Tag: Julia

the ride

This morning, Julia is taking The Ride, Massachusetts’ para-transit service for people who can’t use public transportation or drive due to disability.  She is going from home to Elliot House and back again. She needs to be met on both ends right now.  It is a restriction that can be lifted in the Spring if she does well.  

And this gives me an extra two hours in my day, plus no energy drain from the driving.  I did not realize that there was an energy drain until we came back from traveling.  I had not been responsible for driving for 6 weeks and I felt the difference almost immediately upon taking it up again.

This morning, Julia just left, and I feel the quiet and peace settle over this house like it never has.  Like the old feeling when she was in school and the bus came to get her or she went to catch the bus. I feel rich beyond measure. This is a moving on from the 11 months since she has been without programming.  The Ride doesn’t give her programming, but in a sense, it gives her just a taste of her old school life when she had direction and support.  I didn’t know that she would feel this way about a para bus picking her up but this morning, after 3 rides this week, it clearly does. For the first time in 11 months, I feel like the services cliff that she fell off in January is becoming a ramp.

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auntie duties

Julia has not wanted to have much contact with Wilbur since his first few days. Cheshire and I have been patient and have just waited it out. I’ve spent a good deal of my time with Wilbur during the day when Julia has been at her program. When she has spoken negatively about Wilbur, I’ve been firm that he is a permanent member of our family and that I intended to be a good grandma. I’ve offered that she can stay home when we are able to visit together. She has never taken me up on that. For himself, Wilbur is fascinated by the auntie who doesn’t pay him much attention.

On Thursday, Julia and I met Cheshire and Wilbur at the Discovery Museum. In the baby space, Wilbur was making use of practice stairs, plastic animals, and lots of balls, and Julia became interested. I am so happy to see her and Wilbur together. I do believe that they could be good friends.

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taking up the . . .

Taking up the . . . Like in “the slack.” 

The direct opposite of what I scribbled one day in November 2014.

Rarely do I wake up before Julia these days and get to plunge immediately onto the page.  Into the page?  Okay, so I washed my face, brushed my teeth, made a latte with three shots of espresso—the third a treat for the day—made the bed and then opened the laptop.

The morning light streams into the living room making it almost difficult to type.  I haven’t lived in this house in the autumn but I am almost sure that this is what autumn light will be like.  The angle of summer light coming into the living room has shifted. This new light is gentler, smoother than what has shined in since late May.

Everywhere.  Everywhere all around me, the season is changing.  A few days ago on a walk, Julia and I spotted some brown leaves on the ground.  Very early victims of the transformation or just unfortunate late summer victims of overwatering?  No matter they are the harbinger of change.

Facebook posts aplenty of children being driven to move-in days at their colleges and parents feeling the first sting of empty nesting.  Oh my friends, you will endure and prosper very soon.  Younger families posting pictures of first days of many, many grades. Smiling faces, new sneakers, expectation galore. And hope.

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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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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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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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an equinox

Two weeks old

I went up to Cheshire and Justin’s house on Wednesday with the promise of holding Wilbur for an hour or two.  Two weeks old and not spending too much time with eyes open.  He had a doctor’s appointment earlier in the day and it tired him out.  He nestled in my arms, moving his extremities the way a new baby does—random and without purpose.  Amazing how dear such movements can be.  And I cannot help but remember when his mother was that age and we brought her home to First Avenue in the East Village.

All is well at Wilbur’s house.  Baby sleeping in adequate chunks of time; his bodily functions all working at full tilt.  When else is farting charming? He has a good suck, fills his diaper regularly and cries in protest every time his little body is without clothes. Mama and Papa are content, and not as exhausted as I remember being.

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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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jeremy bearimy

Julia over the weekend at dinner waiting for a movie.

Reading this over, I feel like I am regularly reporting on a pendulum—steps forward and then back again.  And admittedly, I desperately want to report on a simple, ordinary upward progress without a hint of directional change.

Yesterday was not a good day for Julia. What concerns me most is her moods and their resultant behaviors are neither reliable nor dependable. And they are also not predictable.

As I’ve written, we’ve had a few decent weeks with Julia. To add to the tidy pile of good—on Wednesday, another student bumped into her and her reaction was extraordinarily appropriate.  The behavior of the other student may have been intentional but definitely not personal.  Julia, who can make a very big deal about any casual physical contact, had no negative reaction.  Staff sent her to the nurse in case something hurt and she was fine.  She reported it to me  in a very casual way—completely appropriate for the magnitude of the experiene.  That felt good.

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