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.