January 21

“If you stick the pencil in your ear I won’t get you the polka dot fabric when we get home.” 

That is true. For all of you! 

Originally I said it to Sarah during her piano lesson. 

There have been a small handful of times this week when I have really yelled at Sarah (though not about the pencil in the ear). When I say something calmly and normally 5 times and get no response then sometimes I escalate to yelling and then Sarah takes heed. I am so frustrated about this. She listens but then is usually also upset so while she is moving to do what I said she is slower than if she was happily moving. I think what is the most frustrating is that sometimes I escalate when the situation doesn’t warrant that level of underlying panic/anger on my part. In fact, is there ever a time it is warranted unless it is to catch a plane or save a life? I don’t know. Probably not. My goal will be to make my request calmly 10 times before losing my %#*(&! I will also aim to be more creative with my requests.

School mornings have been challenging. Often it seems that if I prompt Sarah to keep moving that is the very button to make her turn to look at her toes or seams and get rather lost in them. But if I don’t prompt her then she also won’t be moving towards the next step of getting ready. Carl did a beautifully amazing job on Friday with keeping her moving and creatively prompting her and keeping her equilibrium in tact. 

It is often refreshing and surprising when I hear people admit to not liking a certain thing that I feel like I am supposed to like. Here is my confession: I don’t enjoy having my kids help in the kitchen. I would prefer to work alone! But I feel like I should let them help and encourage it because how else will they learn to cook? Also, sometimes I don’t want to be a patient and creative parent. Sometimes I want to be left the #*(Y@* alone.  Based on the tone of this update you can probably guess what kind of a morning we are having. Admitting to wanting to be alone actually helps me breath more and feel like I’m ready to go spend time with my kids. 

In other news, Amy has decided that my snake hat makes the perfect fire-fighter hose.

We have been making Valentines lately and the girls have each made one for their dental hygienist completely of their own initiative. That was the first card each of them made. This is probably due to the fact that their next dental cleaning is on Valentine’s Day.

Amy did an amazing job in her swim lesson. Both girls did well, but I was in awe of Amy when she jumped in independently, floated, and swam gently on her back to the wall. It was so peaceful and calm. There wasn’t the same fear as there was the first time she did it. She was so poised and confident. 

I have changed my approach to getting the girls (especially Amy) to help clean things. All the credit goes to how my mom helped me clean my room when I was younger. I tell them to find something of a certain color to put away. Or to find the stuffed animals. Given that Amy likes seek and find challenges, so far this approach is working well.

Anywho, here’s to recognizing and owning where we are so that we may be freer to move on. 

January 14

Sunday night as I made dinner I could hear the girls reading Elephant and Piggie books together. I didn’t get a picture because I didn’t want to interrupt the moment. When they needed a new book they pretended to go to the library.

When Sarah came home from school Monday she went upstairs. A few minutes later I heard her ask me if I would help her get the iPad. I said yes and asked if she was upstairs. She said “no, I’m downstairs,” because by that point she was. I called playfully “Owl! Are you upstairs?” With great glee she scampered upstairs as we laughed together. I love that we can have what feels like an inside joke based on a shared love of Owl at Home by Arnold Lobel.

Monday’s piano lesson was filled with adorableness. For some of the time the girls were together on the bench, pausing for snuggles and sad-panda play. Sarah asked Amy to be a sad panda and Amy nuzzled her head into Sarah’s chest while making sad panda noises, just as Carl and I do. I love that this play now includes Amy.

Often when I suggest practicing the piano I am met with resistance. This week I tried just playing the album that goes with the piano book. I didn’t say anything. Of their own volition they did practice some things and overall thoroughly enjoyed the music. Now they are able to play the album without my help and when Sarah came home from school one day she unexpectedly went immediately to the album and then sat at the piano. ???!!! That explains my socks flying past your window.

At bedtime on Tuesday night Amy tucked Sarah in with a panda stuffed animal and a kiss.

Amy had a questionnaire to fill out for school that included a question about whom she admired the most. Her answer? Sarah. 

Melt my heart and call me Teary!

Yesterday I yelled (first spelled “yellied” which is somehow hilarious) at Sarah for touching the remote during Amy’s pick because then it messed up Amy’s show. I realized shortly thereafter that I could have lightly said “whoops!” instead because I don’t think Sarah messed it up on purpose. As Sarah and I snuggled,  I apologized and explained my new thinking. I explained it to Amy too. A bit later, Amy told Sarah she was sorry for yelling at her and she gave her a kiss and said “I love you.” As I was about to berate myself for the yelling, I realized that with that too I could perhaps lightly say “whoops!” Whoops! I didn’t mean to yelly! 

Friday morning I got stuck in the mud. Quite literally. I have never experienced that before and I hope not to experience it again. I had parked in our back yard the night before to charge the car but the ground was soft and the constant rain did not improve the situation. Still, I didn’t expect to get stuck. The girls were off at school and I thought Carl was on his way to work. I attempted to leave. Nope. Just as I was realizing my predicament and wondering what to do, I heard a gentle tapping on the window. There was Carl! He hadn’t left for work after all and happened notice my trouble. He worked diligently with bricks and rocks to help my wheels get traction and after many minutes I was free. Late that night when I returned home (and didn’t need to park in the back yard) I found him creating small brick roads in the tire tracks, filling in the ruts with dirt and bricks. This was in the dark, in the cold, in the sleet. Sometimes there is nothing better than a gentle tap on the window when you are stuck, literally or metaphorically, and someone who knows how to build a road for you. I really felt the wonderfulness of having a partner who came to my rescue even though it made him late for work. He didn’t yellie at me for getting stuck (of course not, it’s not how he does things). He helped me not yellie at myself. In essence it was a “whoops! Let’s fix this” moment. I so much want to continue learning from Carl about how to calmly deal with adversity. 

If you are getting stuck in any metaphorical or real mud, remember to go slow. Don’t spin your wheels. And if a little tap on the window isn’t forthcoming, just reach out and ask for help. Sometimes window tappers need to be alerted to the situation, but then they are often more than willing to jump in to your mud with bricks and rocks.

Love, bricks, snuggles, and gentle “whoops!” when you need them.

January 7

Carl and Sarah played No Stress Chess. It is designed to teach you the rules of chess as you play without it feeling difficult. They played half a game before she wanted to do something else.

We have had a wonderful time with The Cat Game. It claims to be for people age 16 and up, but we altered the rules and just use the pieces to enjoy playing together but not in any competitive way. It is basically Pictionary but you have to use a picture of a cat (they provide many options) on which to base your drawing. We have had great fun and Sarah has been quite engaged with circling the cats and drawing tears and tissue boxes as if they are sad cats. I was proud of one creation because both girls guessed right away that it was cats playing basketball. Yesterday Amy and I worked together to depict Darth Vader.

Sarah’s new favorite book is I Am (Not) Scared by Anna Kang. She laughs so much as she reads it out loud that she can barely get her words out. I love this!

The girls continue to enjoy being sad crayons, and sometimes Amy is a happy crayon.

Whenever I am truly sad then Sarah is the sweetest, most concerned, most present little individual. When Amy is truly sad then Sarah gets in her face and laughs while loudly saying “meow meow meow!” or “gaw!” We tell Sarah repeatedly not to do this but to no avail. Yesterday it happened again after Sarah either accidentally or on purpose caused Amy’s head to bump into a wall twice. Carl had been about to take the girls out to do an errand and get a treat. We changed the plan in response to Sarah’s behavior so she stayed home with me while Carl and Amy went out. This was after many minutes of Carl talking to a crying Sarah about why she lost the trip. It was disappointing for all of us but I’m hoping it got Sarah’s attention. It was really beautiful overhearing Carl’s patient and loving way of handling the whole situation. Sarah and I did have a good time snuggling and reading on our own. Later we all had a good time hanging out in the family room together making cat drawings. Carl and the girls assembled a puzzle together and that was also beautiful to witness.

For dinner last night the girls tried avocado toast and quiche. I was surprised by how much they liked the avocado toast and how little they liked the quiche.  

Sarah seemed to do an extra good job at gymnastics yesterday morning in terms of her attentiveness to the teachers as they explained the routines. The only frustrating thing was the time mismanagement that meant Sarah (and everyone in her group) only got one turn on the zipline. She handled it well and didn’t actually seem to mind. I minded on her behalf though! 

There was no school or swimming on Friday due to the cold. It is still super cold! 

I hope you are all well and warm and that your crayons are happy.

December 31

We had a wonderful trip to Philly and Delaware to visit lots of family. Here are some other highlights of our time…

For part of our time we were in a hotel and the girls loved the pool and the elevators. This was a much larger hotel than we have ever been in, with more opportunities to get lost on the way to one’s room (especially if the signs when exiting the elevator conflicted and one of them was wrong!). This was an excellent way to allow them to practice their growing independence. Carl used post-its to fix the erroneous sign.

During some playtime with Mom-Mom, Sarah said, “I’m doctor Sarah. You must be Mom-Mom.” 

We went for a walk and Amy brought her drawing materials so she could document what she saw, pausing every two minutes to create a new picture.

Mom-Mom served turkey soup for one of our meals. Amy declared she wouldn’t eat it and that she didn’t like turkey soup. She drew a picture of soup with a big x through it. Then she ate the soup and loved it. She crumpled the picture and drew a new picture for Mom-Mom that said she loved soup.

Amy sang a song to Mom-Mom’s big lion stuffed animal. She sang about being friends forever, even when they are teenagers and when they die.

Both girls said “thank you” and “please” easily and often of their own volition.

Sarah told Mom-Mom that she liked the painting in Mom-Mom’s room and that she especially liked the trees in the painting.

Amy started learning multiplication with Mom-Mom.

The girls had many Conversations with Mom-Mom, which means hanging out in Mom-Mom’s room and playing and talking. This time they also expanded to having Conversations with Pop-Pop.

Carl and Mom-Mom played some duets. Amy danced and Sarah sang along as best she could. 

We listened to a ton of Boynton music on our drives and Sarah sang along or attempted to do so with many more songs than usual.

Carl helped Amy do an experiment with the water pipes in our hotel room so she could understand why the temperature might not always match the handle that was turned.

Carl and the girls spent hours assembling a lego robot cat that can be programmed to purr, wiggle whiskers, hiss, and fart.

Amy adopted two new stuffed animal cats. Sarah received three stuffed animal pandas!

Sarah added to her sad creature repertoire after reading The Day the Crayons Quit. She now pretends to be a sad crayon.

We attempted to go to a playground on a very cold day. I told the girls to wear their snow pants and super snow mittens. There were protests. My suggestions were not followed. After one minute at the playground Sarah was crying to go home. I took her to the car to put on snow gear. By the time she was ready, Amy was wanting to go home. I got her snow gear on her. Then both girls were crying to go home. I maintain that my first suggestion was right and that if they had listened to me they might have lasted for a good ten minutes on the playground! 

Granddad made a train table and the girls loved watching it and finding the different people and animals spread throughout. 

Grammy made seek-and-find lists regarding the train table and the tree. Amy loved them and did them all so quickly that Grammy had to make more!

On our last morning, it snowed! The girls bundled appropriately and had a wonderful time playing. Since Grammy and Granddad live on a cul-de-sac, that gave the girls a huge area for play. Amy pretended to be a snow plow, snaking on her belly across the street and on the sidewalks.

We celebrated the birthdays of Granddad and great-uncle B. Sarah expanded her well-wishes to her other uncle B. whose birthday was in November. It was noted by the uncles that Sarah was much more talkative and connected than they had previously witnessed. Sometimes big jumps in Sarah’s abilities are more easily observed by those who don’t see her often.

Sarah has been pining for a pair of overalls that Grandma made for her when she was much younger. Grandma is going to make a new pair but the fabric will be different because the original is no longer available. We took the girls to a fabric store and Sarah picked red fabric with white dots and Snoopy. We got extra fabric so while I mailed some to Grandma, Granddad and Carl used the rest to make Sarah a very basic pair of pants. She loves them and this buys us time while Grandma makes the overalls. 

I got a baby monitor so we can keep an ear on Sarah when she is in bed and we are still awake. 

There were still many times when I flew out of bed with my heart racing if Sarah made the slightest sound in her sleep. Carl and I talked for a long time about parenting and fears. It helps that he is not panicked in the same way. I realized that I have been terrified that a seizure would equal death but that isn’t likely to be the case. I still don’t want it to happen again and the thought that it might still scares me, but I am more at ease. We talked through the different moments when each of us has been scared for Sarah’s life. They are different moments. That was interesting to realize. While we did stay up quite late with this conversation, it has helped me get much better sleep overall.

Naps. Naps for all.

I hope you all had a wonderful week.

December 24

“I love my mom so much!” Sarah told her sitter Tuesday night before bed. This is not a usual utterance to come from her. A few hours later she had a seizure, the first since she was 8 weeks old. That made her statement all the more poignant. Later, as she recovered from the seizure and sat up suddenly to tell us “I’m back,” it felt like the most perfect moment in true Sarah style. 

I never thought I would pray so hard so often through Sarah’s life from birth through now. There have been at least four times of being deeply scared and praying hard. And that isn’t even counting when she had pneumonia or a concussion!

When you get home from the hospital after having a seizure, you and your sister may be allowed to have a hot dog dinner in mom and dad’s bed while watching a show on an iPad. 

I decided to keep Sarah home on Thursday so she could rest and I do think that was important. I just didn’t realize how much I needed to be with her for my own recovery. My cells needed to be reassured of her presence and well-being. We slept and rested all day. 

Now, for some more normal moments from the week....At one point Sarah was upset about something, and Amy wanted to help so she set up the Cat in the Hat I Can Do That game that Sarah loves. I was busy and so they decided not to wait for me to play! They were playing together all on their own! They have played games many times before but a grown-up has been there to help. 

When Sarah came home from school Tuesday afternoon, Olivia (our cat) was by the door. Sarah said hello to her and started petting her and said Olivia was glad she was home. 

How Amy sees herself in her imagination, a self portrait: a black cat with a pink nose and long eye lashes and a pink smile.

Amy can tie her shoes!!

I know now that Sarah doesn’t like clothes that get staticky. I don’t remember her articulating this in the past but twice this week she has talked about it! 

We celebrated Christmas early because of our travel plans and we set a new record for early. Last year it was 4:45. This year the girls came in to our room at 4:15am! We made them wait until 5 before we actually got out of bed. I am so grateful that Christmas could be normal. The possibility that it wouldn’t be flashed before my eyes after the seizure, and as I write this I realize how little guarantee there is going forward. Part of me could be scared all the time and yet that is no way to live. Little by little the fear subsides. The fact that Sarah and I get grumpy at each other again seems like a very good sign of things returning to normal!

Normal. Hmm. Or not quite yet. I wrote the above words last night right before Sarah puked voluminously in her sleep. Amazingly enough I heard the beginning warning in time to say “Sarah!” which alerted Carl. As I fumbled for a light switch Carl rushed to her side. I lobbed a clump of washcloths towards her head and it landed just in time for Carl to prevent a more involved clean-up operation. As it was we went through all of the towels because this puking happened twice. What I hadn’t anticipated was how high my adrenaline would spike and how terrified I was to fall asleep afterwards. Our hotel room has a separate room for the bedroom and the girls are in the living room pull-out couch. I wanted to sleep on the floor next to Sarah or to move Amy into my spot so I could take hers. Carl pointed out that then I would wake at every slight movement from Sarah. So I stayed in my bed and eventually sleep won against my fear and vigilance. Reasoning that even if she pukes or has a seizure she won’t die doesn’t seem to help my fear. So I’m not back to normal. I don’t know if or when I will be. What is normal anyway? This may be my new normal for a while. 

Lots of love to all of you. Your love and support are incredibly meaningful.

December 17

I so appreciate your validation and support of me as a parent and your assurances that I’m a good one. It helps. And most of the time I may even agree that I’m a good parent. But. (My mom can attest that I am extremely skilled in “yes, but…”) There are the times that no one or a very few people witness when I scream and yell so loudly and longly at Sarah that it horrifies me. Almost none of you see that. I seem so nice so much of the time especially to grown ups. But I am truly horrified by myself sometimes. Friday night I was suggesting that Sarah put lotion on her legs because she seemed itchy and swimming may have made her skin even more dry. Before I finished speaking she was whining and slightly yelling in protest. I was calm. I was calm. I was calm. And then I really wasn’t. I hate not being allowed to speak. I hate feeling powerless. It was as if I was watching Mom-Hyde and couldn’t stop the anger even as I realized how absurd it was to be screaming at her to stop screaming. It was as if all the frustration and pain and rage of all my parenting moments for nearly 11 years were compounded and coming barreling out of me in that moment. And then I felt embarrassed and awful. The worst is knowing that it will most likely happen again. And then the extra worse is how un-Son-Risey this is. I am supposed to be able to think my way through this and change, truly change so that I don’t do that anymore. Right now I feel like anything I try to change ends up rebounding worse than before. I feel like a hypocrite for how calm and nurturing I can be with my work, how centered and present with my clients and students, and then how completely uncentered I can be as a parent. I know. I know. I have many many many wonderful and calm parenting moments. And the screaming moments probably only last 2 minutes. But the repercussions in me last so much longer and overshadow the rest. I feel like I need to go into the woods and scream and yell for hours, though my throat certainly couldn’t handle it because it is rough and scratchy after 2 minutes. I feel like I ought to be able to apply all of my principles from work to my parenting but that is so much harder. If my students started whining and yelling in protest about my ideas I would probably be a lot less nice to them too. So I guess the real confession of this paragraph is that I am even more deeply human and imperfect than you may imagine. In two minute increments. Maybe you all have your moments too that almost no one sees. That is the  thing. No one talks about these moments so we end up thinking we are the only ones. That is partly why I share so that maybe all of us two-minute catastrophes can come together.

After writing the above I did think more about why I yell and what I might be able to change. I practiced imagining Sarah whining or yelling and practiced letting go of my tension. The next day I was able to let go of some of my tension in the moment for several different moments. And then I wasn’t. But I do feel hopeful that maybe if I practice more when I’m by myself I will get more skilled. I often suggest that my students practice extending their arm and thumb when they aren’t giving a massage to make sure they can do that part comfortably because if they can’t do it comfortably when they aren’t giving a massage then how can they do it when they are?

When I was younger I used to play group solitaire with my best friends and their family, each of us having our own deck but using communal piles in the middle. This was a fast-paced game that would have piles completed before I even knew what had happened. I would often have moments where I waved my hands and just wanted everything to stop. I feel this way about parenting sometimes. If I could only wave my hands and say “stop” and have the game pause so that I could slowly understand what is going on and play my cards, but the pace outpaces me and thus the yelling before I seem to know what has happened. So I will practice slowly, getting ever more familiar with my own deck.

Swim lessons went extremely well. This time, at the teacher’s suggestion, Amy jumped in the pool, turned over, and floated all while the teacher was still out of the pool. I could see the fear in Amy's eyes but she did it! She was so brave and she did it. She really is capable of saving her own life if she were to fall into water. Sarah’s body was calmer than in the past for her floating practice, though she still doesn’t want the teacher to let go. I also noticed how I could smile and enjoy Sarah’s spunky cheeky rebelliousness when she was not following what the teacher said. It is so much easier when it isn’t my instructions that she ignores!

Thursday the girls both had two hour delays for school due to snow. I don’t remember this ever happening last year. Usually one of them had a delay or closure but the other didn’t and if Sarah’s Catholic school was on time then Amy and I would drive her because her bus is a public school bus and I didn’t want her to be two hours late. This time I had a delay too so it was all easy and relaxed and fun. We all got bundled and enjoyed the snow. 

I feel that there is some profound lesson in my words “this time I had a delay too and it was all easy.”  Hmm. To be pondered and expanded in my life as a whole when possible.

My quandary as we look ahead is how to deal with Christmas eve. Amy wants to sleep under the tree in the hopes that she will wake to see Santa. Umm. Does she still have her superhuman sleeping ability from years past when we could have the lights on and Sarah could be screaming and Amy would sleep through it all?? If so then we don’t have a problem. But if she wakes up?? She does know that some presents come from us so I suppose we could always just say Santa hadn’t come yet or had already come and gone or that we were up because we thought we heard Santa too. 

December 10

I’ve been struggling a bit lately with my parenting. I’ve had these times before and they are no fun. I hate feeling like everyone would be better off if I just hired a sitter to take my place. I feel like every time I say something it is either ignored or the opposite is willfully done. I am not handling it well.  I know this is what kids do but sometimes I’m able to handle it relatively easily or with grumps but quick recovery. This week I feel like I’m just mad at the girls every other minute and feeling like a bad parent and wanting to throw half of our belongings in a dumpster. And then I also have moments of feeling that all is well, all is right with the world, I’m so blessed, etc. Those moments are usually when I am by myself or working. These struggly feelings seem like the underside of a rock that I’d rather stayed against the ground but somehow my rock got flipped upside down.

There have still been wonderful moments mixed in with the frustrations. Sarah participated in her first Christmas concert. I could barely see her due to where she was and how the seating was arranged. But…. when I did see her…. she was singing! Up there with so many other students! Singing happily and dancing a bit! When we saw that she was singing Carl and I turned to each other with surprised wonder and perhaps some tears sitting in our eyes. Of course we hear her singing around the house and with Amy, but it is a totally different and bigger deal to sing up in front of a huge group of people, with a group of people, joyfully. And she waited patiently for a loooooong time while her class was not singing but was staying in front of the stage. Not that I could really see this, but I think we would have noticed her teacher intervening or we would have heard her if she wasn’t waiting patiently. Another wonderful thing was that the timing worked for Grandma and Grandpa to be there. After the concert when I brought Sarah up, her face was lit up with happiness as she gave her grandparents and Carl huge hugs. The girls were happy to eat gingerbread cookies on the drive home and change into new pajamas before a very late bedtime.

The next day Amy had her concert. It also was wonderful and I could see her the whole time she was on stage. For Sarah to be quiet during the concert also meant letting her play with her phone the whole time, as usual. She really just wants to go up and down the aisles or stairs. It was a striking contrast to her patient attendance during her own concert. Maybe I need to hire her teacher to come be me at home. Leaving was a little difficult, as usual, because Sarah didn’t want to leave the stairs she was enjoying. I roughly explained that girls who left easily got to eat gingerbread cookies on the way home and girls who didn’t leave easily didn’t. I felt mean and graceless as a parent, embarrassed to be observed by other parents, but desperate to be on our way home. 

Yesterday I had a really amazing Alexander class, taught by my AT teacher. I learned, again, to be slower and wait longer for the outcome I desire. As I read what I wrote about my parenting I’m thinking that a lot of my strife comes from wanting something to happen right NOW! Sometimes it needs to, but what if the other times I could just allow even one more minute for things to shift? Perhaps so much easier said than done, but at least I have an intention and hopefully that will make a difference. 

This is the first week in ages that I’ve gotten a good night of sleep every night. I still get headaches but they are extremely mild thanks to Verapamil. I’m still on my quest to find what I might do that contributes to my headaches so I’m being vigilant about noticing when I tighten my jaw or tongue, which I do ALL the time. Letting that tension go seems to help the whispers of headaches abate. I doubt that is the whole deal, but at least it is something I can undo. 

In contrast to my struggles, last Sunday Carl took the girls to Ikea and was startled by how easy it was compared to when they were younger. We now have a desk (courtesy of Grandma and Grandpa) in the SR room and a pink chair courtesy of Ikea. As G. so perfectly put it, the SR room is growing up. We have art on the walls, a bookcase full of books, and bins full of dress-ups. We no longer need to keep things out of reach or keep the room so simple. As soon as the desk was in place with the chair, Sarah picked a book and sat there reading. 

Over the past few weeks we have been playing “I Can Do That” which is a Cat-in-the-Hat game involving picking three cards that are to be read together and then you do the task described on the cards. Sarah reads her cards and does the tasks with little assistance required. She even came upstairs recently to find me and ask me to play the game with her. This is really amazing and not to be sneezed at. Sarah’s favorite thing is to get a “stop” card and moan about it, just as I make a huge deal when I get a “stop” card.

Sarah notices when the humidifier is empty and fills it. Sunday mornings she sometimes goes outside to get the newspaper for Carl without him even asking for assistance. In so many little ways Sarah is getting more capable, responsible, and grown up. 

I have noticed increased ease, speed, and flexibility with language when Sarah is connected to us. When she is stuck on wanting a certain thing and her whining to get it and can’t remember what I said a second ago, then that is frustrating and I want to just push my head into a wall. When Carl pretends to be a T-rex going after her bagel and she quickly says she is scared of the T-Rex then I’m impressed with her facility. 

Much love to you all.