December 30

At 11:45pm pm on Christmas Eve, Sarah started asking if it was time to get up and open presents. This continued every hour or so until 5:15am on Christmas when we all got up to begin the day. We had a wonderful day filled with Amy’s new favorite game: Cat Crimes. It involves logic problems that can be solved as a group or individually. You have cardboard cats to place based on the given constraints and you have to determine who ate the fish or knocked over the coffee, etc. Sarah got a large cardboard castle that she and Amy enjoyed. We all had fun with new books, including one of my new favorites, P is for Pterodactyl. Grandpa visited for a bit, which was lovely. We also packed and packed and packed for our trip to MN and WI to visit lots of Carl’s family. 

Overall things have been going very well with travel and seeing relatives. The girls love love love playing with their cousins. There has been hotel pool time (just us), snow time, hot tub time, movies, chasing each other around the house, Pictionary, bowling, a carousel, and a trip to a wonderful Children’s Museum. For many activities Sarah was the driving force and activity director. 

The struggly moments: Amy was very upset about Sarah’s drawing ability or lack thereof during Pictionary. I thought it was amazing that Sarah did it at all. Amy sulked mightily after Sarah drew a frog that Amy thought looked nothing like a frog. Amy is usually so supportive of Sarah’s attempts at things, but Amy also has passionate opinions when it comes to art. Unfortunately this also means that she gets into a funk if her own creations don’t match her vision. Mom-Mom gave us some books that are aimed at helping her be easier on herself about moments when she deems herself not perfect. She is my child though so this may be tough. Yet, if anyone has experience parenting a child with some

rigid perfectionism, it is my mom!

The struggle with Sarah of late is that she yells many sentences just out of the blue or when right next to our ear or at 6am in a hotel. We ask her to be quieter. She asks why. We explain. And around and around we go. This feels extremely frustrating. 

I have had tiny glimmers of insight. One is that if I can remember to stay with myself and not tighten my neck then I get less mad. It is hard to be mad with a free neck. I have also noticed that if I can remember to praise Sarah for something she did well recently, before her behavior went downhill, then she sometimes reverses course back to being amenable.

December 23

When Sarah came home from school on Tuesday, she immediately asked me for striped fabric or fabric on which she could draw stripes. She desperately wanted to make a pair of striped pajamas for Sc. I asked Sarah if it would be ok to instead ask Sc to bring a pair of her own pajamas. She said it would be, but clearly had stripes in mind. I sent a message to Sc, indicating Sarah’s hopes. Almost too perfect to be believed, Sc arrived with a pair of red and white striped pajama bottoms. Sarah was delighted. Her dream came true. Sc is seriously one of the most amazing people I have ever known, and not just because she can produce the perfect striped pajamas on demand. 

We have been marveling of late at Sarah and Amy’s interactions. Carl overheard the following conversation. 
A: why are you wearing your shoes?!
S: I’m going on a trip
A: where are you going?
S: to New Jersey 
A: why New Jersey?
S: to see my family
A: we don’t have family in New Jersey!
S: it’s pretend

Generally, Sarah’s conversational fluidity is ever increasing and it is wonderful to hear. Sarah and I have also had harmonious mornings and good times in general. She is allowing me to sit at the table during breakfast without it derailing her focus or willingness to eat. She even sits on my lap sometimes. 

During her time with G, Sarah drummed on a pretend drum while singing “The Little Drummer Boy.” Sometimes the girls sit together at the piano while Sarah plays “Raccoon’s Lullaby” and they sing a duet. Sometimes they launch into a duet of “Jingle Bells” or they sing and dance to action songs they have learned from YouTube videos. One has lyrics of “I’m so happy, oh so happy.” It makes my heart sing to watch them sing and dance together.

We went to our mountain house and had a wonderful time playing in the snow on Saturday. Gorgeous snow coated everything and we could play on the woods right outside our house! The driveway is steep enough for sledding! We had new Freezy Freakies gloves to remind me of my childhood. It was magical. So was my afternoon of reading on the couch and then napping. 

There is a special place in my heart for mispronunciations, misspeaking, or misspellings of a certain sort. I’m not sure how to categorize it except that they make me laugh till I cry. Recently a friend posted something on Facebook that began with a completely correctly spelled and appropriately used “relishing.” I, however, read it as “re-lishing” as if “lishing” something again. Upon realizing my error I laughed till I cried. I laughed until my abs hurt. I laughed at myself for laughing. It was the best. I am still re-lishing the moment. 

Lots of love to all of you. May you have a moment worthy of relishing no matter how you look at it. 

December 16

A little over a week ago, Carl’s grandfather died. He had a full and wonderful 99 years. We waited until that weekend to tell the girls because we weren’t sure how they would react. Amy seemed a bit sad, mainly from understanding how Carl was feeling and because she could relate to how she loves her grandparents. Sarah didn’t seem sad, though she probably remembers her Great Grandpa H more than Amy does. Sarah had recently taken a picture of him to her school for Veterans Day.

This past week had three performances. The girls had their first piano recital. It was wonderful. Sarah paused in the middle to say hi to her teacher and then again to comment on her teacher’s polka dot tights. Amy played beautifully, including figuring out how to reach the pedal, stretching her leg long. The church had a feature that I wish all performance places had. It was a “cry room” where you could go with a kid and they could talk or cry or whatever but not be heard. Meanwhile, there was a window and speakers so the parents could still hear and see what was happening in the main area. Sarah spent some of her time in the cry room playing while another mom was in there with her kid. I love what a supportive and relaxed framework their teacher creates for all aspects of the piano experience. Neither girl was at all nervous about the recital.

Monday night Sarah had her school Christmas program. In contrast to last year, this year we could see her and hear everything. Sarah opened the evening by saying, “Welcome to our play.” During rehearsal she first asked if everyone could hear her.  Apparently everyone found this funny. I wish she had said that for the actual performance as well because her line got lost in the general noise, while serving to quiet everyone for the next person’s line. Still, it is pretty amazing that she was up on stage and speaking to a gym packed full of people, with poise and clarity. For many of the songs she seemed to be lost in the sights and sounds, standing on stage but not actually singing. We realized that next year we should find out what songs will be sung so we can practice with her a million times. When it was time to sing “Silent Night,” which she has been singing for years, she easily and fully participated. One other moment of note was on our walk to her performance. Amy complimented Sarah’s dress and Sarah responded, “thanks! I got it at A Child’s Wardrobe.” 

Tuesday night Amy had her school’s Winter Concert. The feel of the two school programs is so different. Both are wonderful, but Sarah’s is definitely more of a traditional and religious program while Amy’s is more of a party. The kids have dance moves for all of the pieces and some come in costume. It was wonderful watching Amy sing and dance fully and joyfully. Amy’s class sang three songs: one for Christmas, one for Chanukah, and one for Kwanzaa.

Wednesday morning started dark and early (5:40) as all school mornings do in these winter months. After the two previous late nights, it was not an easy morning, to put it mildly. The only good that came from it was talking with Carl about it, after feeling like I handled it abominably (trying to forcefully change a screaming fighting Sarah out of her pajamas and screaming at her to go have breakfast). He commented that she wasn’t really awake yet during those moments. That was a revelation. I am a morning person and a person who tends to wake easily at any time, especially when there is a schedule deadline to meet so I am boosted by adrenaline. Carl tends to struggle more to fully wake up, so he can relate to Sarah. I somehow thought that because her eyes were open and she was talking she was awake. Realizing that I was wrong was so helpful. Eye-opening, if you will. It changes how I will approach difficult mornings in the future, focusing more on what I could do to actually wake her fully.

What I didn’t realized until later in the day Wednesday was that Sarah and I were both getting colds, which may have contributed to our rough morning. Or maybe our rough morning predisposed us to colds. I honestly thought our sore throats might have been due to our yelling. Thursday she needed to stay home from school. If she hadn’t then I would have gone to work, but as it was I slept for most of the day. We are both on the mend, but such things can take a while. I can’t give Sarah some of the go-to decongestants or cough-suppressants because they lower the seizure threshold. She was fine for school on Friday, though, and it was the easiest morning we have had in a while. 

I have had a few fleeting moments where I have hope for my own ability to change. I have been able to remind myself ahead of time at least twice that it is actually ok if we are late to something or later than I planned and that it is better to be late than yell at my loved ones. It matters to notice this ahead of time, which somehow seems funny as it relates to lateness. I have also had a small handful of times when I normally would tighten against Sarah’s temper and upset, but I have instead been able to feel compassion and soften towards her. This isn’t the whole ball game by a long shot, but it is a start. Or it is a moment. Hopefully I can have more such moments. With the Alexander Technique I am fully aware that I may need to remind myself of something, like not tensing my neck, 60 times a minute. I think perhaps with Sarah and school mornings I need to remind myself 60 times a minute that it is ok to be late or miss the bus for almost all mornings.

Lots of love to all of you. May you be awake if your eyes are open.

December 9

The week has felt frustrating regarding Sarah getting ready for school in the morning or going to get Amy in the afternoon. Sarah was more resistant about it than she has been in a while. I started to feel like Scrooge or the Grinch, just hating Christmas because that is what she is asking about and wanting all the time, instead of doing what needs to be done. Yesterday also felt rough between us. It was extremely difficult to get her out of the bath and my hearing may have been damaged due to her volume. In response to such loud screaming I picked her up out of the tub and tweaked something in my back. It feels fine today but at the time it didn’t help the situation. It always feels extra frustrating when I observe myself as if from a far, disliking what is coming out of my mouth or my actions but feeling almost like it isn’t me and that I’m powerless to change it once it is set in motion. There are times when I feel like I’m throwing an ongoing resistant tantrum about her and the fact that she has a developmental delay/disability/special needs, however you want to describe it. It is as if I’m fighting my life and unfortunately it manifests through fighting her and having less room for her usual questions or ways of being. As Elephant and Piggie would say, “We will try again!” Today is a new day, this week is a new week, and so far so good. It helps that we have nowhere to be for a few hours so it is a relaxed morning.

There were some notable highlights from the week. At our neighborhood holiday party, Sarah worked on a jigsaw puzzle by herself and got some pieces in place. We don’t know how much of the puzzle was completed before she sat down to work on it, but those have never been her forte so it is exciting that she wanted to do it. The holiday party was also the easiest yet, with both girls being fairly independent and playing in the kids’ room on their own. I made cupcakes for the party but didn’t bring a dinner item for Sarah, assuming there would be options that she could have. Technically yes, there were things she could have eaten, but most she wouldn’t have wanted. I was starting to feel worried and like I had messed up by not bringing a hot dog for her when my friend set down a container of hummus with some pita! Whew! Thank goodness. This was a good reminder never to assume and always to come with a backup option for Sarah.

During her swim lesson, Sarah did the best floating with the calmest limbs that I have ever seen her do. Her new teacher seems to be quite effective with coaching her. We are still working on her not opening her mouth under water. As it is she has to spit out water every time she surfaces from the teacher moving her under the water. She looks sort of like a fountain when she spits.

For the past few months our upstairs bathroom has been mostly unusable while being redone. Friday night it became fully usable again! Normally Sarah doesn’t like baths and she especially doesn’t like showers. She manages, but there is often resistance to some degree, mainly about washing her hair. The new tub is deeper than our old one and makes bubbles. The girls loved it. They didn’t want to get out. Sarah especially didn’t want to get out. Carl said that washing her hair was even slightly easier given the movable hand-held shower head. After I recovered from her amount of screaming about getting out of the tub, I realized how amazing it was that her screaming is now about not wanting the bath to end. Throughout the rest of the day she kept asking when she could have another bath.

We got our Christmas tree yesterday. It was so cold that the girls just wanted to stay by the fire rather than help pick out a tree. Until it was time to go, and then they wanted to play. In past years, Sarah has decorated our trees a tiny bit but usually gives up after a few ornaments, perhaps out of frustration at the difficulty of getting them to stay. Or maybe she just got bored. I don’t know. Yesterday she participated and hung ornaments the whole time! When we were done she started taking ornaments off the tree and putting them on again, saying she wanted to try again. We have many branches with clusters of 5 or more ornaments. It was really lovely having the whole family decorating together the whole time. 

Amy received a treat this morning when our cat Olivia climbed into her lap and snuggled for several minutes. Amy loves cats immensely in general, but she specifically loves Olivia. We cannot leave for her school in the morning until she has given Olivia a goodbye snuggle. 

I get asked at least once a week if the girls are twins. Seeing them in front of the tree together with their matching haircuts and almost identical height, I completely understand the question. I doubt that anyone thinks they are identical twins, but I could certainly believe fraternal. People are then amazed to learn of the 4 years between them.

May you have some super awesome thing to balance any frustrations. If you are fighting your life, may you notice. If you have wonderful moments, may you notice. May you notice that you are loved.

December 2

Sarah loves bus shelters and some of the ads in them. She especially loves the Molyneaux carpet ad with a kid wearing a green shirt on a green carpet. Amy’s favorite ad has a cat playing a keyboard. A few months ago, Sarah’s favorite bus shelter was taken away! It was at a corner near the playground we walk to so this was very disappointing. Recently, a new (used) bus shelter was installed. Sarah’s favorite ad wasn’t there, but Amy’s was. We went there yesterday and they had fun pretending to sit on a bench that wasn’t there. Sarah told me she was a goof and a half, which is what I often tell her and is so true. Sarah had fun for the entire time. Amy really wanted Sarah to play school her way and got upset when Sarah wouldn’t. To Amy’s credit, she was much more flexible than usual. She got stuck though when it came to math. She gave Sarah a math problem on a piece of paper and Sarah didn’t want to do it. I explained that maybe 6+4 was too hard for Sarah. Amy couldn’t understand this because to her it is the easiest thing ever. I tried pointing out that she didn’t always know the answer and that when she was in preschool or kindergarten it might have seemed hard. Math comes so easily for Amy and she loves it. Math is one of Sarah’s most challenging subjects and it does not come easily at all. Still, I will see the success in Amy’s flexibility of allowing the school room to sometimes be in the bus shelter. 

Responding to Sarah’s love of restaurants and being a waitress, her teacher has created a menu of options. The options are reading book, reading activity, spelling book, spelling activity, math book, and math activity. Apparently, Sarah loves this and studies it seriously before deciding.

Her teacher also says she has been quite independent about changing out of her boots and into her sneakers when she arrives at school, possibly because she is so proud of her ability to tie her shoes. As she should be! It still amazes me. 

Sarah’s favorite show to watch these days is the Turkey Dance or similar dances led by a person on youtube. I love that this gets her up and moving a bit more.

Recently I spoke with someone who is interested in the Son-Rise Program. I began looking back through my updates in search of a video of me playing with Sarah. I never found one, though I know we have such recordings. I did find a video of M. playing with Sarah. M is a specialist who did outreaches with us. It was amazing to see such a young Sarah who was still so much learning to speak. It was amazing to read bits of updates from years ago. I realize that with any person it can be stunning to have proof of the passage of time. Somehow it boggles my mind more regarding Sarah because I didn’t take anything for granted the way I did with Amy. Of course Amy would learn to crawl, walk, talk, eat, etc. With Sarah we really didn’t know. On the one had we believed fervently, determinedly, and passionately. On the other hand we just had no way of knowing and each skill was much more hard won. It feels the same looking ahead. I have no idea if she will be able to do certain things, but I can still hope and work towards them. I know I write about this kind of thing often. It really never gets old for me.  It still feels like a miracle. Noticing how far we have come also helps me handle any current struggles with a bit more grace (maybe. sometimes).

May you notice how far you have come.

November 25

Last weekend Sarah and Amy had a group piano class. This is a small, informal recital with the other piano students in attendance. Sarah had no interest in the games to get to know the other students. She wanted to play the piano! When it was her turn she announced each piece before she played it. After her originally planned pieces she wanted to keep going! Her teacher had to stop her from just going and going. She probably would have played everything she knew if we let her. We joke that when it is time for her recital we may need a long hook to pull her off the stage. When it was Amy’s turn, Amy had beautiful poise, grace, and presence. I had thought she might be nervous but she wasn’t at all. When she took her bow at the beginning and end, she took her time and made eye contact with her audience. 

Sarah is increasingly interested in helping in the kitchen. Sometimes this works and sometimes it doesn’t. Yesterday she heated left-over mashed cauliflower and mashed sweet potatoes, saying they were mac and cheese, and served them to herself and Amy. Earlier in the week she made scrambled eggs for multiple people for dinner. Carl was the supervisor in both situations. I think he is often a bit more relaxed about Sarah’s kitchen help than I am. 

Sarah loves wearing pajamas and often wants to wear them to school. Her reasoning lately is that they are “comfy cozy comfy cozy.” When Grandma delivered the new pajamas she recently made for the girls (cats for Amy, pandas for Sarah) I kept the pjs hidden until Wednesday after school. I knew that if Sarah had them earlier it would have been impossible to get her dressed for school in the mornings. The girls love the pajamas  and Sarah has worn hers for the better part of the last 82 hours. Hopefully by Tuesday morning she will be willing to part with them for the duration of her school day. 

I think Sarah’s language is getting more fluid and specific, with longer and fuller sentences than she used to use. One morning she explained to me her delay in coming down to breakfast: “I’m getting the snot out of my nose,” and “I am throwing the tissue away in the trash.” Good to know!

Thanksgiving was lovely. We ate lots of good food and had lots of time to play games together. Amy and I played Catopoly to completion. The game is slightly different from Monopoly, but is basically the same. Amy beat me thoroughly.  Sarah even joined for some Catopoly rounds and I realized that adding the total on the dice is a great way for her to practice math. Counting her moves on the board is a great way to count with matching a thing to a number. She is great at counting in general but there isn’t always a one to one correspondence to the items being counted. We also played SET, which is a bit complicated. Carl figured out a simplified, non-competitive version and Sarah was surprisingly interested and adept. SET involves making sets of three cards that have shapes on them. There are diamonds, squiggles, and ovals. They can be purple, red, or green. There are 1, 2, or 3 shapes per card. A given trait must be different on all three cards in a set or it must be the same. For instance, you can have 3 diamond cards in 3 different colors and 3 different numbers or all the same number. It is both easy and complicated. It requires really paying attention and looking at the cards, which are not always Sarah’s strongest skills. Amy found the game super easy at first so she was complaining that it was too easy. Then it became impossibly hard and she wanted no help and nothing to do with the game ever again. So it goes. We all have those moments in various aspects of our lives. I’m sure in the future Amy will be open to trying again. 

We had a couple of walks in the woods on Friday so the girls could skate (in their winter boots) on frozen puddles. They had a great time. Lately it has been impossible to get Sarah out for a walk in the woods and the mere suggestion results in screaming and tears. Once ice skating was involved then our little bear couldn’t get enough of being out in the woods! Until she fell and bumped her elbow in a way that hurt. We took her inside. She was ok but had a lot of feelings about it. She cried for a long time. Then nurse Amy came to play and Sarah was happy and sparkly again, listening to Amy read an Elephant and Piggie book.  

Grandma and Grandpa have been in Pittsburgh often over the past year and I have really loved having them around. My early Christmas present is that Grandpa will be here most of the time from now on. He bought a house that is nearby. Grandma will visit often, but still has work in MN so that will be her home base. I am thrilled that Grandpa will live in Pittsburgh. Last night I was thinking about how lucky I am with the extended family I acquired through Carl. I love my in-laws. All of them. That isn’t to be sneezed at. The girls are thrilled too. Whenever Grandpa arrives, Sarah lights up and zooms over saying “Grandpa!” and then wants to tell him something.

May you feel comfy cozy.

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. 

September 30

This week Sarah has been testing boundaries. I didn’t originally see it that way. I saw it as supremely frustrating and I didn’t know how to make things better. Sarah has been purposefully doing the opposite of what we say or purposefully ignoring us. This isn’t new, but it seemed like someone turned up the volume knob on it. This morning, Carl helped me see that we could frame it as boundary testing and that maybe she is on the verge of a breakthrough. We know that when Carl was growing up he would sometimes be more challenging and contrary right before a developmental breakthrough. Looking at Sarah’s behavior that way helps me feel so much better about everything. Carl also had the idea that we could think about ways we can give her more independence or talk to her more about events and transitions before they occur. I had been in a mode of basically holding Sarah at arm’s length, not wanting to engage or really be with her because it felt so difficult. I felt like I couldn’t reach my Son-Rise mentality for all I was worth. Now, with my picture of Sarah reframed, I have renewed energy to be with her, a true desire to be present with her. When I give a massage, I always think that it begins right before I knock on the door. It is in that moment that I reconnect with my whole self. This morning when I went to tell Sarah that her ipod turn was done, I felt that same kind of preparation. I felt love for Sarah (rather than dread or annoyance) as I approached the door. I felt connected to my whole self. That felt so much better. Now to remember that my time with my children begins right before I am actually with them. It is about making that choice to love being with them rather than tolerating them. Making that choice is easier when I am fed, watered, and feel that all is not lost on the parenting front.

At school Sarah has been disruptive in a big way in computer class for two weeks in a row. Her teacher and I agree that it makes sense to reduce the amount of time she is spending in the regular classes so she has more time in the Resource Room, where she gets more one on one attention and can also just have a break and do sensory play. Up until this decision she has been attending many of the regular fourth grade classes for their duration, including sometimes two in a row. Considering that, wow!! Holy moly. I am amazed that Sarah could do that and still be doing as well as she is doing. I appreciate her teachers and school program so much that they have the flexibility to realize this may not be working for her and that they can adjust things accordingly. This is the reason we picked the St. Anthony school program. They adjust per child in a way that feels nurturing rather than pejorative. It is also a good reminder to allow for more SR time at home, whether in the SR room or not. It’s about the mentality of being with her, giving her full permission in my heart to be as repetitive as she needs to be or just really be her full self without my fighting it. 

Sometimes I fight who she is, my grief at who she might have been and how our life might have been tightening my parenting so that everything is miserable. She can be passionately stubborn and contrary and screamy and whiney. She can also be sparkly and funny and sweet and amazing. I know it isn’t just my parenting that leads to one mode or the other, but when I am more relaxed and playful that certainly helps. When I love her truly and actively delight in who she is, that makes a difference. This morning I am just marveling at how everything in me could shift so much when Carl helped me reframe the situation. That is Son-Rise. It is about changing how we think and how that can ripple through everything instantly. It’s not about forcing ourselves or faking things. It’s about reframing so we can remember our love for our kids, our selves, our life. I am continually amazed at how much hard work it takes to learn not to work so hard at things!

As I write all of this I find it funny that I’m not with her in this moment. I have had moments of interacting, some of which were easy and some of which needed a reminder to myself to stay present and light, not falling back into my old patterns and frustrations.

Grammy and Granddad are visiting this weekend. My tension around Sarah has certainly been present thus far, influencing how I view their time together, so I’m hoping that today and tomorrow can be easier all around. I’ve been aware of how loud Sarah is sometimes and how much she hasn’t responded to us asking her to be quieter or not climb all over her grandparents when they aren’t ready. I do know the girls had fun dancing to music and watching Grammy dance too. Sarah has also enjoyed playing in their van. 

This Tuesday I leave for a week in England for continued Alexander Technique training. I’m not sure if I will write next week or not. Thank you a million times over to all of the people making this trip possible.

September 23

Why is she crying?

Because she is 7, and she is scared of dental work. 

Why is she crying?

Because she is 11, and she is learning to tie her shoes in a brand new way, and it feels too hard. 

Why is she crying?

Because she is 41, and she is frustrated by her children but feels that each failure of theirs is a failure of hers. 

Because parenting is hard. 

Because the cat doesn’t understand the concept of sleeping in. 

Because she is bad at getting her kids to practice their piano homework.

Because she wishes she didn’t express chagrin so often towards her children. 

Because she wishes she didn’t lose her sh*t so often (losing it being on quite a varied scale of intensity). 

Because she is slightly scared each night that her daughter might have another seizure. 

Because she is worried that her daughter who used to be failure-to-thrive is now eating more than her body seems to need. 

Because her daughter ignores her repeatedly. 

Because that daughter has come so far that every moment should be celebrated instead of having any tendril of frustration. 

Because the house is a mess. 

Because she is not as thin as she wants to be. 

Because people will judge her for struggling so frequently. 

Because she wants to be real and honest but also have people see her strength and understand that most of the time she really does have her sh*t together. 

Because she is embarrassed by the sustained love of those who see her at her worst.

Because if only she could do things differently…

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I actually am feeling quite good about things this morning. We have had a lovely morning of snuggles, piano practice, and making Halloween costumes. Yesterday was hard, and I had a hard cry in the bathroom, sifting through the above thoughts. I’ve been noticing how much I second guess myself and judge so many of my decisions up one side and down the other. I’m aiming to do this less often. Noticing is the first step. A few times this week I did succeed at just letting go of the judgement or worry about what I was feeding the children or doing with my time. The framework of the questions and answers came from Amy’s dental appointment to take care of some cavities. It did not go well, and we need to see a pediatric dentist to complete the work. The appointment began with her crying and the dentist perplexedly asking why she was crying. He was baffled. He wasn’t judging it, but he just couldn’t comprehend it. I couldn’t comprehend his confusion. It was so clear to me that of course she was scared and of course she would be crying! At first I was grumpy, but as I sat with the grumps I realized it was a gift of a question paired with my not judging the answer. I didn’t judge Amy at all. So…. what if I didn’t judge Sarah for her struggles? (That is harder. I have an easier time being soft towards crying than I do towards screaming.) What if I didn’t judge my own struggles but saw them as similarly obviously reasonable? (That is harder still but is really truly deeply the same thing as Amy’s situation.)

A few days before Sarah’s final OT appointment, I realized that the method they taught her for tying shoes doesn’t undo as tied shoes should. When you pull the two ends then the bow should magically dissolve. Hers turned into a box knot. Every time. Even when I did it. This is a method also taught via YouTube as some magical way of tying shoes. Except no one seems to realize that you need a grown up to help you undo the resulting knot. What is amazing is that when I explained this to Sarah’s wonderful OT she had me demonstrate the way I tie my shoes (which magically untie when you pull the ends) and she helped Sarah learn it. She helped me with ideas for how to mark Sarah’s laces. Sarah will have to undo her habit, but luckily we caught it before the habit became too entrenched. I taped her laces in specific places to help her with where to grab and where to push through. She only had one time of doing this since OT, and she was frustrated, but that is par for our course. I’m still hopeful in general.

On our way home from OT, Amy started making a list of the best moments (spelled “momits”) of her life. Item number one was Sarah’s last day of OT. Amy was so proud of Sarah. The list did not go beyond item number one.

One day Sarah donned Sc’s purse and said, “I’m the mailman. I’m broughting you a package.” The earnestness just broke my heart. That seems like a sophisticated error and was beyond adorable. 

The girls have had spelling homework this week. It has been wonderful watching them write out their words as I say them. Sarah has done her list perfectly each time (see, she, he, we, feet, …). Amy’s words are harder (these, safe, quote, about, again, also, cube, …) so have been a bit more challenging for her but we have had fun breaking them into easier bits to remember. 

Sarah’s new favorite picture is one of Carl riding a horse. Amy still doesn’t believe it is even him because he looks so different from usual. Sarah now likes to ride the arm of our couch, pretending to be Carl riding a horse. 

Thanks to wonderful suggestions from many of you after last week’s update (this is why it is good to share!), the girls now have their own mixing bowls, measuring cups, and measuring spoons. I intend to get them their own ingredients or have enough of my own that I don’t have to worry about scarcity. They have made many cupcakes and muffins, still with some of my help and input. I’m amazed at how easy it is to make palatable baked goods without a recipe. They aren’t amazing but they are sufficiently good. Sometimes the girls' love of baking leads me to feel out of control because it seems that they are mixing something every time I turn around, but I know in the big picture this is actually wonderful. 

Lots of love to all of you. Why are you feeling however you are feeling? Because you are you in this moment! May we all accept our feelings with the same protective assuredness of their validity with which I accepted Amy’s tears. May we all find such simple clarity in our muddy, complicated lives. Anyone want a muffin?

September 16

We started Sarah’s Oxcarbazepine a week ago in the evening. That is her anti-seizure medication. I’m trying to learn the name of it so I can direct a sitter to give it to her if need be. If I only remember its other name (Trileptal) that isn’t written anywhere on the box or bottle, then that isn’t much help. We think she is handling it ok in terms of side effects, which must be minor if she is experiencing them at all. Today we increase the dose. We have to build up to the desired amount.

Yesterday felt hard. It was the first time this season that I took the girls to gymnastics, and I felt like my presence did the opposite of helping. It seemed like Sarah was purposely trying to annoy me by doing things she knows I don’t want her to do, such as cracking her knuckles and sticking her hand in her mouth. I moved away from her group but stayed in the room. Since her group has two teachers I really think a parent in the room is no longer needed and may be a hindrance. 

We had a couple of parties to attend, and Carl was out of town for the day. I felt like I needed to be with Sarah a bit more, either just wanting to give her some company so she wasn’t eating alone, or to make sure she didn’t do things she shouldn’t. It didn’t always feel easy to go connect with other grown-ups. Sometimes I have plenty of ease and confidence. Sometimes I don’t. Yesterday there were times when I felt lonely, in a way that is unusual for me. It was the loneliness that other parents of kids with special needs describe and I think I am so fortunate to avoid. Sometimes that loneliness can hit like a ton of bricks and it is a mucky load of awfulness because it is me feeling separate and not able to hang out with my friends because of my daughter. That is how it feels. I know it is really because of how I am seeing the situation. Then I judge her and begrudge her. Then I feel like the worst mom, wanting her to be more this and less that. By the end of the second party things were ok again. I connected with my friends. Sarah played independently. Sarah and I had some sweet snuggles and laughs. Still, yesterday was hard. 

Sarah now wants to make pretend food with real ingredients all the time. I do not want this. It was fine when I was ready to supervise. I do not want it all of the time when I am not watching. I do not want to be in the kitchen all of the time. I do not want her using up all of my ingredients so that I won’t have them when I want to make real food. With this and other things, such as being on time, I feel like there is a constant battle within me where I want things to be a certain way, but I judge that and think I should loosen up more, but then feel out of control and frustrated. So I’m frustrated and judgmental and then judging myself as a bad person for my frustration and judgement. 

When an update feels full of difficulty then I am tempted to erase it or edit it, but then I remind myself that I’m probably not the only one who has these moments and maybe all of us can feel less lonely if some of us share the feelings. That is what I love most about some of my favorite writers. So. I’m sure next week will be better. I’m sure today will be better. 

There is one shining note of wonderfulness. This isn’t quite new but I’m noticing it newly and appreciating it more than ever. I realized that one of the girls’ friends really is a friend to Sarah too. Most kids are really Amy’s friends. Sarah doesn’t really play with them nor they with her. But there is one kid who seeks Sarah out! She goes to find her and hang out with her, usually with parallel play. They have an ease together. This feels like a really big and wonderful deal. How are we so lucky to have this person in our lives? Now the only piece I want is for Sarah to feel the same about the other kid and seek her out. Maybe in time. 

Yesterday we sorted through the girls’ pajama drawers. Amy decided to part with a few items. Sarah wanted to keep everything, but she really enjoyed the activity.

September 9

Quite often after I write about something then it changes. Sometimes that makes me want to avoid sharing if things are going really well, but I always share anyway, and sometimes that helps me shift out of whatever was difficult. After my last update, Sarah’s pajama obsession eased a bit. I think it was due to explaining that they would go away for good if she couldn’t handle changing out of them when it was asked of her, but maybe it was also related to the writing. 

Amy’s school was cancelled two days in a row due to the extreme heat of Tuesday and Wednesday. Meanwhile, as I write I am wearing fleece pajamas, slippers, and a bathrobe! I let Sarah stay home on Tuesday because she had a seizure on Monday night. It was similar to her others, in her sleep and lasting about a minute. She was distressed afterwards and her body didn’t work quite right, as usual post-seizure for her. Fortunately, she was able to sleep and didn’t spend hours feeling like she needed to puke. In the morning I woke her at the normal time to see if she wanted to get up and go to school. She said she had a headache and wanted to stay home. I gave her advil, and twenty minutes later she was playing and completely her usual self. I suggested that she was well enough to go to school. She instantly put her hand to her head and belly and reported that they hurt. Since Amy was already going to be home, I let Sarah stay too. On Wednesday she went to school as usual. 

Sarah’s seizures are infrequent, but this last one crossed the line for us in terms of whether or not she should be on anti-seizure meds. We decided it is time. I have the bottle here but we haven’t started quite yet. Even getting the medication from the pharmacy was way more emotional for me than I expected. I cried all the way home. This feels like a really big and disappointing deal. It feels like admitting that she has epilepsy, and it feels scary in terms of the future. I realize that it should seem scarier to not medicate, but if we aren’t medicating then somehow it isn’t that big of a problem. Maybe it’s not. But once every month or two still seems too often, especially with her distress and discomfort after they happen and having no way to know how miserable she/we will be. It is also scary each time waiting for the seizure to stop and praying that it will be short and that I won’t need to give her the emergency medication. 

My uncle sent me an article that is about how parental yelling is ineffective and is a sign of weakness. The article suggests planning ahead more so you can lay out ground rules and also celebrating hugely when your kid does the thing you want. We definitely do big celebrations, but I could probably up my game in that department too. Sometimes when things are how you want them to be it is easy to not notice them as novel. When I first read the article I wanted to yell (ahem) at the author that they didn’t know my kids or my situation or how long the days are of how often I do the planning ahead but that I can’t think of everything.  Given that I wish I didn’t yell, it was actually sort of nice to have someone telling me that it was bad, even if I fought it and resisted it defensively at the same time. As I sit with the author’s points, I find my parenting responses changing at least some of the time. At least once when I wanted to be frustrated at Sarah’s predictable upset about missing Carl, I reminded myself to come into my power instead of feeling weak and helpless. Instead of grumping at her and walking away, I sat and held her on my lap and looked in her eyes. It turned into a sweet moment. It helped that I had the time. It helped that she allowed it, because she doesn’t always. Perhaps it was because she was pretending I was Granddad. I have no idea why it is so important that it be Granddad instead of me holding her, but it is. I don’t do anything different than I do when I am me. It is sort of like drawing a desired piece of clothing on paper. It is all in the imagination.

I’m more acutely aware that the girls are growing up and that the times of them wanting to hang out with me, play with me, read with me, snuggle with me, and sleep in my bed are finite. This helps me enjoy some moments that might otherwise seem arduous or never-ending. So many people counsel parents to enjoy every minute because it goes so fast. The thing is, such counsel rarely gets that intended result on my end. Because parenting is hard!!! The hours can feel long. I am trying my best to enjoy every moment but some of them are too hard! I have to come to this realization of time passing and wanting to cherish the moments on my own, when it feels like I have breathing space to do so. 

Normally I don’t like having the girls help in the kitchen, but that has been shifting. They are more skilled and as long as I am in a relaxed frame of mind about time and mess and output, then it’s all good. One day I gave each girl a mixing bowl and told them they could make whatever they wanted. I would just help with suggestions of possible ingredients and amounts. When I was little I used to bake things without a recipe. My products were never very good, but my obliging parents tried them anyway. Amy’s cake was good. It was a bit dense and had a light sweetness. Sarah’s was fluffy but tasted too much of baking powder. Sarah’s second creation later in the week was much better and we all had two pieces. Their cakes aren’t really very sweet and we haven’t frosted them so I feel ok about treating them more like bread.

Sarah has a new love of calling people on the phone. I tell her what numbers to press and I coach her to keep the phone to her ear. She has called Mom-Mom and Grammy/Granddad. This seems so adorable and grown up.

Yesterday morning Carl and I were convinced that everyone was upstairs and that Amy was still sleeping. As we went to go downstairs we were greeted by a sneaky little Amy who had already been up, making toast with jam for everyone! Breakfast also included a side of pretzels. Her earnest enthusiasm was almost too much to bear. Later in the day she cut the center out of a paper plate and used the center paper to create cat ears to tape to the outer circle. She called her creation Moon Cat. She then made a small Moon Cat first aid kit that contained tape and crayons, in case repairs or color were needed. Sometimes Amy is just so amazingly creative and wonderful my heart hurts at the wonder of her being.

May your baking be tasty and may your heart find such delight that it almost hurts.