover. It’s exciting to have things to do bookwise again other than waiting. I keep thinking in stunned wonder, “My book will be published and there’s nothing I need to do!” That’s not true at all. There is a ton I need to do, but there is no magic that needs to be performed. I am on track. I will do my things, and the publisher will do their things, and it will happen. And that feels like magic!

While my time in the Sarah-Rise room was long ago, I have recently been reminding myself of some perspectives that I found useful in the room. My job, especially when teaching or seeing my clients, is to show up and offer my best self, but after that it’s not up to me. If someone doesn’t want some Alexander Technique perspective or hands-on, that doesn’t mean I have done something wrong by offering it. It just means it is not the moment or the modality for them. It doesn’t mean there is something wrong with me. I can still be pleased about how I did my job of showing up and offering my presence. 

November 12: Emergency Surgery

 Last Sunday was a glorious autumn day. We started our day in Washington, DC, where we had been for a family wedding. We decided to see some of the monuments before heading home. We hadn’t known what our morning would be like so had kept it open, so it was very last minute to reach out to some other family in the area. Luckily one of my cousins was available so we met her for a delicious lunch, and we saw her parents who were in town too. 

For more family time, we had dinner with Grandma and Grandpa on Monday, echoing a dinner the week before when Sonia was also able to join us. We love being able to have casual dinners with local family, or sometimes-local family. Amy got home from her first evening art class so it was great that she could share the details with all of us. The teacher for the class is also the newly hired art teacher for her school, but the students come from all different schools. They are mainly focusing on drawing people at the moment, which is what Amy does with most of her free time anyway. 

Sarah drew pictures of people too. She drew a large smiley faced bus driver with smaller smiley faced passengers. I sent them to her bus driver who was quite moved. We are really incredibly blessed to have this driver who loves Sarah as much as she loves him. 

Yesterday morning started off normally, aside from the fact that I was taking a two-day continuing education class at the massage school. I had a few hours of learning about the Trager Method before I left in a hurry after getting Carl’s call about Amy. I do want to learn more about Trager in the future because it overlaps notably with the thinking and experience of the Alexander Technique. 

Carl texted me so I knew that Amy wasn’t feeling well (throwing up, intense pain near her hip) and that he was going to take her to Urgent Care. Then the people at Urgent Care sent them to the ER at the Children’s hospital. As soon as he called to tell me that Amy needed surgery for a twisted ovary, I got in the car and was on my way to join them. 

Sarah was a supportive older sister and Nurse Bow-Wow. After what felt like a very long wait, with Amy being given morphine for her pain, she was finally taken to be prepped for surgery. As Carl and Sarah said their goodbyes, Sarah said, “Bye, Amy. I hope you feel better soon.” Amy’s face, though ashen and green and with her eyes closed in pain, brightened when she heard Sarah’s words. So often when Amy is upset or ill, Sarah doesn’t quite hit the right note for Amy to appreciate her efforts so this was heart-warming to see that connection. 

Carl and Sarah went home. I had packed supplies for staying the night, but…. I realized a couple of hours later that I forgot my evening meds to help me avoid cluster headaches! And it’s not something I can just skip. So, feeling stupid, I told Carl of the problem. He arranged to have Grandpa hang out with Sarah after a late dinner while Carl drove the 20 minutes each way to bring me my verapamil. Amy was still in the recovery room and I hadn’t been called to see her, so Carl went home again without getting to see Amy. We didn’t know if it would be another ten minutes or another hour and he needed to get home. 

Right after Carl and Sarah left and Amy was taken to the operating room, I went to the cafeteria for dinner. I went from feeling like I knew what I was doing to suddenly feeling overwhelmed and confused. It it actually just a normal cafeteria and I have been there before, but this time there were signs with barcodes all over the place that said “scan and pay.” I didn’t know what to do so I asked someone else who clearly worked in the hospital and was getting food. He said I could just pickup whatever I wanted and go through the checkout line with a cashier. For some reason that moment of confusion and then getting help switched me into feeling like I wanted to burst into tears. With many deep breaths I pulled myself together (I’m all for crying but that wasn’t the time and place I would choose) and got food. Then I talked to my brother on the phone while I ate and I felt ok again. 

The surgery went well. They even gave me two pages of printed pictures of what they saw and did to her insides. She slept and slept and slept. She is sleeping now. We also were awake many times throughout the night with her vitals being checked or getting more Tylenol or water. This morning she ate some oatmeal, which is her first real food in almost 24 hours. Her skin is back to its normal color, but she is tired and sore. If she feels up to it then we can go home today but we are also welcome to stay another night. 

Carl and Sarah are having a good morning. He said, “This morning I put Sarah’s hot chocolate on her coaster without realizing that her aligners were there. Sarah laughed and said, “Do not squish them dad. My aligners are not a spotted lantern fly!”  After hot chocolate and meds at home, they went to Pamela’s restaurant for breakfast. Pamela’s is known for its pancakes, but Sarah chose her customary restaurant favorite of a toasted bagel with cream cheese. 

Everyone at the hospital has been incredibly helpful and kind. I am so deeply moved by having a team of people work so diligently to help my children be healthy and well and alive. It is almost enough to make me want to be a nurse - except that I get squeamish about many things and I love my current jobs. 

Earlier in the week I was interviewed about my experience of having a village of support. This moment with Amy exemplifies the power of my village. I always reach out for support when there is something big and/or hard so I emailed those who receive these updates via email. I do believe that prayer can help, whether with the medical condition or helping my own heart feel held. I felt so supported by all. It really meant a lot to get supportive messages. Amy especially loved the cat pictures and the silly videos from her BFF. Please know that I will always send you love and support if you need it. 

November 5: Halloween and a Family Wedding

A week ago Amy had a fun day celebrating the birthday of her bestie. It was chilly and drizzly, but the outdoor mini-golf ice cream party happened anyway with umbrellas and rain boots but no dampened spirits. After that we dyed her hair to be ready for Halloween. While Amy and I were out, Sarah and Carl went to a Steeler’s game, also bundled against the cold and the rain. They enjoyed their time thoroughly.

Last Sunday I wrote about how Sarah wanted to tell her bus driver about the rock hard chocolate that formed when the girls were making cake pops. On Monday afternoon when I picked her up from school I asked, “Did you tell ____ about the rock hard chocolate?” She replied, “Yes! And I want to tell him again tomorrow!” On Tuesday her driver wore a Freddy Krueger mask. He warned me ahead of time, and Sarah was not phased. In fact, now she talks about how she scared Freddy Krueger when she said, “Boo.” 

We had a wonderful Halloween. It was cold so Amy wore a teal wool sweater of mine as part of her siren costume so help her be warm. Her winter boots happen to be mermaid-scale print so she was all set. Sarah’s elephant costume was large enough for plenty of bundling. She opted to wear two sweaters rather than a coat. Instead of all of us being part of one theme, we had two thematic groups. Amy was a siren from the ocean and Carl was Odysseus tied to the mast. He maybe took his role as Odysseus a bit too literally, having trouble getting home and encountering various obstacles! Sarah was the elephant from Sandra Boynton’s Blue Hat Green Hat. To accompany her I was the bear in a red hat, Anna was the turkey, and a small stuffed animal moose was the moose. Some houses were so impressed by Sarah’s costume they gave her gigantic chocolate prizes for having the best costume. She got an extremely large Hershey kiss that is as large across the bottom as the palm of my hand. She also got a chocolate bar the size of 3 king-sized bars. Amy was delighted by her haul of multiple Twix bars. Amy went trick or treating with a group of friends, and all of them sorted and traded their candy at the end of the evening. The next day she took in various non-chocolate items to trade with a school friend who doesn’t like chocolate, bringing home peppermint patties to give to Carl since they are one of his favorites.

Amy’s school was having a spirit week with different themes each day. Monday was sports teams, but Amy doesn’t have any non-fictional sports teams that she loves. Instead she opted to wear pink to honor her bff’s birthday. Tuesday was Halloween colors. Wednesday was supposed to be wacky Wednesday and wacky it was, but not as planned. Schooling had to be virtual because of trouble with the sewer system! Thursday was the 80’s, so Amy wore lots of colors, put her hair in a side ponytail, and wore my vintage original plastic charm necklace. She couldn’t understand why anyone would choose the side ponytail look. I wondered why it has fallen out of fashion! Friday was pajama day, so we let Amy go to school for a few hours even though we had to get her early to drive to DC. 

We drove to the greater Washington DC area for a rehearsal dinner on Friday and a wedding on Saturday, celebrating the union of my widowed uncle and his new wife. We hadn’t met her before, but we immediately took to her and her whole family. Sarah doesn’t wear dress shoes often and in hindsight we should have had her wear her black school sneakers. Her feet were hurting as we walked into the church for the wedding. Carl and I rubbed her feet during the reception, and I asked,  “Sarah, have your heard the phrase that people use sometimes for hurting feet? They say their dogs are barking.” Without missing a beat, she quipped, “My musical notes are singing.” 

I don’t know if it was her hurting feet or being hungry or being in a big crowd, but Sarah was very sad for a portion of the reception. Because of her feet, she opted to stay sitting and I got a plate for her at the buffet. What Carl and I didn’t think about was that maybe one of us should have stayed with her for company instead of our whole table being gone except for her. When we got back she was crying and quite sad. We rubbed her back and feet, offered comfort, and suggested food. Carl basically fed her a bite of bagel and that didn’t help. But then he put a bit of salmon in her mouth and suddenly she started eating ravenously. Two portions of salmon later and she was her usual sparkly self. I think she was haaad. That is when you are hungry-sad. 

With the stroke of an “I do” our extended family size has increased dramatically. During the relaxed evening hanging out time, I learned that one of my new cousins even knows what the Alexander Technique is and has studied with a teacher in Boston, whose book I am currently reading! We enjoyed our time with other family members that I hadn’t seen in many years, and we got to see Mom-Mom and Pop-Pop. Amy and Mom-Mom had a good time playing as Mom-Mom pretended to steal Amy’s new stuffed animal cat Maple. Maple is orange and white and is a Higgy Animal, meaning it is wearing a scoliosis brace. The brace is exactly the same pattern as Amy’s. Sarah played with her toy piggy bank with Mom-Mom and then had a riotously good time reading Blue Hat Green Hat to Pop-Pop. Earlier she had also shared the book with her great-uncle and new great-aunt. 

Our Airbnb is surprising in some ways, as they always tend to be. There is no toaster, no coffee maker, and there are no mugs. Things are dusty and could clearly use some vacuuming. Aside from that, it’s been great. The whole weekend has been heart-filling. And the coffee and donuts Carl has procured at Dunkin’ Donuts have been belly filling.

 

October 29: A Very Big Upset and Many Wonderful Moments

We have weather maps and meteorologists to help us predict when storms are brewing. If only we could more fully see such maps for our own selves. On Monday Sarah had an enormous upset at school in the afternoon. It was so enormous the teacher had to write up an incident report and if such a thing recurs we will have to have a meeting with parents and teachers and all support people. Evidently she just really wanted to be done with the day but the day was not done. It was free period so she could have played on her iPad or read a book or done almost anything else she wanted to do. . . except scream, kick off her shoes so they went flying through the air (my guess about what happened because that is how it goes at home), knock over multiple desks, and run out of the room. The teachers were perplexed. I was also perplexed, especially because by the time I was picking her up Monday afternoon her storm had passed and all seemed normal and calm. 

Looking backwards at Sarah’s radar map, maybe it was a combination of many things being different from usual. Although that can happen often, maybe there was something about this time that made it so much harder for her. She had had many big upsets over the weekend, I had been gone for the weekend, she had a slightly stuffy nose, we drove her to school instead of her riding on the bus because we had her IEP meeting at 8am Monday morning, and she was going to have piano over FaceTime instead of in person because of her congestion. On Sunday we had discussed with her how she would go to school with us instead of riding the bus, but on Monday morning she was distraught about this and really wanted to ride the bus. But I had already told the driver not to come and I had let her sleep in. She got over her upset and all seemed fine. Carl wondered if maybe the bus driver is too awesome and that is why she so desperately wanted to get to dismissal, but since I am the one to get her on Mondays that doesn’t explain it. Because clearly I’m not as fun as the bus driver! Carl and I had a good laugh about that. I also wondered if Sarah’s period was imminent but it hasn’t yet started so I don’t think hormones can explain the upset either.

All we know is that we hope it doesn’t happen again. It was startling to be the parents getting the info about our child having dangerous behavior. What?? That is not the story I have in my head about our family. I sincerely hope it was a unique moment. Talking with Anna gave me some good ideas about helping Sarah notice what she is feeling in her smaller moments of stress and helping her find equilibrium on the smaller scale to help her better handle the bigger moments. I have had a couple of times when I helped her thus and I could feel her whole body go from being tense to being relaxed. I have also ordered calm strips which are sensory papers to look at and touch while breathing according to the instructions on the paper. I am considering a calming weighted stuffed animal but she isn’t much of a stuffed animal kiddo so I’m not sure about it helping. Her teacher immediately placed an order for a hammock seat that was in Sarah’s classroom last year and that she found soothing. I love that her teacher acted in that way, seeking to help rather than to punish. Her teacher also called me and said she would talk to last year’s teacher and that she remembered something about a nickel system…? Nooooooo!! I nixed that right away, explaining that any mention of using a nickel chart would be traumatic. 

Anna talked with Sarah about the big upset and drew comics about it with the character of Pretty Tiger representing Sarah. There is also a page about times when Sarah gets upset on a regular basis, although we may need to add one about when Amy uses the bathroom. Sarah did her own version of many of the pictures and the whole thing seems like a wonderful way of honoring her experience and processing her feelings. 

On the plus side of all of this, now I often feel grateful and excited for Sarah’s small moments of upset because, if I have the time, they are great opportunities to practice helping Sarah notice herself and calm herself. 

The actual weather all week was beautiful and warm. When Sarah came home on Tuesday she wanted to stay in her uniform and leave immediately to walk to the eye doctor’s to have her glasses tightened. We had a wonderful and relaxed walk, arriving a mere twelve minutes before the place closed because I forgot they close at 4 on Tuesdays! Thursday was a day for immediate snuggles while Sarah sat on my lap and gave me chin presses for at least half an hour. Whenever I have the time for that I figure it is also a good way for Sarah to regulate her nervous system. 

I had an idea a few weeks ago of helping the girls clean one area of their room with the plan being that then every day moving forward they would keep it clean on their own. This has really worked well with Sarah and the clothes that so often decorated her floor. She now puts things away or in her hamper immediately with minimal reminders. Amy’s area is her desk and that has been going relatively well too. My area is the kitchen and that has not worked quite as flawlessly, but that is ok too. 

We got good news on Friday when we saw Amy’s orthopedic doctor. She probably will only have to wear the brace for another 12-24 months. We had thought she would have to wear it for two years after getting her period, which hasn’t started yet. Since I was quite late compared to my peers for starting my period, we were concerned that Amy would have a very long brace timeline. But, the doctor said he sees signs that her bones are maturing and that not everyone follows the pattern of stopping growing two years after their menarche. 

Amy also had a very exciting Thursday night out when she went with her uncle to a cat cafe. We thought the cats would be in costume, but as one might expect, not many wanted to keep wearing their costumes. Amy and her uncle wore cat paws, drew whiskers and cat noses on their own faces, and wore cat ears. Amy came home happy and covered in cat hair. The next day Amy donned lots of pink and blue makeup to be Laguna from Monster High and regaled us with Laguna’s song. Amy’s artistic abilities gallop apace on paper and on her own person.

Friday night was wonderful for all of us because our beloved sitter and past Sarah-Rise volunteer Sc came to babysit. Carl and I went out to have a fancy dinner and the girls and Sc made cake pops. The pops are delicious but don’t look quite as much like pumpkins on a stick as we all imagined in our heads. Also, the white chocolate chips behaved oddly after the food coloring was added. When they attempted to reheat the mixture in the microwave it hardened into a rock. We couldn’t use my double boiler because we have an induction stove and my double boiler is glass, so the microwave seemed like the best option. While the chocolate didn’t quite work out as anticipated, Sarah can’t wait to tell her bus driver about it! I love how much she loves her driver. He is one of her favorite people and I can tell he delights in her as well. 

Sarah has been wanting a copy of Rhinocerous Tap, another Sandra Boynton book that we used to have but gave away in one of our Great Book Sorts. I ordered a copy and it arrived on Monday but I didn’t give it to her then. I didn’t want it to seem like a reward for the big upset nor did I want her to be so invested in looking at the book that getting ready for swimming would be derailed. I waited until Friday and she was so excited to see it that she started paging through to find Turkey Love Song before even removing her backpack. 

We wrapped up our day yesterday with pumpkin carving and watching It’s The Great Pumpkin Charlie Brown. Pumpkin carving wouldn’t be complete without Amy being grossed out by pumpkin innards and last night didn’t disappoint. She made some great faces while scooping her pumpkin clean before turning it into her siren-o-latern. Carl carved a bat, Sarah did her requisite musical notes, and I cut out stars and a moon. 

Now I leave you with Sarah’s latest rendition of a well-known tune, “Yankee Doodle when to town riding on a turkey, stuck a feather in his turkey and called it spaghetti.”

October 22: Slides, Zooms, and Processing Upsets

Last Sunday we had a wonderful time at Simmon’s farm, our traditional spot for play and pumpkins. Two of Amy’s friends were there too, and we were lucky that it didn’t rain. After our requisite chocolate covered pretzels to eat on the hay ride, Sarah made a bee line for a giant slide. She grabbed an inner tube and got in line. I stood with her and helped push her to get her started. That was a scary moment for me because I was pushing the inner tube from a flat place to a very steep drop. I was sure she would immediately fall out and get hurt. I nearly made her get out. But I didn’t. I pushed past my fear and pushed her over the edge and she raced safely to the bottom. She loved it. She did one more ride and then spent many minutes watching other people slide down. Amy and her friends also went down the big slide and did many other activities. Just before it was time to pick our pumpkins, Sarah got in the big fire truck. In past years that was always her first stop and this time I had to ask if she wanted to do it. 

Another highlight of the week was learning that Amy is probably going to be done going to Schroth therapy in a week or two. She has learned all of the exercises. She will still have to do them at home daily for who knows how long. But we will get our Wednesday afternoons back! She won’t have to miss half of her science class and I can start seeing clients at 4:30. And I won’t have to find care for Sarah from 3-4 every Wednesday! 

Thursday evening Amy had her first Higgy Bears zoom. Higgy Bears is a group for kids with scoliosis. There is going to be a local group for in-person gatherings but nothing has happened yet. Amy loved the zoom and already wants to go to the national conference in the summer. Luckily it is a different weekend from the conference for those with Sarah’s diagnosis. Each kid now gets to the star of the family for a conference. 

Carl had a very rough few days with a stomach bug, but luckily was on the mend enough for me to head to Delaware on Thursday. My dad had his right hip replaced, so now we match. I’m so glad to be here helping during the recovery phase. I’m also stunned in retrospect by how little I was instructed to do after my surgery compared to the detailed instructions my dad received about ice and movement. I was not told to move a certain amount each hour nor how often to ice. I wonder if I would have recovered faster if I had. My dad is doing wonderfully, considering that he had major surgery. He came home the same day of the surgery and is healing well. It has been lovely spending so much time together. I have also gotten time with my stepmom, brother, and uncle. The biggest surprise though was that the cat spent two minutes on my lap! This is a cat we usually barely glimpse during family visits with the kids. 

Carl’s dad helped make all of this travel possible by meeting Sarah’s bus and hanging out with the kids on Thursday and for part of Friday. Friday was also the evening of the fall festival at Amy’s school. She went with her bestie since Sarah didn’t want to go and stayed home with Carl. After that they had a late dinner, a huge Sarah-Carl upset (extremely rare), an emotional recovery phase, and then went to the mountain house. The upsets with Sarah can escalate so rapidly over something seemingly tiny and with no real clues ahead of time. I’m sure there are clues that she is somewhat stressed but sometimes those same clues do not portend disaster. 

Carl said that they had a really good day yesterday with delicious food that he made, naps, legos, guitar playing, ping pong, listening to music, chatting, and fearleading (cheerleading for monsters). He said Sarah kept talking about her big upset from Fridayand connecting it to something that happened to Olivia the Pig. It started with Sarah being Olivia the Pig in Timeout, along with tears, but as Sarah processed things it turned to her usual glee about someone being sad because things have gone awry. 

Lots of love to all of you. May you turn your upsets to glee and celebrate yourself for persevering through struggles.

October 15: Unusual School Weeks

Sarah was living her best life this past week because every day was a dress-down day with a special theme. Monday was “dress like a celebrity. . . or . . . dress like someone.” Sarah opted to dress as a music teacher, wearing musical notes head to toe including her musical note cardigan that was a present from her piano teacher. Tuesday was pajama day, and Sarah wore her flannel musical note pajamas. Normally when she gets home and I ask her how her day was she says, “good.” On Tuesday her reply was, “Amazing!” I’m sure the donuts they got as a morning treat added to her good day. Wednesday was Wacky Wednesday and Sarah wore a sort of tiger-print shirt with her tiger print pants. Thursday each grade was assigned a color and tenth graders wore blue, which was easy for Sarah to do. Friday was not only a Spirit Day with a pep rally so she could wear her spirit-wear t-shirt to school for the first time, but it was also a Day Away schedule. That means everyone goes to school but they do fun activities with their homeroom and don’t go to any classes.

Amy’s school week was quite short because Monday and Friday were in-service days for teachers so students stayed home. Tuesday was a field-trip to a camp where she got to try archery. So she only had two real days of school. We had a great time on Friday going to lunch at my new favorite restaurant and then shopping for new dresses so she has something for an upcoming wedding. Before we went shopping she tried on the dresses in her closet and we shared many belly laughs as we realized just how small some of her dresses have gotten as she has grown. We went to Once Upon A Child, which is one of our favorite thrift stores, and found several dresses that actually fit her, size 16 being the way to fit my tall 12 year old. Then we traipsed all over the mall in search of dress shoes. It is nearly impossible, at least in a mall, to find flats with a strap so they don’t come off too easily. We finally found one option in JC Penny but by then Amy was feeling sad and mad and looking like a wilted plant. She was not happy that the only option was plain black. I felt victorious that we even found anything. On the drive home I asked what she would design if she could have her dream shoe. She started talking about glitter and we realized that maybe she could decorate the plain black shoes with glitter glue to make them more Amy-ish. Amy has been decorating her face in ever more complex ways in preparation for Halloween. I’m happy to provide her with various eye liners and multipurpose face color sticks so she can explore her art with her own personal canvas. I’m sure she can also create some amazing shoes if we can find the right materials. 

At the thrift store Amy and I also found the Sandra Boynton board book Doggies. Most mornings while Sarah eats breakfast she looks at the back of a Boyton board book that has pictures of other books and talks about the ones we used to have or didn’t have when she was younger. We never had Doggies. When I gave it to her I realized why she was actually excited to have more Boyton books. She informed me that now she has 4 books with a picture of Blue Hat Green Hat on the back cover! 

Yesterday I got to visit with one of my original Alexander Technique instructors who trained me to be a teacher. I hadn’t seen her in maybe 14 or 15 years! It was so wonderful to be together again for a few hours, almost as if no time had passed since we last saw each other. After that I had my usual monthly AT class with my Pittsburgh mentor and she noticed some fine details about how I hold my right leg for sitting and standing that is different from how my left leg is positioned. I’m hopeful that this may be one of the missing pieces to helping me walk comfortably all the time. Every time I study with other Alexander Teachers it makes me love the work even more. I’m in awe of the incredibly detailed observational skills of my mentor and how much she understands how we are designed to function and can notice when one toe might be throwing things out of alignment. 

Last night, despite the constant misting rain and the chilly temperatures, we bundled up and went to the football game at Sarah’s high school. This was the first high school football game I’ve ever attended in my life since my high school didn’t have a football team. In contrast, Carl used to play high school football so had lots of memories. We sat on blankets so we didn’t get wet butts, snuggled into our winter coats and wearing hats and gloves and double layers of pants. I held an umbrella over Sarah at her request, though it did nothing to stop the mist that was blowing into our faces. Amy’s favorite part of the whole experience was watching the cheerleaders. The half-time show was impressive with the school bands and cheerleaders. Sarah’s school had a much stronger football team but the other school had a bigger and more impressive band. We left after the half-time show, appreciating being warm and dry, but glad we went to the game for a bit. 

For the past few months I have been the one to read to Amy before bed and Carl has been the one to tuck Sarah in. We usually switch roles every few months. Though Amy and I haven’t finished our book, I wanted Carl to start reading to her from a version of the Odyssey written for kids. For Halloween Amy is going as a siren so I wanted her to have more context for one of the most important references to sirens in literature. As I tucked Sarah in she asked me to tell her the story of Little Red Riding Hood. Imagine the inside of my brain pausing in shock. My eyes were wide, all the better to see her, and my ears felt large, all the better to hear her! I almost thought she was joking in some way. But as I started tell the story, she was attentive. I did my best, appreciating how some stories can stick in ones head forever - or at least some lines from them. And then she went to bed. 

October 8: Hard Moments and Surprising Shoe Work

Sarah went to work! Part of her school program now includes one day a week of going to a job with a teacher and some other students from the St. Anthony Program. Sarah started her job on Monday, going to a seminary that is near her school. She helped empty trash cans, wipe door knobs, and clean tables. When I asked her if she liked it she said no, but not with any further explanation. I decided not to inquire further. 

The pool was finally open so Sarah had her swim lesson and Amy and I had our time in the water too. The pool had been closed for weeks for repairs so that may be the reason that on the first day of reopening there were no lane dividers. It was very strange to be in a huge pool with no divisions and yet to swim laps. Amy swam here, there, and everywhere, enjoying her wide open freedom.

Overall my week felt spacious and relaxed and included a delicious brunch with one of my best friends. The timing of an open day and brunch with a friend Friday was particularly helpful given what I learned Thursday evening. One of my high school classmates died after being robbed and stabbed. While I hadn’t spoken to him or had any connection aside from Facebook since we graduated, I am still reeling and feel off balance. He is the first of my high school class to die so that throws the whole issue of mortality to the forefront, where I prefer it not to be. It's such a painful way to die and I keep wondering what those last moments were like for him. At first I cried hard while Amy and Carl snuggled against me (Sarah was already in bed), and then . . . then I went about the rest of my life. As one does. This whole business of how life keeps going even when it stops tragically for one person or family baffles me. I have had many wonderful, happy, laugh-filled moments. And then I will suddenly think of this classmate and feel so sad and stunned. 

While Sarah and I are perfectly capable of having tough moments without an excuse, I would like to think that maybe my intermittent stunned sadness was partially to blame for my not having the space to handle things well yesterday regarding Sarah. Amy, Sarah, and I were with some good friends at Idlewild, trick-or-treating in the Storybook Forest. It was chilly but otherwise beautiful. Amy was a siren (as in a mermaid and the reason Odysseus tied himself to the mast), Sarah was the elephant from Blue Hat, Green Hat, and I was the bear from that same book. Anna led the production of Sarah’s costume so it is phenomenal. We had a fun time and then had a car picnic with our friends in their car to be warm while we ate. The plan was to then use the bathroom and explore the rest of the park. Sarah and I drove separately so we could leave when she wanted to. Unfortunately, we learned that the giant ball pit was not available anymore. Why do amusement parks keep getting rid of the few things that Sarah loves?! Sarah decided right after lunch that she wanted to go home. I said that was fine and we could after we used the bathroom because it’s an hour drive to get home. I wanted her to keep her wristband on in case she saw something she wanted to do near the restroom. She proceeded to remove the wristband as I was strongly requesting that she keep it on for a few more minutes. I felt mad and told her I was mad. That was a mistake. She then screamed and things when downhill quickly, with her throwing herself on the ground and kicking off her shoe. I was panicking about this happening in a parking lot and just wanted it to stop. Within a couple of minutes we were in our car and I decided we would just hold our pee and drive home. We both cried about the clash with each other. We both apologized. We had good times later in the day. But still. I am always embarrassed when I so quickly turn into a tight mean parent unable to respond gracefully, especially when in hindsight the initial problem was not really a problem. It was more about the idea of being blatantly not listened to. Energetically and emotionally I feel like I ran a race and still need to recover. 

Carl was away yesterday for a rowing race and then driving to a location in preparation for a bike race today. So Sarah and I get a lot of time together, which can be wonderful, but also sometimes I don’t want to hear the usual few statements again and again and again and again. And despite feeling like I should be love incarnate because life is short, instead I feel like I have less emotional space to be present and delight in her. In these moments I try to simplify my next steps. Maybe get some water to drink, make sure I am not hungry, pee, read a fun book, do a crossword, or nap. Also, to put it in perspective, maybe it’s ok that after an hour or two of focus and delight, I want a break.

This week I did an experiment with our front room. I didn’t put away anyone’s shoes except my own. A messy pile accumulated from the shoes of the three people with whom I reside. And then this morning, Sarah put away most of the shoes! All of her own initiative, saying she wanted to help clean the front room!! Somehow I hadn’t expected her to be the one to get tired of the mess first, as her room is often covered in piles of stuff. I love it when she surprises me like this.

October 1: Were Things Stressful? Or Did I Feel Stressed? Language Matters

I’ve been thinking about the impact of language. I can tell you that Monday was stressful or I can tell you that I felt stressed on Monday. If I say the day was stressful that doesn’t give me much agency were the same things to recur. But, if I say I felt stressed then that leaves open a possibility of responding differently in the future. So. . . I felt stressed on Monday! Some of that was due to managing a multitude of slightly moving parts that all had to happen and figuring out the optimal order. Some of it was perhaps due to too many things on that list. Some of it was due to feeling bad and responsible about an error that occurred that was not actually my fault and I couldn’t fix it anyway. Timing felt tight. And all of that was before Amy called me in tears because she had a screw head lodged in her heel! I was about to drop Sarah off for her piano lesson when Amy called. Normally I wait in the car or walk around the block for half an hour while Sarah has her lesson. This time I called our neighbor who lives half a block away from us and is the dad of Amy’s bestie. Before I had finished saying what had happened he was putting on his shoes to head to our house. I left Sarah with her piano teacher and was home in less than fifteen minutes. As soon as I saw Amy’s foot I knew we needed to go to Urgent Care. So our neighbor helped me get Amy into the car so she and I could get Sarah. 

Sarah and I took Amy to Urgent Care, but as I was helping Amy hop towards the door, another family came out of the building and said it was so packed there wasn’t even a place to sit. Another person in the parking lot suggested we go to an emergency room. Ten minutes later we parked at the Children’s Hospital. As we hopped our way towards the elevator, another parent saw us and brought a wheelchair. Sarah happily helped push the wheelchair and everyone was kind and helpful. The whole process took a couple of hours because they wanted to X-ray Amy’s foot before doing anything. And everyone asked if she was up to date on her shots. Every time they asked I explained that she was and that I could log into her account to get the specifics. . .  or they could access her records because her pediatrician is within the same overall system. 

How did a screw come to reside in Amy’s heel you ask? You know those little metal floor plates where double doors might meet in a house’s interior? One of those little metal floor plates was slightly loose and the screws occasionally snagged a passing sock. On Monday afternoon Amy passed that place but wasn’t wearing socks so the slightly loose screw snagged her heel. As she walked the screw stayed with her since the screw head had gotten under the skin. The injury wasn’t deep but nor was it something I wanted to handle by myself. There is a reason I am not a nurse or a doctor. Anyway, Amy handled the whole thing extremely well. She had to hop upstairs to get her ipod to call me in the first place. Once we were heading towards people who could fix the situation she was calm and it wasn’t hurting anymore. She even helped keep Sarah calm when Sarah reached a temporary limit with waiting in the ER. Amy happily went to school the next day, keeping her weight off of her heel but otherwise walking normally. She still keeps her heel elevated when barefoot but can walk with her heel down if she wears sneakers. 

I felt more relaxed the other days of the week. They were less intensely packed and there were no injuries. Aside from the fact that once we got home from the hospital Monday night my right thigh started aching deeply in a way usually reserved for the moments after balancing on that leg for a while. I assumed it was from my extra stress and that it would clear up. Tuesday evening it was still hurting and I could tell the muscles were extremely tight. So I decided to use my foam roller, steering myself over it with my left leg. When I got up from that my left knee suddenly started hurting in the way it sometimes does. It’s an intense hurt when it happens. So I was quite gimpy and limpy. I didn’t see my trainer on Wednesday, feeling like I needed to rest. By yesterday morning my left knee was fine but my right thigh ached so much that I couldn’t really walk well. I went to my chiropractor and was pleased to know my atlas (top vertebrae) was out of alignment. That was fixed and I rested and went home. While my leg isn’t a hundred percent better it is much better than before. 

But to back up slightly, on Friday morning just as I was about to leave to see a client, I got a call from Sarah’s teacher. Sarah wasn’t feeling well and I needed to bring her home. After talking with her a lot I think I understand that she had been talking in Religion class. When she was told to be quiet she then stomped her feet. Her helper told her to stop or she would get kicked out of class. Oh no!! That was an attempt to get Sarah’s attention and get good behavior, but it backfired. I am so aware of that dynamic as I have been part of it too many times to count, threatening something out of desperation to get Sarah’s attention and cooperation, but inadvertently escalating the whole situation and inducing panic and big feelings in Sarah. Sarah cried to her teacher she didn’t feel well and had a headache. Once we were home she did sleep for the better part of six hours, and then felt much better. So, I think she was worn out and had a low personal battery that day which maybe led to her having a harder time being told to stop certain things. And, it also didn’t help to be told she might get kicked out of class. I have communicated with her teacher about all of this, suggesting that in the future one could ask Sarah if she needs a break and if she wants to step out of the class for a moment. That gets the same result but with a different perspective. Carl also spoke with Sarah a lot about how she could tell her teachers if she is feeling overwhelmed and needs a break. 

Over dinners this week we have had many conversations about the moments when the rest of us got in trouble or were reprimanded by teachers and how we felt. Mom-Mom and Pop-Pop added their stories during the zoom with the girls yesterday morning. I hope this has helped Sarah feel supported and that all of us can relate to her feelings. If any of you have stories you would like to share with Sarah, particularly if you had big feelings, you can send them to me (the stories and the feelings).

Although I felt stressed about many things during the week, I also felt extremely well cared for and supported by friends, family, and strangers. So many people were helpful and thoughtful. I had told Sarah’s bus driver she wouldn’t be on the bus Friday afternoon because of not feeling well. He sent me a text that evening just to see how she was doing! And I feel teary when I think about how our neighbor rushed to Amy’s aid. It is priceless to have friends who can be surrogate parents in an emergency.

Sarah has delightedly recited Moo Baa Lalala by Sandra Boyton at top volume, even though we no longer even have a copy of the book. She also continues to love reciting parts of Blue Hat Green Hat also by Boynton. Yesterday she got out her guitar and made up a Blue Hat Green Hat song. I love how she and Amy both dive into their loves so passionately. 

Lots of love to you all. May you feel your feelings fully, whatever they may be.

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.