April 30: Height, Fights, and Wishes

This is a busy time of year for Sarah (and me as her chauffeur). She has rehearsals nearly every week day for her school musical, except on Mondays when I have her skip is so she can have her piano lesson. A week from today she has her piano recital and then May 12 and 13 she has performances of High School Musical, Jr. If you live in Pittsburgh and want to attend the musical, let me know and I can give you more details. Her year as an 8th grader is winding down with her graduation mass on June 2 and her last day of school on June 6, with dismissal at 10am. For some reason I never remember year to year that her last day has such an early dismissal that it almost doesn’t seem like a school day at all. But it does allow students to say goodbye to their teachers and bring home their things without any other school activities happening. Although I’m excited about her moving to 10th grade next year at a new school and with a known group of friends, I am also sad about this chapter of things ending. She has been at her current school for 6 years and her two main support teachers have been so thoughtful and creative on her behalf. I am always moved to tears when I think about how her current teacher attends every rehearsal with Sarah so that she and the other kids from her resource room can participate in the musical. She really helps Sarah navigate everything and we notice that Sarah has a harder time when this teacher isn’t in school. So my fingers are crossed that next year’s teacher will be equally wonderful.

Amy continues to grow taller and sometimes I swear she grows an inch overnight. Unfortunately this sometimes leads to more injuries as she operates her longer limbs. When I hurried her to come downstairs because she needed to leave for the bus Friday morning, that resulted in her falling down the last several stairs. I didn’t see it so I don’t know what happened and she wasn’t sure either. I think she has slipped on the stairs at least 3 times over the past year and her toes routinely get stubbed as she moves around our house. I won’t be surprised if she ends up being taller than I am. 

I do think I’m standing taller sometimes though, thanks to the work I’ve been doing with my myofascial restructuring practitioner. One morning when I arrived at my office I thought someone must have lowered my table. No one had, but I felt taller in relation to it. My leg continues to feel more and more normal and I have been able to go on longer walks more comfortably than I have been in a while. 

Sarah and I have been having an equal mix of snuggly connected times and struggly fighting times. I know there must be more things I can clear out within myself so I am less reactive when she resists what I think is a reasonable request, but I also just feel so mad in general that she can’t do some things easily the first time I ask. Yesterday the girls had bang trims scheduled. They knew this. We had been talking about the plan for the day. But I forgot to account for how Sarah always will ask for a nap right when I say it is time to leave for something. So I should have told her 30 minutes before we needed to leave so that I could have said yes about a nap. Instead, I heard her happily playing and assumed all would go smoothly when I said it was time to go. It did not. She whined loudly in protest about not wanting to change to regular clothes and about wanting to nap. I angrily said that I would be leaving in ten minutes and she could come or not but she had to be dressed. Then she yelled that she wanted to go. This exchange had many more loops than those that I wrote, but all of the same feel with louder expressions from both of us. She did in fact get dressed and we left on time and got bang trims. But why couldn’t she just have done her part easily the first time I asked?! 

There were other times yesterday when I felt trapped by her requests, made in a whining and stubborn tone, knowing that if I said no then I might lose the whole plan altogether, but also knowing that I needed to be consistent with some rules (eg. Wearing clothes rather than pajamas when out in the world). When these requests came I said that I felt trapped and that I wasn’t going to answer. We were in a store and I wanted to leave peacefully without getting into a huge row there. When we actually arrived at our next event, which was a graduation party for a past Sarah-Rise volunteer, Sarah was easily amenable to staying in her clothes as long as she could carry her new pajamas in a bag and keep them with her the whole time. She carried the bag with her as she played on the swings and slide and as she and Amy picked bouquets of dandelions. They each spread hundreds of wishes in the air.

Lately when Sarah gives me chin presses (pressing her chin onto my head) she often opens her mouth and tries to put her teeth on my head. That’s not what I want and we have established this many times over. In fact, the first rule in this household is “No Saliva On Mom.” Carl and I were laughing together about how I could cross-stitch this and hang it in our entryway. When people come in and are taking off their shoes we could point to it and say, “I know this may not be how it is in your house, but in this house…"

It’s tricky when I feel like I’m in a mode of surviving interactions with Sarah rather than enjoying them. I’ve been feeling this way often for the past few weeks, so this week I did make more of a concerted effort to be present with enjoying our easy conversations and moments. Last night after she was in bed she called out for me. I went in.

S: What are you doing?

J: Watching a show.

S: What are you watching?

J: The Great British Baking Show

S: With Amy?

J: Yes

S: Have fun watching the Great British Baking Show with Amy

!!!! That was so many loops of clear, easy conversation! And that was after Sarah had been sleeping for a bit. My heart felt nicely warmed.

Regarding my book submission… I did hear back that I passed the first hurdle that is basically: Maybe vs No. I was designated as a Maybe and that means they will take a more thorough look at my materials and get back to me in three or four weeks with either Yes or Yes but do things or No. So fingers still crossed, but I’m delighted to at least have crossed the first hurdle. Maybe I should have made some dandelion wishes myself!

Lots of love to all of you.

April 23: Book Submitted! Also, Rollerskating and Cheering Tigers

I SUBMITTED my book!! That means I submitted the first fifty pages and detailed summaries of every chapter, plus a summary of the book as a whole to She Writes Press. It is a hybrid publishing company so somewhere in between self-publishing and going through a traditional publisher. I still need them to accept my book and want to publish it, but I will have a bit more control over the whole process after that. And now I wait. It will be at least 6 weeks or so before I hear if they want to work with me at all.

Sarah likes to talk about how the panda pictured on her wall misses her and waits impatiently for her to return, tapping its paw and pressing its nose to the window as it watches for her. I feel a bit like that panda. Has it been 6 weeks yet? Now has it been 6 weeks? 

Yesterday Sarah was watching basketball with Carl and created many digital drawings of Baby Tiger playing basketball, being cheered by multicolored tigers in the stands. The earnest joy that can come through a smiley face or stick figure never ceases to amaze me. 

This morning the girls had a great time playing Mario Cart with their uncle. While I marveled at how my brother could join us virtually even when he lives many miles away, he gently chided me that there is thing thing called the internet. 

Overall the week was good in terms of the kids, school, rehearsals, swim lessons, and piano lessons. Amy started roller skating in one of her classes at school. She is almost as tall as I am when she is wearing her skates and is getting ever more adept at moving smoothly, even if I still wish I could pad her butt with bubble wrap. Towards the end of the week, I felt like I was rather out of juice, being the grown-up repeatedly when really I just wanted to be done. And sometimes I didn’t even do a good job of being the grown-up, yelling at Sarah because the bus was waiting as she was yelling about not wanting to wear her school uniform socks. Sometimes I have so much easy enjoyment of Sarah and her repetitions. Sometimes I’m able to let her emotions just be there and blow on by, without getting my own feathers ruffled. And other times I am not able to even imagine being a person so unruffled. Perhaps the biggest thing I want to remind my future self is that these hard times always do pass and I find my way back to connected enjoyment again. Very often it is reading my own past words of wisdom that lead me back to who and how I want to be. I’m still not back to the full ease I prefer. Sarah has been talking (as she often does) about when she wasn’t feeling great at school or when we heard her making seizure noises. Or she goes slowly on stairs and says that her hip hurts. When I ask if she is pretending to be me or if it is real, she says it is real. But then other times she moves as if nothing is wrong. The hardest part is feeling like I can’t trust what she says. Real and pretend may be slightly mixed up because she sometimes asks me to do a real sneeze like Daniel Tiger’s mom. And yet, of course she is asking me to pretend to do something real. 

Luckily Carl has had energy and space for all of us and all of our feelings lately. He has also put in countless hours editing my book and giving me thoughtful, helpful feedback. Sometimes I protested and grumbled, but he was usually right and I know the book is better for all of his input.

I hope your days are going well and that you feel like you have multicolored tigers cheering for you from the stands.

April 16: Walking Comfort and a New Bed Frame

I know this update is coming later than usual. This morning a friend of mine who does myofascial restructuring was working with me, Sarah, and Amy. I had worked with him once already to help my right leg and as of a few days ago I was noticeably moving more smoothly and comfortably than I have been for a few months. I am back to walking comfortably for many blocks. I am in awe of how much this person knows. I was impressed with his work with Sarah and Amy as well. With Amy I can see how the work moves her into more strength and stability. The plan to help with her scoliosis is to work through her interest in gymnastics. She only does cartwheels and handstands leading with her right leg, which may have contributed to an imbalance of muscle use. So the plan is to work towards her being able to do cartwheels and handstands leading with her left leg. The last bit of Amy’s session involved some exercise equipment we have on our second floor. When we came downstairs Sarah was already lying on the massage table ready for her turn! We will have another appointment for all three of us in two weeks. 

Yesterday Amy had a playdate with two friends. After much play in our backyard, they decided to make lemonade. That turned into having a lemonade stand at the corner of our street and giving bus rides in a wooden bus that Carl and the girls made years ago. Amy knocked on neighbors’ doors to let them know about the lemonade stand so in short order the trio of friends had sold out.

We also switched Sarah’s bed frame to one that matches Amy’s - a set that Carl grew up with. Sarah had been using the bed I grew up with but it is slightly higher and has a decorative frame that means rather pointy spires on the ends. The reason for the bed change was that on Friday night Sarah had a seizure that caused her to fall out of bed. That was a first. We don’t think she hit anything on the way down, but we wanted to make the distance a bit shorter if only by an inch. We are waiting to hear back from the neurologist about increasing her anti-seizure meds. Clearly I didn’t knock on wood hard or long enough when we saw her neurologist on Thursday and I said she hadn’t had a seizure since March. She is ok, but needed many naps yesterday. Naps are common for her on weekends anyway, but we could tell she really needed the rest. 

Last night we saw some friends from Carl’s grad school days that we haven’t seen in years. It was so much fun hanging out on our deck and eating pizza. It was a good reminder that we don’t have to plan anything fancy to have company over - that is what pizza is for! 

Now to work more on my book submission form because I think I am close to actually being able to submit to a hybrid publisher! The book is even under 100,000 words!!

When I said I wanted to write my Sarah-Rise Update, Sarah said she wanted to write one too. Carl helped her start a document and she wrote many words such as “Baby Tiger” and “Crocodile.”

April 9: Hip Hitch, Scoliosis, and Florida

My right leg continues to not be as easily functional as it was even a few months ago. I don’t know if it was overdoing exercises and PT and or my fall. But I’m definitely not walking as well, painlessly, or as far as I was before. This has been disheartening and worrying. I just started working with a new bodyworker and I’m tentatively hopeful. His approach is holistic and overlaps with much of what I know and do, but is also quite different from anything I’ve yet experienced. 

I’m going to have this same bodyworker work with Sarah and Amy. Sarah, because her gait has always been slightly awkward especially when running, and because maybe the work could also change her ability to track better with her eyes. Amy, because at her recent well-visit she was diagnosed with scoliosis that is notable enough to send us to an orthopedic doctor. I’m surprised that I hadn’t noticed Amy’s scoliosis because now that I see it, it is so obvious. I want to do massage and Alexander with her right now! But we are on vacation and she also doesn’t particularly want me working with her, at least now. I’m trying not to worry about it because when I was pregnant with Amy I promised myself I wouldn’t worry about her, having expended so much energy and worry regarding Sarah. And yet, I can’t pretend this isn’t a thing. 

We left for Florida on Wednesday for spring break. Our flight was supposed to leave at 4:30 but was delayed until 9:15! Unfortunately the delay wasn’t declared until we were at the airport. As we weee hurrying to dye eggs before we left, a bit more time would have been nice. All of the walking in the airport while wearing my backpack was difficult for me, but the girls handled the delay extremely well overall. Luckily they love playing on the moving walkways and enjoyed some time at the kid play area, even though it is made for much smaller individuals. Still, the theme is Daniel Tiger so Sarah loved it. We arrived at our airbnb at 1:30am! 

Carl discovered Proino (that means “breakfast” in Greek), our new favorite breakfast restaurant. They have delicious crepes bursting with fresh fruit, whipped cream, and English cream. Every day Amy gets their banana and strawberry crepe with chocolate drizzles. Sarah always gets a toasted bagel with cream cheese. Carl and I vary our choices to combine some sweet and savory. All of us leave stuffed and content. 

Because breakfast has felt so substantial we usually skip lunch and just get some ice cream after a few hours of playing on the beach. After ice cream we head to the pool, then shower and go to dinner. I know, it’s a rough life! This morning Amy said that although she loves all of this, she is ready to get home and have more chill days! For the rest of us our days are super chill, but for Amy she plays non-stop in the waves and pool. She swims and uses her boogie board and does hand-stands. In the pool she jumps and flips into the deep end repeatedly. 

One night when we went to pay for dinner we were informed that someone had already paid for us! That has never happened to me and we have no idea who did so or what moved them to do it. But what a lovely gift!

The girls were surprised this morning to discover that the Easter Bunny visited our rental condo last night. Instead of baskets, each needed to find a hidden gift bag and there were also chocolate eggs and plastic eggs filled with jelly beans. As usual, even though the hunt ended hours ago, there are still some eggs yet to be found. We are also going to keep re-hiding some eggs just to be sneaky and see if Amy notices our trickery. 

April 2: Tons of Cleaning and a Swimming Breakthrough

When Sarah swims she rarely gets the full arm movement going and I often think it is helpful for a teacher to physically move her arms for her so she can get the feeling. So far her current teacher hasn’t done that and I haven't yet suggested it. This past Monday the swim teacher was unavailable but we went to the pool anyway. I stayed near Sarah as she practiced swimming and attempted handstands. Amy enthusiastically came up with a cheer routine celebrating the Polar Bears, because Sarah likes to pretend she is a swimming polar bear. Amy also cheered for the Pandas, because Sarah always loves pandas. After many minutes I realized that I could hold onto the wall and do some kicks to get a little exercise myself and work my glutes, which is helpful from a PT perspective. Unexpectedly, Sarah immediately joined me. Then we stood and she let me move her arms in big arcs many times!! Amy and I cheered about how the panda was doing big reaches for bamboo. Sarah also talked about being a crocodile. She loved my deep and exuberant “Yayuh!” She let me coach her about letting her elbows be open and relaxed so her arms were straight. I felt like I was helping someone with an Alexander technique lesson, feeling what she was doing and guiding towards change - and she was open to it in a way she rarely is. This was the first time I have thought that when she finishes the regimen of pre-paid swim lessons we will stop with lessons and I will be her helper. This might sound so obvious, but usually she has resisted most input or guidance from me in the pool. 

Amy’s friend group came over for a photo shoot to get a picture that Amy wanted to write about for a school assignment. It felt like a minor miracle to coordinate everyone on the same day and time with just a few days notice. Amy has had a lot of homework lately and still has some to do before the end of spring break. Since Sarah still has two more days of school before spring break, Amy’s goal is to finish her assignments by the time Sarah starts her vacation. 

Sarah had her well-visit with the pediatrician and the experience felt more frustrating than usual. The last time we had seen this doctor was when Sarah was having all of her phlegm and acid reflux and vomiting and lack of appetite issues. So I understand and appreciate the follow-up questions about that. But, the doctor seemed focused on how Sarah hadn’t regained the weight she had lost during the troublesome months. I am not concerned at all. She is a healthy weight for her height and she eats regularly, easily, and healthily. I think the doctor was agreeing, but also made some comments about Sarah’s low weight. She is not quite 4’10” and she is done growing taller! So if she stays her current weight for her whole life that is fine. I don’t expect a higher weight just because she used to be 5 pounds heavier. It is possible that looking at her growth chart triggered past feelings from when she was very young and little and diagnosed as failure to thrive. I was also stressed at the appointment because it was scheduled for 10:15 but we weren’t even taken back to the room for half an hour. I had a client to see and normally would leave my house at 11:30. Instead we were walking away from the doctor’s office at 11:30! I had to get Sarah home, make her lunch, and then head to my office. It all worked, but was a closer shave than I normally experience. Lastly, on Friday I just didn’t feel like I had the mental and emotional ease around Sarah’s repetitions that I usually do. When she repeated with an upspeak the last few words of everything I said, I thought I would go out of my gourd. This is quite possibly because the day was overly packed and I was juggling too many things. It’s a good reminder that I need more breathing room so I can be kinder and more available to connect with Sarah, which is a better experience for both of us. 

We got a new roof!  It was very weird being in the attic to cover things with tarps (thanks to my parents and brother for suggesting coverage and to Carl’s dad for the extra tarps!) while hearing people walk right above me. As I watched the roofers throw shingles towards the sidewalk I said, “holy Sh*t!” with each bundle that flew past the window. A dumpster was parked in front of our house for 24 hours and we didn’t want to let that opportunity go to waste, so Carl and I spent hours clearing out old junk from our basement and adding it to the dumpster. There are two cellar spaces under our front porch and they are cleaner than they have ever been. I vacuumed to get rid of debris and bugs and cobwebs that had accumulated over the years and we realized that this was perhaps the first time in almost 12 years that the cellar had been vacuumed. As Carl said, from now on we will vacuum that space at least once every twelve years whether it needs it or not! It is lovely not to duck to avoid the hanging bug carcasses every time I go in the room. I also spent hours organizing the kid toy and art project supply area. Slowly, slowly our basement is becoming something I don’t want to scream about every time I go down there. 

Carl also fixed our oven situation! You may recall that we got a new oven but it wouldn’t fit in our island because the island cut out was just a tiny bit too small. Carl called multiple places that specialized in cutting granite counters. None of them would do a home visit. I asked our carpenter but he didn’t want to worry about cracking our counter. So, borrowing tools from his dad, Carl took care of the situation himself. He made a tent out of plastic to contain the dust, used a diamond-sander with a vacuum attachment, and enlarged the island cut-out. Then he moved the oven almost single-handedly. He asked me to help but it was the sort of situation where I tried lifting and I was working hard but nothing was moving. It is so nice to have an oven in the right place again and to have our usual walking paths in the kitchen usable. 

Yesterday Amy and I spent many hours cleaning her room so now you can actually see her dresser-top, she can work at her desk, and there isn’t an ever-growing pile of miscellaneous items on the floor. Carl had the helpful perspective that we want to consider how we want a space to be and what we want to do there rather than evaluating the usefulness of any given item. Because many items are useful! But that doesn’t mean they should stay in one’s desk, shelves, or house! I have parted with posters and doorstops that I have saved for years. I like them, but they have been unused in the basement and I don’t anticipate ever needing a doorstop or having space for said posters ever. So they have moved on to new homes thanks to the Facebook Buy Nothing Group. 

Carl spent 2 1/2 hours vacuuming the attic yesterday to clear the debris from the roofing project! While he was finishing, Sarah decided to investigate. She immediately found my memory box for kid items and retrieved a pair of her outgrown snail pants. These are sized for an 18 month-old but she wore them as biker shorts for years until finally wearing out one pair entirely and outgrowing a replacement pair that I found. Last night she brought the snail pants downstairs and put them on. They looked like they fit but she took them off saying they didn’t. When I said it was time to brush her teeth and aligners but that she should first wash her hands because of being in the attic, she protested many times before running off angrily to wash her hands in such a way that sprays water all around the bathroom. I don’t understand why a request for hand-washing can sometimes lead to such a clash between us, but it didn’t make for the coziest bedtime connection. Writing this I can see that perhaps it was the snail pants not fitting that set the scene rather than the actual need for hand-washing. 

Sarah loves looking through my book draft, and this morning she said she wanted to write an update at the same time I was writing. I gave her blank paper and I think she maybe copied some words from my draft. She wrote extremely legibly even if it doesn’t quite make sense, “Over the four years different we did keep Sarah Anat Baniel Lessons.” She added a picture of two smiley faces with legs and feet.