August 14: Puzzles, Independence, and Cuteness

Amy had camp this week. As in, camp that was not at our house and camp that was with multiple campers. It was an art day camp in walking distance from our house, and Amy was in heaven because her best friend was there too. They walked too and from camp each day together, got put in the same group for all activities, and some days had extra play dates after camp. Amy is also thrilled that when she starts school this coming Wednesday she and her bff will be in the same home base and have the same class schedule. The last time they had such a situation was second grade. I think it will make the whole transition to a new school building and new teachers easier. 

Sarah had time with Anna each day that Amy was in camp. They went to the library twice. On the first library visit Sarah typed a small paragraph about reptiles on the computer, added a picture, and printed it. She asked the librarian for help finding where the printer was. On their next visit, Sarah got a library card! Amy got one years ago but Sarah didn’t want one at that time. Anna told me that Sarah did a wonderful job providing her name, address, and birthday to the librarian. If you look closely at the library card, she wrote her name as Sarah Crocodile. An adventure for a different day was watching an immense beam get delivered to the bridge construction project near our house (remember the bridge that collapsed?). Sarah and Anna watched for a couple of hours and then got pizza and ice cream, taking the first step towards Sarah being the one to ask for a clean scoop for the ice cream. Anna reminded her to explain that the reason is her nut allergy. 

Whenever we are on vacation I don’t do my PT exercises. There’s nothing stopping me. I just don’t feel so inclined. But I notice a difference when I am not regular with my exercises, so this week I saw my trainer and have also done more at home and am feeling stronger again. I’ve also been doing many more constructive rest sessions. That’s from the Alexander Technique and is another thing that helps immensely if I do it regularly, but it’s easy to think I don’t have time. What I noticed this week is that when I do the constructive rest then I get up from the floor more easily than I have in ages. I also felt inspired to do more yoga and capable of doing so much more than I have in months. So this all feels great. And my muscles are a bit sore today!

I had a helpful consultation with a Son-Rise specialist. We talked about Sarah’s focus on nickel charts and how I could begin to respond differently. The main new ideas are that it is ok to respond minimally (still respectfully) when Sarah brings up nickels or nickel charts in any way. I have so often been trying to use that to build more language and flexibility or I’ve been grumpy in my response. But if we want to change the subject then it is ok to not build on the nickel idea and also best not to be grumpy about it. Instead we can try to weave in different subjects or activities. I’m not sure if much is changing except that when Sarah does mention nickels and wants to pretend to be Toad losing a nickel, her sadness has the gleam of playfulness. So at least it is now in the category of fun play around sadness that she has had for years rather than seeming to be an emotional issue she still needs to work through. I don’t know if it was my tiny shifts in how I responded or the work from last week with the newspapers and written story she could rip up or what. 

Sarah’s allergies do seem better now that we are at home, but we did get some air filters for the house and her room. I think maybe they help some.

Sarah has been really into assembling her Peppa Pig jigsaw puzzles all by herself. As so many things can still feel challenging, this is a helpful reminder that what at one time seems impossible later becomes commonplace. In the past it seemed like she would never figure out how to do jigsaw puzzles and now she completes puzzles of 24 and 48 pieces totally independently. So maybe some day we will not have any issue when Amy uses the bathroom and Sarah screams and rages. On Monday of this week when they were getting ready for swim lessons, Amy asked Sarah if she needed to use the bathroom first, hoping to avoid any issue when Amy went in. Instead Sarah slammed the bathroom door so hard and fast that a towel hanging on a door hook got caught in between the door and the frame. The door would not budge at all. I was so glad all of us were on the outside. I also really hoped our cat wouldn’t need the litterbox for a couple of hours, which was when Carl got home. I assumed he would have to take the door off the hinges, but instead he just figured out that he needed to push the door further closed to get the knob mechanism working to release. So he had it open in a minute. 

Sarah and I re-enacted a scenario on Friday in which we have found ourselves before. It’s been ages and it is no fun at all. In hindsight so many small details could have been changed that might have improved everything. I had a routine mammogram (all is well) that morning while Sarah and Anna watched the beam delivery. Then Sarah and I were going to go to Amy’s camp finale art show and carnival, with games the kids had made. I predicted that Sarah would want to do some “chirp chirp” snuggles for a few minutes before we went but erroneously assumed a few minutes would suffice. I really wanted to walk through the woods to get to Amy’s camp, but knew we could drive if the timing was tight. We had ten minutes to do chirp chirp. Sarah insisted on changing into pajamas for those ten minutes. Then… she wanted to nap. My timer chimed after 6 minutes of an attempted nap. Clearly that was not enough. Although sometimes it has been. She was upset and wanted to sleep more. I wasn’t pleased but acknowledged that we could drive. Sarah then yelled that she wanted to walk. I said she had to get dressed. She sat there. We both yelled and screamed. I said I could just go on my own. She screamed that she wanted to go, but didn’t move to get dressed. She did eventually get dressed and I told her to pee before we left because maybe needing to pee added to her screamyness. She emerged from the bathroom as if there had never been a problem, happy and easily ready to go. So that was a great turnaround, but my emotional status needed more time to regroup. I was grumpy as we drove. We did make it on time and enjoyed playing Mermaid Bowling, which Amy and her bff had made. 

Grandma and Grandpa also met us at the camp and got to see Amy’s art and bowl. Grandpa was the first one to knock over enough pins to win a mermaid card. I had to bowl several times before winning a card. The card was ostensibly chosen at random but I asked Amy if I could have the crocodile mermaid that I knew she had made. I gave it to Sarah. It turned out to be good that I drove since Amy had a lot of art to bring home. So all was well overall but I felt emotionally worn out for a few hours. I can now see that Sarah and I were both just really caught in our own emotions, to the point where we couldn’t think or function clearly at all. But we aren’t bad people and we still love each other. That sentence might seem so obvious to others but it feels like progress not to spiral into feeling like a rotten mother for hours on end. 

My brother is visiting for the weekend and we are having a lovely time playing board games all together and enjoying ice cream. He brought Hello Kitty items for Amy and a crocodile stuffed animal with babies for Sarah. Both kids were delighted. Sarah took one baby crocodile out of its egg and put it in her pocket. Friday night everyone except me did cartwheels in the yard. Carl’s overly confident alter ego Joey showed up to do his cartwheels with much more bravado than skill. That is always a delight. Last night we went to the corner ice cream place, and Sarah placed her order including asking for the clean scoop and saying why. This is a hugely important step towards her being more independent in the world. After the ice cream we looked at the bridge progress. The cranes that are in place to help assemble the bridge are staggeringly enormous. The biggest crane weighs 1.5 million pounds! Then the kids played on the playground and climbed on a rock. Sarah wanted to jump down from the rock but was needing a moment to gather her courage. Amy, on the ground, offered her hand to Sarah and Sarah jumped down while holding Amy’s hand. My heart was overflowing.

Amy has been diligent with making herself and her American Girl dolls match. This diligence and interest comes and goes, usually in spurts. Lately for every meal, one doll joins us and is provided with play dough food that Amy has made in the past. Recently Amy made a paper copy of the hand-band topper one doll wears, taping it to her own headband and wearing a matching nightgown with the doll. They each have their hair in braids and do look remarkably alike. She also makes paper drawings to tape on her own shirts to match what one doll is wearing. This is all fabulous in terms of creativity. The one thing that we need to work on is how to make choices about timing and when dolls need to not happen or have to wait until every other aspect of preparation is done. Amy has already decided that on Tuesday night the dolls will sleep in their school clothes for the next day rather than being in pajamas. The dolls attend school in our front room or family room. 

Speaking of likenesses, Amy and I are very similar in our propensity to wear our emotions plainly on our faces. We also adore cute animals. Carl captured a picture of us nearly beside ourselves about the cuteness of a bunny in the backyard. If you just see our faces and don’t know what we were looking at you might think we were watching a house burn down or some similar disaster. Instead we were looking at a bunny sitting still in the yard. At quite a distance. But it was small. And so cute. And its ears were oh so delicate. As with many moments as Amy grows up, I enjoy seeing a glimpse of what I must have been like at her age. I have always been expressive and always adored cute things.

Love and Cuteness to you.

August 7: Vacation, Thunderstorms, and Fun with Newspaper Headlines

Some weeks seem to encompass an entire year of experiences and emotions. This has been one such week. We have been at our mountain house and overall it has been wonderful, but Sarah and I have also had some really struggly times.

We watched the movie Inside Out again which provided excellent fodder for future play. While Sarah’s touch sensitivity seems to be ebbing slightly, her bringing up nickel charts and nickel feelings has ramped up even beyond its usual constant punctuation of our days. If you haven’t been around us all day, you probably can’t imagine how often we hear

“am I going to get a nickel taken away?” 

“you aren’t going to give me a nickel for…” 

“When I had a nickel away I felt sick with Nickel Feelings”

“___ won’t take a nickel away because I don’t have a nickel chart"

“Hi Jennifer, this is __. Sarah is not feeling well.”

“Sarah just threw up more”

“Sarah is getting so much phlegm out."

“Sarah, your dad will be coming to get you.”

“If you don’t stop crying you will have another nickel taken away” (this one was a new phrase and makes me wonder if that was said to her)

“I said to Mrs.___ , Mrs___ can we change my nickel system? It is not working for me.”

This is all truly wonderful that she is processing everything, but I am also wondering when she will be done processing. We have been having these phrases and repetitive conversations around them since January! Carl made the comment that it must be a core memory for her. Core memories are a concept from Inside Out. That gave me the idea that maybe she had been angry, in addition to being sad, about the nickel being taken away. Normally we just talk about her sad feelings and how then she felt sick. Focusing on the anger side of things I took a newspaper page and wrote a headline “Nickel to be Taken Away” because the character of Anger in the movie is always reading headlines about what is happening. Sarah loved her newspaper and headline. She pretended to be Anger yelling and having flames coming out of the top of his head.

During one snuggle session with Sarah she was also referencing Frog and Toad. Stories often get blended or we substitute other characters into our own stories. So we worked together to narrate a story in which Toad had a nickel taken away and felt sad and sick. Frog came to get him. Then Toad sat on his bed and said “Blah! I am down in the dumps!” Sarah cracks up at saying she is down in the dumps and points to the bed and says “here are the dumps!” 

Our Frog and Toad narration gave me the idea to write a story in that style about Baby Crocodile losing a nickel and the teacher calling me to say she wasn’t feeling well, etc, all the way through Baby Crocodile asking her teacher for a new system and the teacher saying yes. I hoped this would help put the story to rest. Sarah was interested in reading it but then when she read it with Carl she was sad and upset, as if reliving it. I worried that I had really messed up. Later Sarah started erasing my words. Carl pointed out this was maybe therapeutic for her. I told her she could also rip it or cut it. She did some ripping and some rewriting. Amy had drawn a small nickel chart as an illustration and Sarah ripped it to shreds. So all of this was probably good and yet… the core memory is still quite front and center for Sarah as she moves through her days. Amy is quite over it and doesn’t want to hear about it any more. I feel the same although I can rally sometimes and at least respond. 

We made other newspaper headlines for other people too. Mine was about being frustrated with the UPMC headache center/neurology policies and how ridiculous they seem. I have been wanting to switch to a new headache doctor and practice. I made a Telehealth appointment with someone else but who was still a UPMC doctor. I didn’t know this would be a problem. I was allowed to schedule and someone even called to confirm. But when I tried to connect for the appointment there was nothing listed. Then I got a voicemail message that my appointment had been canceled because of their policy that I can’t just see another UPMC headache doctor unless there is a reason for the change documented in my chart. The message seemed harsh and accusatory of “what were you thinking?” I realized I needed to get out of the UPMC system all together because I was starting to feel trapped. I did find a new place at the Allegheny Health Center and I am relieved to have an appointment with a new doctor in December. What I love is that at this new place I will be able to see any doctor or nurse in the practice and if I’m in a bad way then I can even call for a same day appointment regardless of if I have been seen for any first official appointment. 

Carl’s headline was about having to work on vacation on Monday and not being able to go to SeaBase. SeaBase is an indoor play place with games like DoodleJump and Skeeball and a play structure that is similar to where Blippi plays in some tv episodes that Sarah loves. The girls and I went to SeaBase on our own on Monday and had a great time. Sarah pretended to be Blippi and also got the highest score on DoodleJump out of the three of us. Amy and I played lots of Skeeball. We got ice cream on the way home from Peace Love and Icecream, a 60’s style ice cream bus that played 60’s music. My favorite moment was when the theme song to the Monkees was played.

Every night when we are at the mountain house the stuffed animals known as Beanie Boos go wild after Amy goes to bed. One night they had a newspaper headline: Beanie Boos Go Wild. Amy happened to come out minutes after that was placed next to some Beanie Boos (it is hard when she stays up later than we do) and saw the headline. She commented that it was amazing that the Beanie Boos even copied my handwriting. She went back to her bedroom. The Beanie Boos then added a different headline in different writing that said: Beanie Boos Frame Mom.

On Tuesday we all went to Seven Springs, which is a ski resort that also has summer activities. We got adventure passes so many options were available. Carl, Sarah, and Amy did the big trampoline where you are attached by straps that allow you to safely jump high and do flips. Amy and Carl did many flips. Sarah tried but didn’t quite make it. Still, I was impressed that she tried at all. I watched. Amy and Carl also did the climbing wall, the Alpine Slide, and the ropes course. Sarah and I walked around a locker room looking for a water fountain, bought gatorade from a vending machine that was fun to watch, tossed beanbags, and went bowling. We all got ice cream, went to the pool, and went bowling as a family. At the pool, Carl and Sarah played Crocodile Island, which was a version of tag that they invented. Another kid played too and when he left Sarah said, “That was fun playing with ___.” That felt like a huge moment. Amy also played Crocodile Island, after she did about a million hand stands and flips. I swam laps as well as I could given the space. I also swam laps in the indoor pool that had more room and realized how out of shape I am. 

Carl is training for a huge bike race that will happen in September. It will be 7 days of mountain biking. So to train he did a couple of long (5-hour) bike rides here. He forgot his heart rate monitor at home so he borrowed my Fitbit for his rides. I honestly think that Fitbit should have sent me a fraud alert inquiring if someone stole my watch because of the sudden dramatic increase in steps (it counts biking) and heart rate levels of intense exercise. That clearly didn’t match my usual lifestyle!

Amy’s newspaper headline was about having to wait for her friend to arrive. For two days we had Amy’s best friend and her parents staying with us and that was immensely wonderful. What luck that Amy’s bff happens to have parents that are some of our best friends too. We had a lovely beach day and then an attempted second beach day. The second beach day was interrupted by the strangest weather pattern that continued for a few days. The forecast would show no rain but then there were pockets of short thunder storms. So Amy and her friend had to get out of the water when there was lightning and we all took cover as the wind picked up and the thunder rumbled. We took cover by the concession stand and ate some ice cream. We all enjoyed hanging out together and playing games, including Spiders in the Dark. That was a game invented by Amy’s friend. When Sarah played we adapted it to “Crocodiles in the Dark.” It is a game of tag played in the dark where you don’t at first know who is IT. I am not a fast spider or crocodile, nor did I crouch and scuttle. 

One mystery has been Sarah’s allergies. We know she has seasonal allergies but this year in general they haven’t presented outwardly as much as some years, though she needs daily Claritin. For some reason this week they have been intense, even with Claritin. Claritin doesn’t seem to help much. But what is mysterious is that she seems fine when we aren’t at the house. I tried pulling out all bedding and washing as much as I could. We tried opening all of the windows and alternately closing them all and running the AC. Neither seemed to bring change. So while I wish we had more days of vacation, I’m also looking forward to being at home where hopefully her allergies will go back to their normal levels. 

The past two days I really struggled emotionally re Sarah and the obsession with nickels, the whining and protest about food (that doesn’t always happen) and the whining and protest about seemingly anything I said. She also had a big upsets when Amy would be in the bathroom (that comes and goes as a thing for upset or ease). I forgot to make sure Sarah had more breakfast that just her hot chocolate and meds yesterday and was reminded of why I have to make sure she eats. She was yelling a lot and trying to rip the iPad out of Amy’s hands while Amy was having her zoom turn with Mom-Mom. Sarah had already had her turn but wanted the iPad to play a game. There was just so much screaming. And right after the screaming or whining she would ask to snuggle with me. I did not feel at all like I could snuggle. We both cried lots at different times. I never quite felt the ease I sometimes can after a good cry. My tears seemed to clear my tension enough to keep me afloat and functioning but didn’t bring expansive ease or insight. Today seems better for both of us. Maybe because I served something for breakfast that she liked or maybe ???

Amy and I have had a great time playing Double Solitaire. For our first game as I was teaching her to play, we won! I told her that was very unusual. We have played many games since then and haven’t ever won, even when we employ my grandfather’s trick of having a wind blow and scramble the cards in our hands. Amy has her American Girl dolls here too and has done many activities with them and often has matching outfits with them to the best of her ability. Sarah recently got a new Goodnight Moon shirt, but has lamented its lack of a Goodnight Moon House. Amy put Sarah’s American Girl doll in a white shirt and made a detailed paper drawing of a page from Goodnight Moon, including the house, and taped it to the doll’s shirt. Sarah absolutely loves it. Amy is remarkable in her artistic ability and the way she uses it to make things for others. Minutes after a fight with Sarah, Amy started drawing the cover illustrations for the book I had made. It was such a fast turn around for Amy I could hardly believe it. If that’s not deep sister love I don’t know what is. Then again, as many of you pointed out, maybe I don’t give myself enough credit for the times that I do similar fast turn arounds of love and creativity following struggles and upsets. Yes I do. I know I have done a lot that is wonderful and remarkable and creative. It is also still hard sometimes. I do really appreciate the support and reminders and love from all of you who reply or comment at various times. Thank you!

Sometimes Sarah finds things funny or notable when to us they are just toss-off comments. A couple of weeks ago one of my uncles called out to someone in jest, “We’ll be over around 8! Fire up the grill!” Sarah has since loved repeating that. Yesterday Carl explained something about the car and said, “Ka-Chunk.” Sarah has also delighted in repeating that.

Yesterday Carl helped Sarah practice her biking and Amy had a rain party on the deck. Usually every time Amy would get ready for a rain party the short rain squall would be done. So she was pleased to actually have the timing right to get outside and get wet. One night we attempted to have a fire and cook hot dogs, but just as we started the thunder rumbled. We managed to cook our hot dogs and then ran inside to eat them as the heavens opened.

A few things broke this week early in our stay: the car charger (luckily the car was already charged) and the dishwasher. When the repair people fixed the dishwasher yesterday they showed me a tray with the broken pieces of the pump/grinder and what was in it. They said to be careful what we put in the dishwasher. I was puzzled because we always rinse things. But next to the broken metal teeth there were…seeds! Of the sort we find all over this house! The sort the mice bring in and store! So our dishwasher was broken by mice!!!! That can be our new headline: Mice Break Dishwasher.

July 31: Challenges and Insights re: My Favorite Baby Crocodile

This morning I almost forgot it was Sunday. That is part of why I’m writing later than usual. The other reasons are just taking care of various household things and doing “chirp chirp” snuggles and naps with Sarah.

Sarah’s latest thing of seeming to be extra sensitive to being touched and asking us to apologize for even lightly brushing her hand even if we are helping her to put on her watch as she requested has been extremely challenging for me. Wednesday felt particularly difficult and I had no wiggle room to think creatively or not take it personally. I felt hurt, confused, frustrated, angry, and upset. I was often snarky and sarcastic as I apologized for “helping her” or for not even touching her! Because sometimes she will look at me and ask for an apology when I haven’t even touched her. Her sensitivity is to others as well, not just me. I know it isn’t that physical contact in general hurts because she still initiates chin presses and hugs. When I do lightly touch her by accident and she says “ow” then I ask if it actually hurt or if it was just a surprise. She says it doesn’t actually hurt. And yet sometimes she seems to cringe if I come close. This is not fun. Wednesday evening I completely ran out of space to deal kindly with it and Carl had to step in to help us finish our bedtime routine. 

I did learn from watching Carl one evening as he was able to turn the dynamic into something with more play and lightness. When he heated some pie too long in the microwave then Sarah thought that was hilarious. She pretended to heat her own pie too long and he playfully apologized for it being too hot. She laughed. I will tentatively say I have slight hope that Sarah’s new pattern is easing, especially as we are able to respond more lightly. I think when I felt so hurt and frustrated by it, as if the rug had been pulled out from under me once again, that my own tightness didn’t help shift anything for her. Shocking, I know. I cried, I journaled, I talked with my mom, and I scheduled a consultation for Aug 8 with someone who is a Son-Rise specialist. That all helped some and maybe it is becoming slightly less frequent of a dynamic with Sarah. I’m not sure. I don’t always trust my perceptions.

I will say though, in terms of my perceptions, that sometimes they are spot-on.  This morning there were two times when I needed to find something that Sarah wanted and couldn’t find. Each time I was able to let my mind be relaxed while I thought about where it might be and each time I was led unerringly to look in the right spot. I don’t know if that mental relaxation could help with the “ow” and apology requests but it certainly can’t hurt. As I got up from our nap my hair apparently brushed her and she wanted an apology. I took my hair in my hand and pretended that it was speaking to say, “I’m sorry.” She laughed and said, “that’s funny.” Similarly she liked it earlier in the week when the empty grocery bag I was carrying apologized for bumping her.

For another unknown reason Sarah is often saying, “we don’t talk about hitting” or “you won’t poke me in the eye because you like my rings.” What??? Where is this coming from?? Carl noticed that sometimes in moments of intense emotional upset Sarah will reference something that perhaps happened at school months ago. So maybe all of this is processing things talked about at school ages ago? Or did she and another kid have a conflict at school? Trying to get answers is rather impossible as she just repeats part of my question as her answer.

Yesterday morning she again felt sick with phlegm and a headache for a few hours. It went on long enough that I worried we needed to cancel all of our plans. And then she guzzled a gatorade and had lunch and seemed fine. It is hard enough to keep my own self hydrated. It is even more challenging to keep someone else hydrated. Once she was better we were able to keep our appointment to renew her passport and go to a graduation party for a family friend. The kids and I had a great time in the pool, and Sarah and I played several games of tossing bean bags towards a goal. 

I pay $4 an hour for the kids to help me clean the house or deal with the messes in their own rooms. While I don’t want to have this be forever, because I want their own room upkeep to be on them, I do love that they are motivated to deal with piles. Sarah has been doing a wonderful job actually putting her clothing away instead of just piling it onto her dresser. Amy does a wonderful job dealing with piles of toys and clothes and art supplies that accumulate in various corners and surfaces of the house. They also helped me with a long morning of groceries and errands so I paid them some for that too. Since we don’t give them an allowance it is empowering that they have a way to earn money. I also realized that Sarah does a great job of staying with me in stores and this wasn’t always the case. As with so many things, we eased into this gradually and it has been this way for a while, but it was only on this shopping trip that I realized how I now take it for granted. 

Some tremendous firsts from the week include Amy, Sarah, and Amy’s bff going to get ice cream by themselves!! Amy wanted it to be Kids Only so was happy to be responsible for making sure Sarah crossed streets safely and for requesting a clean ice cream scoop because of Sarah’s nut allergy. Now I realize that next time I can tell Sarah to be the one to ask for the clean scoop and say why. And Amy went to Walgreens all by herself to do an errand for me!! 

Yesterday Amy and Carl enjoyed a bit of time biking around town for Open Streets. That was after she and I went to her orientation for 6th grade. She will be at her same school and with many of the same classmates but in a new building and with new teachers. This will be the first time she can’t walk to and from school since she was in preschool. We are waiting for the bus pickup and drop-off information.

I forgot in an earlier update to share how funny Sarah found it one evening when I went into her room and exclaimed, “Why are all the Peppa stuffed animals sitting on your bed with crayons?!” Each pig had it’s own pile of crayons. Apparently this was from an imaginary restaurant that Amy was a waitress for, while Sarah and Anna practiced conversation skills while pretending to be at the restaurant and meeting each other for the first time.

I’ve been reading Sitting Pretty by Rebekah Taussig and I highly recommend it. It is eye opening and mind opening about ableism and how pervasive it is, to the extent that we don’t even notice it as optional because it seems like the truth about how the world is. It is helping me open up my perspectives regarding Sarah’s place and possibilities in the world especially as she gets older. 

I am also realizing that much of my upset and tension comes from resisting what is. I notice myself thinking “but I don’t want to…” and that is fine, but maybe my thinking I’m somehow entitled to (or wishing for) a path other than the one I’m on is what is causing my emotional blisters. Most of the time I don’t want another path but I wish mine had less potholes. Maybe if I really allow it to be ok that I may have the same conversation loops multiple times a day for multiple years and dive into that truth without resisting, maybe it will be easier. Maybe if I accept that I won’t understand what Sarah is thinking or where her new verbal isms come from, I wouldn’t have the tension born from resistance. Taussig made the insightful point that people think they know what their life path will be with someone who doesn’t have a disability (as a partner or, I would add, as a kid) but really… do we? More often than not people do not in fact get the life path they expect even when they start with what they think are the required ingredients. Sometimes I can think my life would be easier if Sarah was a typical kid, but… would it? Might it not also come with challenges that I didn’t feel equipped to handle? 

July 24: Return of the Prodigal Suitcase and Family Reunions

Carl’s suitcase made it home! It helped that he went to the airport in person to ask about it and then was given a phone number that actually reached a live person. That person did something to get the search for the bag reactivated and the bag arrived at our house two days later. 

Last Sunday the plan was for Amy’s Girl Scout troop and our family to go to Sandcastle for the afternoon. Unfortunately, an hour or so after we arrived the thunderstorm, that was predicted for later in the day, decided to arrive early. They closed the park before the girls had done anything beyond the wave pool. There was much disappointment. 

Amy received a fun and mysterious letter, with no return address and no legible signature, explaining why it was unfortunately not possible to send a unicorn to the moon. If this is from any of you and you want to fess up and receive credit let me know! (And I can still keep it secret from Amy). 

The most mysterious thing of late is Sarah and her new sensitivity to being touched by accident, however lightly. If my hand lightly brushes her shoulder when I am brushing her hair she will say “ow.”  When I ask if it hurt she says no. Or she will tell me she needs personal space even though she was the one to enter the room where I was and we aren’t near each other. I have no idea from whence this came and I’m finding it very emotionally challenging. She still gives me chin presses and wants to snuggle, which is lovely, but also makes this more confusing to figure out what is going on for her. 

Sarah has also been having issues with too much phlegm again. Perhaps because I took two days off from giving her Claritin. For three days in a row she had mornings where she felt sick to her stomach and needed to spit up phlegm and rest but then was all better. I took her to the doctor who suggested keeping her on Claritin for the foreseeable future and to start her days with a glass of water. That does seem to help. 

This weekend we are having a wonderful time visiting my aunt and uncle in Virginia. On the way we stopped at our favorite rest area that has a sand area, a wooden train (I swear it used to be bigger!), and delicious cider donuts. The house where we are staying is next to a lake and many other extended family members are visiting too. Amy had a hilarious conversation in gibberish with the three year old (they were both fluent) and has also loved meeting an older cousin with her pet Guinea pig. Yesterday we spent a ton of time in the lake and at a pool. The water was so warm that I even got in! I also took a turn with Amy as we sat on an inflatable couch and were pulled around by a boat. This morning Carl is doing a long bike ride as part of his training for a super long bike race in September. I’m sure we will all also spend a lot of time in the water today. It is so fun to spend time with family that we haven’t seen in many years

July 17: England and Luggage Issues

I had a lovely time being together with some of my Alexander Technique friends in Bournemouthe, England. I had a 30 min walk (google said 20 min, but I’m slower than that right now) to get to the host’s house for our gathering. I was pleased that I was able to do such a long walk all at once. Carl and I had covered much ground too, but usually in shorter stints. I also find it easier to walk when I’m with someone else, so doing 30 minutes on my own felt like an achievement. I was also proud of myself on the day I figured out how to take a bus for part of that distance. My friends also gave me rides sometimes. We went to the beach twice and that was also a good amount of walking. Unfortunately, I had packed for Wales with jeans and a wool sweater. I hadn’t really planned for the sunny and windless 75 of southern England, so I only had one t-shirt! Overall it was rejuvenating to be with my AT group. It had been nearly three years since we last saw each other and it filled my heart to be with these dear people again. We hope to reunite in the future, although Amy is convinced that once a year is too often for me to go away. 

On my last afternoon in Bournemouth after my AT gathering was done, went off to do one touristy thing. I went to find the grave of Mary Wollstonecraft Shelley, author of Frankenstein. I made it to the correct church and graveyard but then realized I had no idea how to find the actual grave. Many seemed to have special signs for tourists to read. I was worried hers might be in the church itself and that was due to close in twenty minutes. I stood in the graveyard a few feet away from one of the graves that had a marker, searching online to see if I could find guidance. Nothing. I gave up and walked a few feet up the hill to look at the grave I was closest to. Yup. It was hers! 

When I wrote last week that was prior to Carl’s Heathrow airport experience. Luckily he got there with plenty of time, but… just as he was close to the front of the line to check his bag, the baggage system for terminal 5 shut down. Then the baggage check-in system for all of Heathrow went down. He waited and waited and waited. Eventually he was told to just leave his tagged bag in a large pile. Since so many people were waiting to deal with their bags, it meant that the security line was relatively short. Still, Carl ended up running to make it to his flight on time. And to get from security to the gates is a long way involving escalators, long distances to walk or run, elevators, trams, and more long distances to traverse. He just made it. 

By the time I was flying home on Wednesday, Carl’s suitcase had still not arrived in Pittsburgh. I got to Heathrow 4 hours early, but that was actually too early to check my suitcase, so I decided to see if I could track down Carl’s suitcase. That situation felt ridiculous. There is just a set of seats by a sign that says “luggage inquiries” and if you are lucky someone will pick up when you call via the courtesy phone. Or if you are extra lucky someone will come around and take notes on a clipboard before they disappear through a door that regular people are not permitted past. When you look through the doorway you can’t see anyone at a desk or anyone who seems related to baggage inquiries. I did talk to the clipboard person, waited for half an hour, and then gave up because at that point I could check my bag and I didn’t want to mess up my timing. It was relatively easy to check my bag but then the security line was the longest I have ever experienced in my life. I think it took me 90 minutes to get through, and that was with the help of being sent up to the front when I was 3/4 of the way through. I was worried about missing my flight but I couldn’t run because my hip isn’t ready for that yet and in many areas everyone else was also going where I was going so there was no way to easily get through the crowd. I made it to my gate when I was sure they would be done boarding and about to close the flight. Instead it turned out that boarding hadn’t even started. Eventually I got a text from British Air telling me the flight was delayed. That was never put on the big boards or announced. So I got some food and settled in with my book. At one point a group of high school students near me started singing “Miss Mary Mack.” They didn’t get far before realizing they didn’t know the words. I chimed in and brought the song all the way home to the end. The kids were thrilled. All of my mothering years of singing songs paid off.

The original plan was that Carl and the girls would meet me at the airport, but once my flight was delayed we knew that didn’t make sense. Evidently there were big feelings at home about this change. And then the power went out. Carl said that actually helped the moment because it changed the focus. I landed at 10:30pm, made further inquiries about Carl’s suitcase, was told it had arrived in Pittsburgh the day before and would be delivered to our house. Great! Except that if it arrived July 12 then why has it still not made it to our house? Carl and Sarah even went to the airport yesterday, but since there wasn’t a British Air flight arriving that day then there was no one to open the office where the suitcase might be. 

I’m so glad to have gone on my trip and it’s also so nice to be back home. On Thursday, Sarah and Amy and I went out to lunch and to do some errands. We explored a used clothing store we had never been to before. Sarah found a shirt with dinosaurs in a jungle, and Amy found some very Amy-ish items as well. On Friday they had their last day of Camp Anna, which concluded with a performance of their beatnik poems while wearing sunglasses and homemade berets, a performance of cheers and gymnastics, and a short Harry Potter skit that involved making a feather fly. 

Lots of love to you all. May you all have your luggage!

July 10: Wales

Fortunately, I recovered from covid and tested negative in time to go to Wales with Carl to celebrate our 20 year anniversary while the kids had adventures with Grandma and Grandpa. Carl and I spent some time in the middle of farm land in southern Wales and also had some nights at fancy manor houses, including Plas Dinas. Plas Dinas was the family home of the man that Princess Margaret married so she spent lots of time there. We explored castles, took a train part way up a mountain, ate delicious food, had a seagull try to steal my ice cream, drove on impossibly narrow roads bordered by tall hedgerows, and tried to pronounce ll in Welsh. Carl did the fastest zip line in the world. About 100mph. I watched. My hip did well with all of our walking. Climbing over stiles was the most challenging bit, along with some of the very narrow stone spiral staircases. Yesterday we had a long day of driving to get down to Bournemouth in England, stopping on our way to visit the smallest house in England. It was incredibly tiny. I will now stay in Bournemouth for a couple of days to review some Alexander Technique things with the friends I studied with pre-pandemic. Carl will fly home today. 

Astonishingly, on one of our first days we found a carved wooded crocodile statue and our Airbnb had a wooden spoon with a musical note carved into it! What are the chances?! 

The girls have had a good time exploring the library, a bookstore, a giant chair, swings, and getting ice cream. I miss them a lot and I’m jealous that Carl will get to hug them sooner than I will. It has been wonderful to text with the kids a bit, which is different from when we have been away on trips in the past. Sarah mainly texts strings of gibberish but I think she still likes the pictures we send. Given her penchant for saying “it’s a been a style” I had to send her a picture of Carl next to a stile. After all, I’m not sure if she really has been saying “it’s been a stile!” Amy likes to joke about flying bananas so we had to send her a picture of a truck that was labeled The Flying Banana. 

July 3: Covid, Crocodile Rings, and Being Carl

Carl was away for the week so we celebrated his birthday when he got home on Friday. Amy helped me make a carrot cake and frosting, plus using frosting as first aid for the pieces of cake that didn’t come out of the pans cleanly. Sarah and Amy decorated the cake and chose the candles. We also had a conversation about how most carrot cake in the world at large has walnuts and is not Sarah-friendly, which led to talking about many foods that might be off limits for S and so one needs to ask (eg brownies, cookies, banana bread, pesto). 

The bad news for the week is that I had covid. It didn’t hit me terribly, but it wasn’t a picnic. I opened all of the windows and wore a mask whenever I was inside the house or even if I was outside if the girls were near me. They got to watch many shows and movies. Sarah really wanted snuggle time with me but I couldn’t lie down without coughing until recently and by then Carl was home so he was able to be with her instead. Amy and I played many many many games of Who’s She? Which is a version of Guess Who?. The original version of the game is made with cheap plastic and the people you are guessing between are largely white and male and you just ask about physical characteristics. The new version that I got via a Kickstarter campaign is made of wood and features important women from a range of historical time periods and backgrounds. You ask each other questions based on a symbol key to figure out who the other person has as their hidden person based on their life experience (eg did she defend women’s rights? Did she study mathematics?). One of the people on the game is Aretha Franklin so that led to listening to Aretha for as much of the weekend as I was allowed my pick of music. 

Sarah’s second crocodile ring broke because both the first and second rings were made of a cheap metal blend. It’s an adjustable ring so over time the adjustments broke the metal. I ordered what I hope is a stronger silver version through Etsy, but while waiting for that I decided to take pity on myself and order something from Amazon that would come quickly. I just wasn’t in a mode to handle Sarah’s impatience. One morning we sat on our porch swing pretending to be Frog and Toad waiting for the mail. Amazingly enough, the mail did come at that time, and Sarah’s new (cheap - probably will break) ring arrived!. 

Sarah still asks constantly if we are doing a nickel chart or if we will take a nickel from her. She doesn’t seem anxious when she asks but at the same time I think the time in December when she lost a nickel from her chart at school has stuck with her in some deep way. I used to always say no one would ever take a nickel again. But it seems that on a field trip at the end of the year there was a point system and she lost a point and that kicked everything up again emotionally. So now I have attempted to explain that while some people may mistakenly have nickel systems or point systems no one can take away from the nickels in her heart. No one can diminish who she is. She also sometimes asks if she did anything wrong. I have tried explaining that we all do things wrong and that is part of being human. I don’t want her to think she always needs to do things right (I know from personal experience how wearying that is). 

Another frequent refrain is that Sarah asks if a certain kid from her class wears glasses. I don’t know! And when I say I don’t know then she often tells me she is wearing pajamas or asks about nickels. I am having a hard time being relaxed and creative with this because it just makes no sense to me. I don’t know why I need this to make sense when so many other things don’t, but so it goes. I also weary of the nickel questions. But perhaps this hasn’t been my most resilient or energetic of weeks. 

Yesterday Carl served high tea with a serving tower made of plates balanced on glass storage containers. Then Amy dressed up as Carl, wearing his new cat tie that he got for his birthday (he also got a crocodile tie), his shirt, some glasses, and his shoes. Then he and the girls played a three hour board game! Sarah spent at least an hour after that time doing Peppa Pig puzzles in her room. And I read an entire novel over the course of the day.