May 28: Sickness, Seizures, and Tie-Dye: An Exploration of No Sleep

Amy did not get fitted for a scoliosis brace on Monday. Instead she threw up on the drive there, got mopped up, threw up on the drive home, showered, and slept for most of the day. She was miserable when she was awake, hating being sick. Monday night she slept next to me, but she was a bit congested so was not the quietest bedmate. I felt like I didn’t sleep at all, although I’m sure I must have slept some. Tuesday morning Amy said her mouth and throat hurt. I was working all day so Carl took her to Urgent Care and stayed home with her. At Urgent Care everyone expected her to have strep throat, but her test was negative. She slept and rested all day and by the evening definitely seemed to have rounded a bend towards wellness. I looked forward to a good night of sleep.

At 2 am Sarah had a seizure. Once she was able to move she got into bed next to me, but neither of us reached deep sleep. I’m not confident I slept more at all. At 5 when Sarah was awake I said she could sleep more and could rest as long as she needed. I told her I could drive her to school later if she wanted or she could stay home. She insisted on going to school on the bus. It was field day after all. She had been looking forward to this day for ages and was especially eager for the tie-dye station. 

So on Wednesday both girls went to school. Sarah took a short nap that afternoon and seemed tired, but… instead of getting a solid night of sleep, she woke every hour or so to eagerly see if her tie-dye shirt was dry. It had been sent home still coiled and in a ziplock bag. After enough time had passed we rinsed it and hung it to dry. Sarah did not want to put it in the dryer, despite her desire to wear it immediately. At midnight she reached a point of desperation, as did I. Somehow Carl had the internal emotional space and creativity to be incredible. If it had been up to me I might have yelled and forced the issue by throwing the shirt in the dryer, but that wouldn’t have helped the big picture of my relationship with Sarah and probably would have taken up as much time as Carl’s patient route took. At least I was wise enough to leave and let him handle things. He asked Sarah what she wanted to do and with each idea she had for drying the shirt, he acted upon it so they could try it. They tried a towel. They tried blowing on it. Sarah tried wearing it. They considered putting it on the balcony. Eventually they rigged up a string in Sarah’s open window, with the shirt on a hanger hanging on the string. Sarah’s door was open and the balcony door was open. There was a pretty constant cool breeze which meant that at 4am when Sarah woke to check on it she was able to wear it. Carl and I felt quite tired on Thursday. 

Thursday Sarah had a dress-down day so she could wear her tie-dye shirt. She came home from school, made herself some chocolate milk, and immediately headed upstairs for a three hour nap. I napped for maybe an hour of that. Friday Sarah came home from school and again took a looooong nap, only waking for a short dinner in bed, and then going back to sleep. 

Now, beyond the details of sleep or lack thereof…

I try my best to not clean the kids’ rooms, but sometimes it is very hard to let Sarah’s room stay covered in clean and dirty clothes. But this week I did it! And she actually cleaned it on her own. And she didn’t just put everything in the hamper or on top of her dresser or draped over her closet bar! She actually put clean clothes in drawers, hung shirts on hangers, and put dirty clothes in the hamper!! And that was all of her own accord. Then she made a get well card for Amy! 

We had a tiny and adorable fledgling on our porch Wednesday afternoon. 

Amy had an all-day field trip on Friday, getting back to her school at 8:20pm. I’m so glad she was well by then so she could enjoy the day. 

Last night at Sarah’s suggestion we cooked hot dogs over a fire and made s’mores. The fire was more ashy than usual, with many floating bits of debris. Sarah spontaneously broke out singing, “Oh I love ash, anything dirty or dingy or dusty.” That is a spin off of Oscar the Grouch’s “I love trash.” We cracked up.

If you are looking for something to watch, I recommend the documentary “Working” on Netflix. Carl is in episode 3! Aurora is one of the featured companies so he knows a lot of the people, and our friends are in episode 4.

May 21: Publishers, Naps, and Duets

I heard back from She Writes Press, the hybrid publisher I submitted to a few weeks ago… they gave me the green light! They want to publish my book! They said I passed their selection process with flying colors. I got the email Monday morning in between clients and I thought I would climb out of my skin. I was so full of adrenaline and joy and I wanted to run around screaming, but I couldn’t at that particular moment. Then, I told a writer that I know about my news and they told me to be careful that this wasn’t an arrangement in which I would pay the publisher. Down crashed my world and euphoria. The whole deal with hybrid publishers is that the writer takes the financial risk and pays money up front, but keeps more control and gets a higher percentage if/when the book sells. Perhaps I hadn’t made that clear when I shared my news. And I hadn’t remembered all of the details about She Writes Press. I just knew that I suddenly was doubting myself and my choice and thinking I should start submitting to agents to go the traditional publishing route. I felt so jangled. When I told Carl and my immediate family and some close friends, their congratulations fell onto a small, doubting me. They were so excited for me (Carl even got me a bouquet that our cat won’t eat! It is made of balloons) and I couldn’t find my way back to excitement not matter what I did. If my normal existence was that of a drawn image that was colored in, I now felt like someone had erased my borders. 

Talking further with Carl and my parents, reading more about She Writes Press and the whole hybrid business, and talking with an author about to be published by She Writes Press helped me slowly fill in my borders and feel like my excited self again. I actually felt more solid and strong about my decision. This is absolutely the right publisher for me. And now I get to feel completely overwhelmed and intimidated by all that has to happen next. I do have a lot of time though. Assuming all goes to plan, my book will come out in the spring of 2025, so two years from now. On the one hand that seems like forever. On the other hand, with all that has to happen that actually helps me breathe and think I have time to take care of everything. But wow! I’m rather in awe that I’m at this moment and that this will really happen. 

In other news… I have started trusting Sarah’s naps more. Ever since she slept for 13 hours after her seizure and day with her piano recital and then went on to smoothly handle an intense week of rehearsals and shows, I have realized that maybe I can trust her body to know what she needs. So often I have woken her from naps when it got to be a certain time in the afternoon because I wanted to make sure she could go to sleep at bedtime. Now I think the best thing is for her to get the sleep she needs no matter when it happens. 

Carl took Sarah out last Sunday to practice biking and he said she was really getting the balancing part even better than in the past. 

Amy is all better from her roller skating injury and is currently at a Girl Scout camping trip with some of her best friends. She is also now 5’5.” We met with the pediatrician, as the orthopedic doctor had suggested, and the pediatrician wasn’t concerned about any of the things the orthopedic doctor was noticing. But, she is still sending us to a neurologist so that we are thorough in our response to check everything that could pertain to her scoliosis. Tomorrow morning we go to have her fitted for a brace. 

Grammy and Granddad sent the girls presents just for the heck of it and they were some of the best presents ever. Sarah has loved the K for Killers that lights up in a Killers music video. Grammy and Granddad got her a light-up K! Amy received Katie the Catsitter graphic novels and loves them. The only trouble was that she didn’t want to put them down ever and that makes it hard to get ready for school or bed. 

Last night Carl and Sarah played a duet with Sarah on the piano and Carl with his guitar. There is an app that allowed them to follow music on the iPad, one measure at a time, while playing the song in the background. Sarah loved it. Carl started making up a song so they could have their own lyrics. Sarah chimed in and now sings it on her own. It is all about tigers and pandas and circles and tails. 

May 14: High School Musical Jr.

Last Sunday after Sarah’s piano recital she slept for 13 hours! I woke her for her evening meds and some gatorade, but then she went right back to sleep. I was worried that she was getting sick and that it would impact her musical. She wasn’t getting sick! I think that long sleep was what she needed to fully recover from her seizure. If there was an impact to the musical it was that getting so much sleep set her up well to handle long dress rehearsals that pushed dinner and bedtime late. Not only did she handle all of that beautifully, she even got up before she needed to each morning and was often ready for school before the bus arrived. For most of the school year she has been racing to finish brushing her teeth and put on her shoes while the bus waits, so this was notable to be ready early. 

Friday night and last night she had her performances of High School Musical Jr. It was so good! And she did a wonderful job! I was able to watch a dress rehearsal on Thursday and I recorded the whole thing because I was still nervous that something would happen to mess up the performances. What I learned at the dress rehearsal was that it was nearly impossible to see Sarah. She was in the far back left behind many people, some of them tall. There was one moment when she came towards the front for a few seconds. For Friday night we picked seats in the front right of the auditorium, hoping the angle would help us see her - it did! We saw a few more glimpses of her, but they were still incredibly brief. Last night we sat in the balcony and could see her almost all of the time she was on stage! 

I know I marveled last year, but I marvel again this year that she was part of a musical. This is a huge accomplishment, a huge feat of focus and patience and participation with a large group of people. She learned so many songs and needed to do specific moves with them. A couple of her castmates had to tug her back onstage sometimes because she was positioned at the edge where a few steps to one side meant she was offstage, but that all worked. I’m moved to awe and teariness every time, especially when I think about how Sarah’s teacher attends every single rehearsal with Sarah to make the whole thing possible. That is so far above and beyond the call of normal teaching unless you are the director! That is an incredible gift of time and support. And seriously! Sarah was in a musical!!! For the second year in a row!! For all of the Sarah-Rise volunteers and Amy volunteers who made it possible for me to have more Sarah-Rise time, for all of the people who do unofficial Sarah-Rise time still, for the family and friends who give her time and space and encouragement… please drink this in as your accomplishment too! Look how far we came!!!! Do you remember when we were trying to help her learn to speak or sing along with us or copy physical moves or attend to an interactive activity for longer than five or ten minutes?! I know that was years ago, but still. Still! This is immense! 

After each performance we came home with those family and friends who had come to cheer her on and had cake and ice cream. On Friday night I felt like I was in an episode of the Great British Baking show as I raced to finish frosting the cake in the five minutes left before we needed to leave the house. Amy laughed at me as I described throwing the frosting in the “squeezy bag” instead of “piping bag.” Sarah is currently all about the letter K for the Killers musical group. She likes to pose her body as a K and sometimes she calls me Mama K. So I piped a K onto the top of the cake. Later, Amy made a K out of candles propped against each other. Sarah was delighted.

I woke this morning to an array of cards for Mother’s day. Amy made a collage that is quite a work of art, and Sarah’s cards have some of her best hand writing ever. Carl’s card pointed out that not only have I done all of the things I wrote about in the Sarah-Rise book, but then I wrote about them and unexpectedly created Sarah’s favorite book. The only times she has been slow to get dressed for things this week was when she was immersed in reading my book draft! Amy is currently downstairs doing something in the kitchen for mother’s day and I’m not allowed to go in… she just brought me toast and scrambled eggs! 

In other news, Amy and I met with an orthopedic doctor regarding Amy’s scoliosis. We had been warned by multiple people that the orthopedic doctors at the Children’s hospital are not known for their good client interactions. We lucked out and got a good one! He was nice and answered all of my questions. We didn’t feel rushed and we felt respected. And… Amy has to get a brace that she will wear at least 18 hours a day until she is done growing taller. We knew this might happen so I’m not surprised, but it is still a thing. We also have a prescription for Schroth therapy. The doctor said it hasn’t been proven to be effective, but there are also many people who say it is helpful. With that and the brace, the main thing they do is to prevent the curvature from getting worse. They do not undo the curvature. The doctor also wants us to see the pediatrician again and a neurologist to make sure there isn’t something systemic going on as the cause of the scoliosis. That has me much more nervous than needing the brace. Perhaps that is a gift. Now I think, “brace? No problem!” Just please let all else be well. 

Amy got a bad scrape from a rollerskating fall when she tried going down a hill. Since she was only wearing a skort, when she fell on her rear there wasn’t much cloth on her legs to protect her. She got such a scrape that she stayed home from school on Wednesday, a very sad kiddo. Her best friend came over that morning and afternoon bringing little presents, but of course the best present was the visit. Amy’s mostly recovered now, which was especially great because she wanted to dress and move as a cheerleader last night for attending High School Musical Jr. 

Some of you have kindly inquired about my book. I’m still waiting. I think it has been two weeks since they said I would hear in three or four weeks. That doesn’t stop me from slightly holding my breath every time I check email or from checking their website almost daily! I still have some small edits to make, so I’m trying to focus my energy on that so that if they ask for the whole thing I can send it. 

May 7: Seizures, Strangers, and Extreme Heat

Amy’s English Language Arts teacher has had various art contests going alongside their various writing assignments. On Friday the winners were announced. Amy won 2nd place for two of the contests and 1st place for another! She was very excited, and this was a nice finish to her week that included PSSA testing. That testing on Monday meant that she worked through lunch and recess because no one told her it was lunch time. She often has to move to a different room to finish her tests because she needs more time. On Tuesday she was ecstatic because she finished without even needing to move to a different room. 

Sarah had her first dress rehearsal at the actual venue for High School Musical Jr. It went well and I somehow survived seeing her navigate the steep stone steps leading up to the auditorium. She was steady and fine, but I still wonder if there isn’t a set of less steep, less stoney steps for everyone to use! The rehearsal schedule said parents aren’t allowed to watch, but when I dropped her off two people said I was welcome to stay. I didn’t that day but I will this Thursday. I’m feeling nervous about her staying healthy and well for this whole week when she will have later bedtimes than usual because of the rehearsal schedule. Last year she got sick after the first performance of Peter Pan Jr, so only got to do the one night. So fingers crossed and any good wishes and prayers are welcome for this upcoming week. 

Last night Carl and I went out to see an improv show. It was a late performance so we had the parents of Amy’s BFF stay at our house till we got back at 11:30. Sarah was already tucked into bed before we left. As a precaution, I explained what to do if Sarah had a seizure, but said the chances were incredibly small because we have increased her meds and usually her seizures are around 3 or 4am. Did I jinx the situation? At 3 am Sarah had a seizure. It was the usual sort for her where it takes her about half an hour before she talks to us and she is wobbly on her feet but extremely determined to get to our bed. After some snuggling next to me she then became equally determined to be in her own bed. She seems to be in good shape this morning, but I’m sure we could all use a nap later. It always takes some time for Carl and me to fall asleep after such an episode because of our own adrenaline spikes. I’m also frustrated by this seizure because it seems like increasing Sarah’s medication didn’t actually take care of the situation. Carl and I both independently started wondering if we should ask the neurologist about putting her back on the med she used to take in addition to the one she’s on now. 

Yesterday was a big day for all of us. In the morning Sarah’s seasonal allergies were in full force and she waited longer than usual to have breakfast, so by the time she did eat she wasn’t feeling great. We wondered if Kid’s Marathon plan could happen. It did! But it felt like a last minute thing regarding Sarah’s participation. I ran errands and cleaned the house while Carl and the girls did the one mile kid’s marathon. Sarah got a high five from a Pierogi as she was valiantly persevering to finish the race. Carl went at Sarah’s pace while Amy zoomed ahead. After that adventure they waited in lots of traffic on their way to a bakery to celebrate, with Carl promising Sarah they could go to Rita’s later in the day because they didn’t have time after the bakery. Amy had a playdate with school friends and she walked in mere minutes before they arrived. Sarah and Carl had a long nap and I went for a long walk, unexpectedly meeting one of my best friends as I rounded a corner! It was a glorious sunny day and I was relishing my ability to walk easily again.

It has been a month since I started working with my new myofascial restructuring practitioner. I’ve had three appointments and feel like I have my body back in a way I had forgotten was possible. I also stopped wearing the sneakers that I thought were the most helpful pair of shoes I had. I got a pair of barefoot shoes and that plus the homework I do for my practitioner have made all the difference in the world. If I put on my old sneakers my leg starts bothering me in the same vague way that it had been for months. If I’m in my barefoot shoes I can walk for over an hour in the woods comfortably! I can walk at a pace that feels like my old speed, long before my hip replacement. And now I don’t think about my hip or leg with every step. A few months ago I felt like I had such a setback with my fall and that maybe PT and working with my trainer were overdoing things. Now my trainer even noticed a difference in how I’m moving. He even had me do a tiny jog and I could!

Something has been amiss with the heating system in my office for a long time, but it was never intolerable until this week when my office was probably 90 degrees. My office is in the basement and the thermostat is in my suite-mate’s room. My room is always notably warmer than her room. Her thermostat read 88 degrees. We have both complained to the building manager and have been told someone will look into it. We complained on Monday and I asked to be told when the work was scheduled. I have heard nothing. On Friday I opted to see my clients at home (not ideal but do-able) because I couldn’t bear the thought of doing four hours of massage in 90 degree heat. My clients would have been uncomfortable too.

The last part of this slightly unusual week was that as Amy left to go to school on Friday morning, someone sat up from our porch swing! It was a man who said he didn’t have a home and was just trying to get warm (it was 37 degrees). Perhaps I should have taken him to my office! I assured him that he could stay and I got him some food and blankets. He slept for 4 hours and then I gave him a warm meal. He spoke English but Spanish was his primary language. I speak some Spanish and can understand much more than I can speak. So between us we did alright, but if the timing for when he was awake had been different I would have called Carl’s mom to have her help communicate since she is fluent in Spanish. Anyway, the man was very nice and seemed quite moved by my kindness. When he left he took all of the blankets with him, so I’m glad I knew that was a possibility when I selected which ones to provide. He certainly needs them more than I do. I can only imagine all of the challenges he has faced and all that are yet to come.