December 26: Adventures and Misadventures

Merry Christmas, happy solstice, and peaceful winter! 

We are in Florida. I was nervous before we left for our trip, worrying that someone would get sick and the whole trip would fall apart. I often feel like I’m anticipating illness or a seizure, as if waiting for a shoe to drop. I am simultaneously worried that my fear will bring it to pass while believing that my fear and vigilance is necessary because if I relax then that is when things will go poorly. I do not recommend this way of being. I’m working on shifting things for myself. 

Nothing went wrong before our trip and the kids did really well with all the aspects of travel. They were extremely patient many times with the flight, waiting for an hour to get our luggage, getting the rental car, and getting our hotel room and luggage storage sorted. For the flight itself we had three seats together and one seat quite separate. Carl arranged for me to be on my own so I could rest and read. That was a lovely surprise gift. 

For our first day at Universal Studios and The Wizarding World of Harry Potter, I felt more at ease than I expected to be. My priority was connecting with Sarah. When we tried doing the Olivander’s Wand experience, Sarah was stressed and started complaining loudly. I asked if there was a way she and I could leave the room. Luckily we could leave easily, but then we were in the main store area. She sat down on the floor and was starting to melt down. I somehow coaxed her outside. Then in the middle of a busy pedestrian thoroughfare, with people and noises all around, I was able to focus on her as if we were the only two people in existence. With my head close in front of hers I started talking about all of the various clothing items that I have that she likes to discuss in terms of where I got them. Within a minute we were peacefully and happily connected. After five minutes she was ready to resume being in the world around us. I was pleasantly surprised by my ability to handle things in that manner rather than getting tight and upset towards her. 

Overall we had a great day. We ate at the Three Broomsticks, drank pumpkin juice and butter beer, tried spells with wands from Olivander’s, outfitted Amy in Ravenclaw robes, helped Amy adopt a Pigmy Puff, went through King’s Cross station to platform 9 3/4, rode the Hogwarts Express to and from Hogsmeade, and walked over 10000 steps. We were also startled by the fire-breathing dragon outside Gringott’s bank. This dragon scared the crap out of Amy so then she rushed past it anytime we were in the area. Meanwhile, Amy surprised us on multiple occasions with her confidence and clarity when speaking to strangers such as when ordering donuts for the family or arranging for the Pigmy Puff adoption announcement. 

Sarah really liked the singing frogs that were part of a Hogwarts choir. The frogs had big mouths that opened and closed. Sarah now likes to open and close her mouth while pretending to be a frog. Both kids also liked Fievel’s world based on Fievel Goes West (unrelated to Harry Potter). That was a playground of sorts with everything made from buttons or books enlarged so you felt like you were the size of a mouse. 

We ended our first Universal day with time at the pool. Unfortunately Sarah’s chosen way of playing while floating and singing at the same time resulted in many moments of swallowing a bit of pool water. This seemed like not too much at the time but in hindsight may have ruined the day that was to come. 

For day two the plan was to split up so Carl and Amy could do rides that might be too scary for Sarah and me, while Sarah and I did more time at Fievel’s world. We did split up but shortly afterward Sarah grabbed my arm as if unsteady and said “ow, ow, ow, my head!” I led her to a place to sit. Someone who worked at the park checked on us and told us where to find health services if we needed Advil or something. I texted Carl to return. When he and Amy got to us we all went to health services. 

We thought Sarah just needed Advil and a quiet room for a bit. So Carl and Amy went off to do more. Then Sarah started throwing up repeatedly. Almost all of it was phlegm. Or as Sarah called it, pukus. She was miserable. The only good thing, if you can see it that way, is that this has happened routinely in Sarah’s life that she gets too much phlegm and this is the only way to get it out. So while she seems sick it isn’t a bug. So I was pretty sure I knew how it would play out and that she was fundamentally ok. However, it was going on for a long time and the nurse suggested we go to an Urgent care so they could give Sarah something to stop the vomiting. I had her use the toilet while we waited for a wheelchair so I could walk her back to the hotel. 

After that, as we walked, it seemed that Sarah had rounded the bend and was on the mend. She still needed to take it easy, but no more came up and out. She and I found a sofa and snuggled while waiting for Carl and Amy to get back. After a while I took out some crackers because I was hungry. Sarah wanted them which seemed like a good sign. While she had crackers I got a selection of food and drink. She was eager for all of it and it sat well in her belly. So the rest of the day went well and we got to our rental house in St Petersburg in time for me to get groceries before the store closed early on Christmas Eve. 

Sarah was ready to start Christmas at 4:30am! We made her wait until 5:30 to wake Amy. At least our early start made it easy to watch the launch of the James Webb Space Telescope. My uncle John Mather has been working on that project as the Senior Project Scientist since 1995. We were excited to see his interview in the NASA coverage. I felt teary watching the actual launch. If you missed it and want to see the coverage, here is a link. John is on around minute 21 and a half. As I was growing up whenever I performed, my mom always said she wanted to stand up and say “that’s my daughter!” Now I get to electronically stand up and say, “that’s my uncle!”

 https://m.youtube.com/watch?v=7nT7JGZMbtM&fbclid=IwAR1ua7Bdup066KVVRLMOPIJso1P6uqv2ZGVlAJMAgllU9L75S0iFYOxQWtM

After naps and waiting for the temperature to rise, we headed to the beach. It was perfect and we lucked out with a parking place. The waves were mild and the water clear, even if cold. Beach time is one of the most relaxing ways to spend time together as a family because both girls are happily easily occupied for a long time and can do some things together such as chasing birds. Amy told me she was an assistant bird chaser for her musical note boss (Sarah.) We joked about how her boss sometimes gave her a rest. But, Amy said, chasing seagulls is treble. And if she doesn’t do a good job she might be given a note. 

On the way back to our rental house we had the surprising good fortune of driving past an ice cream shop that was open. So of course we stopped to indulge in a treat. Later, as I fixed dinner, the girls had fun playing with their new karaoke microphones and singing along with their favorite songs. As I write, Sarah is signing “Like a Prayer.”

Much love to all of you. May any rough patches pass quickly. 

December 19: Christmas Coziness and Nickel Feelings

I don’t know if I have mentioned that one of Sarah’s favorite songs is Madonna’s “Like a Prayer.” More often than not that is what is playing in our house on repeat. When Carl and I got married it was the second song we played at our reception, so we don’t mind hearing it one bit! Another favorite in this house is the Muppet Christmas Carol which we watch every year. We just watched it this weekend and loved it just as much as ever.

Speaking of Christmas, on Tuesday Carl wore a Rudolph outfit for a work presentation. He saw no reason to take it off before picking Amy up from Girl Scouts. She enjoyed it and was embarrassed in equal measure. Yesterday we had a small early Christmas celebration, and the kids were thrilled to get new bedding from Grammy and Granddad. Sarah’s bed now has a musical note themed comforter and a new musical note pillowcase. Amy’s bed is all Frozen themed from the sheets to the comforter. Sarah also received a Blippi doll that Carl found, and Amy got a photo book all about our cat. It was all so nice and simple to just do a couple of presents. It makes me wonder about future years and scaling back, although that is always my intention and never what happens in practice. 

On Friday morning I got a call from Sarah’s school that she wasn’t feeling well. Carl brought her home early and she got some extra rest. As with other times when she hasn’t felt the best, it seemed to pass quickly and she was acting very much herself in short order. Occasionally she said she still had a headache. I don’t know if there is sometimes something she is allergic to at school that makes her eyes itchy. I don’t know if it is a tiny microseizure that results in a headache. I am merely grasping at straws and guessing. Yesterday she had big feelings when we said she couldn’t do an extra technology turn. As I snuggled with her and listened to her tears, she started talking about losing a nickel at school on Friday because she was laughing a lot at a time when that wasn’t appropriate. I asked if she had big feelings when they took the nickel off her nickel chart. She said yes. I talked about how sometimes we feel things physically when we feel mad or sad or scared. She said, “or nickel feelings.” As with so many moments I don’t know if I was being a super insightful detective helping her tell me how things had been, or if I was putting words in her mouth in my attempt to have it be about feelings rather than actual sickness. 

I know I have written about this before, but I always get filled with fear and adrenaline when either kid is a shade under the weather. Reasoning with myself doesn’t seem to make a dent. So I just allow the feelings to be there, but they linger for a long time. It doesn’t help that Sarah likes to pretend to be her teacher calling me to say she isn’t feeling well. She often seems to be totally well when she makes the pretend calls but it still works to press my low-level adrenaline buttons. 

Sarah often helps Carl make Hello Fresh meals on weekends. He says that she is becoming increasingly adept and truly helpful. 

Amy’s school has changed things pertaining to winter break so it is 4 days longer than it originally was. She starts two days earlier and goes two days later. Many parents are upset as they scramble to arrange childcare. Since Carl can work from home and Amy can be pretty independent, we are luckily not among those scrambling. But. The other change is that her first three days of school in 2022 will be virtual. When I told her the news she was extremely upset. I think for all the grace with which she handled last year’s virtual school situation, it was harder on her soul than may be outwardly apparent. It is as if she was being told she has to endure torture again. I assured her that if it really just felt like too much mentally and emotionally she could just take those days as absences. I’m sure she will rally and attend, but if not, I really don’t want to break her spirit for three days of school. Meanwhile, Sarah has started requesting virtual school again, but that is not an option for her. 

As I step over and around the constantly shifting but never-ending mess of our house, and as I navigate the shifting waters of various stressful moments, I keep reminding myself that some day all of this will be a memory. I also remind myself of this when we have snuggly wonderful moments of reading kids’ Christmas books in bed together or building a large wooden marble run together. It may be trite, but it is nonetheless true that this too shall pass. At this moment I find it a helpful reminder to be slightly more relaxed about the stressful moments and hold on a bit tighter to the snuggly moments. I feel slightly more full of love and acceptance of things being as they are. You can remind me of this later when Sarah pretends to call her teacher and I inwardly lose my sugar cookies.

Lots of love to all of you. May you feel some peace even in your rough moments.

December 12: School Friends!

Friends! On Friday, we saw Sarah with her school friends and it filled our hearts. Well, Carl’s and mine. Amy was rather jealous whenever Sarah was part of her school group getting pictures taken before their performance at the St. Anthony School Program holiday party. The way Amy expressed her jealousy was by complaining about how boring everything was. But it was really wonderful seeing Sarah with her friends as they laughed with each other. It wasn’t that Sarah was having big conversations, but she had small interactions, and it definitely felt like we were getting a window into her school life. One of Sarah’s friends was next to her for the performance of “Rudolph the Red-Nosed Reindeer,” and he helped make sure she wasn’t hidden behind Santa at the end. When I sent a message to his mom about how sweet that was, she said he often talked about helping Sarah during the rehearsals and that he sits with her almost every day at lunch. Melt my heart!! 

To back up a bit, last weekend we made a gingerbread house and decorated it, as we do every year. I made the gingerbread, tracing pieces of cardboard for the walls and roof. I baked the pieces much longer than I would bake cookies so that they were firm. Using frosting as glue, the walls were erected and dried for at least 12 hours before the roof was added. Then that had to dry for another 12 hours before the house was stable enough to have more frosting and lots of candy added to it. A yummy time was had by all. Amy made a wall with magical items such as a wand and cauldron. She also made a cat face. Sarah made an EXIT sign out of Andes mints.

Amy and Carl started a letter war. I’m not sure how it began but somehow they started taping Qs and Zs and As on little slips of paper all over the house, trying to surprise each other with new locations. There were many moments when Carl was walking around with letters taped to his back. 

We also watched a Mariah Carey Christmas special and the kids loved it. Amy ran upstairs to get in fancy clothes. She brought her microphone that she made from modeling clay and she gave Sarah a marker to use as a microphone. They stood in front of the tv singing along to the best of their ability. It was super adorable. 

In other news, someone on Sarah’s school van tested positive for Covid. She isn’t considered a close contact because she wasn’t sitting next to the person, she is vaccinated, and all were wearing masks. So she doesn’t have to quarantine, according to the policy of her school. The bus and driver do though because they are part of the Pittsburgh Public School system so the policy is different. When I first heard the news about a case on her van my life for the next couple of weeks flashed before my eyes as I was concerned she would have to be home. So the fact that I have to drive her to and from school every day through December 20th feels like no trouble at all! I did have to rearrange my clients a bit and unfortunately had to cancel a few appointments. Carl also needs to stay home longer each morning to get Amy to school, but these seem like small accommodations to make. The ridiculous thing is that the bus can drive Sarah again on December 21, which is her last day before winter break. However, that is also the only day when I couldn’t easily pick her up, so perhaps all of this is perfect. 

Sarah continues to have startle seizure moments in her sleep. Overall I think these happen less frequently than they used to, but she seems to be having slightly bigger moments when they do happen. They sound like possible seizures from afar but by the time we get to her she is sitting up and just wants to be tucked in. Or she says, “that’s better.” One night she told me her lips didn’t feel ok. That was disturbing information, but I couldn’t get any more details or clarity from her. 

Anyway, overall things are good. We are mostly ready for Christmas and we plan on making gingerbread cookies today.

May you all have a friend who notices if your light is being blocked, and gently guides you to inhabiting your full and clear space.

December 5: Teeth Extraction, Exit signs, and Ooooh!

Last Sunday we got our Christmas tree and decorated it. This process was less stressful than it has been in some years. I gave myself more time to get organized before the kids came to help, and I set up a card table with hooks and ornaments. This made for a more controlled process instead of a free-for-all during which I usually scramble to keep up with their pace. 

Sarah had a rough Monday because she had two grown-up teeth extracted that morning to help with overcrowding in her jaw. She took a pill to help her be relaxed and the oral surgeon also used laughing gas. Carl reported that in the middle of the procedure the surgeon said, “Sarah you are amazing.” She responded in her best drawled sing-song voice, “I am?” She had a low-key day after that, skipping her swim lesson because exercise isn’t allowed within 24 hours of an extraction because it could raise blood pressure and break clots. She didn’t seem upset about missing swimming, which tells you that she wasn’t feeling the best. She did go to her piano lesson because she really wanted to do so, and I figured that would be ok. Tuesday she stayed home from school. At first I wasn’t sure if that was the right decision because she woke easily and was acting like she felt well. But at the mention of school she screamed and protested vehemently. It is easy for me to have a substitute teacher on Tuesdays while I have teachers-in-training, so I stayed home with Sarah. She slept all morning and wanted me snuggled by her side the whole time. 

The rest of the week was a bit challenging in terms of meals and mornings. Sarah could only eat very soft food but didn’t want many options that I thought might work. Thank goodness for yogurt and ice cream. As for mornings, even when no one has any teeth removed, Sarah’s mornings are always a bit of a gamble as to how they will go. Some days she gets ready for school easily, and other days she protests a lot and complains of a host of ailments even when the rest of her behavior indicates that she feels fine. She also pretends to be her teacher calling me to tell me Sarah isn’t feeling well. This gets me doubting myself in sending her to school. She can feel that doubt like a dog smells fear, so she ups her game of protest. Luckily, Carl is skilled at connecting with her about something non-school related and using that to get her moving in whatever direction is needed. 

Sarah’s latest favorite thing is to make exit signs and tape them around the house. I write the outline of the letters and she does the coloring. She is doing a much better job coloring the whole shape and staying in the lines than ever before. She also makes some signs independently. We now have exit signs above almost every door leading into a room as well as on walls. Amy likes to take such wall signs literally and walks gently but directly into a wall while laughing.

I wanted to get Playdoh advent calendars for the kids, so Sarah and I went to Target. As soon as we entered the store I felt like maybe I had made a mistake in not going alone. Sarah repeatedly ran to items that we passed while saying, “oooh!” and describing the thing and saying that she wanted it. This made for slow progress. At one point when I asked her to come with me she said, “I want to find more stuff to say ooh about.” I cracked up. Maybe we should all have more of that perspective in life. We eventually found the last two Playdoh advent calendars and returned home. Amy is  beyond thrilled to have more Playdoh and molds to go with it. I’m glad that this year we aren’t navigating making them share and take turns with one advent calendar. In this house there is no such thing as too much Playdoh. Amy is prolific with her artistic creations, and she lets them dry to preserve them. So we don’t get the brown mush of all colors mixed together that has been reused repeatedly. We just run out of dough and get more. 

May you have something to run and say “ooh” about.

November 28: Feasts, Dancing, Sledding, and Waiting for Snails to Deliver The Mail

Happy Thanksgiving! This year was possibly the least stressful, most relaxed Thanksgiving I’ve had since becoming a parent. I kept thinking that I must have been forgetting to do something. I did almost all of the cooking ahead of time so it was just a matter of reheating for the actual feast. Carl facilitated packing for our weekend and listening to Sarah’s bigger-than-usual upset when her technology turn was over. Later, when Sarah asked to do “Sincere my dear” 15 minutes before our target lunch time, I was able to say yes! I wasn’t rushing around doing things.  Sonia and her partner also brought a lot of delicious food, as always. We had a wonderful meal and a relaxed time hanging out afterwards. Somehow the subject of dancing to Right Said Fred’s “I’m Too Sexy” came up, so Carl put it on and all the grownups instantly started dancing. Amy sat there looking at us as if we were a little bit nuts. That made us laugh and dance all the more. 

We spent the rest of the long weekend at our mountain house, enjoying a bit of snow. The good thing about our driveway is that it is so steep it makes for great sledding. The bad thing about our driveway is that it is so steep our car sometimes can’t make it up if it is at all icy. When we first arrived it hadn’t snowed and it was fine, but we also hadn’t brought snow pants and Amy was the only one to bring boots. So on Friday after it snowed, I drove home to grab snow gear. When I returned, I couldn’t make it up the driveway. Luckily Carl was able to get the car half-way to the garage so he could use an extension cord to charge the car, which is fully electric. Otherwise we would have been in a pickle with not enough range to get home. We also have another hill that works for sledding so the car in the middle of the driveway wasn’t a deterrent. 

Yesterday the little bit of snow melted slightly and Amy was extremely upset. She had had so much fun with the snow on Friday, and she felt like there wasn’t enough left to do anything with it. I’m all for feelings and clearing them, but sometimes it seems like she gets stuck in intense feelings and that they won’t abate on their own. In such situations I make her have some water and a snack. So far that has seemed to help. I remind myself of this sometimes when things feel overwhelming for me. Just pause and take care of basic human needs and then reassess the situation. Amy rallied after her water and snack, and Carl added snow to the sledding hill so they ended up having a good time. 

Earlier in the week Sarah and I assembled a marble run together. That was a refreshing change of pace from her just wanting to do “sincere my dear” snuggles/napping with me and nothing else. Another nice Mom-Sarah time happened on Friday when we went on a long walk together. That walk started when she headed out from our time sledding. We thought she was heading into the house, but luckily I noticed her going towards the walking path in the woods. I trailed about 20 feet behind her, following her bright pink hat. She went quite a distance before looking back and noticing me.  She told me she was exploring. While I’m glad she wanted to go for a long walk, I did remind her that she needs to tell us before starting such a thing. It is one of those moments that is scary to think about how it might have gone if I didn’t see her when she left our driveway. 

Yesterday Sarah sat on my bed and pretended to be Toad waiting for the mail. This is from a Frog and Toad story by Arnold Lobel. Sarah delighted in saying it was her sad time of day, just like Toad. I pretended to be Frog sitting next to her waiting for the mail. I also wrote her a letter, as Frog does, and used a stuffed animal to be the snail delivering the letter. She loved it. We all took turns writing letters to Toad and pretending to be the delivery snail. Sarah read each letter, even the ones she wrote herself, and then resumed happily being in her sad time of day. 

May you all have warm snuggles, timely food, and company in your sad time of day.

November 21: Thumbs, Socks, and Baking

On Monday Amy fell during an indoor flag football game in PE and hurt her left thumb. It was swollen and bruised. She told me about it just as we were getting ready to go to swim lessons, so I didn’t do anything about it. Tuesday  Sarah and Amy and I tried in vain to get Amy’s thumb checked to make sure it wasn’t broken. We tried Urgent Care because I wanted a place with an x-ray machine. There was no wait to check in, but their x-ray machine was broken. We went across the street to Med Express. When the parking lot was filled to capacity, I should have just driven home. However, I parked two blocks away and we walked to the door. The door had a sign saying to wait in your car and call to register. I called. It was busy. On the fourth try I got through and was put on hold for 5 minutes. When I spoke to a person they said they were at capacity and couldn’t even put us on the list. I was told that we could come back in an hour to call to get her on the list, but we would have to be in the parking lot when I called. Um. No. We went home. Amy’s thumb has steadily been getting better so I am assuming all is well. 

About two weeks ago when Sarah had her piano lesson, her teacher was wearing piano key socks. As soon as we got home, Sarah put on her piano key socks. This was a huge change from her constant choice of Elephant and Piggie socks. This past week the girls received gifts of socks from a friend. Amy’s socks had cats and books, and Sarah’s socks had staffs and musical notes. Sarah put hers on immediately and didn’t want to take them off again even after two days when I said they needed to be washed. To her credit, despite some yelling, she did part with them. I ordered a few more pairs so now she can wear her new favorite socks daily.

Yesterday Sarah was excited to have two Anat Baniel Method lessons. She has been receiving such lessons since she was a baby. It is really gentle bodywork that helps wake up new neural pathways. Sarah has been requesting lessons for months. She loves her practitioner, who travels to Pittsburgh a few times a year, and she really loves watching buses as they pass the office window. In between her lessons we went to Starbucks and watched more buses. It was a good day.

The girls have been doing mostly-independent baking lately which I fully support by buying box-mixes. Amy is getting more confident about putting things in and taking them out of the oven. Sarah has been doing that part for a while, but ovens are hot and scary so Amy has been nervous and tentative. Amy loves baking. Sarah likes it but her real love is to make sauces with Carl for Hello Fresh meals. Or sauces that she makes up and uses with anything. She likes to combine ketchup, mustard, and mayo plus some spice packets, and then she dips every aspect of her meal in the sauce, whether it be a hot dog or grapes.

Sarah has grown 1/4 inch since March! This is huge because I thought she had stopped growing entirely. She is 4’9” and 1/4.” Amy has grown 2 inches since March and is 5’1.” Didn’t I just have infants?!

November 14: Balancing Acts

Carl had Veteran’s day off, which was fortunate since Sarah had a half day, but I was teaching and wouldn’t be home in time to meet her bus. Carl met her bus and later picked Amy up from her after-school activity. He also took Sarah to the park to ride her bike. She is getting better at using it as a balance bike and even used the pedals some when he held the bike to help stabilize it. Given that she has done her stationary Zwift biking for 2900 miles (over 200 hours) over the past year and a half-ish, she certainly knows how to pedal. So once the balance is there for her, she will absolutely be able to bike in a non-stationary pedaling way. To  put her biking distances and time in context, she has biked only slightly less than Carl has in the same time period. His biking has been outside on trails and in races for much of that, which is harder than Zwift, but still! The amount she has biked is notable.

Sarah’s mouth has some overcrowding of teeth on the bottom, so her orthodontist wants two removed. Several months ago she had 5 removed and had to be completely sedated. Given that she did well when her EEG leads were placed with the aid of laughing gas, I asked the oral surgeon at our consultation if we could try this surgery with just laughing gas and a pill to help her relax. He said that would be fine. So she is scheduled for the Monday after Thanksgiving, which is a day she has off from school anyway. 

Grandma made new pajamas and pants for Sarah out of multicolored musical note flannel. Sarah loves them. It is really wonderful to have someone who can custom make clothes to make dreams come true. We also had a nice dinner with Grandma and Grandpa on Friday night. 

In general I’ve been starting play relaxing music in the background while we have dinner. I’m aiming to expand the scope of what we all listen to and recognize, especially regarding classical music. Sarah usually balks a little because she would rather listen to her new favorite song, Josh Ritter’s “Girl in the War.” Otherwise it is going well, despite Carl and Amy insisting that all Enya songs sound the same.

Carl and I are enjoying an overnight date thanks to Sonia and her boyfriend who arrived yesterday at 1 and are staying with the girls until today at 1. Carl and I went out to dinner for the first time since the summer and this morning we will have brunch at a place that has tree-house dining areas. Unfortunately those specific areas are booked waaaaay ahead but we will still appreciate being surrounded by trees in the regular dining area. 

Yesterday Sarah and I had some clashing moments of discord. I don’t know why some things always catch me by surprise when they are as predictable as the sunrise. Almost every weekend day just as I am about to fix lunch, Sarah asks to me to do “sincere my dear.” That means she wants to snuggle in my bed and trade favorite phrases or take a nap. And every time she asks I feel frustrated because I’m hungry and want to fix lunch! Going forward my plan is to put her Sincere My Dear times in my calendar and plan around them. Maybe an earlier lunch or a mid-morning snack and a later lunch. Anything so I’m not thrown off balance and feeling grumpy. 

May you all be prepared for what you know to expect and may you find your balance easily.

November 7: Hip Hip Hooray

Trick-or-treating went well. It wasn’t too cold and the sun was even shining when the girls started out. Amy went with some friends of hers and Sarah went with Anna. Carl and I stayed at home to hand out candy, realizing how little we were needed as parents at that moment.

Everyone was well all week! We are still well! In theory, I know we are all well most of the time, but given the previous week with Sarah this still felt notable. Sarah didn’t have school on Monday so after 4 days at home she was in the groove of being home and did not want to go to school on Tuesday. It didn’t help that Amy had Tuesday off because her school is a polling place so it is always closed on Election Day. When Sarah protests largely in the morning it is easy for me to feel tense and anxious. Tuesday Sarah was full of screams and resistance. Carl was patient, creative, and loving as he encouraged Sarah through every step of getting ready for school. He didn’t panic about the time ticking away, but focused on keeping Sarah in good spirits even if there were detours from her normal morning preparations. He encouraged her to put on a bathrobe and slippers so the two of them could match for coming down to breakfast. They talked about lightbulbs and ceiling fans, specifically the one in the master bedroom. After breakfast they detoured to the basement to get a new lightbulb to replace one that had burned out. Thanks to Carl's brilliance, Sarah was happily ready for the bus. I will give myself credit for not interfering. That took serious effort too!

Sarah and I met with her neurologist on Wednesday. I asked about giving her CBD since her night-time startle seizures still happen despite increasing her anti-seizure meds. The doctor said actually, given the type of seizure he thinks she is having, he would not recommend CBD at all because in some cases it makes things worse. I’m so glad I asked! He did order bloodwork and will see us again in three months. Sarah handled the bloodwork like a champ as she always does. I told the nurse that the last time she had bloodwork done they needed to use a vein in her hand. This nurse felt confident she could find one in the front of Sarah’s elbow. After an attempt that involved moving the needle all around in vain (ahem), the nurse switched to Sarah’s hand. Next time I will be more forceful in saying to use Sarah’s hand and not attempt another location.

Amy got the first dose of the covid vaccine!! Her school held a clinic, which was great in terms of location. What wasn’t quite ideal was that one nurse didn’t show up so they were short-staffed. The line was looooong and slooooooow despite having an appointment. Luckily half way through our hour-long wait to get the shot, we realized that Amy could sit at a cafeteria table and do some of her homework. I was able to get my booster at the same time, so that was great too. Still, the whole process took 90 minutes by the time all was said and done and we were home.

We had been waiting until Amy got her vaccine to tell the girls about our plans for December. We will be going to Florida and spending a couple of masked days at the Harry Potter World in Orlando before we go to a rental house by a beach. They were both super excited, but Amy was bursting at the seams with joy given that she is the one most into witches and HP.

My hip is in much better shape now. A fellow Alexander Technique teacher suggested a way of resting a few minutes each day that takes all of the pressure off of my hip, and that definitely helps. The most strikingly impactful thing, though, was when I did my Alexander teaching. When I was in that mode it was almost as if I had never had a hip issue at all. How I held myself and moved changed to be clearer, more fluid, and less jammed down on my legs. Giving massages also helped me use myself in this good way. So it seems that all I have to do to recover is keep working and teaching. 

Carl had an exciting week that included a trip to New York City. He was in Times Square when Aurora, the company he works for, went public. Aurora develops self-driving technology for cars and trucks. 

I hope you are all well.

October 31: Halloween Preparations and Health Mysteries

Happy Halloween! Tonight we will have one house, two sorceresses, and one intersection walk sign that changes color and flashes. Carl’s costume, that he made, is the walk sign and Sarah absolutely loves it. When she first saw it she held it against herself, said she was a walk-sign robot, and said, “beep boop beep boop” as she walked around the house.

Last Sunday we carved pumpkins. The kids needed very little help. We cut the tops to make lids and helped with the innards. Amy can’t stand the feeling of the seeds and other wet entrails. Sarah needed a little help with the carving, but that was it. Amy made a cat silhouette, Sarah made a Peppa The Pig head, I carved around a tracing of my hand, and Carl created a bat. 

There have been a couple of moments in the past months when Sarah spontaneously felt sick and then seemingly as quickly felt well again. I have no idea if these are related to her nighttime startle wakings which would relate them in some way to seizures. I do know that on Tuesday morning Sarah’s teacher called to say Sarah wasn’t feeling well. It didn’t seem to be a passing thing so I went to get her, leaving one of my teacher trainees in charge of my class. Sarah said her head, throat, and ears hurt. When we got home I gave her a Gatorade and she rested. She didn’t nap. She had more to drink. She drank quite a notable amount before needing to pee at all, which made me think she had been dehydrated. She also seemed perky and well after having the fluids. Wednesday and Thursday she went to school because she really seemed to be totally herself. 

Thursday when Sarah got off the bus she clearly wasn’t feeling well at all. She listed the same complaints as before but also seemed sick to her stomach. I made an appointment to see her doctor within the hour. About 15 minutes after making that appointment, Sarah was covered in extremely itchy hives! I freaked out, wondering if I should take her to the emergency room. Since she was still breathing normally and her lips and tongue weren’t swollen we decided to stay with the original plan of going to her regular doctor. Sarah kept asking me for medicine to help her feel better but I didn’t know what to give her. It had been less than 24 hours since she last had Claritin so I didn’t think I could do that. The nurse and the doctor both asked about/suggested Benadryl. I had to remind them that Sarah can’t have Benadryl because it lowers the seizure threshold. Her doctor then said she could have more Claritin because it was close enough to 24 hours. That started helping within about 10 minutes. We have no idea at all what caused the hives. As far as we can tell she didn’t have anything that she is allergic to. While we were at the doctor’s, I asked Sarah how her head, throat, and ears felt. She said they were fine! She tested negative to strep and covid and her ears looked clear. And yet she had a fever. I assume that may have been related to the hives since her skin was flushed and she didn’t have a fever before the hives erupted. She didn’t have school on Friday anyway, but also seemed totally well again by that morning. This all felt like one big mystery. 

The difficult thing with Sarah and sickness is how to evaluate what she says. We know from the past that sometimes she says things hurt because she knows that is how to get out of school or to sleep in our bed. She also sometimes says “no, no thank you” when asked if something hurts because it actually does hurt but she wishes it didn’t. At least, this is my best guess as to how to interpret what she says. Ever since Tuesday Sarah has continued to occasionally say that her head hurts. This is often reported at bedtime, so I think it may be her way of saying she wants to sleep in my bed. But when pushed on the details she maintains that her head really does hurt. Yet she acts totally well! So either she actually is totally well or she has had a headache possibly since Tuesday in which case I freak out a bit. We see her neurologist on Wednesday. I don’t know if he will have any ideas, but I’m glad to have the appointment. 

I may have jinxed my hip with my last update in which I said I had found a yoga routine that was really helping. I don’t know if I did the yoga routine too many times or what, but this past week my hip has been extremely unhappy and painful. I’ve been limping and walking as if I had a wooden leg, especially on stairs. I’ve had times when it is slightly better, but it’s still not back to normal. So this is frustrating and not at all what I ever envisioned for my 44 year old self. 

I hope you are all well and solve all of your mysteries.

October 24: Doors, Musical Notes, and Cats... Tailoring Many Aspects of Your Life To Fit You

We are enjoying a wonderful weekend with Mom-Mom and Pop-Pop. There have been Conversations with Mom-Mom, where Sarah and Amy play with Mom-Mom in her room. Sarah, sometimes known as Door, falls and breaks her nose and needs the aid of Dr. Mouse, also played by Sarah. Speaking of doors, Carl and Sarah went to Lowe’s to get something and Sarah was delighted by a display of 6-panel doors. Among many other names, I am often called Mama Door and Sarah is Baby Door. 

It is that time of year when we assess fall and winter gear and realize how much the kids have grown over the past year. Sarah needed new coats and wanted a Musical Note coat. As you might imagine, this wasn’t readily available at Target. Instead, we purchased a small white coat from the women’s section and used a Sharpie to draw musical notes and symbols on it. She loves it. Meanwhile, Amy has outgrown many pairs of pajamas so she helped Grandma make a pair of pajama pants that are long enough for her ever-lengthening legs. 

Amy had some math homework to do this weekend that required her to know the order of operations, such as attending to what is inside the parentheses first. She wasn’t understanding why so I translated it into cat language. For instance instead of looking at 6x(3+4), we looked at Litterbox x (cat poop + cat pee). Obviously, before you scoop (multiply by) the litterbox, you would want to wait for the cat to do all of its business inside the (box). I also revised the Please Excuse My Dear Aunt Sally to Persians (Persian cats) Eat Mice, Dining After Sunset. I think this helped, but time will tell. 

Mom-Mom used to tutor people with math anxiety. She has talked with Amy about how Amy has a smart math brain and if she doesn’t understand something in class she could be very brave and ask a question and that probably other kids would like the help too. I don’t know if this will lead to anything at school. I do know that many kids are struggling and having feelings about math this year. It can’t hurt to have many people assuring Amy that if she is struggling then she isn’t the only one. I also think it is ok if she is the only one struggling and that doesn’t make it less valid. But it could make it harder to ask for help if she thinks she is the only one. I know she is learning a lot at school, but when she has homework we often need to go over things as if for the first time.

I am tentatively hopeful about my right hip. For many years it has intermittently been uncomfortable to varying degrees. It often doesn’t interfere with my life, but I almost always can feel a difference between my left and right sides. And sometimes I am sort of limping instead of walking. Yoga has helped, but recently I discovered one particular routine by Yoga With Adriene on youtube that really makes a positive difference. So for the past week I have done the same routine every day and I have had moments of walking when I realize I’m fully comfortable and faster in my pace and my hip isn’t hurting at all. Knock on wood, my head also seems to be in good shape in terms of headache whispers. I still get them, but they are the kind that I can get to go away if I change my thinking and become more present in my body.

Yesterday Amy made bat cupcakes, with broken Grabbit cookies for wings and candy eyes for the, well, eyes.  She did almost every step herself. I was just around to offer some light guidance and to frost the cupcakes. Evidently when Amy was describing the plan to Mom-Mom, she said that the candy eyeballs don’t taste like real eyeballs. This lead to much laughter about whether or not Amy had eaten real eyeballs in order to know the difference. 

Another highlight from the week was Amy getting American Girl dolls clothes from Grammy. The best part was a tiny pumpkin basket to match Amy’s basket for trick-or-treating. Amy and I were beside ourselves about the cuteness. 

May you have an abundance of your equivalent to musical notes, doors, dolls clothes, and cats.

October 17: Not Making Feelings Worse By Judging Myself for Having The Feelings in the First Place

Surrounded by the silent cacophony of my own judgements about my feelings, I cease to notice them as optional. Inspired by Glennon Doyle’s encouragement to not abandon myself, I have started to notice when I condemn my reactions and to stop the condemnation and start accepting the feelings as rational. For example, yesterday had some moments with Sarah that felt extraordinarily stressful, but then I compounded my difficult internal experience of stress by telling myself that I shouldn’t be so stressed and that anyone else would handle it better. I could feel my head muscles tightening, as if preparing for a headache. The simple step of saying to myself that it was ok to be stressed, made sense to be stressed, and that others in my shoes might feel the same, helped my head muscles release a bit. I was still stressed, but I wasn’t adding insult to injury by fighting myself about the feelings. I wasn’t abandoning myself. 

This past week I realized that Sarah and I had been getting along pretty well for a while and that instead of focusing on our clashes I could notice how much she loves me and seeks connection with me. I could trust that connection and not give up on requests of Sarah before even making them. I also let Sarah watch more tv than usual. Sure, there has always been the occasional day with unlimited technology, but I let that continue for much more of the week when there was down time. I told myself that staying relaxed myself was worth it and I stand by that. But… perhaps that lulled me into forgetting how trying certain moments can be. Which brings me back to yesterday. 

We attempted an outing to two museums with our extended family. At the first museum we knew it might not have a lot to appeal to kids, but I hoped there would be enough. I hoped there would at least be a fun ramp to traverse. Sarah’s chosen activity turned out to be riding the elevator by herself. In hindsight, maybe I should have let her do that repeatedly for half an hour. But in the moment I didn’t want her to do that, which led to much resistance on her part. Instantly, I went into high stress mode, wishing I was anywhere but in that moment. In short order, the girls and I returned to the car. Then we went to the History Center, which was the next planned destination. We got there well before the others, but that was ok. The girls love Kidsburgh and spent a couple hours happily playing. While Grandma stayed on kid-duty, I got to walk around the museum a bit. But then I felt guilty for being away from kid-duty and that Grandma wasn’t able to walk around the museum. My hip hurt (nothing new but it comes and goes as to the severity) and I felt like I better enjoy every minute of the museum instead of not wanting to read every word. So I felt guilty for not enjoying the museum more. Eventually the kids timed out on even the fun kid stuff, so I took them home for quiet time, pizza, and a movie while the rest of the family went out together. It was hard not to feel a little sad about missing the family time, but that probably would have been more stressful if the kids were grumpy and wilted. 

Aside from yesterday’s challenges, the week went well overall. Amy has noticed that math is easier and she is faster at completing problems now that she has her multiplication and division facts memorized. Sarah’s new favorite thing to do with me is take turns quoting Blippi, a fun tv personality from a show with the same name. Sarah’s favorite line is, “There’s so much to see and do here!” Then she likes to spell “h-e-r-e” and say she is Baby Here. 

One afternoon we went to the playground. I felt the quintessential sadness of a parent realizing how much her kids have grown and that the days for playground trips are numbered. Especially playground trips requiring a grownup’s presence. I wouldn’t want to rewind time nor do I want another baby or young kid. But I still felt the poignancy of appreciating a moment in time that may be fleeting. I was also stunned to watch Sarah run while pushing the merry-go-round and then hop on while it was in motion. When did she learn to do that?! Sarah’s is all about going down twisty slides lately and after watching some of a Blippi episode I know why. There is a twisty slide in the episode. Well, maybe letting her watch Blippi ad infinitum has more benefits that I realized. 

Much love to all of you. Feel your feelings and don’t abandon yourself by telling yourself you shouldn’t feel that way.

October 10: Math Play to Solve Problems and Lessons in Letting Go

Sarah is the most talented and ever-surprising namer of herself and others. This week she called me “Mama Circle-With-A-Line-Through-It” and dubbed herself the same, just as the baby.

Amy has been roller-skating a up a storm, and changing her plans for her Halloween costume as rapidly as those roller skate wheels spin. She is alternately going to be a witch, a mermaid, a sea witch, Anna from Frozen, or a sorceress. 

Last Sunday Amy took a practice math test. Wally, the stuffed animal wolf that visits when Grammy and Granddad visit, took one page of the practice test too, with my help. Embarrassingly, even the problem he tried to do correctly he got wrong because he was going too fast. He was most proud of his drawing a stick figure as part of one answer and of writing “purple” for another. Amy found some good laughter in Wally’s answers, which helped with her tears. When she doesn’t understand a math problem or concept it touches something deep within about not being smart or good enough. The feelings are hard-core and no learning or help can happen until the feelings clear. After a long break, Carl realized that with the problems that were written out with more words and not all numbers, Amy was fine and understood. So he rewrote the trickier ones with more words and showed her how they were the same problems and that she really did know what she was doing. Then he brilliantly played the role of a math villain trying to trick her, but she foiled his plans every time!

I’ve had some headache whisper scares this past week. I’m used to having tiny trace headaches that remind me to be present and not stress so much. But the recent whispers felt like they came from a deeper, less controllable place. On top of working to notice what emotions might be behind the whispers, I had to give myself space to move through the terror about the cluster headaches possibly returning. I’ve journaled and cried and breathed. One of the most helpful things seems to be giving myself time to truly do nothing and to tell myself I have nothing to do. There is always a long list in my head of things to do and other people I want to help with their various pains. But if I don’t stop this headache train before it leaves the station then I will be no help to anyone. 

Two moments this week highlighted how important and impactful it is to tend to one’s own self first and the impact to others will follow. One moment was mine and the other was Gregory’s. My moment was when I was giving an Alexander Technique lesson to someone. As I freed my own neck, my student gave a huge sigh as things shifted and released for them. It is easy to think such a thing is coincidence, except for how often the coincidences happen in general and did specifically during this lesson. I keep thinking about how I can better free myself during parenting tightness, without worrying about the outcome. My goal is just to be easier in myself. Easy to say, but so much harder to remember to (un)do. 

Here is Gregory’s moment in his own words…

"In the midst of whatever play we were playing, I found a paper airplane.  I threw it.  Sarah tried.  Her grip and motion were not amenable to the plane actually flying.  I asked if I could show her.  Akin to putting a person in the right position for Yoga or Alexander Technique (as my memory serves with you, Jenny).  Sarah agreed.  We got her in position, I helped her get the right grip, and she threw the thing very successfully.  She wanted to make another. Well, I did and she was like, “Yes!”  So we’re sitting at her desk, her centered in the Anna-chair and me on the stool to her left.  I began making an airplane I learned how to make in my youth.  As I started the first fold, and I have to tell you that when I make paper airplanes, my neurodivergence and perfection streak really kicks in reflexively.  Sarah reflexively, in a bid to participate, pushed down and I reflexively started a blocking move BUT TOTALLY CAUGHT MYSELF.  I think Sarah sensed the tension but then I was smiling and I said, “Oh wow!  That’s a perfect fold.”  She paused.  Smiled.  Kissed my right forearm.  And the world was right.

She gave me that forearm kiss several more times.  I like to think that she was “rewarding” my self-control. My catching myself.  That is, she was, in that moment, MY guru or teacher or clinician.”

Yesterday we went to Simmons’ Farm to get pumpkins and play. Sarah loves to pretend to drive the firetruck. Amy loves the giant hamster wheels and the loooong slide. It took much determination on her part to make the slide work for her because it wasn’t as fast and slippery as in past years due to the recent rain. She persevered and had a great time overall. Carl and I marveled at how we have big kids now and they are really not at all little kids. How did this happen?!

Carl is riding 130 miles for a bike race today!! 

Since it is October, we are starting to watch Halloween movies and tv shows. One of Amy’s friends suggested “Hocus Pocus.” I said, “Wow. That’s a really old movie. It came out when I was young.” Then I realized what I said and cracked up. It also turns out that I don’t remember ever seeing the movie and was probably confusing it with something else.

I hope you are all well.

October 3: Family Visits and Math Struggle-Fun

We are enjoying a wonderful visit with Grammy and Granddad. On our drive to meet them at our mountain house we had a short phone call on speaker phone. As Carl and I said our goodbyes, from the back seat two voices chimed in with, “Meow!” and, “Musical note!” It was adorable. The only trouble with the visit is that it feels like it is going too fast and is too short. 

Amy has had some big feelings at bedtime Friday and Saturday because she wanted to stay up later than usual, which we allow on weekends. Sarah didn't want to stay up much later than usual and wanted the light out in their shared room. When we don’t have company then they each have their own room. When we do have company then Amy reads in my bedroom before she goes to sleep in the kids’ shared room. Usually this works mostly smoothly, but this time around Amy was very upset that Sarah wanted to go to bed. Sarah was upset that Amy didn’t want to go to bed. Amy was also upset about how quickly the weekend passes and that Sunday doesn’t feel like a weekend because so much of it is getting ready for the week ahead. I think this school year is harder for her than past school years so this feeling about the weekend is intensified.

Last Sunday, Amy had some big struggles and feelings regarding math homework. Doing long division with decimals is new and challenging. Carl and I each spent time helping her and she did get through it, but it was a loooong day. I had been realizing that she really needed to have her times tables memorized and that she didn’t. So I made flashcards. After a week or so I realized that I needed to help her know how to use them effectively.  While resistant at first, she did a wonderful job going through them with me throughout the week. I picked a small pile of cards each morning, and then as we went through them I would pick the equation that gave her the most pause. That became our equation of the day. I would ask her repeatedly, changing the order of the numbers, sometimes asking as a division question, or sometimes whispering the equation as a secret I had to tell her. It felt good to move beyond math feeling onerous to having fun with it. 

Granddad used to teach multiplication and division to his students and would purposely pretend that he didn’t know the answers. He also had Chris The Multiplying Cat beanbag animal as his assistant. Chris usually got the answers right. As Grammy quizzed Granddad, Chris, and Amy, Granddad really did not know his times tables. He had a perfect deadpan, yet somehow believable, way of answering incorrectly. Amy was cracking up, especially when Granddad said the answer to one equation was “green.” 

Sarah’s week went well overall. She delights in spending time playing restaurant with Grammy. She also reads books with Grammy and lets Grammy read books to her. Note that Sarah doesn’t let me read books to her anymore. Yesterday had one weird blip when Sarah suddenly didn’t feel well. She had been talking to Granddad, then suddenly got up and said she was dizzy and had a headache. She got in bed and had some Advil and water. A couple minutes later she had yogurt and then seemed almost back to normal. Within an hour she seemed fully herself. My adrenaline really got going when she first didn’t feel well, as always happens. It is often difficult to truly ascertain how Sarah is feeling. When she really feels yucky, sometimes she says she feels fine because she really wants to feel good. When I asked if she felt dizzy she said, “No. No thank you.” Other times, when she wants to get out of something she may play up a headache when there isn’t one. She also will describe, seemingly out of the blue on any given day, how she felt after a seizure that was many months ago. I think time is a very different thing in her mind, and timelines aren’t actually lines but rather piles or strands that get all intertwined. The only thing that told me Sarah was truly feeling ok was when we went for a walk and she started happily running down the road to catch up to Grammy. 

Sarah’s neurologist has increased her level of oxcarbazepine, her anti-seizure medication. We are titrating up to get to the appropriate new level. She is also on an increased amount of miralax after I spoke with her PCP. The good news is, while Sarah’s x-ray had me all worried about scoliosis, her PCP said that wasn’t the correct xray to diagnose such a thing. It could have been her positioning. It also hasn’t ever been something noted on her well-visits. The PCP said we could do another x-ray to check for scoliosis if I wanted, but I opted not to at this time. That feels like it would be an overload of imaging and hospital trips.

My intention for the past couple of months has been to have Mondays during school hours be my book-writing time. Rarely does this actually happen. I have either been substitute teaching at the massage school, hanging out with whichever kid didn’t have school, driving home from something, or I’m not sure what. This past Monday I did have my day. It was glorious to have a chunk of a day that was truly just for me and I didn’t have anyone else to care for in any way. I even got to have lunch with a dear friend. I realized that my assumption of being able to work for 4 hours straight on my book is completely unrealistic. I can maybe handle an hour, but then I need a break. Still, it has been years since I set aside a regular day to be just for me. It felt so freeing and rejuvenating. 

September 26: A Week With Too Much

This past week felt extremely packed from Monday through Thursday. I felt like I was barely keeping up with what needed to happen, barely breathing, barely staying afloat. What is always an odd juxtaposition with that feeling is that when I’m actually teaching or giving a massage then I’m not stressed or feeling time pressure. It is just all the in-between stuff. Plus there were many added things that we don’t normally have in a week.

Monday I got home from visiting my friend (a 6-hour drive away) in time to meet Sarah’s bus and take her to her piano lesson. That meant leaving basically as soon as she got off the bus. For this week I will see if she can get off at the bus stop prior to hers, which is a block away from her piano lesson. After piano we have 45 minutes before it is time to get ready for swim lessons. 

Tuesday, as soon as I got back from teaching, I got Carl’s help to put our cat in her carrier for a vet appointment. She has been over-grooming and scratching too much for a while. Prednisone helped with the scratching, but the vet doesn’t want her on a steroid forever. So we switched to a liquid allergy medication. The med she was on to help with the overgrooming meant she wasn’t eating her dinner so we switched to something that I put in her ear. I zoomed home from the vet to meet Sarah’s bus. As soon as Sarah got off the bus, I took her for an x-ray of her abdomen. I have been wondering for a while if she was dealing with constipation/impaction despite daily miralax. It turns out that I was right to be concerned. Additionally, the x-ray shows lumbar scoliosis (her spine in her low back curves to one side) which I am distressed and concerned about. I haven’t been able to speak to the doctor about it yet. Overall the process went smoothly except for feeling like a grumpy mean mom in the waiting room as I tried to help Sarah with technology. I kept thinking “Oh my goodness, we are that family! We are the ones causing a disturbance and everyone is looking at us.” I also felt grumpy and mean as Sarah went into screaming mode when they wanted her to take off her clothes and put on a robe for the x-ray. After a minute of screaming I went to ask if she could please keep her shirt on because she really didn’t want to take it off. They agreed and then all was well. As soon as we got back from the x-ray it was time for her shower and then for her session with Sc. Then I went to get groceries, as I usually do.

Wednesday I had a longer work day than usual so Anna met Sarah’s bus and stayed with the kids until Carl took over at 7. I had time after work at the massage school to come home for one hour and make dinner, but then it was time to go see my evening client. I used to always see an evening person on Thursdays, but just changed it to fit our schedule better overall. Anyway, it just meant that Wednesday felt different than usual. 

Then Thursday was mostly normal but was still full with work and an unexpected but necessary errand of going to get Sarah’s backpack where she had accidentally forgotten it in Anna’s car. In the morning we discovered it was missing and there was much upset on Sarah’s part and much tension on my part as I worried that her upset would mean she wouldn’t get ready for the bus. At least she was able to tell us where it was so we didn’t spend our morning tearing apart the house. Amy leapt into action with letting Sarah borrow one of her backpacks to which Amy taped paper cats and musical notes that she drew. It was picture day so Sarah got to wear her favorite new shirt with cats and musical notes. She wore a matching mask and her musical note pants made by Grandma. I also took the kids to get much needed bang-trims on Thursday afternoon, but we had to leave as soon as Sarah was done with her SR session with G. I felt like I didn’t really exhale until Thursday after the bang trims, aside from when I was breathing relaxedly while working!

Friday morning Sarah’s bus was so late that I drove her to school (after many minutes of waiting and wondering and communicating with the other parents on the route and having Sarah scream in upset) and had my fingers crossed that the afternoon bus would be timely. It was.

I have felt generally mad at many people and many situations for most of the week (aside from when I was working). So this week felt hard and I’m glad yesterday and today are relaxed days. I’m letting the kids do extra technology because I feel a need to be a lump on the couch. Overall I think the past few weeks have felt more stressful than anything since the early days of the covid shut-down. Maybe I am just forgetting other hard times. I’m sure I am. But still. It hasn’t felt easy.

Carl was away all day yesterday for a bike race. He has a work meeting this morning and tonight leaves for the week for a work trip. So extra Peppa Pig episodes and naps for Sarah. Amy had a long play date yesterday and will probably so do again today once she finishes her homework. I will not do much.

On a more positive note, I leave you with this small conversation Carl and Sarah had yesterday:

S: The boat goes up, and the boat goes down. The boat goes up, and the boat goes down. 

C: What’s that from?

S: Peppa the Pig

C: What’s it about?

S: A boat ride with Grandpa Pig

C: Why does the boat go up and down?

S: Because they are singing, “The boat goes up, and the boat goes down.”

September 19: Results and Improvements

Sarah’s EEG has been read but her neurologist wants to consult with other epileptologists before giving his suggestions to me. He thinks Sarah’s moments of waking with a start may be seizure related. The results that came from whomever read her EEG also indicate that they are possibly seizure related. Even though that confirms my suspicions, learning that initially had me feeling overwhelmed by sadness. I want my baby to be ok! I know she is 14 and not a baby, but that feeling of wanting to protect from harm never goes away. I also know this is probably good news in that maybe the solution is just increasing her meds a bit. If the startle moments weren’t related to seizures then we would have more of a mystery. 

Sarah’s bus situation seems to be resolved with a good and regular driver (knock on wood). The driver delights in the kids and engages them in activities while they drive, such as counting how many dogs they see. 

Amy’s PSSAs are almost done. Just a few more days this coming week. I learned that I can send a snack with her so that she doesn’t have to make it till the 1pm lunch. I don’t know how easy it will be for her to find time to have the snack, but hopefully that will work. She says she is usually one of the last kids to finish and she hates feeling slow and then it’s not as quiet in the final minutes. 

Amy had some math problems from her class work that she needed to finish at home. When I glanced at one and realized she needed to add more detail to her answer she imploded with feelings. It is hard to think when a problem feels overwhelming. After sharing ideas for how we could destroy the math sheet and after tears and snuggling, she was able to approach some of the problems again. While she did so, I talked with Carl. Together we came up with the idea of writing a new problem similar to the original but all about cats. I did so and showed it to her. She instantly understood how to go about solving it and explaining her answer. All I did was change the text from something about apps and data storage amounts to cats and their weight. So now we know for the future that if she is feeling overwhelmed or stuck about math, then we just need to translate the problem into Amy language of cats or witches. 

I am currently visiting one of my best friends of 40 years. We hadn’t seen each other for a year and a half. Friday night I attended a Pink Gloves Boxing class that she teaches. It was so fun, and it was a great workout. I’m still feeling it today. I wish that Pittsburgh had such a class. Yesterday we went for a beautiful walk in the woods, spotting a few small frogs and an ent (a baby newt). It is wonderful to be together. And I have slept incredibly well! 

Carl and the girls are having a Dad Weekend. Yesterday they went to a lake beach. When he sent me some pictures I marveled at our big grown-up kids. How did that happen?! I know Amy grew 1/2 an inch in the past month. Sarah probably isn’t growing taller anymore. But weren’t they just infants?!

September 12: Several Flavors of Stress

We are still waiting to hear from the neurologist about Sarah’s EEG. It has been almost two weeks and that is the time frame I was told to expect. Her sleep this past week has been better overall with fewer times of waking with a start. Most nights she still comes into my room around midnight and asks to switch beds with me. In the past I used to resist this some of the time, but lately I just want to sleep no matter how it happens. Plus, when I am in her bed it is the bed frame that was mine when I was younger so there is something nice about that. 

Overall I know this past week went quite well, but it felt stressful. Amy only had three days of school due to Labor Day and Rosh Hashanah. On Tuesday Amy and I made a cake following a recipe from one of the books she recently read and loved. It was a Delicious Orange Cake. That was the title of the recipe and the result was true to the claim. It was also really easy to make, unlike petit fours. Since Amy is an amazing Playdoh cake maker, creating multiple layers and covering her creations with rolled Playdoh that looks like fondant, I thought maybe we could make petit fours. Ha! I will certainly appreciate them more when I eat them elsewhere but I’m not going to make something that takes so much time, requires such precision, and involves 3 sticks of butter just in the cake batter! Anyway, after we made the cake, Amy had a playdate with her BFF and then had her usual time with Sc. She had such a fun day that she was not looking forward to school on Wednesday, which is quite unlike her. She normally loves school. But it wasn’t a normal day ahead of her. It was PSSAs. This was her first time taking them, even though normally she would have done so in 3rd and 4th grade, but Covid-19 interfered with that. She was nervous about the testing.

The days with PSSAs were fine, especially after the slight chaos of the first day was smoothed. However, my mama-bear grumble is that on the test days her class didn’t get lunch until 1pm!!!! She has breakfast at 6:30am!! For Thursday and Friday I gave her a second breakfast at 7:30, but still. That is a very long time to go without food. And the school wants them fed and rested to be their smartest!

Meanwhile, some of you may be aware of the shortage of bus drivers in Pennsylvania. It is causing massive problems. From what I have read, the difficulties we had with Sarah’s bus pale in comparison to what some have experienced, but still. Our experiences have been stressful. I don’t like my morning and evening plans to feel like a roll of the dice as to what happens. If there is no bus driver for Sarah’s route, that is ok! If they will be late, that is ok. But the bus company needs to tell me that so I can plan accordingly. Not that I don’t super love standing by my front door for half an hour every morning with my eyes glued to the street while Sarah gets impatient and anxious, but I could do other things with my time! Like drive Sarah to school so she will be on time. 

One morning when the bus was late, the mother of the kid who gets picked up before Sarah called the company and was told the driver was 20 minutes late. But by that point it was already 20 minutes late to get Sarah and we live 15 minutes from the first kid, so the bus was way more than 20 minutes late. When I called 10 minutes later I was told there was no driver for that route! I just don’t understand the lack of communication. I understand the lack of resources and that that will just suck sometimes, but if I am not told what is going on then I can’t make accommodations. If parents are told different things, then how do we trust anything we are told? So far we have had afternoons when Sarah was returned home one or two hours late. We have had mornings with pickup half an hour late or not at all. Friday morning the bus was half an hour late and when I called the company I was told they were trying to reach the driver but couldn’t. When the driver did arrive (and note that it is a new driver every day or two), she said she got lost. I asked if she had GPS. She said her phone was too old for GPS and she was following printed Mapquest directions!!!!! Why do all the buses not have GPS as part of the bus equipment?! If it is a lack of funds, then tell the parents and create a gofundme and I will pay for GPS! 

I will give this company another couple of weeks to get their communication $*^T together and after that I think for my own sanity I will have to drive her all the time. Sarah loves riding on the bus and I love not driving 40-50 minutes round trip twice a day. But I need something reliable.

Meanwhile, on Thursday and Friday there was no crossing guard at the one big intersection Amy walks through going to and from school. In the mornings Carl or I walk her to the intersection so if there is no crossing guard we can help, but until these two days, there has always been a crossing guard. I didn’t realize that a lack of a guard in the morning meant no one in the afternoon either. Now I know. Amy was totally stressed on Friday when she got home. She said it took three rotations of the light for her to feel safe to cross on the all-way walk because cars were sometimes still going through the intersection when it was her turn!!!!!! I am glad she did such a careful job. I know there is no way for the crossing guard company to communicate with parents when there won’t be someone there, but I wish there was. As with the bus situation, if I know what is happening then I can make changes accordingly!!

Yesterday morning it was clear that the girls had feelings built up from their weeks of school because they started the day at odds with each other from moment one. After getting some feelings out in various ways, and after a trip to a new bakery with Carl, they had a better day. At the bakery they saw a friend who was wearing a shirt with cats and musical notes. Sarah really really really wants that shirt. Carl was able to find it and order it for both girls since it speaks to both of their loves, but now Sarah is really really really impatient for it to arrive. Amy secretly made a drawing of a mouse wearing a shirt with cats and musical notes that Sarah could color. Then she made a treasure hunt with clues for Sarah to find and follow that would lead to the coloring page. I’m always amazed when Amy can switch from hating Sarah to creating something so full of love and thoughtfulness for her. After a fun outdoor playdate with a friend, Sarah followed the clues and found the treasure. 

Overall my feelings for this past week can be summed up by a series of !!!!!!!! There was some unexpected kerfluffle at work to be resolved and I did so quickly. I felt stuck and overwhelmed with writing my book and with every change I made I worried that I was ruining it instead of improving it. So that was (is) stressful too. At least I had the bright spot of receiving my Tiny Chef doll in the mail. But still. !!!!

So,  love and !!!!. I hope any of your !!!! moments have been exciting rather than stressful.

September 5: An EEG, Camping, and Muffins

 I forgot that today was Sunday! Since it is a long weekend, today really feels like Saturday. Thus the later-than-usual update. 

This week has not involved a great amount of sleep. Sunday night after dinner Sarah wasn’t to have any food. After 3am she wasn’t to have any water. I slept lightly, on alert for sounds of her getting a drink. This was in preparation for sedation for an 11am placing of the leads for an overnight EEG. A few years ago when Sarah last had an EEG it took two of us to hold her down for the lead placement. So I requested that things be different this time around. The doctor was planning full sedation for half an hour but I explained that I thought partial sedation was an option. She said they could start with laughing gas but place an IV port in case they needed the full sedation. Sarah did beautifully with the laughing gas and needed nothing more. By the time we got to our hospital room and she was allowed to eat, it had been 11 hours since she last had water and 17 hours since she last had food. As you can imagine, she was very hungry. Since it takes about an hour for food to be delivered from the cafeteria, I was glad I came with yogurt and snacks. 

Sarah and I had a peaceful day at the hospital with unlimited iPad use until the battery died because the charger I brought wasn’t big enough to keep up even when it was plugged in the whole time. The break from technology was nice. Sarah and I snuggled on the sofa and made a paper replica of a Laughing Bag. Years ago we had a yellow laughing bag that laughed when you squeezed it. Having laughing gas made Sarah think of the laughing bag. In customary Sarah fashion, she absolutely had to have it, but was fine with a paper version stuffed with paper towels and with the laughter supplied by me. 

At night in the hospital Sarah had several times of waking suddenly with a start, sometimes sitting up. She does this at home on occasion, sometimes with such velocity that she falls out of bed. I’m glad it happened during the EEG and I could press a button to get it noted on her chart. I’m still waiting for the results. These moments don’t seem like seizures but I wonder if they are related. 

Every night since the EEG she has had many such moments. Since Carl was away for a few days, Sarah slept next to me and I had many times of going from a sound sleep to saving Sarah from falling out of bed or settling her, my heart racing each time. 

On Tuesday I kept Sarah home from school because I thought she might be tired, even though we were home by 7am so she could have been to school on time. Anna came to be with her while I taught a class. Anna is one of Sarah’s favorite people in the world. As a testament to how tired Sarah was, she napped while Anna was at our house.

Sarah’s school days went well and she even was in good spirits on Friday when a bus scheduling snafu meant she got home two hours late!

Amy had a good week too, and my absence for a night helped her appreciate all that I do. 

We are camping for the weekend. Last night was very rainy but we stayed snug and dry. I made muffins to assure that we had plentiful snacks. A good thing too because Amy has eaten 8 today! It has been abundantly clear at times how everything is wrong with the world when Amy is hungry (but doesn’t feel hungry) and all is right with the world after she has eaten. Sarah can be similarly hangry, as can I. Muffins to the rescue. 

Today a new family set up camp next to ours. Sarah promptly went over and began a connection. Both girls have been crafting with the other kids because luckily that family brought enough to share. Note to self for the future: pack craft projects! I love how Sarah initiated doing an activity with the kids, even if it was parallel play. 

Despite the rain we have enjoyed time at the lake beach at the campground. Amy is a mermaid and swims until she is too cold to continue. Sarah didn’t swim but enjoyed the large umbrella we rented. 

I hope you are all well and have slept soundly.