MOVED

 Hi all, my blog is now at https://www.watchingsarahrise.com/category/sarah-rise-weekly-updates/

September 1: A Big Party and A Big Change

My cluster headache story arc is always, always, always the same, and yet every time I think things will be different. This thought and hope are true, because I do always try new things and they always do work some of the time. Yet, despite the nuances, the basic shape of my experience repeats every time. The cluster starts in a mild-enough way where I wake almost every night once or twice with a headache that I can get to go away in 15-60 minutes and then sleep more. When I wake again it is either the morning and I’m good to go, or it is an hour or so later and I have another headache. Sometimes in the morning I have lingering traces that stay with me for most of the day but don’t impede my functioning. I do some combination of yoga, breathing, relaxing, moving, crying, hanging my head down or lying face down on the rug, gentle exercising, imagining I’m a polar bear, ice, heat, and maybe Imitrex nasal spray (but I’m only given 6 per month because insurance people clearly never have had cluster headaches). I accept and embrace the experience and that helps too. And then… it starts going on a little too long and gets more intense. My reserves are ever lower because my sleep varies between 2-6 hours of sleep per night, usually punctuated by pain that feels sort of like gentle or not so gentle lightning going through the right side of my head. I start feeling more desperate. I start fearing bedtime because instead of a respite it is when I go into battle. I communicate with my doctor and we have new plans for things to try (although I always want to avoid Emgality because of my intense fear about those giant needles). In this cluster, I have reached that tipping point from “this is totally manageable” to “I really can’t keep this up much longer and I’m scared to sleep.” Yesterday I started a new (to me) steroid. Although I woke frequently I didn’t have a headache. I could feel the rumblings, but I could tell they were being tamped down by the steroid. I am hopeful that this will break the cluster. If not, I still have more things to try before Emgality. Fingers crossed. 

Sarah had her first day of school on Tuesday and was so excited that she woke at 4am instead of sleeping in until 5:30 like she could have. She was outside and ready to go before her bus driver arrived, so she grabbed a broom from our porch and galloped back and forth on her broom horse to pass the time. After a giant hug with her driver when he arrived, off they went. We could see her smile radiating through the passenger window. Since the week was very hot, with highs in the 90s, Sarah’s school adjusted the dress code, but only for the boys. I asked for wiggle room because Sarah isn’t really a skort-wearer, and was denied. The normal dress code is that everyone can wear khaki pants, but girls have the option to wear a skort. This seems unfair to the boys because they have no way to have bare legs on a hot day. The adjustment for the heat allowed boys to wear shorts, but girls still only had the option of a skort. This irks me greatly because it feels like a sexist holdover from the 1950s, and yet I keep reminding myself that this is not the hill I want to die on. This is not the moment to get riled up and fight a battle with people who are otherwise providing a wonderful school experience for Sarah. Sarah even surprised me and agreed to wear a skort on Thursday and Friday. The requisite knee socks mean it’s not a huge difference from pants, but every little bit helps. 

Amy is more in the flow of things with her school and has started getting homework, which she does diligently. This means I have to be more flexible about asking her to do her Schroth exercises for scoliosis because some days there just isn’t time. 

In other school news, I have given my notice at the massage school. I have been teaching there in varying ways and amounts since 2017, teaching the Alexander Technique consistently, a little bit of myofascial massage, and lots of neuromuscular therapy (trigger points). During the Pandemic I became the chair of the neuromuscular department. It has been a truly wonderful experience and I loved so much of it for so long. But, somehow something shifted for me, as you probably could already tell by my closing my massage practice. It is disconcerting to have something that was a passionate love for half of my life just fall away from being my passion. I just keep reminding myself that many people have midlife re-assessments and re-imaginings of their journeys. I somehow expected to be exempt and used to imagine doing massage until I was 90, but now that’s just not what I want to do anymore. It has taken a long time to let myself act upon this clarity, and I thank my mom for listening to my hemming and hawing for hours, and for pointing out my patterns of resisting my knowing. She has a vantage point of 47 years, so I think she has a pretty good perspective on me and how I work. Anyway, I am glad to be making this shift, though there will certainly be things I will miss. But it is time.

In exciting news, I have started recording the audio version of Watching Sarah Rise, to be released at the same time as the print version becomes available in January. On Wednesday I recorded for close to 5 hours and we got 1/3 of the way through the book. I’m sure there will be many things I have to do over, but the overall experience has been enjoyable. When I decided to pursue this course of action, figuring I wanted to be the reader for my own memoir, I didn’t think about how that would mean speaking as young Sarah and young Amy on many occasions. It means reading as my volunteers or Carl or my past self, and shifting my voice slightly enough to show the difference, but mildly enough to not be weird or botch it. The big tripping moment was when I say something as someone with a British accent. For now I have opted to not even attempt it, because I know I can’t get it to sound just like him and I don’t want to tarnish his memory by trying. I altered my voice, but kept my pronunciation.

This weekend was the big extravaganza commitment celebration for Sonia (Carl’s sister) and her partner Jim. Friday night included a KIDS ONLY party at our house for Sarah, Amy, and their cousins. While Amy isn’t the oldest out of all of the cousins, nor even in our house, I did have her act as the Host (I told Sarah was a co-host) and Amy knew that she was in charge. She also knew to send us a message or call us the moment anything went awry and we could be back in ten minutes. I reminded Sarah to call us if she missed us and wanted us to come home. Sure enough, at 8:30, when Sarah’s body told her it was bedtime, she called me. Meanwhile, everyone else was full of energy and play. Amy said managing kids is so chaotic and she wondered how we do it. She felt that way about tidying up after dinner and fitting everything in the fridge too. She has decided not to have six kids of her own when she is older! 

Yesterday Sarah helped me go to a bakery to pick up a car-load of desserts for the Big Party. It was really nice having her company, and of course we had to get some extra items to sample, such as the tiny macarons. I think the baker thought I was a little odd when I asked for 4 sets of mama and baby macarons. But that is what they looked like to me! After lunch and a nap for Sarah, I took the girls for hair trims and to get Sarah’s hair professionally washed. She rarely lets me help wash her thick locks, and it is hard for her to get her hair fully clean, so I’m glad she allows the professionals to get through all of the layers. 

The Big Party was so much fun! It was meaningful, beautiful, relaxed, festive, and so clearly a full expression of Sonia and Jim. There was delicious food and everyone could eat everything, which was amazing because there were something like 12 different food allergies to work around. There was a face painter, an art station, a person making caricatures of pets (we got one of our cat that really embodies her vibe). There were hula hoops, bubbles, and sidewalk chalk. There was dancing and Sarah got her groove on for the B52s “Love Shack.” Amy did cartwheels in the yard because she is always prepared to do cartwheels, wearing shorts under even a fancy dress. Amy danced with her cousins, though I received the requisite eye-rolls and resistance when I invited her to dance with me. The only hitches in the evening were my fears about getting a cluster headache (though I had my one remaining nasal spray with me just in case and I didn’t need it!), and the moment when Sarah needed to use the bathroom - exactly when Sonia, Jim, Grandma, and Carl were about to begin the one song they were going to perform. They had been rehearsing for months! Sarah and I were almost done, but Sarah was taking a while washing her hands because the sinks were a bit different in terms of how to keep the water flowing. I made the grievous error of asking Sarah to hurry. She resisted. I got tense because the song had already started and I was missing Carl’s big moment! Sarah and I were about to blow our Anger tops, when. . .  magically. . . Anna appeared. Certainly I knew they were at the event, but it didn’t occur to me to ask for help because this wasn’t an official babysitting gig. Still, I am so grateful for Anna’s timing, allowing me to run back in time to see the last half of the performance. Sarah and Anna got to see the last little bit too. At 9:30 Sarah was ready to go so I took the girls home and we all went to bed by 10:30, which was late for Sarah and normal for Amy. Carl stayed out very late helping clean up at the end. It is always nice to have the flexibility to share who does what. He is still sleeping, which is perfect because Sarah is already ready for a nap! When you wake at 5, doze until 6:45, have breakfast and watch Blippi, you might be ready for a nap by 8am! If you are Sarah. So Carl is already doing a job for the day by resting with her since she prefers company for her naps. While I’m certain my body could use the sleep, I’m hesitant to change my usual waking and bedtime hours because sleep regularity is helpful for managing cluster headaches. 

My daily intentions lately are to read, walk, and meditate for at least some tiny part of each day. So far I usually get to two out of the three. But I do feel a difference in my being when I attend to these things that help me align with myself.

May you celebrate big and little things in a way that feels like you, may you sleep peacefully, and may you have your own version of Anna magically swoop in at the perfect moment. 

August 25: ARCs, a Dad Weekend, and Maybe the Answer

Last Sunday when we got home from a week away, Sarah went inside while Carl and I sat in the car summoning the energy to unload and get ready for the week. Sarah emerged carrying a box and saying it was heavy. Carl met her and took the box. I was busy on my phone. I heard him say, “it feels like books…. I said, it feels like BOOKS!” At that point my brain kicked into gear, realizing that it must be my Advance Reader Copies (ARCs) of Watching Sarah Rise. I leapt out of the car with many exclamations of disbelief and excitement. Holy moly! Carl captured the moment of my shocked joy and got an incredible picture of Sarah looking up at me adoringly while I’m holding the book. That picture is a miracle in itself. 

Amy started school on Tuesday, much to her chagrin and dread. Meanwhile, Sarah was very jealous and wanted to be starting school. Luckily Sarah did have junior orientation on Wednesday. Amy survived her week and the days seemed to get more bearable, though she still wishes she was on summer vacation. Mainly she feels that school is boring and annoying. It doesn’t help that lunch for 8th graders is at 1pm. That is a long time to wait when you have breakfast at 6:30. 

Friday evening for Carl and the girls included 
hanging out with grandma and grandpa, burgers on the grill outside until they were attacked by bees, driving to the strip to pick up Carl’s Pedal Pgh packet just before they closed, driving back to Regent Square to pick up the Run Around the Square packets and listen to the live band, Belly Dancing at Summer Fridays at the Frick, seeing friends, dairy- free ice cream at Cold Stone Creamery, and Carl playing guitar while Sarah cleaned up the kitchen (her idea). 

Yesterday Carl and the girls did the Run Around The Square, and Amy cartwheeled every time she passed people who were cheering, which of course garnered even more cheering. After that they went home for their weekly zoom with Mom-Mom and Pop-Pop, followed by lunch. They finished the day with a birthday pool party for one of Sarah’s school friends, and fireworks they could see from the balcony of our house. 

I was not part of the Dad Weekend adventures because on Friday I flew to Santa Fe to see one of my dearest friends from the past 43 years. My flight was supposed to be a sane 11am flight but it got changed to 7am. My headaches, vomiting cat, and an awake Sarah at 3:15am helped me get off to an earlier start than I had even planned on, so I was through airport security by 4:45. It is beautiful in New Mexico, and it is wonderful spending so much time with my friend. We have gone on hikes and enjoyed time in a lake, and today we will be exploring Santa Fe. 

My headaches are still a thing and I can see my doctor as soon as I get back. I say “can” because of course I am always hopeful that I have figured out some new secret that will change everything. Last week I thought polar bears were the answer, but my powers of imagination were no match for the headaches. Benadryl and Aleve also did nothing. I’m not supposed to take Advil or Tylenol because they can cause rebound headaches. I can do an imitrex nasal spray for a given headache and sometimes it works, but it doesn’t break the cluster. After dealing with more headaches in the airport and when I went to bed Friday night, Saturday morning I did have some helpful realizations. I remembered how it was helpful when I accepted that some things are sad and that I can feel sad fully without trying to run from my feelings. Given that my remnant of a headache wasn’t too bad, I had space to consider accepting the pain instead of running from it. That helped my whole body relax and breathe deeply in a way I hadn’t experienced in days. The more I let myself turn toward the pain instead of fighting it at all, the more it evaporated. Last night I slept soundly and peacefully. Occasionally I get a free night like that in the middle of the cluster, so while I am extremely grateful, I can’t yet assume that the cluster has been stopped. As always, though, I am hopeful that this is the answer to life, the universe, and everything. The proof will be in the days to come.

August 18: Maybe Polar Bears Leave the Pineapple

Polar bears don’t get headaches. Or, if they do, please don’t tell me. I have still been getting headaches, as if I hadn’t done my rescue remedies at all. Maybe somehow they only work if I suffer for several weeks first? Not only have I still been getting cluster headaches, but my hope and faith in what I believed was the solution is gone. My doctor has assured me that we can try again and if that doesn't work we can do Emgality, which would involve going into to get three large injections into my belly, rear, or thigh. Emgality was something I previously thought I might try and it sat in my fridge waiting to be administered by me or Carl, but every time I even considered it I imploded with panic. Anyway, this is a long way to get back to my first premise that polar bears don’t get headaches. Last summer when I studied with my Alexander Technique teacher Bruce Fertman, he led my group through various exercises involving animal imagery, and it was impressively impactful with changing how I felt and moved. The polar bear was the animal that was most helpful to me and it continues to help me now. I can’t simply tell myself that polar bears don’t get headaches. I have to build myself as a polar bear with my imagination to really shift my perception of how big my body is and how strong, fluid, and relaxed. I also bring in other animal images from Bruce that help me breathe, and notice when I have been holding my breath. All of that has been extremely helpful, and it was also not the instant magic answer to all of my problems as I had hoped it would be. 

Maybe polar bears also easily leave the pineapple on the plate. As I do not. To back up… Sarah helped me get groceries last week and asked that I get a pineapple. I did, and then one day I served pineapple chunks with a meal that she ate readily and easily. The next day I served pineapple again, and Sarah was having none of it. When she whined that she didn’t want the pineapple, I said she could just leave it on her plate. Instead she started throwing chunks off of her plate. Amy and I both got upset with her. Later, as Carl and I processed the whole occurrence, I realized that the girls and I could use practice with literally and metaphorically leaving the pineapple on the plate. Just as Sarah could have left hers alone with peace and equanimity, ignoring the fruit as if it had naught to do with her, Amy and I could have ignored Sarah’s upset and left that metaphorical fruit on the plate of the moment, as if it had naught to do with us. This is not so easily done for me, but maybe polar bears have an easier time.

Do polar bears have trouble with digestion? I don’t know. And if a polar bear is my answer, maybe Sarah needs a different animal, such as a fox, as her guide. Her digestive system has been having some difficulty for the past month, off and on. This past week was our week to have a relaxed summery time with beach days and not much going on, which was good since Sarah needed lots of nap time, fluids, and home facilities. I felt extremely stressed many times because just as I would think she was better then she would say she needed to hydrate or that she was feeling better, but that actually seemed to indicate that she was not feeling good. I always feel so responsible to have figured out what she needs yester-minute or as if it is my fault for the situation at all because if only I fed her differently or made sure she drank more water maybe things would be different. We have an appointment in early September to see her GI doctor to get more answers and guidance. It is hard enough to take care of one’s own body, never mind the body of someone else whose sense of time and conveying of information can leave me feeling like I’m navigating an Escher print. Add to this that Sarah started her period, and I’m about to start mine so instead of us always having soft snuggly care between us, sometimes my response to her upset and malaise was harsh, brittle, and loud. So then I got to feel like a doubly bad mom. It’s been a bit rough, even as we have also had many wonderful, joyful moments. 

The joyful moments have included me going on an outing with the girls to get a wheelbarrow, receiving help from a stranger in the parking lot who saw our plight as we tried to get it in the car (while I considered that I might have to leave Amy by herself at Lowe’s while I took the wheelbarrow and Sarah back to the house - but didn’t have to because of the help), getting Sarah-friendly ice cream despite set-backs of places advertising it but not actually having it, and finding a playground with swings that even worked comfortably for a grown-up. Another day we set out to do one small errand and ended up going to a Goodwill where the girls and I found some astonishingly wonderful things. I got some striped bell-bottom jeans, Amy found mermaid-scale leggings that somehow are an exact match for a jacket she found at a thrift store months ago in a different state, and Sarah found multiple pairs of perfectly Sarah-ish shorts. Amy also found many shorts and skirts, which is timely because she was down to basically one pair of shorts that really worked with her scoliosis brace.

Speaking of scoliosis braces, Amy and I had a zoom with the makers of the Whisper Brace and now that team of people is reaching out to Amy’s doctor and orthotist just as I am so we can get her the brace. If the Pittsburgh people who have taken care of Amy thus far in her journey don’t want to be trained in the new brace, then we will travel to Philly to make it happen, but hopefully we can usher in the start of a new option for bracing in Pittsburgh. The people who make the Whisper Brace would travel to Pittsburgh to train the orthotist and would return every three months to reassess the fit and continue the training. It’s a pretty amazing offer. 

We had Amy’s bestie and her parents stay with us at our mountain house for a few days, enjoying the beach together, playing games and music, laughing, eating, and relaxing. One night we played ping-pong, skeeball, and darts in our basement. Sarah eagerly wanted to try the darts, standing a few inches away from the board, moving her hand back and forth to aim, and then earnestly, sticking the dart directly into the board - but never giving herself the bullseye. Yesterday we went to the beach and a Bluegrass Festival. Sarah loved the festival and was extra excited when she realized we had purchased a carved wooden fox. She greeted the fox with delight, chin-presses, and kisses. Then last night she helped Carl fill the wheelbarrow with gravel and spread the gravel to new places in our driveway. 

While Amy has had her moments of being extremely frustrated with Sarah and feeling so mad there is no room for any other feeling, Amy has also been her usual incredibly wonderful self. On the day we were getting ready to leave for this vacation, I was out doing errands and Carl was working from home. We thought that meant Sarah wouldn’t end up crying outside on the corner for me, but we were wrong. Amy was at her bestie’s house right across the street and heard Sarah. She promptly went out and walked Sarah home with calm kindness. When Amy and her bestie enjoyed a day at the beach but Sarah missed most of it due to not feeling well, Amy ran over to greet Sarah when she did arrive. Amy even came up with a song for her sand ice-cream stand, mimicking Mink’s ice cream stand and song in the Frog and Toad shows that Sarah loves. 

Also, the best news ever . . .  Sarah will again have her beloved bus driver that she had last year!!!! 

Lots of love to you all. May you have an easy time leaving the pineapple on the plate.

August 11: An Unexpected All-Nighter

Two nights ago I pulled an all-nighter, but not for lack of trying to sleep. It was a new and weird experience. To back up for context… I haven’t had any cluster headaches in two years (thanks to medication), but one trigger for a cluster to start is high altitude. I have been lucky that usually plane flights aren’t a problem. Unfortunately, I think Denver is off my list for any future travel. I think it was being at the conference near Denver that triggered the cluster to start. Once started, it doesn’t go back in the cage easily. I bought a can of oxygen for hikers and that helped some. As soon as I got home I contacted my doctor to schedule injections into my head and get prednisone, which has worked in the past to tame the cluster headache beast. In all of my past years, though, I would wait longer to ask for help. I would always think I had figured out some new way I could manage the situation and resolve it on my own. The last time I did that, two years ago, I was in a desperate place by the time I sought relief, and an even more desperate place by the time I got it due to the ridiculousness of some medical practices. Anywho, I’m glad I switched to a different practice so I know they will get me in within a day or two of my call and I can see any provider to get the injections. I’m hopeful that once I taper off the prednisone I will stay headache-free and not have even tipped into the worst of the headaches. I finally admit defeat, that this is not a beast I can take care of on my own in any way and trying to do so just leads to nights of excruciating pain, keeping Carl and me up for hours. So now I will always seek help right away. Which brings us back to being up all night… I think it was because of starting the high dose of prednisone at 5pm instead of waiting until the next day (lesson learned). I could not fall asleep for the life of me. I read a novel start to finish. By mid-day yesterday I was able to nap and last night I slept normally. It helps to be able to spread the prednisone dose throughout the day. 

Otherwise the week has been a good one. I didn’t have much scheduled and yet somehow the week was still full of laundry, groceries, dishes, other errands, cuddles . . . and a day at Sandcastle that ended with a huge rainstorm. Good thing we had put on regular clothes again that we wanted to keep dry! 

While traveling is wonderful and fun, it is also great to be home and eat more regular food with more fruits and vegetables. Sarah’s system definitely needs some recalibration so I’m glad to have open, flexible days so she can nap a lot. We are attempting to nudge Amy’s sleep schedule back towards something resembling a school schedule since she starts back to school on August 20th. 

Amy has been creating varied and elaborate makeup looks to be characters from The Hunger Games or Inside Out. I love how her art carries to her face, so I’ve been getting her more eye shadow palettes, figuring this is akin to getting her colored pencils and paints. 

If you haven’t yet watched the animated Frog and Toad series on apple plus tv, I highly recommend it. We recently discovered several new episodes and have thoroughly enjoyed them. I have always thought Arnold Lobel’s Frog and Toad books have life lessons for all ages, and the animated versions do a beautiful job of expanding the stories. In Tomorrow Toad doesn’t want to do any of the things he should do. He wants to put everything off until tomorrow, but then he feels blah because he knows his tomorrow will be a very hard day. Frog helps him take care of each thing today so that his tomorrow no longer feels overwhelming. The one thing Toad forgets to do is get changed out of his pajamas - he will do that tomorrow! Sarah pulled a Toad yesterday and weeded while wearing her pajamas. I weeded too, but not in my pajamas. Sarah and I commiserated about our glasses migrating down our noses as we weeded. 

May your glasses stay up and your tomorrows not bring on the blahs.

August 4: Conferences and Community

What a time we have had! A little over a week ago, we got a ride from Sarah’s favorite taxi driver to the airport, ready to board a plane to Chicago for Higgy Con, a conference for kids with scoliosis. We were decked out in custom-made shirts that say “I’ve got your back Amy” for scoliosis awareness, with a list of family and friends on the back. I think we needed an extra suitcase just for Sarah’s joy at being with her bus driver and Amy’s joy to be attending Higgy Con. 

Higgy Con was so much fun! Amy spent every minute she could in the kids’ room where they played games and talked with other kids about their experiences. Amy was at a table of other kids her age who also wear back braces. There was a panel of teens and a panel of parents sharing their stories in the parents’ room, and the teen panel also spoke to the kids. The parents could attend presentations from various specialists and speakers. Amy made a new friend and I connected with the mom of that friend. We also learned about the Whisper Brace, which is relatively new but sounds amazing. I’m going to pursue getting one for Amy. Instead of being made of rigid plastic, it is made of more flexible material but still applies pressure where it needs to be to push against the curves. Kids who have Whisper braces can do backbends and cartwheels in their braces! (Assuming they could do such things before getting the brace.) 

Another highlight of the weekend was the fashion show. Each kid dressed in as much green (the color of scoliosis awareness) as possible and walked the runway while the announcer read what they wrote on a card, such as their name, age, and how long they had been wearing a brace or if they had spinal fusion surgery. It was beyond wonderful to cheer for each kid, what they have been through, and how courageous and strong they are. The whole conference takes something that could make someone feel different and isolated and celebrates them as part of a community. Later in the week, Amy celebrated her one year brace-a-versary August 2, decorating her face with pictures of curved spines. 

One night I woke to Sarah talking in her sleep. When I got closer to her I heard “traffic” and she moved her arms as if she was driving! A second later I heard Amy talk in her sleep, whispering quietly, “so cute!” Maybe both girls were dreaming about their favorite things - Sarah loving being stuck in traffic and Amy loving her cat. 

After a packed weekend full of smiles, dancing, and more green that I have ever seen, we wrapped up our Higgy Con time, piled into our rented neon green car (an unexpected bit of delight), and drove to see a college friend and his family. Sarah loved the baby and Amy enjoyed playing with the almost-two year old. Carl and I also got our fix of baby snuggles. Then we drove to Milwaukee for a short visit with some family members while enjoying ice cream on Pittsburgh Ave! We got into Minneapolis late that night. 

Our Minneapolis Airbnb was around the corner from the house Carl lived in through 5th grade. We had two days to explore the Carl Childhood Sites, but were surprised not to find any plaques commemorating his time there. Grandma joined us for one of our days. We spoke to the current owner of Carl’s old house, visited with the parents of his bestie from that time, played on the playground where he played (with new equipment of course), and ate delicious Vietnamese food. We napped, and we got ice cream from a place that had a sign declaring that they didn’t rent kangaroos. We watched the Olympics. We went to Minnehaha Falls, and Carl got interviewed by someone doing a news story about a restoration project - and he was on the evening news! So was Sarah for a second. We went to the sculpture garden. We went to a lake beach for about five minutes before the heavens opened with thunder, lightning, rain, and hail. We had dinner with family friends and took a picture of Amy sitting in very small chair that she last sat in as a baby. 

Our next adventure was flying to Denver for the conference to celebrate those with Sarah’s diagnosis, attending talks and parties, and just being together. The conference opened with a slide show with a picture of each special kiddo (or adult) attending so we could all cheer for what mountain they climbed in the last year. Sarah’s mountain that we honored was persevering through all of the rehearsals and being in her school musical, All Shook Up. 

Sarah loved being in the kids’ room watching her favorite shows and movies with other kids. Amy spent some time in the kids’ room doing art, some time listening to a sibling panel, and she had fun at the sibling event at Dave and Busters. The friend she made last year wasn’t here this time but she made a new friend. I connected with a mom I met last year whose daughter is older than Sarah and got some ideas for Sarah when she finishes school. 

This is not an easy road and we are so lucky to only have the challenges we have. Sometimes this can all just feel too hard, and yet the best antidote for that feeling is for me to spend quiet time with Sarah. The overwhelm I feel is often pertaining to how to keep her healthy and fear for the future. I also have frequent frustration and helpless feelings regarding our control battles or her explosive feelings when Amy is in the bathroom. At least at the conference I felt less anxious when Sarah screamed in our room because I knew many hotel guests would understand. I think Sarah and I will both benefit from some naps and snuggles when we get home. 

I am so glad the timing worked to attend both conferences. Both were informative, heart-filling, emotional, and a bit tiring! I think we will all be ready to have some time at home. We fly home today and will be met by Sarah’s bus driver.  

Lots of love to all of you. May you have a moment where a whole room is cheering for you and how you face your challenges.

July 28: Lost and Found

Last Sunday we had an experience where “all’s well that ends well” but it was scary for a few moments. After a wonderful day playing in the water at Sandcastle (a local water amusement park), we lost Sarah. One minute Carl and I were standing and talking while Sarah was in our view… we had our attention elsewhere for a minute, and then we didn’t see Sarah anywhere. She is not someone we normally need to watch vigilantly at all times, but she is someone who sometimes decides to leave when she is ready to leave and doesn’t always wait for us to be equally ready. We considered that she had gone into the bathroom so I went to check, but she wasn’t there. We assumed she had exited without us seeing, so after searching a bit more, I headed to the car with Amy and her friend. Carl spoke with Security. Sarah was not at the car. I started freaking out a bit that someone had taken her. I regretted not attaching at AirTag to her swimsuit. I couldn’t believe this was us with a missing child. We started looking again near where we had been. And then… there she was, sitting quietly and calmly on a chair very close to where we had last seen her. She had gone into the bathroom, but into the family bathroom instead of the women’s room. We hadn’t thought to check the family bathroom! We had been looking for her in her swimsuit, but she changed into shorts and t-shirt. We were immensely relieved and so impressed that Sarah knew to stay in one place and didn’t seem worried about where we were. We reminded her to tell us if she is going to go change or leave. I also ordered bracelet bands so she can wear her Apple AirTag easily for future Sandcastle trips or any trip anywhere!

Later in the week I took the girls back to Sandcastle (with AirTags). It is a perfect place for both kids to be able to have fun. Amy can do water slides that are fast and possibly scary while Sarah can hang out in the wave pool or the Tad Pool. 

Tuesday afternoon we all piled into the car and drove to Cleveland to see the Bandits on the Run. They are one of our favorite bands and their concerts are always the best ever. Sarah was singing along with everything from the first moment. 

My guess is that seeing Adrian from the Bandits on the Run reminded Sarah of her days in the Sarah-Rise room, and by extension playing Candyland. Wednesday she found it in the basement and asked Amy to play as soon as we got back from getting new Velcro straps on Amy’s scoliosis brace. Amy was delighted to be able to take a deep breath without her straps popping open, and Sarah was delighted to play Candyland. She especially loves getting sent back or losing a turn! 

Sarah’s bus driver sent us video footage of him driving through the Squirrel Hill tunnel. Sarah loves it and responds as if he can hear her. What I didn’t predict is how helpful that video has been for diffusing moments when Sarah is about to start screaming. She suddenly shifts to happiness. So far it has worked twice to save the day. 

May you find anything or anyone you have lost and want to find. If that someone is yourself, maybe follow Sarah’s lead and just sit quietly in one place until you are found. 

July 21: Trapped and Untrapped

Throughout Sarah’s life there have been many times when my mom has reminded me that I get to have some agency and power over my life. This may seem obvious and it may seem that I was already exercising much of my agency and control when being a parent of Sarah at any age, but… there is also the impression I can have of being trapped. This feeling has happened many times and my mom’s reminder helps me untrap myself from being beholden to Sarah’s upsets. Last Sunday evening I went outside to our porch couch to read, leaving Sarah and Amy inside. They knew where I was so that should have been fine, but I didn’t anticipate that when Amy plugged her phone in to charge next to Carl’s side of the bed while she did her Schroth exercises, that Sarah would rip the cord out of Amy’s phone and they would get into a massive fight that included Sarah putting Amy in a headlock. While I had left the main front door open, the storm door is just that and isn’t a screen door, so I didn’t hear Amy yelling for me at the top of her lungs. Somehow she did get free of the headlock and came to find me, but I felt awful that I hadn’t heard her. And then I felt trapped, as if I couldn’t even leave the girls alone in the house and be outside without risk of all hell breaking loose. I didn’t even feel like I could call someone to talk about how hard it all was.

There is a scene in The Adventures of Ichabod and Mr. Toad, about Ichabod Crane and the headless horseman, in which Ichabod finds himself facing the bridge he wants to ride across but moving steadily farther away from it because he is sitting backwards on his horse. Sarah has come so far and is so independent in so many ways, and yet when I have moments of feeling trapped inside my own house and that I’m not able to leave my 17 year old alone or alone with her sister without risk of screaming tantrums or fights, then I feel like Ichabod. The goal of Sarah being able to be on her own is my bridge and I feel like we are galloping in the wrong direction!

But, back to untrapping myself and turning the horse around. It is true that right now we do still have to arrange things so that Sarah has some adult in earshot at almost all times, but I have also taken proactive steps towards limiting her technology use (because it may fuel her volatility) and towards hopefully reducing the screaming and banging on the door when Amy uses the bathroom. Sarah gets a set amount of tv time in the morning and in the afternoon plus some time with her phone that is already programmed with limits. She has been cooperative about stopping when I say it is time, which is an improvement from when I didn’t have clear limits established. I have also explained the consequences of banging on the bathroom door and screaming: she loses technology for that day or the next depending on when in the day the upset occurs. This same consequence will be enforced if Sarah throws her shoes at home or at school or anywhere. She is allowed to scream and be upset without consequences (unless it is at school), but she isn’t allowed to throw shoes or bang on the bathroom door. Friday night Sarah was extremely upset with Amy being in the bathroom, expressing this through banging and yelling, so she lost technology for yesterday. And we all lived. Carl pointed out that we needed to be on deck for more support as Sarah processed her feelings, and he spent a lot of time listening to her and talking with her about the situation - and about foxes and boxes, of course. The day went well overall and I am feeling at peace with having proactively set the stage for how to handle things in the future. It feels like I am regaining some control. Part of me is embarrassed to be sharing all of this because it seems like Parenting 101, but it’s not always so clear when you are in the thick of things and the slope away from empowered clarity can be slippery and invisible. Sometimes the things I do to get through a day are actually the very things making it harder to get through the day, it just takes time to see it.

In other news, Carl came home Tuesday night from his trip across the Atlantic, bringing several boxes of Jaffa cakes from England to satisfy the requirement of those of us who stayed at home. It is really great having him back. 

The girls had a wonderful week of Camp Anna. They made tiny background sets and performed skits in front of a green screen, combining them so it looked like Amy and her bestie were being attacked by something in a nursery and as if Sarah and Anna were foxes eating food from a box in the forrest. They went to a library and found books about art and worked on skills for the CAPA portfolio (for Amy and her bestie). They wrote artist bios and descriptions of a piece of art. They had food outside the library and the wind blew an empty paper plate into Sarah’s face, which she found extra hilarious as Anna said she got a pie in the face. Sarah’s artist bio is, “Sarah W is a fox. She likes food and music and stripes. At camp we went to the library and ate outside. Sarah got a pie in the face. Her mottos is ‘x marks the spot.’” They made lemonade and macarons and held a lemonade stand at the end of our block, decorating the sidewalk with the longest hopscotch board ever. They went to a pool and Sarah enjoyed a giant mushroom that provided a shower of water, while Amy did swimnastics - her own term for when she does flips and cartwheels in the water.

Inspired by our continued talk about the emotions from Inside Out, especially to process Sarah’s response to Amy being the in bathroom, Amy drew a picture of Sarah-Anger reading a newspaper headline of “Amy uses the bathroom.” I am continually impressed by how both girls are able to talk about a situation with love and humor even if the situation itself was fraught with upset and anger. Amy also had fun drawing several potato emotions to represent the different characters if they were inside Carl’s head. I love how she can do something seemingly simple and yet bring subtle genius to it. Anxiety’s little wavy mouth and bent knee are the perfect little touches to make that character come to life. 

Talking with Carl yesterday, Sarah said, “I miss 10th grade. I’m schoolsick.” Our fingers are still crossed that she will get the same bus driver she had last year, but we probably won’t find out any details until a week before she starts school. I think she misses her driver more than anything else. 

I enjoyed a lot of reading time this week. I reread The Catcher in the Rye by J.D. Salinger and was struck by how powerful and heart wrenching it is - and how wise. When we are finding fault with everything and everyone around us, it is probably because we are heartbroken about something and it’s not really about the other people. I finished Amor Towles' Table for Two. I love everything Towles has written, but my favorite is A Gentleman in Moscow. I don’t always love what he has his characters do, but I love the way he puts observations and philosophies about life into his stories. I also read Wicked Marigold by Caroline Carlson and I cannot recommend it enough if you want a light fun read that is also profoundly wise about finding one’s place in life. I laughed out loud on several occasions.

Lots of love to all of you.

July 14: Something-Nothing

After spending a week not doing much except maybe an errand or two with Sarah and a nap with Sarah - or snuggling while talking about bears in boxes - I often feel like I didn’t do anything. And yet, if I wasn’t there “not doing anything” then someone else would need to be, so isn’t that actually doing something? Also, why the perpetual need to feel like I am doing something or the converse self-judgement if I overdo things and am incredibly busy? Clearly I do have time to ponder such things. A whole lot of not doing much but being the parent companion of one who can be easy going or incredibly inflexible can leave me both rested and at the end of my rope. For more specifics…

Amy was at Camp Delicious this past week. It was a cooking day camp and she came home with leftovers so she took care of dinner every night! That was amazing. The camp wasn’t quite what we expected and it was still a good experience. The instructions specified in no uncertain terms that campers were to wear long sleeves and long pants, socks, and sneakers. Amy was prepared, though also expecting to be too hot. It turned out that she and her bestie were among a select few to have followed the instructions that then weren’t enforced whatsoever. If you are going to give seemingly strict instructions, then enforce them! And if you aren’t going to enforce them because it doesn’t actually matter, then don’t give the instructions in the first place! Camp was scheduled to go to 3:30, but when I arrived on Monday afternoon at 3:30, Amy and her friend had been waiting for 45 minutes! The final day included a group competition, as they had been working in groups all week, and parents were invited on Thursday to come at 12:30 on Friday instead of 3:30! Why do camps always assume that parents have nothing going on? Why do they not tell you of the final showcase when you sign up so you have your hours set correctly? As it turned out (see paragraph 1), Sarah and I didn’t have much of anything going on so we were easily able to attend. Sarah lasted about an hour and then decided she was done. Given the screaming matches we had had the day before, where we later joked that our Angers had scorched the top of the car, I knew I didn’t really have a choice except to leave or have her scream and throw her shoes. Thankfully, the parents of Amy’s bestie were there so they could bring her home, but I felt heartbroken and mad to have to choose one kid over the other because of her screaming prowess. It didn’t feel fair. As we drove home I was crying and Sarah rubbed my shoulder and told me she was sorry I was sad. On the one hand I wanted to blame her for my sadness and on the other hand, her kind response was a good reminder that my response to the circumstances was my own and not caused by her. I was sad because I thought things should have been otherwise, but I could also have been driving away in good spirits appreciating how long Sarah had lasted to begin with. The heartwarming thing that I missed was Amy being given the Spatula Award for always lifting others up. Amy also learned a lot of good chopping and cooking skills so she is more ready to be a helper in the kitchen. 

I have been working harder on some days to curtail how much tv Sarah watches, and other times letting her watch is the only way I feel like I can survive without being unkind to both of us. Some of what she loved watching included videos on YouTube about medical situations and procedures. Kids prepping for surgery or a dentist felt reasonable as ways to process things she has experienced, but adults with abdominal pain going to the ER was not what I wanted her to watch. Requesting that she change it caused her to double down. Fortunately, something reminded her of Mr. Greg reads, the recordings made by her beloved speech therapist Gregory during the Covid shut down. As those recordings are all still available, one morning I set things up with that already on YouTube, and that seemed to switch Sarah’s internal channel for what she wanted to watch. I let her watch A LOT of Mr. Greg reads, because it is almost as good as having him with her in person and it is reading books. She often runs to find her copy of whatever he is reading so she can pretend to be him. 

Our week was bookended with water. Last Sunday went went to a pool party at the house of one of Sarah’s school friends. That was absolutely wonderful, and I learned about the spice combo called Tajin, which is now my new favorite way to eat watermelon. Remarkably, if we pretend Carl was at the pool party, then out of the 10 people there, 8 of them shared a birthday with someone else at the party. What?! 

Yesterday the girls and I went to the beach and it was relaxing and fun, but only for about 3 hours because it was so hot and Sarah didn’t want to go in the water to cool off. When she wanted to be done, Amy and I knew that the path of least resistance was to be done and not ask for any more time. I am puzzling over how to actually be able to negotiate with Sarah when she wants something that I can’t or don’t want to immediately provide. When we got frozen yogurt after camp one day, I didn’t have any water with me. Sarah wanted to wash her aligners and the need to wait until we were home was intolerable. As she yelled, I was not relaxed, thus charring the inside of our car if our feelings had resulted in flames spurting from our heads. I know the more I can clear my own tension and respond with ease to her, the better, and that is really the only recourse I can think of because I clearly can’t force her to change - try as I might.

I am still grateful to have my relaxed time to do the something-nothing of being with Sarah most of the time, and I am also glad she has Camp Anna tomorrow so I will have more time where I feel like I am in more control of what I do and when I do it.

Lots of love to all of you. 

July 7: Ice Cream and More Ice Cream

A week ago we spent a very hot Sunday morning in a small Pride Parade. Since we missed the main Pittsburgh Pride Parade, I was glad we could do this one, but if I had known how long of walk it was I might have had us turn back part way through. By the time we got to the ending destination the girls were wilted. We had some food and then Carl sat in the shade with the girls while I walked briskly back to the car so I could retrieve them in air conditioned comfort. 

In general, I am enjoying having my days open to spend time with my offspring, even if some moments are stressful. Many moments have also felt luxurious and full of quintessential summery-ness. We have gotten ice cream 5 days in a row! We have discovered new places with a range of dairy-free options, one of which is Amy’s new favorite place: SubZero in Shadyside. You can create basically any flavor combination you want and have it turn from a liquid into ice cream before your eyes. We also enjoyed Page’s Dairy Mart on the Southside, where you can get any flavor of softserve as dairy-full or dairy-free. 

Monday Amy had an echocardiogram to make sure that whatever hypermobility seems to be behind her scoliosis didn’t also impact her heart with a prolapsed valve. I am waiting to hear from the doctor, but I have been able to read through the printed results and I think she is in the clear. That was a loooong morning. Since we were at the hospital anyway we got her bloodwork, ordered by the genetics doctors for the similar reason of understanding anything that may be behind the scoliosis. Amy was really really really not looking forward to the bloodwork. As luck would have it, the nurse was wonderful and Amy barely felt a thing. She said the part that hurt the most was the band around her upper arm. 

Amy had two art related play sessions with her bestie on Wednesday, one guided by the mother of Amy’s bestie and one by Anna. While the CAPA (Creative And Performing Arts) portfolio and application aren’t due for months, there is a lot that needs to be done between now and then. We are so lucky to have artists in our lives to help make it less overwhelming and more fun. Sarah usually makes art during the home sessions too so it is a good activity for all.

Wednesday evening, Carl and I celebrated our twenty-second anniversary a bit early since he will be out of town for the actual day. On our way home Sarah called us, as she had on a previous occasion when we went out for dinner. This time she wasn’t upset or missing us; she just wanted to talk. She asked us how our dinner was and what we had eaten. It is amazing to be able to have a real phone conversation with her, however stilted and punctuated by long gaps of silence. We never succeeded in learning what she had for dinner, but she stayed on the phone with us for our whole drive home.

Since our mornings are relaxed timing-wise, I have started having Sarah fix her own breakfast with minimal help. During the school year I have always made her breakfast because her timing is so tight, but now I think she may be able to continue these preparations once school resumes. She gets her meds and makes her hot chocolate. I have been helping a bit with the miralax measurement but can probably pass that job over to her as well. She prepares cereal, yogurt, a bagel, or scrambled eggs. As with so many skills, she is more capable than I may think, and I just need to get out of the way. It is helpful to have my own schedule be more open. I need to feel quite relaxed about timing to allow or ask others do to things rather than doing them myself. This includes having the girls strip their beds, wash their sheets, and remake their beds, which they also did this week. 

Thursday we thought we were going to attend a pool party, but missed the email that it was cancelled due to illness. We learned that on the doorstep of the people who had planned to host it. Amy had the idea to mitigate our disappointment by going to get ice cream at SubZero, since Carl had never been. I called to make sure they were open and was told they were open until 10pm. Unfortunately, as we walked up, we were told that they had to close that minute due to a family emergency! Two strikes in a row. Fortunately, Millie’s Ice Cream was just down the street so we walked there. As we traversed the pavement, Amy drooping with disappointment, we heard someone call her name. A friend of hers had just pulled up with her family! All was right with the world again. Remarkably, the next day we ran into the same friend in the same spot but at a totally different time of day when we were about to successfully enjoy SubZero! 

Carl left yesterday morning for an Atlantic crossing with Grandpa on the Queen Mary 2, so the girls and I are on our own for the next 10 days. We went on a long walk to Squirrel Hill, also in hotter sun than I had anticipated. We had planned to walk to a bookstore and then go to a bakery. The bakery plan was purely artistic and selfless on my part. Amy needs to draw things from observation for her application to CAPA. She doesn’t like drawing things from observation, so I thought if she was depicting delicious things we would later eat that it would be more fun. In practice this was still stressful for her and we both learned some things to work on for her next attempt. Anyway, when we got to the shopping area of Squirrel Hill, wilted again, we decided to get lunch before making our other stops. Before heading home we stopped at Rita’s. I was proud of myself for thinking to bring bus passes for the girls so we could all ride the bus home. I was also proud of myself for navigating that, regardless of how simple it was, because I am not a confident or skilled bus rider. But I want to fix that! And I want the girls to be more confident riders than I ever have been. We finished the day with a cooler, flatter, shorter walk around the neighborhood. What was remarkable is that I didn’t tell the girls they had to go with me for the second walk. I just said I was going for a walk and anyone was welcome to come with me. Normally Sarah has not been one to go on walks unless there is a specific destination. We arranged our walk so that at each intersection we took turns deciding which way to go. It is fun to see different parts of the neighborhood than I do when I go on my solo walks where I tend so stick to one route. 

Other highlights from the week include water balloons with Amy’s bestie. Our hose fitting was so tight that Carl needed a wrench to get the sprayer off of the hose so the water balloon assembly could be attached. After that, Sarah, Amy, and Amy’s bestie were an efficient team of three every time they wanted to put a new water balloon kit on the hose. Sarah screwed the attachment into place and then the bestie held the hose while Amy used the wrench to turn the lever that controlled the water flow. Another day, the girls and I went to the Mattress Factory museum. While there are many pieces there that I cannot understand as art at all, we did enjoy the rooms with dots and mirrors, along with the small bit of flowing water just outside the museum.

Amy has been acquiring various items of my clothing now that she is half an inch shy of my height and one shoe size shy of my feet. She donned what used to be my red dress and red sparkly sweater, a pair of red shoes that are technically still mine, and costume jewelry and make up to create the look of Effie from the Hunger Games, complete with a very serious expression. What is the most remarkable is seeing her dressed as me, but not me. It is like I’m seeing my past self standing live in front of my current self.

Lots of love to all of you. May you have shade and your favorite ice cream when things get too hot.

June 30: Camp and Hindsight

Last Sunday in the late afternoon, Amy and I dropped Sarah off for her overnight camp and then went to Amy’ camp for her drop-off. Sarah’s cabin was inside a larger building, air-conditioned, spacious, and had an abundance of storage. At Amy’s camp we had trouble finding her cabin at first because we didn’t know to park on the grass and there were no other cars to demonstrate that we could have. Then she was the last one to arrive in her cabin and it felt so hot and cramped and there was hardly any storage and no room for her trunk except under the bed, but no room to open it unless you hauled it to the middle of the room. I felt like a big oaf bumbling around as everyone watched us unpack. I was worried about how Amy was feeling and I was glad to escape. 

When I was younger I had hard experiences with overnight camp and felt mightily homesick most of the time, so I was worried about how my girls would fare. I was worried that each would feel embarrassed by having their stupid trunk that I bought because I thought it would make camp feel exciting. I was worried I hadn’t given clear enough instructions regarding Sarah and dairy, and probably never quite did. I had said to limit it, but what does that really mean? What I mean is to basically do none but she can have small amounts. If she has too much she can get sick. Anyway, I kept anticipating a call and then trying not to anticipate a call, whether about sickness or something else. So I had big feelings and big worries about basically everything. 

Monday morning Sarah did call with the help of her counselor. Sarah was very homesick and sad. I talked to her for a while and then she seemed to be feeling better enough to go back to camp activities. She told me she would see me Friday. Monday at 4:30 I got a call from an even sadder Sarah and the counselor said I needed to come get her. Her trunk was repacked and I brought her home. Luckily, she was able to switch to being a day camper.

On Tuesday I took her to camp in time for breakfast at 9 and told her I would be back at 4 since I had a meeting to attend until 3. The counselor had hoped I could get there at 2 but I was the one to have scheduled my meeting and I was to lead it, so I felt like it was important to try to make it happen. But, at 2pm I got a call saying I needed to come get Sarah because she was screaming and had thrown her shoes, which is her usual recourse when very upset. I ended the meeting abruptly and was with Sarah by 3. I decided to change the rest of my week so that I could just stay in the parking lot of the camp all day so Sarah would know she could leave at any moment. 

Wednesday I told her I would come to her at 2, but that if she wanted to go earlier she could just ask her counselor to call me and I would be with her in two minutes. We talked about how her upset Tuesday was like Anger from Inside Out getting the headline, “Mom is not here!” and that is why she was so upset, but that she could say easily, “Can you please call my mom? I want to go home now” and wouldn’t have to get upset on Wednesday, Thursday, or Friday because I would be there. Since the camp was at best 35 minutes from home and 45 minutes in rush hour, or more if I wasn’t at home, staying at the camp gave me peace of mind too.

I found a nice coffee shop two minutes from the camp and also spent many hours in my car. Thursday she made it till 5pm and had a great time! They made her a schedule that just said “10am, 11am, 12pm, 1pm, 2pm” and they added on to it as it was going well. She loved crossing off the times and held her schedule to and from camp. With my parking lot time, I finished going through the First Pages of my book, meaning looking at the proposed layout for how it will actually look and noting any mistakes or things to change. I also read a novel from start to finish. 

Friday involved extra driving because the only camp thing for Sarah was a rehearsal for the evening performance, but then an awkward amount of time between that and when we needed to get Amy from her camp. So, 45 minutes to camp for rehearsal, 35 minutes home after rehearsal, 90 minutes at home, then 60 minutes to get Amy, then 30 minutes back to Sarah’s camp! Good thing Sarah enjoys being in the car and I can listen to the B52s Cosmic album forever without minding the repetition. Anyway, Sarah’s camp concert was wonderful and she seemed to have fun doing some of the arm movements and singing some of the songs. She said she would miss camp and wants to go again. 

In hindsight I think we should have started Sarah as a day camper. On the other hand, she did a whole night and most of a day thinking she was an overnight camper and that is amazing. And once she knew she wasn’t stuck there, she had a great time. We can probably sign her up for some weekend retreats, either as a day camper or overnight camper. The only thing I am not sure about is that the website says for the weekend retreats campers need to be able to self-regulate their emotions and behaviors. Clearly we aren’t quite there yet. But maybe they would allow it if I stayed on site in my car. I would be willing to do that as a support until Sarah felt ready to do it without me quite so close. 

One night at home, Sarah and I had the excitement of getting notices on our phones that there was a tornado watch in our area and we were to go to the basement immediately. It wasn’t even raining or windy, so it felt hard to take it seriously, but we did go the basement just in case. 

Meanwhile…. Amy LOVED camp!! She wasn’t homesick at all!! She wished she could have stayed for a second week! She has been teaching us cheers and games that she learned and she can imagine being a counselor when she is old enough. 

Hindsight again… No trunks. Even though the camps had answered my question about trunks saying they would be a good idea, they weren’t. Firstly, the ones I ordered only had a handle on one end. They were wheeled, but when you needed to put them in a car it was difficult and awkward. They didn’t store well at the camps. And Amy’s is already falling apart. Also, I needed to have people write more information on any mail sent to the camps. There is still at least one letter sent to Sarah that she didn’t get. And she didn’t get my care package until Friday even though I know it was delivered to the camp on Wednesday. Also, because the camps said not to mail snacks, I didn’t. And I didn’t send Amy with any snacks to begin with, but it turned out that she was the only one in her cabin without snacks!! Luckily her bestie had enough to share. 

Yesterday we celebrated Carl’s birthday by going to Open Streets, which is when Pittsburgh closes some roads to traffic so people can bike, skate, or walk on the main thoroughfares. Carl and Amy rode 6.66 miles including some serious hills! I walked next to Sarah as she pushed off the ground and balanced while gliding. It didn’t work to do pedaling practice until Carl was back with us to help her. But Sarah and I covered a lot of ground and I was very impressed with her. We finished with getting shaved ice from an iconic stand on the North Side. You can totally imagine the stand being hooked up to a horse 90 years ago when it started. 

We had a great dinner at home with extended family. Amy shared the “Happy Birthday Potato” painting she made for Carl. Then Sarah started chanting a song she created at camp with the line, “Bear in a box.” Amy suggested that Sarah keep going with that while Amy added “Lora is a fox” because Lora was her village at camp and the mascot was a fox. They kept that going in rhythm and then Carl added “I love my socks.” Then Grandpa added, “This song rocks.” Now I knew that the song was growing and it would get to me as the last person to add a line! Oh no! What to add? The next lines added were “Sounds like some knocks” and “I fixed the locks.” I concluded with “Tic go the clocks.” It was so much fun and it was wonderful to build it all around something Sarah could do so well. 

Next, Amy taught us the “Fortunately/Unfortunately” game where you go around the circle of people with each person adding a line to the story, but you have to take turns about whether you are starting you line with “fortunately…” or “unfortunately…” Amy started and a story evolved about cake and various disasters. Sarah was the last person to go and I wasn’t sure if she would catch on or add anything that made sense. She rocked it!! She brought it home with, “unfortunately the fox ate the cake.” We all cracked up and applauded and she was clearly pleased with herself. Carl pointed out how huge her participation was. It meant she was attending to everything as the story built. I love it when she is really part of a group and an activity.

June 23: Playing the Perfect Card

We escaped the brutal heat of Monday by heading to the Jersey shore for a fun day with Carl’s cousin’s family. Amy played hard as she always does at the ocean, getting completely covered in sand and romping for hours in the waves. Sarah mainly watched the waves and chased birds. We spent the rest of the week visiting Mom-Mom and Pop-Pop and Grammy, Granddad, my brother, and my uncle. It was wonderful spending time with everyone and we dealt with the heat with water balloons, sprinklers, and air conditioning. Amy also dressed up as if she could go to the Met Gala, wrapping herself in a pride flag and using my mom’s costume jewelry with a giant stuffed animal lion serving as her purse. On Wednesday we saw Inside Out 2 in a theater. Sarah hasn’t seen a movie in a theater since Frozen 2 came out years ago. Usually she likes to talk a lot during movies so it was a surprise and a testament to her love of Inside Out movies that she was quiet the whole time. If you haven’t yet seen Inside Out and Inside Out 2, I highly recommend them for any age. 

Ever since Inside Out became a family favorite, we sometimes talk about our own emotions as if they are the characters taking over. Carl handled many of Sarah’s upsets beautifully by talking about how Anger really took over. I was glad he had the space to do that because my own Anger and Anxiety were too strong in those moments for me to have any flexible or creative grace towards Sarah. 

At Grammy and Granddad’s Carl got to open an early birthday present of Fritos wrapped in tissue paper, which led to the usual silliness of tissue paper hats because what else are you to do with it?!

Friday the girls and I drove home so we would have plenty to time to get them ready for their sleep-away camps that start this afternoon. Carl stayed in Delaware for a very hot couple of days of rowing races. The amount of laundry I did between Friday night and Saturday night was immense since I wanted to wash everything from our week in Philly so any items could be packed for camp. Luckily the blisteringly hot sun helped everything dry quickly. I helped each girl put everything needed into their trunks, then take everything out of the trunks to label each and every thing now that it was decided-upon and pack it again neatly. We took a midday break to pick up prescriptions, get hiking boots for Amy for camp, and to enjoy water ice at Rita’s. I organized all of Sarah’s pills into individual labeled baggies for her camp. I lost track of how many times I wrote names on things - and that was with Amy helping!

Amy has notably been stepping up to help with unloading the car and she was also immensely helpful yesterday during our outing. After we stopped at a lemonade stand, Sarah announced as I drove that she didn’t have her seatbelt on! Egad! I stopped immediately and said she needed to buckle up before I would move on. This was not long after she had thrown herself on the floor of CVS because she desperately wanted new sunglasses, and I could tell she was ramping up her resistance as I awkwardly sat at a red light praying it wouldn’t turn green until she was buckled. Amy brilliantly said, “remember Sarah, click it or ticket.” That is one of Sarah’s favorite signs on the highway. That reminder worked not only to shift Sarah’s energy to relaxed fun, but also to get her to buckle up. I told Amy I felt like we had been playing a card game where you can stop one player’s intended move by whipping out a certain card in your hand if you  have it. It was as if she had the magic card to whip out just as Sarah played her resistance card. It was masterful, creative, and oh so helpful as I was just heading towards tension.

I hope you aren’t roasting too much in the 95 degree heat we have had in Philly and Pittsburgh. May you have the perfect card up your sleeve at all times.

June 16: Meltdowns and Going “Dewn”

Amy is now a rising 8th grader and already seems taller and more grown-up, but I tend to think that every morning when I first see her. To finish out her 7th grade year, students were required to do a volunteer activity. Hmm. Think about that phrasing. Anyway, the activity could be of their choosing as long as parents took a picture of their kid doing whatever it was and sent it in. I arranged for Amy and her bestie to volunteer by hanging out with my sister-in-law’s one-eyed foster cat. They had a great time and I loved the chance to hang out with Sonia. 

Thursday was Kennywood day for Amy’s school to celebrate the end of the school year. Remarkably, the timing was right for us to be able to get a ride with Sarah’s beloved taxi driver who had been her bus driver for 10th grade. She was delighted and so was he. 

Kennywood (an amusement park) itself went about as I expected. Amy and her friends went around on their own and stayed until the park closed. Sarah was interested in getting ice cream at Millie’s, which has dairy-free options, and riding the carousel. Last year I wasn’t able to climb on a horse because my hip wasn’t flexible or strong enough but this year I did it with no trouble. Sarah and I walked around a bit more but there wasn’t anything else she wanted to do so we ubered home. 

The drive to Philadelphia on Friday was mostly smooth, aside from a totally unexpected Sarah-meltdown in the middle of the rest area parking lot. Carl was on a work zoom so was unavailable to help. I had Amy stand on one side of Sarah while I stood on the other so we would be visible to cars since Sarah had thrown herself onto the pavement in her upset. Eventually I got her to the sidewalk but then she still had some times of throwing her shoes or trying to run away from me. Overall I stayed notably calm and handled it well, but for the rest of the day I felt like I didn’t have my usual reserve for handling things. There weren’t really many other challenges but I still felt like I was moving through things slightly grumpily or sadly and I was missing how grounded and happy I had been for much of the week. 

We came to Philly for a family Bat Mitzvah, and Sarah made it through half of the service yesterday before wanting to go. Given that she had had another huge meltdown in the hotel, once she was happy sitting outside of the synagogue, I didn’t want to push her by suggesting we go inside to be able to hear. I was sorry to miss so much of things, but grateful that Sarah was calm and happy. After lunch, she and Carl napped for over 3 hours! Then we all had fun dancing at the celebration dinner, cutting a rug like starfish, as Sarah would say. 

The other fun part of this trip is the hotel elevator. It announces which direction it is about to go, but it has a bit of an accent when it says “down.” Amy and I kept trying to imitate it, laughing uproariously. What was especially fun was watching Amy’s whole face change with her different attempts. Then I realized I did the same thing. Carl recorded both of us saying it in different ways so we could compare our faces.

June 9: Zooms and the Zoo

This was Sarah’s first full week of summer and she helped me with short errands in the time we had each day before I took a zoom class for three hours. Then she watched her favorite shows, played outside with bubbles, and took naps. The zoom class was about health and healing and was taught by Bears and Samahria Kaufman. They are the people with whom I studied for a summer during college and who taught me to run a Son-Rise Program, known here as Sarah-Rise. It was such a treat to have them co-teaching each class. I find that the Option process that they teach is similar to the Alexander Technique in that it is both incredibly simple and something you can study for your whole life and keep learning new things. Or maybe it’s not new things, but it is that I come back to the original principles as if they are new. Both processes are about noticing what we do and kindly inquiring if that is what we want to be doing, whether with our bodies or our minds. This time around I realized how I spend so much time, energy, and effort trying to control things and people that I actually can’t control, but that I spend relatively little time, energy, and effort on shifting what I can control, which is me and my thoughts. The most notable and easily accessible shift for me pertains to my cat. Every time I feed her dinner and she refuses to have her meds - meds that she sometimes consumes easily - I get frustrated and upset. Or I used to. Now I am remembering that I am actually in control of me. Can I control my cat? Absolutely not. Can I decide to maintain my inner calm even if she doesn’t cooperate? Yes. Yes, I can. And it matters. The next forefront is of course my children. While I can set rules and pararmeters and make requests, ultimately I can’t control them. Sometimes I get upset about this, but I am giving myself more moments to pause and reevaluate the situation and how I really want to be. Usually the reason I get unhappy about them not doing what I want is that I think if they do what I want then we can all be happy, gosh darn it! I’m trying to avoid them being unhappy in the future because I’m scared of the upset. If I can remind myself that I am safe and all is well even if they don’t do what I want and even if they get upset, then I can stay more relaxed and maybe even come up with new ways to ask them for what I want.

Historically, when I go for the gold of being calm and happy more often, then I leap to wanting it all the time, ignoring how I actually feel or judging myself for any feelings that aren’t happy and calm, which leads to massive tension and unhappiness. Cue the Alexander Technique. I understand that trying to hold onto an easy neck is the fastest way to a stiff neck, so now I remind myself that trying to hold onto happiness can be the fastest way to misery. My free neck or free happiness can only come from noticing what I am actually thinking, feeling, or doing, giving room and acceptance to whatever reality that is, and then seeing if there is a shift I would like to make in how I am approaching the situation.

One evening there was a family day at Carl’s work that Sarah and I attended. She liked sitting in the small firetruck, eating Millie’s ice cream, and jumping down the giant cushioned steps. There were so many kids jumping down the steps it seemed like a kid waterfall. Amy didn’t attend because she had her afterschool Attack Theater class and she didn’t want to miss making props for the characters they had been creating. 

Carl and I enjoyed a dinner date on Wednesday at Bourbon and Bridges. We ate in our own tiny private clear glass castle. It may have been made of plastic, but either way it seemed magical.

Friday was an open day with no zoom class so Sarah and I went to the zoo. It was lovely to be there with no goal except to be with Sarah and go at her pace. She really wanted to find a postcard to mail to her bus driver. We searched many of the gift shops to no avail, but she did find a mood bracelet with an elephant which she purchased with her own money. She likes to pretend that it is a tiger watch, acknowledging that it has no watch hands. She loved getting lunch at one of the restaurants and she spent many minutes watching kids go down slides. She went down the slide a couple of times, but she mainly loved watching all of the action.

Sarah did mail a card to her bus driver on Thursday during our morning time together. I picked a mailbox that would be a bit of a walk for us and she ran most of the way, practicing for the Run Around the Square that happens in August. I’m impressed with her endurance lately whether she is walking, running, or swimming. Friday after Amy came home we drove to the mailbox, since we had already done a ton of walking, and Sarah mailed a second letter to her driver. Then we visited with someone who used to babysit the girls from the time Amy was an infant. This person now has a baby of her own. How did my own kids become such grown-ups??

Yesterday we celebrated an early Father's Day for Carl because we will be busy with other things during the actual Father's Day. Carl played guitar and then attended a beer festival with grown-up family members while the girls and I stayed home. Then we all went to the opening of a park by a riverfront. The girls enjoyed the big slides that look like legs of a giant metal person. It has probably been ten years since we last went to that particular playground and the kids have grown just a wee bit. It was a long wait for food and Amy wilted a bit, but cannolis and noodles helped, as did jumping on a mesh net stretched over water. After sitting on giant blue chairs, we made our way back to the car and drove to a different venue for a concert by The Beautiful Mistakes. Sarah loved dancing and “cutting a rug like a starfish." Amy struggled with the noise. I haven’t fully appreciated her sensitivity to loudness, but it is something for me to consider more thoughtfully in the future so I can come prepared with ear protectors. We finished the day with milkshakes at the Milkshake Factory, which has three dairy-free options that are Sarah-friendly. 

Lots of love to all of you. May you have kind space to notice any patterns that aren’t serving your sweet self the way you think they are.