Tag: summer

wednesday

I’ve left breakfast dishes in the sink this morning. On purpose. If I was my mother I would have washed them as soon as Julia left for the day. If I was myself ten or 14 years ago, I would have washed them as Julia got into the van.  Back then, I needed to control something and washing dishes was a doable task. An easy success. And I needed success. 

Now, I am willing to let them slide. To let them wait until . . . . until later.  I will wash before I go to bed tonight. So, okay, I still have some need of control.

Instead of washing, I poured a glass of clean water, taped off a page of my sketchbook and spritzed the water colors. I am trying to paint. I am painting. I cannot seem to sit in meditation these days. I wander, I obsess, I plan. I slip too easily into past and future. I bring my mind back time after time, but I am not patient with myself, with the practice that I’ve had for years.

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bits

This weekend is FanExpo 2023 (formally known as Comicon). On Friday evening, Julia wore fetching a new Jedi uniform. We walked around the Expo taking in the sights, posing as part of the Jedi attendees and sitting in on a few panels. The last one about the Kawaii culture of Japan—a topic that may be useful in another few weeks.

We worked the Expo on Saturday. Last year, Julia was placed as a room monitor on a very slow floor. There were panels every hour but there were only 30-40 people who came to any one of them. It made for a pleasant 2 days of work that Julia could actually handle pretty well by Sunday. This year there are less panel rooms and we are on a busy hall of three panel rooms. We are two of six people working the rooms and sometimes it was too much for Julia. Still, she was willing and relatively focused. She gave some wrong directions when asked but I’m sure she is not the only one doing that.

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post arts camp

Julia finished her month of arts camp. She still doesn’t have her phone and her internet use is limited. Sometimes her behavior is challenging but overall, she is returning to our real world. PYD, who ran the camp, is staffed with supportive and loving people and Julia responded well to their kindness and attention.

Next week, she doesn’t have a schedule but I am not sending her back to Elliot House. She will go to a sleep-away camp the following week. We have a tour of a program on Monday and during the week, we will go to the gym often. Tuesday, her wonderful therapist, Michelle, is taking her on Codzilla. Michelle also bought her a pair of boxing gloves and learning boxing is an ongoing activity with the hope that it . Perhaps this will be a good outlet for some anger.

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slivers of light

After a lot of dark days, a few lights appear.

First, some sobering reality.  The day program visit of two weeks ago that did not go particularly well, resulted in a rejection due to impulsive behavior and Julia’s use of an hour of the behavioral specialist’s time.  The rejection did not surprise me but it did scare me and I went into full catastrophizing mode.  What if this is every interview, every day spent visiting a new programs? 

The woman from a third program who visited Julia at Elliot House a few days before the unsuccessful visit to the second program was slightly more encouraging.  She could see why Elliot House was not right for Julia, pointing out that she did not see any sign of relationship building going on, something that Julia thrived on in the past.  For Julia, that is right on, (for a more independent and self-motivated person, Elliot House would be a very different experience). She told me that comparing Julia at Elliot House with how Julia might be at her program was an apples-to-oranges comparison, impossible for her to make. The woman offered a tour of her program for Julia and I and possibly a day visit to the program for Julia a few days after the tour.  I asked to do both when Julia finished her month at the arts camp she is attending hoping that some of the luster of the full internet days at Elliot House will be worn off.  Fingers and toes crossed.

It has occurred to me that for all the lip service by professionals acknowledging the regression and set backs that have happened since the covid shut downs and lack of programming, allowance for the behaviors stemming from those regressions is lacking.  Running through my brain is the idea that Julia from 2019 would have been more able to visit programs.  Anyway, I think that is so.  My hope is that I get a return of Julia’s 2019 sense of herself, but I can’t make that happen alone.  I need a program that will support her and foster the re-growth.  At the same time, that special program has to be willing to live through Julia’s transition to the program.  So far, I am not coming up with a program willing to do that.

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prayers & carrots

Leftover 4th of July firework

Prayers!  Maybe a few thoughts too but definitely prayers!  Please. I don’t necessarily believe in a micromanaging god that will rescue me although I’ve always been partial to the BVM.  A touch of divine intervention would not go unappreciated.

Backstory: Months ago when Julia’s transition program began, she was adamantly opposed to talking about future work, employment, volunteering, etc.  This went on for what felt like a long time.  Some of it was fear of new experiences and more transitioning and some of it was just plain digging in her heels.  She digs deep.

The one employment that Julia was always willing to talk about was working at a Comicon—now rebranded as the FanExpo.  This is something that she has mentioned in her IEP meetings for years now, and something the I dutifully tried to talk her out of as an unrealistic aspiration. I mean, Cons are 3 days long once a year in any given place.  This is not a career!

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summer bounty

A big bowl of tomatoes—so many that I can save a small bowl for the next two days (there are more ripening behind those I picked today) and throw the rest into a big pot to make a simple sauce that I will freeze for the winter.  I have refrained from cooking inside during our heat wave—hot food never tastes good to me when it is hot—preferring to grill a bit of protein on my small electric grill (A nod of thanks to Cindy for gifting the grill to me when I left Madison.) and making huge salad with bought greens and herbs from the garden.  Everything from the garden has more flavor and vegetables melt into one another so much more companionably than their supermarket cousins.

I let the tomatoes cook down for hours and what is left is the sweet essence of summer.  I expect the pleasure long after I’ve pulled up the plants and cleaned the garden for winter.

We are quiet today with nothing planned.  Some drawing, a load of wash, some editing for me and reading. Julia plays her music—Ukulele chords are just beginning to make an impression and she has a new cello piece.  Then, Julia picks up her basketball and bounces it around the house until she becomes bored.  She wants to go to the small park around the corner.  She wants to go alone, but capitulates to my entreaty to go with her and sit far away.  I am.

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joni

“The wind is in from Africa, last night I couldn’t sleep . . . my fingernails are filthy, I got beach tar on my feet . . .”

Once, the reedy soprano slid up and down her registers as quickly as her fingers slid around on the neck of her guitar.

She had long, straight hair, as fine as mine but very much blonder. It was flung over one shoulder with a deft flip of her head. Slight with a sweet, high voice concealing genius and gravitas.  (Although now I wonder why genius does not routinely speak in a breathy soprano.)  Hippy clothes or terribly cool apparel—cooler as she got older. Never quite settling down but moving in the company of splendid and beautiful musicians. Never quite molded by the commercial music scene but brilliant enough to wedge her way in, to command attention. Singing about quitting the crazy music scene and then going on to write and sing more and again.

Joni Mitchell sang at the Newport Folk Festival Sunday night as a surprise special guest of Brandi Carlile. It was a carefully orchestrated appearance, her first public performance since a stroke and brain aneurysm in 2015. A friend posted an early morning YouTube video on her Facebook feed. I clicked on the link and then got lost down a rabbit hole of videos catching Joni performing song after song—the highlights of her old masterpieces and the kind of standards that I loved to sing—and playing her guitar.  Her voice—low and chesty, a voice that had come back from near death, an old voice so rich with meaning and inference and innuendo that it was like some rich, decadent dessert.

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solstice

A new season.  The longest day of the year.

Solstice songs

Julia and I ate breakfast on our back porch—something she loves to do that I usually drag my feet about.  Too cold, too hot, too buggy and it is morning and we need to get on with our day.  But today, we woke up on time—Julia responding to the google wake up on the small speaker, something we have been working on this entire school year, something she sabotaged last week, something we had a talk about at Community Connections (a serious conversation at her program can make more of an impression than a similar talk at home), her program, and something that she encouraged me to reset (although I’ve only reset one of the three speakers she disabled—damn  my holding on by my fingertips device knowledge.) lat night.

So, she woke up, did what she needed to do (although she still needs some kind of list to make sure she remembers everything.  And any kind of reminder is anathema to her) and there was time to eat on the back porch.  

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heat wave

Vegetable gardening.

A 3-day heat wave was predicted.  It might last longer.  It will not break sooner.  We missed the first heat wave here and lived it in Maryland where our nights were air conditioned.  Then, there were a few hot days about a month ago and our air conditioners were still in the basement.  I could not bring them up alone and I have not yet found a handy person like my Ed of Madison who knew my house better than I did.  Of course, this is not my house, except for the term of my lease, and my handy person tasks are few.

Cheshire and Justin brought one unit from by basement at the end of last week, just in time for yesterday.  And I did what I have done since I moved to Wisconsin and met the cold:  I closed up the house, windows closed, blinds and shades down, doors to rooms not used closed tight.  And left the air conditioner on through out the night.  This is so odd for me, I sleep with open windows, but the house is cool, even the bedrooms are tolerable.

Good, hardworking little machine.  Thank you.  And thank you for the grace of children who will do those tasks I am unable to. 

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miracles & lessons

Our set on a cloudless evening

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.”

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