This was not the post I intended to write this morning. No, what follows is what I expected to write. It is this morning’s latest catastrophe that I did not expect. Julia turned 21 this weekend and I guess I should have written and posted with pictures before this morning because . . . well, because stuff happens and in this house, it happens like a hurricane or a tsunami.
We had a long, quiet weekend—celebrating with a big shopping at H Mart, an Asian supermarket, where Julia picked out old favorite noodle packs, candies and cookies. We found frozen pork buns and the best frozen dumplings we’ve ever had. She ventured into a jar of kimchi, found BTS merch and of course, we got some mochi. It was a black sesame mochi ball that held the lit candle that was ceremoniously carried into Cheshire’s dining room after we had feasted on Korean take out. We sang, Julia blew the candle out. I wished that we could have some sort of a normal birthday celebration at some future time, at the same time grateful for the generous scraps of what we have.
Julia and I began a new one on New Year’s Day although we hardly made any progress until this weekend. 1000 pieces that when finished will be a Venetian scene.
I love Venice and I hunger for traveling, so it is a bitter sweet endeavor. As I separate the lavender sky pieces from the butter colored Doge’s palace pieces, I wonder and wonder if I can begin to make summer plans. To Venice or London or, Julia’s desire, Japan. I know, the first two are cities and the third a country. Japan would take a lot more planning; I know nothing about Japan. Julia, however, has texted me the address of the park in Tokyo where cosplayers gather on weekends to show off their costumes. We will make that stop.
Last week, an acquaintance on the HILR email list, wrote that she was looking for ideas for a summer trip to northern Italy. I immediately responded, with a longer than expected description of Orta San Giulio, including restaurants, walks, the mysterious island in the middle of the Orta and the hydrangea in gardens in August. My enthusiasm leaking out of my fingers.
Winter break has been over for three day. I mean, this is the third day, and I have this overwhelming feeling of wanting to be alone and quiet. This morning after Julia boarded the school van, I took a deep breath and bathed in the house silence. I did not want to say a single word to anyone, and the usual morning pleasantries to the van driver (who is a very sweet man, by the way) were an incredible effort. Peculiar thing is that Julia has had three very easy mornings following a relatively calm and easy winter break.
The only challenge of the break, and indeed of the coming month (or so), is that she could not do her regular activities. There was no rowing last week and her zoom theater workshop was on break. The rowing class has now been cancelled for at least a week with the possibility of an extension. Oh, how that email read like the first school closings in 2020! The theater workshop which was rumored to go back to live meetings will stay on zoom, starting in February. Both these activities are important to our week, to her sanity. I hate to lose them for any time at all. She will still have meetings with her therapist and her art mentor. And for these, I am so grateful
First day of Julia’s transition program at Community Connections designed to teach her independent living and employment skills. They have a huge hill to climb.
Anxieties of the morning: The van didn’t come (It showed up at 9:15, a half hour late) and it was less stressful for me to drive her than for her to wait for transportation. She brought drawing materials with her to the program and I encouraged her to use them if she has time. Julia has a brand new rash on one arm (although it might be moving to both arms). I don’t know what it is. There is Sarna in the front of her backpack which works to calm the itch much of the time. She also brought her phone which has proven to be disastrous at times but it wasn’t worth a morning tussle.
Home and with not much to do for this weekend. We expect a storm tomorrow and the governor advised all to stay home tomorrow. I am still not used to hurricanes, their warnings and their fierce rains even though I grew up with them. The first one I remember was Hurricane Donna in 1960. I remember weather men breaking into my favorite tv shows and my parents shushing us to listen. And I remember picking up tree branches after it was all over. I remember tv news and pictures of places where homes and businesses were destroyed, and some cars floating down flooded streets. I think it may have been when I realized that humans, particularly my parents, didn’t control everything.
Julia asked if she could take some time to draw this morning, and she is still at it 2 hours later. This is the third day in a row that she has asked for the time. Cautiously, I wonder if going back to therapies that we’ve used before is giving her something.
Back a few months, I wondered out loud to our family therapist what kinds of therapies and interventions were appropriate, helpful and useful to Julia now. Therapies and exercises always call for me to organize and facilitate. When I wondered out loud, I felt tired and feeling like nothing that I had done for the past two years had done much good. When I told her last week about things I was bringing back and things I was exploring, she reminded me that I had asked the question and evidently had come to an answer.
Friday was the last day of Camp Echo Bridge. Julia has only been at this city day camp for two weeks and I think it has been the best part of her summer. It is an genuinely inclusive experience for her. A very healthy mix of typical and kids with disabilities in the younger groups. Julia’s group—the tigers, clearly a name that was made up by some of the boys—was young people 14+ with disabilities; however, it is a smallish camp and the entire camp does some things together. The staff is careful and caring but most of all enthusiastic.
One glitch: One swim day Julia got bored sitting in the grass reading—she didn’t want to go into the water—and she decided to walk from the lake to the school where the camp meets. She didn’t tell anyone she was doing it and when counselors realized she wasn’t there, I hear there was 10 minutes of panic. I can count on one hand, this time included, the times Julia has wandered off from anything. Staff handled it all well and low keyed. Julia apologized and they asked her not to do it again. I think she was also scared when she didn’t really know how to get back to the school.
On Friday, in the sweltering humid, sunny heat, there was a camp show. Each group did something like a skit (or told jokes) and danced to a pop song. No pressure to perform. Julia was willing to be “on stage” with her group but not willing to stand to dance. And so, she sat while others danced. Later, when the whole camp was “on stage”—two poles with a sheet stretched between them on part of the paved school yard—she did dance. And she loved it.
Facebook memories pop up: 3 years ago today, we were at Coogee Beach in Australia; 4 years ago we were cruising in Alaska; 5 years ago we were in the lovely town of Orta San Giulio in Italy and 6 years ago, we were with Julia’s China Sisters in Ohio. We are going to Ohio tomorrow and I hope for some fun. But today I gather my thoughts to write where Julia is these days and ask for help.
This morning I arrived at sudden clarity after months of confusion and muddle, and maybe a little hope that some of my greatest concerns could work themselves out. Nothing has worked out “by itself.” There are no answers this morning, but I can see where we are with Julia’s life, the little that is going well and all the rest.
This was excruciating to write; however, necessary. The four weeks of ESY (Extended School Year) have not gone well. Every week Julia has had some days of refusing to do the work of the day, threatening self-harm at school and having rough mornings or evenings at home. Nothing I have done at home in previous years is working. Before the school year and the new transition program begins, I need to work out some things that help Julia. She is NOT going to blend in and get adjusted by herself. She is NOT going to transition without effort. She is still on high alert and on the brink of meltdown every day. She is as hypervigilent and affected by trauma as she was 12 years ago.
Emergence. I’m reading Rev. Kimberlee Tomczak Carlson’s blog post on the topic. As well as her wise words, there is a quote from Ursula Goodenough, scientist and religious naturalist:
“[T]ales of natural emergence [are] far more magical than traditional miracles. Emergence is inherent in everything that is alive, allowing our yearning for supernatural miracles to be subsumed by our joy in the countless miracles that surround us.”
To both of them, I respond: I didn’t know that emergence could be such a thing. As attached as I am to the metaphor of chrysalis with all its possibilities of gooeyness and dissolving, I have given very little thought to emergence. Yes, I know there is, or hopefully will be, a butterfly at the end of metamorphosis but Carlson shines light on the miracle of emergence, the process of claiming change. She says:
[W]e forget how miraculous we are. The sheer improbability of our existence escapes us, and we need butterfly garden-shaped reminders. Thank goodness there are small miracles surrounding us.”
Last year everything shut down, quickly in a single week. It was a dizzying time of cancellations and closings. During the last two weeks, we are in the middle of openings. I remind myself repeatedly not to forget—not forget how closed we were and how hard that was, not forget how slowly we opened and what an unusual challenge re-opening has presented to us.
I appreciate that Massachusetts is opening slowly with much deliberations. Probably not perfectly, but what has been perfect about this time? The mask mandate expires on the weekend and I am grateful that Governor Baker announced the end of the mandate two weeks before it was to happen. Although very happy to imagine being maskless, I find I have reservations about completely abandoning our facial protections. Is it really that I cannot trust two shots and two weeks? Or is it that I cannot trust that those who will walk around maskless on Saturday are vaccinated? As of today 50% of Massachusetts are fully vaccinated; 69% have had at least one dose. The percentages are higher in Newton. During the weeks between announcement and maskless days, it has been comforting to be in stores and garden centers and see everyone masked. A year of protecting myself, protecting Julia, has left its mark.
Julia put on a red plaid skirt, a green plaid shirt and a tiny white shrug today, together with some anime character knee socks and her white sneakers. The sneakers a concession because she has track after school. When I saw the clothes heaped in a pile on the bathroom floor, ready for after shower dressing, I made my sour lemon face which Julia did not see—those clothes do not go together. And admittedly, if I tried to put them together . . . but then again, I would have never attempted to put two plaids together let alone a dark red and a light green. Julia put them on and they looked okay, interesting even, somehow not outlandish at all.
Julia has her own style. Always. And she is on her own learning curve. I have said these things, thought these things for a long time. The mantra has seeped into my soul and I am beginning to believe it.
Julia will be walking in the high school commencement ceremony in a few weeks. She will not get a regular diploma—something that was hard to give up on when she was in 9th grade and something that I am so grateful that I did not hold onto. I think she might have been coaxed and prodded through the requirements and MCATS at Newton North, but not during these crazy two years, not during her rough transition from Madison in the months before shut down.