November 18

Yesterday we went as a family to get flu shots. I had debated doing this for a while because I’m always concerned about Sarah’s system not handling it well. She has always been fine, but I think of her body as having more stresses upon it. There are people who come down very definitively on both sides of the vaccine debate. I hover in the middle, believing that some people’s bodies truly aren’t equipped to handle vaccines well so some thoughtful care should be taken. I’m also scared of Sarah getting the flu. When she got sick over Halloween I was scared that I had made a mistake in not getting a flu shot for her. I also read something from a friend about why she got a flu shot. She explained that she wants to help the herd, knowing that some people can’t/shouldn’t get the flu shot so that if those of us who can do so then we protect the herd better. Anyway, off we went. It was a very long wait and a very short procedure. Sarah prepared herself ahead of time by playing nurse with Carl. They gave each other shots and then pretended to get ice cream at Millie’s to recover. When it came time for the actual shot, Sarah scrunched her eyes and said, “thinking happy thoughts! happy thoughts!.” Not a tear or a scream. She handled it beautifully. Amy was scared and crying but handled it no less beautifully. I want to be careful to celebrate accomplishing a task whether or not one had feelings involved. It is ok to have feelings and tears. It doesn’t mean you didn’t do a great job. Of course, we went to Millie’s to celebrate. Millie’s has several vegan options so it is a favorite place for us to go with Sarah, who can’t have dairy.

This week Sarah and Amy had some wonderful play times together. I still pinch myself a bit that this happens so easily and independently. That used to be something I knew other SR families achieved but it was a dream far off if not impossible for us. One evening they donned swim caps and pretended it was safety week, meaning that they kept their clothes on and practiced rescuing each other. Amy also practiced her laps and assisted Sarah with floating. On multiple other occasions they played Chutes and Ladders all they way through, with no adult intervention. This still seems miraculously amazing. For all of the struggles we may still have or the goals that remain seemingly impossible, here we are. We have already achieved so many things that used to seem unattainable. I liken our progress to someone climbing a mountain who refrains from looking down. However, in our case I think I fare much better if I only look down at what we have accomplished rather than letting myself feel despairing about anything we haven’t surpassed.

Mornings with Sarah have been good, though I feel rather blasphemous when I interrupt her latest diversionary tactic: she wants to sit in her bed by the cross (a present from school) on her wall and pray. She recites the Lord’s Prayer, slurring and rushing through the words that feel too complicated, such as “hallowed.” It is adorable. And, it can’t go on forever because there is a bus to ride! Speaking of the bus… Our driver has been wonderfully reliable. Thursday morning the weather was rainy and sometimes icy. The bus was late but I thought that was understandable. When I called to double check I was told that the driver had been at our house at the usual time and was now headed to Sarah’s school. What?! I know I was tired but how could I have missed seeing her bus when I was standing by the front door as I always do? Was I losing my mind?! Or had we been forgotten? This all seemed so implausible. I hadn’t yet gotten dressed and Amy hadn’t had breakfast. I threw on clothes and tossed some goldfish in a bag for Amy’s breakfast of champions. Off we went, delivering Sarah just a couple of minutes late. Meanwhile, my original plan for the day had included taking Amy to a friend’s house so they could walk her to school while I went to an annual checkup with my headache doctor. Instead, I dropped Amy off with minutes to spare before her school started (after we went to Dunkin Donuts for her second breakfast) and then walked in the door at my doctor’s office at precisely 9am for my 9am appointment. I had a sub arranged for the start of the class I teach on Thursday mornings. I walked in minutes before he was scheduled to leave. Due to general confusion and who knows what because of the weather and the 1 hour delay called at my school, my students hadn’t started anything and several of them arrived when I did, which was late even with the delay. The class still went well and all was accomplished that needed to be, though my shower and teeth brushing was vastly later than is my norm. When Sarah arrived home I asked the driver what had happened in the morning. It turns out he was late starting his route and told the bus company to call me. They didn’t. When I called them they gave me completely incorrect information. He wasn’t yet to our house! At least I wasn’t losing my mind. Now the driver and I exchanged cell phone numbers so we can communicate directly and correctly.

Much love to all of you. Happy thoughts!

November 11

I love how much Sarah loves learning new, sophisticated words. The first three days of this school week she got ready for the day way more easily than usual. There was almost no yelling. I wondered where my child had gone. Then Thursday morning dawned as early as they all do and she was back to her customary times of yelling. After her grumps were out I told her that she had been really ornery. She looked at me with a delighted gleam in her eye and rapturously said, “yes!”

During my SR time with her I didn’t feel particularly connected or inspired but I was able to relax into hanging out together. She wanted to string her loom and then wanted to climb into it. 

I continue to marvel when I watch Sarah tie her shoes. I know it isn’t needed for her to have a successful life, but it is so amazing to see her dexterity. It still feels like a miracle because it used to feel impossible. 

I had a conference with Amy’s teachers and I had Sarah’s IEP meeting. In telling the girls that such meetings were going to happen, I said what I always do... that I am going to meet their teachers and we will talk about how great they (Amy and Sarah) are. This is always true. I love that this is true even when we are discussing Sarah’s challenges and challenging behaviors. 

Reading through the IEP pages felt rather disheartening as usual. I know I have tons of hard moments with Sarah and there are tons of things that I wish were easier. I know they have to write about where she struggles or where she is academically so that they can write goals for how to proceed. Still. There is that very low IQ number or other categorizations that feel yucky. I then have to remind myself to focus on things such as shoe tying or reading. She is reading at a first grade level. That is amazing. What I really appreciate about her team at school is how much they clearly enjoy Sarah, despite any challenges, just as the rest of us who know her do. It felt like a wonderful collaborative effort with flexible, creative thinking about how to proceed. The year began with Sarah joining the regular fourth grade classes for the full time. I think that was too much for her and she is still in a rebound stage. One new thought is that just because she is technically in fourth grade doesn’t mean she can’t join younger classes for things. They will also see about finding a peer buddy for her, possibly a much older one or a slightly younger one. This idea came from recognizing how much she can connect with Amy and learn from Amy, but that she struggles with groups of other kids in terms of connecting. She also does so well with grownups that that is why an older kid might work well. We talked about her love of cooking and being a waitress and that maybe that can factor into her subject lessons and her celebrations for completing some school tasks. 

Mom-Mom and Pop-Pop are visiting at the moment. The girls have loved playing hotel with Mom-Mom. Sarah even agreed to read a book to Mom-Mom, which hasn’t happened much before. As is her wont, she skipped and hurried through the words. Amy sat next to her and told her she had to say each word clearly. Sarah did! At least for a sentence or two. I love how Amy can effectively achieve outcomes that no one else can. 

Mom-Mom and Amy were playing a surprisingly fun game of “are you wearing...?” with questions ranging from “are you wearing socks?” to “are you wearing a kitchen counter?” I was asked if I was wearing a bird. Luckily I took my time before answering, thus remembering that I was in fact wearing my Pigeon socks!

Lots of love to you all. May you have support and flexible thinking for any of your challenges. 

November 4

Sarah seems increasingly attached to Amy as a playmate and companion. Earlier in the week she was so intent on getting extra time with Amy to play hotel or sleepover that Sarah got ready for school the fastest she ever has. While she often plays with (or fights with) Amy, and while she often asks grownups to play certain games with her, this seemed new and significant. 

For my Tuesday night teaching I was excited to wear my skeleton dress. I have been waiting to teach on a day close to Halloween for years! The last time I dressed up for a Halloween at massage school was about 19 years ago when I was a student. I went as a mussel.

Amy adores our cat Olivia. This week, for the first time ever, Olivia curled up in Amy’s lap.

Our Sarah-Rise volunteers and sitters continue to amaze me as much as ever with their creativity. Sc made a pretend fire with Sarah by making a pile of wooden marble run pieces with a cut-out paper flame in the middle. 

For Halloween, Sarah’s school doesn’t have fourth graders get in costume. (What?! Why?! They are not too old to dress up!!) They do have a party where kids exchange treats with their classmates. Sarah came home with the biggest haul ever. The bag was laughably heavy. I spent many minutes swapping in things that she could eat and adding what she couldn’t to a bag for Amy or our bucket of candy to hand out to trick or treaters. Unfortunately, Sarah was feeling sick. She stayed home instead of going trick or treating. She wasn’t even sad about missing it, which shows how sick she was. She stayed home on Thursday, in bed most of the day. Thursday was also the start of a new neuromuscular class for me to teach so I was extremely grateful that my father-in-law was able to babysit. Asking someone to hang out with your sick kid is a big deal, and for them to accept is an even bigger deal. Wednesday night I was anxious about Sarah’s sickness, worrying that it might be something dire and that in some way I had failed as a parent in my decisions about her health. Our cat also has something going on health-wise (probably an allergy of some sort) and I was anxious about that, concerned about how intensely heartbroken Amy will be if she dies. I really didn’t sleep well on Wednesday night, so when I came home from teaching on Thursday morning I was exhausted. I napped and then felt ready to work that night. Friday, Sarah needed to stay home again, even though she was notably improved. I spent half of the day in bed too and that helped me feel much better. 

When any of us are sick I tend to let technology use be unlimited. Yesterday it was limited because all of us are well (except the cat). By the end of the day there was much more of a mess throughout the house. At first I was grumpy, but then I realized that having toys spread all over is a wonderful sign that the girls have been playing and feeling good. 

October 28

Yesterday was a hard day for Pittsburgh, with a man killing several people in a synagogue. Normally I haven’t spoken much to the girls when such events happen but they were with me when I heard the news so they heard my gasp. Amy seemed to understand somewhat, although not in a way that meant she was scared or sad. I connected it to why they do lock down drills at school. It feels like a tricky balance to give weighty information lightly enough so as not to traumatize, but still wanting them to understand. The night before, Amy and I were reading a book that mentioned the devil. Amy didn’t know what that was and my explanation began with God and how different people believe different things. I explained that sometimes people get the ridiculous notion that their way is the only way and then in the name of God and love they end up doing violent things and killing people. I don’t know what more to say and do. I feel a bit numb about it. While I know we must continue to contact our politicians and vote and work for change, I feel jaded from so many past events that did not then bring the change I keep thinking must be forthcoming. I do know the city is collectively heartbroken. As I checked with some people to make sure they were at least physically ok, I thought of how it must have felt for those people who couldn’t answer such queries in the affirmative. I didn’t really want to begin an update with this, but at the same time it would feel like a glaring omission to say nothing. For the past few days I have been (un)working more at going with the flow of love and connection, especially with the girls. This tragic event boosts my intention, because a loving moment is so much more important than dishes. This requires time and again letting go of what I planned on doing in a given moment. 

Sarah and I had our most successful time at gymnastics in a long time. These days it is usually Carl who takes the girls and shadows Sarah’s group, but he is out of town. The times that I go are often fraught with tension between Sarah and me, her habits, and my grief that she is not somehow different. Not yesterday. Before class, I reminded her of our time last weekend avoiding the barking dog and the prickers. I told her we were on the same team for gymnastics. The few times she started to whine or bristle, I reminded her that we were on the same team and that she didn’t need to fight me. It worked. I had some fleeting moments of heartbreak watching her really not be able to do a bridge or cartwheel, but those were mightily outweighed by feeling at ease and connected. It was so nice to get through a class and not feel like I’d been through an emotional ringer or like the worst grumpy mom ever. 

Last night the girls and I went to a Halloween party at a neighbor’s house. We attend every year. This year Sarah participated in the games in a way she hasn’t in the past. Amy helped her in little moments and cheered her on. I feel like there has been a subtle but definite shift in some moments lately where Amy is stepping further into a helper role with Sarah. It is in such a peer/sister/friend way that it is beautiful. 

I forgot to write last time about when I went to pick Sarah up early from school one day. I have maybe met the principal twice since 2016. The secretary wasn’t at her desk so when I arrived the principal came out to meet me. Without asking me anything, he said he would go tell Sarah I was there. My jaw dropped. That is surely a sign of a connected and attentive principal. 

Sarah had a checkup with her neurologist on Wednesday. Since her appointment was in the middle of her school day I kept her home for the whole day. It was lovely to have the day together. We went to a bus shelter so she could see one of her favorite pictures. It is a Molyneaux ad with a kid that Sarah thinks looks like Amy wearing a green shirt with a green carpet in the background. She likes to talk about the kid and about the ad for hot dogs on the opposite wall of the shelter. She also enjoyed saying “zoom” as she ran back and forth pretending to be a bus. After her appointment, we went to the cafe in the hospital for Sarah-friendly chocolate milk and some pretzels and hummus. On the way out we stopped to look at the fish and at a train display. The children’s hospital could be a destination for the day! They have so many things to make waiting fun for the kids. It was hard to drag her away when it was time to go. 

Sarah has been making her own sunbutter and jam sandwiches, thanks to watching episodes of Fancy Nancy. 

We carved pumpkins yesterday. Amy made a pink cat pumpkin, carved with a cat face and then painted pink. Sarah made a sad-faced pumpkin. I helped with the carving and cleaning out the gooey insides.

For Halloween, Amy is dressing as a black cat and Sarah is going as Pinkalicious. If you don’t know who Pinkalicious is, trust me when I tell you that Sarah in pink and pigtails looks just like her.

October 21

We bought a Sarah-Rise house. It is a vacation house about an hour away from our home and it is beautiful. We absolutely fell in love with the giant open living space. The kitchen, living, and dining areas are really just one big room and then the bedrooms are off to either side. The house is surrounded by woods in the Laurel Highlands. We woke up to snow this morning. I’m only half joking to call it a Sarah-Rise house. That truly was part of the thinking that allowed us to do what otherwise feels a little crazy. We wanted a space that would feel like the large-scale equivalent of a Sarah-Rise room, where we can focus on being together more than we do at home when the pull of dishes and house crap is so strong. Anyway, this feels huge and strange and wonderful and exciting. The girls love it. Their room has two full beds but instead of each occupying their own bed, they decided to share. Remarkably, Sarah didn’t come to join us in our bed, which she does almost every night at home. The girls fought and played as they usually do, but fortunately this morning they played together happily for a long time while Carl and I packed to come home. They played crazy eights in their pretend hotel. 

Yesterday we wanted to go on a hike. By “we” I mean the adults. Amy was amenable but Sarah was adamantly, screamingly, cryingly opposed. She also really didn’t want to stay behind if Carl left. So. We attempted it while Sarah cried and screamed. To get to the path from our house we have to go through lots of plants, including many prickers. We made it but it was not easy. Sarah and I decided to go back to the house via a longer route of staying on the path to the road. We were almost back to our house, with Sarah still quite distressed. Then there was a dog. It was up ahead in the yard of the house we had to pass to get to our own. It was barking loudly and the size of the animal matched the bark. I had Sarah get into my arms. Then I admitted to her that I am scared of dogs too and that I really didn’t feel confident going past that dog because I couldn’t tell if it was restrained in any way. So, back we went along the path and then through the prickers. What was notable was that as soon as the dog moment happened, Sarah was calm. We were a team. We were facing adversity together. We made it back and all was well. That time together felt so good, so real, so connected and unforced. I also told her about the lengths I would go to when I was younger to avoid the dog next door, which was actually a nice dog (I assume) but it was large and stinky. The most direct way home from my bus stop led me past the house next door (we were in a twin house so when I say next door I mean, adjoining our house) and its dog. Sometimes I would go aaaaaaaallll theeeee waaaaaay arrrooooouuund aaaaa veeeeerrry looooooong blooooock to avoid the dog and approach my house from the other side.

It always fills my heart to hear or observe Carl playing with the girls. They made a rocket ship out of blankets and pillows and cardboard. All of them were on board for take-off. They also had a pillow fight when they were playing “hotel.” Did I mention that the girls’ room came with plaid sheets and striped comforters?!

I came to a decision over the weekend, during a moment of crying in the bedroom because things were feeling challenging. I noticed how often my thoughts range to wondering why Carl is with me, when I am feeling so fallible and full of the grumpitude that I’m embarrassed my kids emulate. This time I thought, “This %#(y! has got to stop! (if only I meant the grumpitude! but I don't) I am not going to ask that question again or doubt myself like that again. No one is perfect. We all have our challenges. Enough.” So that feels good. I may reach for that thought again, as one reaches for a light switch when the power is out, but I’m just going to have to turn the power off until the question goes away.

I don’t really remember much of the week prior to the weekend. Things have been much fuller than even our normal level of wonderfully busy, with all of my travel and classes and teaching and all of Carl’s travel, some of which starts tomorrow. Plus the new house and preparing to be there for the first time. I was quite proud of the number of small items I thought to bring, such as trash bags and hand lotion. So here we are. I feel incredibly blessed. 

October 14

I returned from England on Wednesday evening. The week of Alexander Technique study was incredibly wonderful. Navigating through London at rush hour on the Underground with my luggage was less than wonderful but I did feel good about accomplishing my end goals successfully. I will make different choices the next time around as to transportation, but I will also be a little less anxious about the whole process now that I know I can do it.

When I arrived at home, Sarah was upset that she couldn’t get in my taxi van. Then she was crying that she missed Carl, because he was with Amy for an event at her school. This was not exactly the “Welcome home, Mom!” that I was anticipating. It was quintessentially Sarah, but it still wasn’t what I had hoped for. Her teacher said that during the time I was away she was a bit sillier and less focused at school and that the day after I returned she was more focused again. I don’t know if this is random or if that was the way Sarah’s missing me manifested. Amy leapt into my arms and hung on like a koala as she told me that she loved me and missed me so much. Re-entry after a trip is always a bit of an adjustment. This time was no different. I have handled some of it with more ease due to what I experienced and learned in my week of training. I have also had two times of losing my *T%Y#! and I wonder if that is partly because the time away was so intensely wonderful that then the adjustment to whining, uncooperative children, (especially Sarah) is harder to deal with. I don’t know. I’m also teaching this weekend so I’m not around much and I think it would make things easier overall if the girls and I had more time together. I didn’t want to be busy so soon after being gone, but it was scheduled long before I decided to take the course in England. The good thing is that my class is going wonderfully and I’m able to incorporate my new learning even though it isn’t an Alexander class. 

There was a beautiful moment with Carl when Sarah said something about a subject they had covered repeatedly. Carl responded, “We already talked about that. Did you want to talk about it some more?” That was so kind and beautiful and wonderful and perfect! I love that it drew her attention to the repetition but in such a respectful way, allowing whatever she needed in that moment. Carl's creative kindness and presence repeatedly amaze me. 

What also amazes me is that Sarah and I can have so many rough moments and then repeatedly return to loving connection and snuggles. This morning when I went to give her her anti-seizure medication she asked me to snuggle with her and be a sad cat. At first I was going to say no because I had other things to do, but then I realized the folly of that and embraced having sweet time with her. I could label her as stubborn and uncooperative and screamy and annoying. I could also label her as sweet, spunky, kind, and endlessly patient as my teacher, giving me continued forgiveness for my parental short-comings. Maybe it is all of it together, with me giving her continued forgiveness as well. I know I move through all of these emotions and judgements often and I’m always reaching for the love and positivity and then losing it and then reaching for it again, etc.

Sarah has been watching episodes of “Fancy Nancy.” This has resulted in her saying, “Ooh, la la” regarding her food. She also now wants to unload and load the dishwasher and get it started with soap! This is wonderful, but it also means we need to be on our toes a bit because sometimes she adds dirty dishes to those that are clean and then starts the dishwasher. 

Amy’s school just had a fall festival and it was the first time at one of these festival events that I haven’t been a ball of stress. It was mostly easy and enjoyable. Overall, the girls are more independent and responsible. I think I am growing up too, realizing that I can trust them more to be farther away from me. Carl took them to get bus-building supplies yesterday and commented on how much easier it is to do such shopping trips with them now. The girls also can walk much farther without complaining. I know much of this comes with the territory of growing up, but I still want to celebrate it rather than sneeze at it.

October 7

I am having an amazing time in England studying with a wonderfully amazing Alexander Technique teacher. I am learning so much! He is taking something that looks and feels like magic and teaching us the refined components so we can do it too. I know that is what all of my AT training has been, but now I’m ready for this next level. I’m learning how to lead groups more effectively and how to work more effectively with my hands on an individual. Since this teacher was part of my original training, it feels like coming home, even when I am so many miles from home. He has a playful, loving, attentive joy in life, people, and teaching that is just beautiful. It is a gift to be learning from him. Again I extend the most enormous thank you to the people making this trip possible by taking care of the home front. 

Before I left for England... Sarah has gotten good at tying her school shoes in the new way! I color coded laces of big shoes of mine so she could practice without the pressure of a school morning. Then I got white laces for her school shoes and color coded them to match. Within a few days she was tying with confidence rather than frustration. 

The first time Sarah had to take a shower, you probably heard the deafening screams. Keep in mind that Sarah loves rain parties so this was a puzzling (if predictable) response. This was about a month ago. The following week there was not a scream to be uttered! The first time, when she was screaming, I stayed calm but still made her do it, and then reflected that I was a terrible person and shouldn’t have forced. When things went so smoothly thereafter I didn’t know what to make of things, but I’m pleased that we are where we are. 

It is so easy for me to see where I wish Sarah was and to despair. It is also easy to flip that and remember to notice how incredibly amazing it is that she can tie her shoes and play the piano while singing along! 

As with so many things in life, every new step can seem completely impossible until it is achieved and then it becomes humdrum. How amazing. 

Lots of love and amazingness to all of you.