October 31: Halloween Preparations and Health Mysteries

Happy Halloween! Tonight we will have one house, two sorceresses, and one intersection walk sign that changes color and flashes. Carl’s costume, that he made, is the walk sign and Sarah absolutely loves it. When she first saw it she held it against herself, said she was a walk-sign robot, and said, “beep boop beep boop” as she walked around the house.

Last Sunday we carved pumpkins. The kids needed very little help. We cut the tops to make lids and helped with the innards. Amy can’t stand the feeling of the seeds and other wet entrails. Sarah needed a little help with the carving, but that was it. Amy made a cat silhouette, Sarah made a Peppa The Pig head, I carved around a tracing of my hand, and Carl created a bat. 

There have been a couple of moments in the past months when Sarah spontaneously felt sick and then seemingly as quickly felt well again. I have no idea if these are related to her nighttime startle wakings which would relate them in some way to seizures. I do know that on Tuesday morning Sarah’s teacher called to say Sarah wasn’t feeling well. It didn’t seem to be a passing thing so I went to get her, leaving one of my teacher trainees in charge of my class. Sarah said her head, throat, and ears hurt. When we got home I gave her a Gatorade and she rested. She didn’t nap. She had more to drink. She drank quite a notable amount before needing to pee at all, which made me think she had been dehydrated. She also seemed perky and well after having the fluids. Wednesday and Thursday she went to school because she really seemed to be totally herself. 

Thursday when Sarah got off the bus she clearly wasn’t feeling well at all. She listed the same complaints as before but also seemed sick to her stomach. I made an appointment to see her doctor within the hour. About 15 minutes after making that appointment, Sarah was covered in extremely itchy hives! I freaked out, wondering if I should take her to the emergency room. Since she was still breathing normally and her lips and tongue weren’t swollen we decided to stay with the original plan of going to her regular doctor. Sarah kept asking me for medicine to help her feel better but I didn’t know what to give her. It had been less than 24 hours since she last had Claritin so I didn’t think I could do that. The nurse and the doctor both asked about/suggested Benadryl. I had to remind them that Sarah can’t have Benadryl because it lowers the seizure threshold. Her doctor then said she could have more Claritin because it was close enough to 24 hours. That started helping within about 10 minutes. We have no idea at all what caused the hives. As far as we can tell she didn’t have anything that she is allergic to. While we were at the doctor’s, I asked Sarah how her head, throat, and ears felt. She said they were fine! She tested negative to strep and covid and her ears looked clear. And yet she had a fever. I assume that may have been related to the hives since her skin was flushed and she didn’t have a fever before the hives erupted. She didn’t have school on Friday anyway, but also seemed totally well again by that morning. This all felt like one big mystery. 

The difficult thing with Sarah and sickness is how to evaluate what she says. We know from the past that sometimes she says things hurt because she knows that is how to get out of school or to sleep in our bed. She also sometimes says “no, no thank you” when asked if something hurts because it actually does hurt but she wishes it didn’t. At least, this is my best guess as to how to interpret what she says. Ever since Tuesday Sarah has continued to occasionally say that her head hurts. This is often reported at bedtime, so I think it may be her way of saying she wants to sleep in my bed. But when pushed on the details she maintains that her head really does hurt. Yet she acts totally well! So either she actually is totally well or she has had a headache possibly since Tuesday in which case I freak out a bit. We see her neurologist on Wednesday. I don’t know if he will have any ideas, but I’m glad to have the appointment. 

I may have jinxed my hip with my last update in which I said I had found a yoga routine that was really helping. I don’t know if I did the yoga routine too many times or what, but this past week my hip has been extremely unhappy and painful. I’ve been limping and walking as if I had a wooden leg, especially on stairs. I’ve had times when it is slightly better, but it’s still not back to normal. So this is frustrating and not at all what I ever envisioned for my 44 year old self. 

I hope you are all well and solve all of your mysteries.

October 24: Doors, Musical Notes, and Cats... Tailoring Many Aspects of Your Life To Fit You

We are enjoying a wonderful weekend with Mom-Mom and Pop-Pop. There have been Conversations with Mom-Mom, where Sarah and Amy play with Mom-Mom in her room. Sarah, sometimes known as Door, falls and breaks her nose and needs the aid of Dr. Mouse, also played by Sarah. Speaking of doors, Carl and Sarah went to Lowe’s to get something and Sarah was delighted by a display of 6-panel doors. Among many other names, I am often called Mama Door and Sarah is Baby Door. 

It is that time of year when we assess fall and winter gear and realize how much the kids have grown over the past year. Sarah needed new coats and wanted a Musical Note coat. As you might imagine, this wasn’t readily available at Target. Instead, we purchased a small white coat from the women’s section and used a Sharpie to draw musical notes and symbols on it. She loves it. Meanwhile, Amy has outgrown many pairs of pajamas so she helped Grandma make a pair of pajama pants that are long enough for her ever-lengthening legs. 

Amy had some math homework to do this weekend that required her to know the order of operations, such as attending to what is inside the parentheses first. She wasn’t understanding why so I translated it into cat language. For instance instead of looking at 6x(3+4), we looked at Litterbox x (cat poop + cat pee). Obviously, before you scoop (multiply by) the litterbox, you would want to wait for the cat to do all of its business inside the (box). I also revised the Please Excuse My Dear Aunt Sally to Persians (Persian cats) Eat Mice, Dining After Sunset. I think this helped, but time will tell. 

Mom-Mom used to tutor people with math anxiety. She has talked with Amy about how Amy has a smart math brain and if she doesn’t understand something in class she could be very brave and ask a question and that probably other kids would like the help too. I don’t know if this will lead to anything at school. I do know that many kids are struggling and having feelings about math this year. It can’t hurt to have many people assuring Amy that if she is struggling then she isn’t the only one. I also think it is ok if she is the only one struggling and that doesn’t make it less valid. But it could make it harder to ask for help if she thinks she is the only one. I know she is learning a lot at school, but when she has homework we often need to go over things as if for the first time.

I am tentatively hopeful about my right hip. For many years it has intermittently been uncomfortable to varying degrees. It often doesn’t interfere with my life, but I almost always can feel a difference between my left and right sides. And sometimes I am sort of limping instead of walking. Yoga has helped, but recently I discovered one particular routine by Yoga With Adriene on youtube that really makes a positive difference. So for the past week I have done the same routine every day and I have had moments of walking when I realize I’m fully comfortable and faster in my pace and my hip isn’t hurting at all. Knock on wood, my head also seems to be in good shape in terms of headache whispers. I still get them, but they are the kind that I can get to go away if I change my thinking and become more present in my body.

Yesterday Amy made bat cupcakes, with broken Grabbit cookies for wings and candy eyes for the, well, eyes.  She did almost every step herself. I was just around to offer some light guidance and to frost the cupcakes. Evidently when Amy was describing the plan to Mom-Mom, she said that the candy eyeballs don’t taste like real eyeballs. This lead to much laughter about whether or not Amy had eaten real eyeballs in order to know the difference. 

Another highlight from the week was Amy getting American Girl dolls clothes from Grammy. The best part was a tiny pumpkin basket to match Amy’s basket for trick-or-treating. Amy and I were beside ourselves about the cuteness. 

May you have an abundance of your equivalent to musical notes, doors, dolls clothes, and cats.

October 17: Not Making Feelings Worse By Judging Myself for Having The Feelings in the First Place

Surrounded by the silent cacophony of my own judgements about my feelings, I cease to notice them as optional. Inspired by Glennon Doyle’s encouragement to not abandon myself, I have started to notice when I condemn my reactions and to stop the condemnation and start accepting the feelings as rational. For example, yesterday had some moments with Sarah that felt extraordinarily stressful, but then I compounded my difficult internal experience of stress by telling myself that I shouldn’t be so stressed and that anyone else would handle it better. I could feel my head muscles tightening, as if preparing for a headache. The simple step of saying to myself that it was ok to be stressed, made sense to be stressed, and that others in my shoes might feel the same, helped my head muscles release a bit. I was still stressed, but I wasn’t adding insult to injury by fighting myself about the feelings. I wasn’t abandoning myself. 

This past week I realized that Sarah and I had been getting along pretty well for a while and that instead of focusing on our clashes I could notice how much she loves me and seeks connection with me. I could trust that connection and not give up on requests of Sarah before even making them. I also let Sarah watch more tv than usual. Sure, there has always been the occasional day with unlimited technology, but I let that continue for much more of the week when there was down time. I told myself that staying relaxed myself was worth it and I stand by that. But… perhaps that lulled me into forgetting how trying certain moments can be. Which brings me back to yesterday. 

We attempted an outing to two museums with our extended family. At the first museum we knew it might not have a lot to appeal to kids, but I hoped there would be enough. I hoped there would at least be a fun ramp to traverse. Sarah’s chosen activity turned out to be riding the elevator by herself. In hindsight, maybe I should have let her do that repeatedly for half an hour. But in the moment I didn’t want her to do that, which led to much resistance on her part. Instantly, I went into high stress mode, wishing I was anywhere but in that moment. In short order, the girls and I returned to the car. Then we went to the History Center, which was the next planned destination. We got there well before the others, but that was ok. The girls love Kidsburgh and spent a couple hours happily playing. While Grandma stayed on kid-duty, I got to walk around the museum a bit. But then I felt guilty for being away from kid-duty and that Grandma wasn’t able to walk around the museum. My hip hurt (nothing new but it comes and goes as to the severity) and I felt like I better enjoy every minute of the museum instead of not wanting to read every word. So I felt guilty for not enjoying the museum more. Eventually the kids timed out on even the fun kid stuff, so I took them home for quiet time, pizza, and a movie while the rest of the family went out together. It was hard not to feel a little sad about missing the family time, but that probably would have been more stressful if the kids were grumpy and wilted. 

Aside from yesterday’s challenges, the week went well overall. Amy has noticed that math is easier and she is faster at completing problems now that she has her multiplication and division facts memorized. Sarah’s new favorite thing to do with me is take turns quoting Blippi, a fun tv personality from a show with the same name. Sarah’s favorite line is, “There’s so much to see and do here!” Then she likes to spell “h-e-r-e” and say she is Baby Here. 

One afternoon we went to the playground. I felt the quintessential sadness of a parent realizing how much her kids have grown and that the days for playground trips are numbered. Especially playground trips requiring a grownup’s presence. I wouldn’t want to rewind time nor do I want another baby or young kid. But I still felt the poignancy of appreciating a moment in time that may be fleeting. I was also stunned to watch Sarah run while pushing the merry-go-round and then hop on while it was in motion. When did she learn to do that?! Sarah’s is all about going down twisty slides lately and after watching some of a Blippi episode I know why. There is a twisty slide in the episode. Well, maybe letting her watch Blippi ad infinitum has more benefits that I realized. 

Much love to all of you. Feel your feelings and don’t abandon yourself by telling yourself you shouldn’t feel that way.

October 10: Math Play to Solve Problems and Lessons in Letting Go

Sarah is the most talented and ever-surprising namer of herself and others. This week she called me “Mama Circle-With-A-Line-Through-It” and dubbed herself the same, just as the baby.

Amy has been roller-skating a up a storm, and changing her plans for her Halloween costume as rapidly as those roller skate wheels spin. She is alternately going to be a witch, a mermaid, a sea witch, Anna from Frozen, or a sorceress. 

Last Sunday Amy took a practice math test. Wally, the stuffed animal wolf that visits when Grammy and Granddad visit, took one page of the practice test too, with my help. Embarrassingly, even the problem he tried to do correctly he got wrong because he was going too fast. He was most proud of his drawing a stick figure as part of one answer and of writing “purple” for another. Amy found some good laughter in Wally’s answers, which helped with her tears. When she doesn’t understand a math problem or concept it touches something deep within about not being smart or good enough. The feelings are hard-core and no learning or help can happen until the feelings clear. After a long break, Carl realized that with the problems that were written out with more words and not all numbers, Amy was fine and understood. So he rewrote the trickier ones with more words and showed her how they were the same problems and that she really did know what she was doing. Then he brilliantly played the role of a math villain trying to trick her, but she foiled his plans every time!

I’ve had some headache whisper scares this past week. I’m used to having tiny trace headaches that remind me to be present and not stress so much. But the recent whispers felt like they came from a deeper, less controllable place. On top of working to notice what emotions might be behind the whispers, I had to give myself space to move through the terror about the cluster headaches possibly returning. I’ve journaled and cried and breathed. One of the most helpful things seems to be giving myself time to truly do nothing and to tell myself I have nothing to do. There is always a long list in my head of things to do and other people I want to help with their various pains. But if I don’t stop this headache train before it leaves the station then I will be no help to anyone. 

Two moments this week highlighted how important and impactful it is to tend to one’s own self first and the impact to others will follow. One moment was mine and the other was Gregory’s. My moment was when I was giving an Alexander Technique lesson to someone. As I freed my own neck, my student gave a huge sigh as things shifted and released for them. It is easy to think such a thing is coincidence, except for how often the coincidences happen in general and did specifically during this lesson. I keep thinking about how I can better free myself during parenting tightness, without worrying about the outcome. My goal is just to be easier in myself. Easy to say, but so much harder to remember to (un)do. 

Here is Gregory’s moment in his own words…

"In the midst of whatever play we were playing, I found a paper airplane.  I threw it.  Sarah tried.  Her grip and motion were not amenable to the plane actually flying.  I asked if I could show her.  Akin to putting a person in the right position for Yoga or Alexander Technique (as my memory serves with you, Jenny).  Sarah agreed.  We got her in position, I helped her get the right grip, and she threw the thing very successfully.  She wanted to make another. Well, I did and she was like, “Yes!”  So we’re sitting at her desk, her centered in the Anna-chair and me on the stool to her left.  I began making an airplane I learned how to make in my youth.  As I started the first fold, and I have to tell you that when I make paper airplanes, my neurodivergence and perfection streak really kicks in reflexively.  Sarah reflexively, in a bid to participate, pushed down and I reflexively started a blocking move BUT TOTALLY CAUGHT MYSELF.  I think Sarah sensed the tension but then I was smiling and I said, “Oh wow!  That’s a perfect fold.”  She paused.  Smiled.  Kissed my right forearm.  And the world was right.

She gave me that forearm kiss several more times.  I like to think that she was “rewarding” my self-control. My catching myself.  That is, she was, in that moment, MY guru or teacher or clinician.”

Yesterday we went to Simmons’ Farm to get pumpkins and play. Sarah loves to pretend to drive the firetruck. Amy loves the giant hamster wheels and the loooong slide. It took much determination on her part to make the slide work for her because it wasn’t as fast and slippery as in past years due to the recent rain. She persevered and had a great time overall. Carl and I marveled at how we have big kids now and they are really not at all little kids. How did this happen?!

Carl is riding 130 miles for a bike race today!! 

Since it is October, we are starting to watch Halloween movies and tv shows. One of Amy’s friends suggested “Hocus Pocus.” I said, “Wow. That’s a really old movie. It came out when I was young.” Then I realized what I said and cracked up. It also turns out that I don’t remember ever seeing the movie and was probably confusing it with something else.

I hope you are all well.

October 3: Family Visits and Math Struggle-Fun

We are enjoying a wonderful visit with Grammy and Granddad. On our drive to meet them at our mountain house we had a short phone call on speaker phone. As Carl and I said our goodbyes, from the back seat two voices chimed in with, “Meow!” and, “Musical note!” It was adorable. The only trouble with the visit is that it feels like it is going too fast and is too short. 

Amy has had some big feelings at bedtime Friday and Saturday because she wanted to stay up later than usual, which we allow on weekends. Sarah didn't want to stay up much later than usual and wanted the light out in their shared room. When we don’t have company then they each have their own room. When we do have company then Amy reads in my bedroom before she goes to sleep in the kids’ shared room. Usually this works mostly smoothly, but this time around Amy was very upset that Sarah wanted to go to bed. Sarah was upset that Amy didn’t want to go to bed. Amy was also upset about how quickly the weekend passes and that Sunday doesn’t feel like a weekend because so much of it is getting ready for the week ahead. I think this school year is harder for her than past school years so this feeling about the weekend is intensified.

Last Sunday, Amy had some big struggles and feelings regarding math homework. Doing long division with decimals is new and challenging. Carl and I each spent time helping her and she did get through it, but it was a loooong day. I had been realizing that she really needed to have her times tables memorized and that she didn’t. So I made flashcards. After a week or so I realized that I needed to help her know how to use them effectively.  While resistant at first, she did a wonderful job going through them with me throughout the week. I picked a small pile of cards each morning, and then as we went through them I would pick the equation that gave her the most pause. That became our equation of the day. I would ask her repeatedly, changing the order of the numbers, sometimes asking as a division question, or sometimes whispering the equation as a secret I had to tell her. It felt good to move beyond math feeling onerous to having fun with it. 

Granddad used to teach multiplication and division to his students and would purposely pretend that he didn’t know the answers. He also had Chris The Multiplying Cat beanbag animal as his assistant. Chris usually got the answers right. As Grammy quizzed Granddad, Chris, and Amy, Granddad really did not know his times tables. He had a perfect deadpan, yet somehow believable, way of answering incorrectly. Amy was cracking up, especially when Granddad said the answer to one equation was “green.” 

Sarah’s week went well overall. She delights in spending time playing restaurant with Grammy. She also reads books with Grammy and lets Grammy read books to her. Note that Sarah doesn’t let me read books to her anymore. Yesterday had one weird blip when Sarah suddenly didn’t feel well. She had been talking to Granddad, then suddenly got up and said she was dizzy and had a headache. She got in bed and had some Advil and water. A couple minutes later she had yogurt and then seemed almost back to normal. Within an hour she seemed fully herself. My adrenaline really got going when she first didn’t feel well, as always happens. It is often difficult to truly ascertain how Sarah is feeling. When she really feels yucky, sometimes she says she feels fine because she really wants to feel good. When I asked if she felt dizzy she said, “No. No thank you.” Other times, when she wants to get out of something she may play up a headache when there isn’t one. She also will describe, seemingly out of the blue on any given day, how she felt after a seizure that was many months ago. I think time is a very different thing in her mind, and timelines aren’t actually lines but rather piles or strands that get all intertwined. The only thing that told me Sarah was truly feeling ok was when we went for a walk and she started happily running down the road to catch up to Grammy. 

Sarah’s neurologist has increased her level of oxcarbazepine, her anti-seizure medication. We are titrating up to get to the appropriate new level. She is also on an increased amount of miralax after I spoke with her PCP. The good news is, while Sarah’s x-ray had me all worried about scoliosis, her PCP said that wasn’t the correct xray to diagnose such a thing. It could have been her positioning. It also hasn’t ever been something noted on her well-visits. The PCP said we could do another x-ray to check for scoliosis if I wanted, but I opted not to at this time. That feels like it would be an overload of imaging and hospital trips.

My intention for the past couple of months has been to have Mondays during school hours be my book-writing time. Rarely does this actually happen. I have either been substitute teaching at the massage school, hanging out with whichever kid didn’t have school, driving home from something, or I’m not sure what. This past Monday I did have my day. It was glorious to have a chunk of a day that was truly just for me and I didn’t have anyone else to care for in any way. I even got to have lunch with a dear friend. I realized that my assumption of being able to work for 4 hours straight on my book is completely unrealistic. I can maybe handle an hour, but then I need a break. Still, it has been years since I set aside a regular day to be just for me. It felt so freeing and rejuvenating.