April 25: Coming in Close to Big Emotions

I have been experimenting with really coming in close to Sarah when she gets upset. I don’t always have the mental or emotional space within myself to do this, but when I do it seems helpful. I verbally acknowledge what Sarah is feeling and say that those feelings are ok. Sometimes she gives a quiet “ok” that feels like I hit the mark. I nudge her face with my face as if I’m being a cat saying “I love you.” There was one day where I was more playful with her too, hamming up my own concern about the situation and so she vacillated between laughter and tears. 

It always feels good to me when I don’t push Sarah’s intense screamy feelings away. There certainly were moments where I realized my open attention was shrinking and I called Carl in for reinforcement. What has been crystal clear is that giving myself time alone to feel my feelings and shed tears if needed really helps me be who I want to be with Sarah and Amy. It is as if I have a new palette of responses available and clearer insight without effort. The effort is in noticing when my own load is accumulating and clearing that.

All of that said, I confess to an under-layer of hoping that eventually Sarah will have gotten all of her screams out and will achieve a new level of calm flexibility. When she was very young she hated taking medicine via a syringe. After a long and intense crying session about it, something shifted and she has been a pro ever since, taking any medicine easily. 

Amy has been having feelings too, mainly pertaining to school. She has handled this whole past year so resiliently and gracefully, but I imagine it has been harder for her than we maybe realized. Usually she is someone who loves school, but with her current hybrid situation of in-person school two days a week and fully virtual school 3 days a week, she doesn’t look forward to her school week. The in-person days are a blend of doing the usual virtual work and doing some things live as a group, which means it takes her longer to do the virtual assignments. This feels like a burden and she compares her speed to those around her who finish sooner. When I offer the option of going all virtual again she adamantly refuses. 

Amy's school now requires her to attend work-time zooms on her virtual days. This means she has to wait to do her work but doesn’t feel connected to anyone because they are all doing their individual assignments. I am frustrated that the school thinks this is a good solution. I wonder if there are other kids similarly miserable about the new zooms. Amy has never been one to dread the end of a weekend and now she does. I can only hope that the next school year will be better, but I have begun to realize it may not be five day in-person school. 

We are looking forward to an outdoor visit with Grandma, Grandpa, Sonia, and Sonia’s partner today. It is exciting to have warmer weather and to have more completely vaccinated family members. 

I ordered an apron that looks like the one Tiny Chef wears. Sarah likes to wear it while cooking mush, and she calls everything she makes mush, even if it is soy milk with frozen blueberries heated on the stove. Meanwhile, she is now wearing her new musical note shirt custom made by Grandma. The color difference between her old shirt and the new one is striking. They are made with identical fabric but the one she has worn 24/7 for umpteen weeks has yellowed. Hopefully this new shirt will allow me to wash her garments more frequently and with less upset.

May you all have space and a kind ear for your feelings.

April 18: A Seizure and A Notable Moment of Calm

Last Sunday night, Sarah had the first seizure she has had since being on anti-seizure medication. The first seizure in roughly two years. It lasted less than a minute and she was mostly herself afterwards except for having a headache. Her neurologist increased the dose of medication so I’m hopeful things are back under control. Many people asked how I knew it was happening. I honestly have no idea what makes me go from sleeping soundly to running into her room as fast as I can. I don’t know how I hear the rhythmic whimpers, but I do and I know what they mean. In the past it would take me a long time to settle back to sleep and the next few nights I would be on edge, as if my staying awake would somehow protect her. This time I didn’t fight my initial surge of adrenaline and didn’t try to fall asleep, which allowed me to calm myself more quickly and actually sleep. The next day I spent more time processing the emotions and fears from past seizures and was not on edge at all when it was time for bed. I reminded myself that even without medication she never had seizures two nights in a row and that when she has them they are short and she probably won’t die from one. I know there isn’t a guarantee about that, but it helped to talk myself through some rational points of view. So, after a huge adrenaline rush to start our week, we were all well and back to normal in short order.

The ring tone on my phone is the Tiny Chef singing, “If you’re happy and you know it, heat your oven to 375 degrees!” Sarah loves this and loves the picture on my t-shirt of the Tiny Chef holding a bowl of what Sarah labels mush. She loves Goodnight Moon and the bowl full of mush mentioned in the book, so she now likes to pretend to be the Tiny Chef making mush while singing about heating her oven to 375 degrees. 

I’ve been working on a book about our Sarah-Rise program and sometimes Amy reads over my shoulder. She delights in the vignette’s from when she and Sarah were much younger. Last night she said reading my writing was like magic because it made her want to go play with Sarah. She was so excited to think about the new things they could do together. I’ve been slightly concerned about how Amy would feel about the book since it is so Sarah focused, so this was a nice moment to remind me that maybe it is all ok. Maybe even better than ok. 

We have had some small but notable moments of success with saying “no” less often and with verbally acknowledging what Sarah is feeling. One reader recommended saying “I hear that you want… I hear that you are feeling…” and that has been helpful. Sarah was extremely impatient for Anna to arrive one morning and the fact that she had two minutes more to wait was intolerable. Since Amy was on a zoom call I was sticking closer to Sarah than usual to keep her quieter. Sarah and I stood at the front door together, her body bursting with desperation. I said, “I hear that you really want Anna here now. I hear that you are having a hard time waiting.” While we have tried saying similar things in the past, this specific language in this specific moment seemed to help. She rested her forehead against my chest and calmed while I rubbed her neck. 

I have also had times when I needed to do something and couldn’t be with Sarah when she was upset, but I told her that I knew how she was feeling and she could keep expressing it. I told her I wasn’t ignoring her but that I needed to do whatever I needed to do. That seemed to help her and I felt better too. Carl had a successful moment last night talking with Sarah about different feelings and how sometimes people just want to be alone. He reassured her that she could go into Amy’s room later but that Amy wanted to be alone at that moment. She seemed to understand maybe a bit more than she has at other times. 

Yesterday Carl and the girls went for a walk in the neighborhood. They came across an ancient relic: a payphone. Amy inquired as to what it was and was perplexed as Carl explained. It just didn’t make any sense to her with almost everyone now having a cell phone. What do you mean you need a quarter to make a call? What if you don’t have a quarter? It is amazing how quickly technology changes. 

I hope you are all feeling heard, whether or not you have a quarter.

April 11: Thinking Around "No"

I have started reading a book called The Yes Brain by Daniel Siegel and Tina Payne Bryson. It has inspired me to think differently about Sarah and how to help her/us. It has become increasingly obvious that she really has very little capacity to hear “no” without going into full-stress fight mode. We need to figure out a way to widen that capacity and ways for us to not actually use “no” in our speaking. Last night we had a tiny miracle of a moment at bedtime. When I said it was time to get ready for bed she said she wanted to do Zwift, which is her stationary biking program. Somehow I managed to redirect towards hanging out together in her room as something that we both loved. I promised that she could squish my nose, which is normally not something I enjoy or allow. It was a peaceful moment instead of turning into a fight. 

I have also been pointing out to Sarah that she is actually good at waiting and sometimes at hearing the word no. She has a sense of herself as not being good at waiting, but really she is phenomenally patient in many situations. I am hoping that talking about waiting and the word no when the moments are not fraught will help her brain slightly increase its ability to tolerate such concepts.

Anna created more wonderful ways to help Sarah with math. They used a small drawing of a house to be the 1 that is carried in addition. They also made flashcards with Sarah, adding matching stickers to the front and back of a card so that maybe Sarah can associate the stickers with the number problems.  I love how Anna is harnessing the strengths of Sarah’s mind and how it works to help Sarah with the areas that have usually been so challenging. 

Amy got her braces off! Now she has to wear a retainer all the time except when she eats, but she is already a pro after getting past the first two days of discomfort.

Carl and Sarah assembled a basketball hoop yesterday and then Amy joined them for a game of Witchball. Playing a game of Witch is the same as Horse or Pig, but you are spelling Witch instead. 

I got my second dose of the Moderna vaccine on Friday, and yesterday I was definitely more tired than usual, but I didn’t have any other adverse effects. 

Lots of love to all of you.

April 4: Snow, Easter, and Being in Your Own Category

The April Fool’s joke for us was a notable amount of snow. We made a huge snow mouse that is taller than the kids, and Sarah enjoyed rubbing noses with it. Carl also got to go cross-country skiing. 

Yesterday Amy orchestrated a talent show and asked me to be the judge. I hate judging among loved ones. Carl suggested there could be different categories so that everyone could win. That garnered an Amy-Eye-Roll but did feel like the right answer. Carl did a fabulous juggling and joke-telling act as his overly confident, not always so talented alter-ego Joey. Amy did a round of cartwheels. I’m jealous of her speed and agility. I miss the days when I could cartwheel all over the place. Sarah jumped off the sofa onto padding and pretended to be a crying baby. You can see that it was easy to sort them into different winning categories.

Sarah loves pretending to be the Goodnight Moon house. She holds her hands above her head to form the roof. She also loves it when I use a small stuffed animal mouse to do Hickory Dickory Dock. The mouse runs up the Sarah-clock, the clock always strikes 4 and we sing that the mouse runs to Anna’s car door.  

Easter morning started not-yet-bright and early. It quickly turned to upset as Sarah was distraught that there were no musical note eggs. She also couldn’t find her basket, but she is notoriously unadept at looking for things. After a tense moment we all regrouped. Amy paused her chocolate egg and jelly bean hunt so that there would be some left for Sarah to find. Then she helped Sarah find her basket. All is now well. Much chocolate has been consumed and not quite so much real food, at least on Sarah’s part. At one point she whined “I’m not hungry” when we said she could finish her breakfast, as she unwrapped and ate a chocolate egg. I can totally relate. 

In the two days after I wrote my update last Sunday I learned of two more people that I knew who had died. As with the first two, I hardly knew them, and yet it hit me hard. One of them was another college classmate. Another was a massage school graduate whom I put my hands on for Alexander Technique teaching.  So in 8 days 4 people that I knew died, two of them college classmates. That is just too much. I felt rather frozen and unable to focus on the tasks at hand. Yet I know I am fortunate to be on the sidelines and that after a few days of grieving I am basically back to normal. What breaks my heart is knowing the people whose lives do not so quickly return to normal. So many people have lost a parent or spouse. You might think this would mean I wouldn’t have any upsets between me and my kids because I would feel more keenly the preciousness of every moment. Unfortunately, that hasn’t been the case. If anything I’ve had less room to handle the usual moments. I’m trying to remember to hold everything gently. What I often want is to just have everything be quiet and have time to myself. This is not a knew desire but it feels stronger in the wake of death. 

May you be judged in a category by yourself so you always win, but be sure to give yourself enough leeway that it is a kind category.