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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the unravellings

In all of the 12 previous times when I wrote about David’s Death Day Anniversaries, I have never thought about or made mental notes for the contents before I open my lap top and started writing.  Many times I wrote and then edited fiercely before posting, but that was all.

This year is different.

Every year is different. This year is different in an unexpected way.

First off, last night I dreamed of Jimmy Brennan, a high school friend who I had a crush on while we were both doing variety shows at school.  He was not a close friend; however, we had some wonderful talks together.  We lost touch but beginning in my 30’s, I would have dreams in which Jimmy appeared just before some notable change happened in my life.  The dreams were never noteworthy, rather something ordinary, visiting a place I knew, walking through rooms, ordering in restaurant. And Jimmy would make an appearance. Again, nothing noteworthy.  He would stop by a table at the restaurant and chat, he would be sitting in some living room I walked through.  It took years to notice and put it together but eventually, I noticed that these appearances presaged some change. Always, the dream came before I knew what the change was but there was always a change. I came to view Jimmy Brennan, in his charming high school form, as my personal John the Baptist.

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small things

Today is a day of doing small things for any number of reasons.  Julia’s continuing bad mood limits activity.  There is a building up of small tasks that have accumulated and feels like a much larger burden.  I am expecting dinner guests, my neighbor from upstairs, tonight and I have light duty as to the cooking.  And so, small things—gym this morning which was good for exercise and whose aim was to mitigate the foul mood that a Julia woke up with.  It didn’t work.  Cleaning up and pruning the window boxes on the back porch and washing the porch with the hose. Making cookies to go with a fruit dessert that I usually just make during the holidays for tonight.  Hanging pictures in the hall that have been on the floor for two weeks. Writing a few email, begging for help with Julia’s services.  And now, sitting down to write just a little bit.

I have had trouble sitting down to write.  Not finding the time when I am at my best and wanting only to veg out when I am tired or feeling overwhelmed.  And that is most days.

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this is my brave

Last winter, I was part of Flourishing Families, a 6-week program supporting caregivers of young adults who live with mental health and/or substance use conditions to heal and build sustainable, health-promoting relationships. The program is part of Boston University’s Center for Psychiatric Rehabilitation. In March, our BU facilitator announced that This is My Brave would produce a storytelling night based on stories from Flourishing Families. I submitted a story and spent a bit more than a month rehearsing via Zoom with seven other storytellers.  We met in person the afternoon of May 23, and that evening we told our stories. It was wonderful to tell and listen, and most of all, it was an honor, a blessing and so cool to meet and spend time with these marvelous women plus our BU facilitator and our My Brave producer. 

The full show can be found on YouTube at: 

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father’s day

Sometime a bit past noon.

We have had a month of ups and downs and I have a lot to digest and report, but today is Father’s Day. 

Trying to remember if we had traditional Father’s Days with David, I think they were mostly brunch, sometimes out, sometimes with Marcia and Matthew who was a youngster during those years, and then a movie.  Matthew and David had movie snack rules—nothing in the mouth until the movie began.  Not during previews or ads, not right after we found our seats, when the movie began.  The rest of us—myself, Marcia and Cheshire—would complain and moan.  David and Matthew never relented.  It was a sweet boys against the girls debate and we always let them win.

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expertise

I wrote this piece for the memoir class I am taking. It is the last of five garden related pieces. I is also where we are today, where I am. And so, I’m putting it here.

Julia’s new, shorter hair cut. So very happy she finally agreed to it.

I am a gardener.

I notice what goes on in gardens: flowers and vegetables and herbs, perennials, biennials and abundantly blooming annuals that don’t stop until the first frost.  I notice trees and bushes, decorative, productive and the volunteers that can be the bane in a gardener’s vision.  I notice what the bunnies are eating, what cannot survive without six hours of sun, what the weeds are choking out and what thrives in a microclimate close to a dryer vent on the north side of a house.  I know which tulips were planted as bulbs last autumn and which were planted full grown two weeks ago along a walkway with a carefully planned casualness. I admire the window boxes on Beacon Hill—lush, overfull and overflowing, miniature landscapes in harmonies of pinks and creams and lavenders punctuated with trailing greens.

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the diner

Nothing like falling into a place. And entire world whose comfort is undeniable.  How long has it been since this has happened to me?

Maybe forever.

I credit today to the slow recovery from Covid.  Both Julia and I tested negative this morning—she probably would have tested negative days ago.  And me too, probably, but I waited.  It didn’t matter to wait.  We were being very careful—masks and going to very few places.  And it was well past our quarantine time.  

But anyway, this morning I woke up, still coughing but otherwise restless.  It was and is a dreary almost-spring day.  45 degrees, rain with shades of gray above.  My upstairs neighbor had planted daffodils around the house that are waving their yellow heads and the Covid fog, which I hadn’t realized I had, is beginning to clear. (I guess it could be late winter foggy head or old lady fogginess but I’m blaming Covid today.) 

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surfacing

4:00 a.m.  My own witching hour.  Up in the dark and out of bed, leaving my VNM sleeping peacefully.

We, Julia, VNM and I, have had Covid this last week.  We were all ready to go to the wedding of the daughter of a dear friend, trek to Cleveland to party and see old friends, when I felt ill on Wednesday morning.  “Felt ill” lacks the drama of the experience. It was more like getting slammed to the ground and wrestled into stillness. I managed to get Julia up and out, dropped her at Elliot House, drove back home and crawled into bed.  I begged out of a class to make Yaprakia and skipped choir rehearsal that evening.  I asked Julia’s therapist to pick Julia up, stay out of the house with her and drop her when their session was finished.  During the day, I held out hope that I would recover quickly from whatever it was that I had and still get on a plane on Friday; however, by the evening I gave into the inevitable and by Thursday morning, I tested positive for Covid and cancelled all our plans.  I was pretty sick—temperature, head ache, body ache, awful cough, loss of smell and taste and a few other symptoms I’d rather not describe.  During the next four days, I ran through almost everything, apart from severe breathing problems.  I was fortunate to call my doctor in time for a Paxlovid prescription and this morning I took the final dose.  Symptoms did not retreat as quickly as they came on but after three doses, I began to feel more myself albeit very tired and still coughing.

VNM fell to the Covid test on Friday, and Julia on Saturday.  Julia has had a deep cough and had taken a lot of naps, but otherwise is symptom free.

So, we’ve had a long weekend of naps, soup, cough and cold medication, water and juice and tea and more soup.  

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