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.

March 28: Grief, Magic, and Math

The week has felt overshadowed by grief and loss. I know there has been an abundance of good, but I have also needed the time to just feel sad and sluggish. A college classmate died from brain cancer. A few months ago she was as well as you or I, and now she is gone. I hardly knew her and yet the grief feels deep. It hits rather close to home as I glimpse my own mortality and think of how those closest to her are feeling. The love and support pouring towards her and her family through her journey and passing were incredibly beautiful, making it all the more poignant. Then the mother of a high school friend died suddenly. I didn’t know her well either, but the friend and I were both faculty kids and her father was my teacher, so I feel the sadness on their behalf. 

This morning when I was out for a short time, Sarah was missing me greatly. When Carl sent a text explaining her sadness I put a heart on it. She saw the heart and said her heart was cracked into pieces. Oh my goodness gracious. When I got home she gave me a big hug and did a few rounds of some of our customary verbal exchanges and then she asked me to get her set up to play Mario with Amy! It did warm my heart to know she missed me because so often we have small clashes with each other. 

Highlights from the week...Olivia caught a mouse and Sarah helped set it free, with help from Anna and Carl. Amy helped me with cat sitting for a friend and Amy was completely enamored with one of the cats, tearfully tearing herself away when it was time for us to leave. We often dressed as witches to do this job, calling it Care of Magical Creatures class. Amy flew on her broom to get there. 

Anna did amazing math work with Sarah. Somehow Sarah’s mind can be so much more clear and focused on math when Anna is around. She does things I didn’t think she could do. Anna is brilliant at coming up with new ways of harnessing Sarah’s abilities and helping her make connections. For instance, to help Sarah understand some of how addition works, Anna used symbols that Sarah loves, such as mice and musical notes. If you have 50 plus a musical note then you would write it as equalling 5musicalnote. 

Yesterday the kids dyed Easter eggs. It was mostly easy and fun, with the biggest difficulty being Sarah waiting for the eggs to be ready to dye and my impatience with her impatience. 

For all of the hard times, let me also always remember the moments when I hear the door close and realize the girls are wanting to be on their own to play games, as happened yesterday. There are so many wonderfully easy times but those can be hard to remember in our moments of struggle. 

May you have space and support for all of your feelings.

March 21: Birthdays and The Great Sorts of 2021

When we began the Great Stuffed Animal Sort of 2021, Sarah wasn’t interested because she wanted to play basketball. Carl had been talking about maybe getting a basketball hoop and she was stuck on that idea. So, Carl propped our hula hoop over Sarah’s radiator and the girls tossed their stuffed animals through the hoop to help them decide which to keep and which to give away. If an animal was designated as a donation they threw it into a large bag I was holding. They filled the bag!

In past years whenever we would attempt to reduce the number of books in the house, it was nearly impossible. Sarah always wanted to keep everything. This year it seems like something has really shifted for her, both with stuffed animals and books. She actually evaluates items and then decides. She opted to donate half of our books. To manage the sorting process she brought up a kid’s play tent from the basement and all the books that she wanted to give to other kids went in the tent. Then Amy, Carl, and I would sort through the piles to rescue any books we wanted to keep. I honestly have no idea how all of the books we are donating actually fit on our shelves, but that is why we needed to do the Great Book Sort of 2021. Next up: the Great Toy/Game Sort of 2021.

Sarah opted to donate her copy of Brown Bear, Brown Bear, What Do You See? but that didn’t stop her from creating a game during a family zoom that melds Brown Bear and Goodnight Moon. She loves it when everyone has a Goodnight Moon background. She started saying, “Young mouse, young mouse, what do you see?” And then we took turns naming what was seen and asking what the new thing saw, such as “I see a pair of mittens looking at me. Pair of mittens, pair of mittens, what do you see? I see a bowl of mush looking at me.” It reminded me of Who Stole the Cookie from the Cookie Jar as we named what person would name an item next. 

For St. Patrick’s day, with Anna’s help, the kids drew a large sidewalk chalk rainbow leading to Amy’s upside down cauldron leprechaun trap. They never caught anyone but there were some coins there after the trap had been sprung. Amy also had fun running around as a sneaky leprechaun.

Amy and I had a wonderful birthday. She got up early so she could finish her school work right away and have most of the day to play with Anna. I left the house for 6 quiet hours to myself. It was lovely. Then we made a chocolate cake with strawberry frosting. Amy is ever more skilled in the kitchen, measuring the dry ingredients all by herself including doubling the recipe amounts. She opted for tacos for dinner so we were all stuffed to the brim with guacamole and cake by the time bedtime rolled around. 

Amy had a birthday Google Meet with some friends yesterday and it went beautifully. We made cupcakes first thing in the morning and then I drove around dropping off kits for everyone. The kits included cupcakes, blank wooden wands and cats, and coloring pages of witches, wizards, and cats drawn by Amy. For the party itself, Amy asked questions pertaining to being a witch or wizard and I called on kids to answer, making sure that everyone got a turn for each question. Their answers were so fun and creative. Sarah participated on a separate computer in her room and dismissed Carl from his support role rather immediately. We were floored by how flawlessly Sarah participated. She muted herself when it wasn’t her turn, unmuted to answer the questions when I called on her, and answered every question promptly, clearly, and appropriately. What amazing skills all of these kiddos now have in the realm of virtual meetings.

Sarah’s eagerly anticipated musical note pants and backup musical note shorts made by Grandma arrived on Friday. Perhaps the abundance of notes made it possible to finally consider other clothing choices because yesterday she kept changing into different pajama bottoms every hour or so for no apparent reason. It’s nice to see that not everything without notes is obsolete. When Carl took the girls to the park yesterday Sarah wore her new pants and her musical note backpack. Amy wore cat ears and fairy wings. Of course. I love their individuality and clarity about their passions.

March 14: Shots, Leaks, and Wonderful Surprises

Spring has sprung! New sidewalk chalk has been purchased and used. I got my first Moderna shot! Amazingly, about a minute after I sent last week’s update, a friend who read it sent me a message offering to help me get an appointment. Five minutes later she had an appointment for me for yesterday. I don’t understand her magical powers, but I think I may need to start putting more requests out to the universe in Sarah’s style of, “Oh, here is your…” to imagine that the thing I want has already happened. 

Monday did not go how I wanted, but in the end all was well. Monday morning started with stress for each kid about schooling and with learning that there had been a water pipe above my office that got damaged. Luckily I decided to cancel my client just in case my office was unusable. It was unusable for that day. The building people worked quickly to make things right, replacing ceiling tiles, drying the carpet, and reimbursing me for my lost work and books. Four of my favorite reference books that I keep on my desk were water-logged. While they are still readable, I would get no joy from the constant reminder of the leak. 

Yesterday we had the kids help clean the house because they knew we would reveal a surprise when things were clean. I don’t want to always need a surprise as a bribe, but I’m still glad that it worked. I think I continue to underestimate their capabilities. If they can make the messes then of course they can unmake them! Sarah is great at vacuuming as long as the floor is clear. She doesn’t yet assess the situation and decide not to vacuum dice. For instance. But I got the die out so all is well. 

The surprise was that Anna was coming for a sleepover and Carl and I were heading to the mountain house for the night. This was my birthday present to myself and it has been completely wonderful. Celebrations will continue on Thursday and next weekend.  This is my/Amy’s second covid birthday but this time we are so much better prepared. We can plan for it instead of needing to cancel everything. Carl and I went for a hike on a winding trail that felt like it belonged outside of the Shire, filled with moss-covered rocks and trees. Later, Carl surprised me with an autographed picture of the Tiny Chef and with a virtual Josh Ritter concert, complete with faux tickets and a merch table. I was floored and so happy that the tears spilled out. Then we slept and slept and slept. I don’t remember the last time I slept in so late, although daylight savings time made it seem even later.

I hope you are all well.

March 7: Squeak, Bingo, and Sense Memories

Sarah’s school speech therapist nearly fell over from delighted shock when Sarah began their session by asking, “How are you, Ms. P?” Sarah started asking this of people maybe a week or two ago and it is wonderful. 

I have been appreciating the ease with which Sarah prompts people to say what she wants them to say. If she says, “I missed you Mommy Sincere!” and I say, “I missed you Sarah!” then she might correct me with “I missed you Baby Mouse the Mouse.” She will feed me the words she wants to hear. Perhaps we could learn from her. What if I could just as easily tell someone what I want to hear from them? With no defensiveness or concern that the person wouldn’t want to say whatever I want to hear?

Sarah and Amy have developed a new game. They sit on my bed and fling themselves backward while saying “Squeeeeeak” together. After many rounds of Squeak we usually transition to playing Sequence Cats. Sarah has improved tremendously. Many months ago, she used to need intensive guidance to find the cat to match her card. Amy and I would need to point to it directly. Now Sarah rarely needs any help at all and if she does then we can just point to the general area and she finds her matching cat. Amy is an incredibly patient and attentive team player with this.

We have also been playing Hello Kitty Bingo. When I overheard Sarah playing with her Goodnight Moon game and calling things out as if she was playing Bingo, I suggested to Amy that we could make a Goodnight Moon Bingo game. Amy was on the job immediately. Not only did she create a board, but she helped Sarah create a board. Amy prompted Sarah with what to draw and how to draw it, sometimes guiding her hand-over-hand. She coached Sarah in what items to color and Sarah did an amazing job staying in the lines. I was noticing how much time they spent with this activity yesterday and was thinking how far Sarah has come with her attention span when an activity is to her liking. It is really astounding. 

Amy is learning to jump rope. On Friday she was struggling mightily, in part because of a rope that was too short and a “rope" that was plastic instead of a real rope. I found an old rope that was long enough. With a day of practice she went from saying that she was just no good to being quite good and loving it. Despite how often this pattern repeats itself when she attempts a new skill, each new time still feels insurmountably hard for her. 

As we approach the one year anniversary of when everything shut down due to covid-19, I’m surprised by how emotional I feel when certain memories surface. Carl was playing songs that Amy’s class sang at her winter concert. Amy’s expression was unlike any I’ve seen from her.  She said she didn’t know how to describe what she was feeling. There are so many sense memories attached to when we were with people all together in a semblance of normalcy. Hearing Josh Ritter songs now has me feeling teary because of the concert that was to be my birthday present but never happened. I have listened to his music throughout the year, but now it hits my heart. This is the first year in maybe ever that I feel uncertain as my birthday approaches. Almost not wanting it to come, but also wanting to make sure it feels special. I know we are on the cusp of the world opening up again more, but that still feels frustratingly far away. I’ve been trying to get my vaccine shots since, as an LMT, I am in the 1a category, but I have had no luck. As Carl said, the Rite Aid scheduling system seems to have been designed by Crowley from Good Omens as it repeatedly brings people to the edge of hope and then stymies their progress. I used to feel so patient about the whole thing and now I feel grumpy and frustrated. I don’t mind if I have to wait, but I want to be able to make an appointment even if it is several weeks away. You would think such a request would be possible, but you would be wrong. If I were Sarah I would sing-songily prompt the various scheduling systems, “Oh, here is your appointment."

May you relaxedly ask for what you want and may your jump ropes be real.