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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last week

Garden sprite

I began this when I woke up and drifted to my favorite chair to write a bit before getting back to a few more z’s.  Finishing up about twelve hours later.

It is the darkest part of night. A lone cricket in my little, dry vegetable garden sings intermittently.  A very slight breeze comes in through a dining room window.  The breeze and the cricket’s song are all that breaks the solemn, velvet of the night.  

A week ago plus a few hours, I dropped Julia off for a week long camp. Amazing. The week and the weekend before went so well.  Again amazing.

The last day of camp, the units put on a camp show for caregivers.  Last year, Julia would not participate in the show.  This year she did!  Not anything amazing but dancing and singing with her cohort.  At the end of the show, the counselors acknowledged those campers who were aging out this year.  This can be somewhat of a trigger for Julia—she has always hated talk of growing up and getting older.  And of course, this was an announcement of transition.  Well, she did great!  She took the tee shirt offered, hugged her counselors and sat down.

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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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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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make it so

A blue ribbon and a fourth place ribbon during the sectional track meet. Julia was extremely proud of herself!

We had Julia’s last IEP meeting yesterday.  She will leave the school system in January when she turns 22. The participants included transition specialists from DDS and MRC, both agencies will loom large in Julia’s future.  Her inclusion facilitator conducted the meeting.  Two aides, the speech therapist, Julia’s out of school therapist were also there.  

Julia presented a power point about where she is and where she wants to go.  She has done this for a few years and this one was the best.  She likes working at the library, she wants to work more, she wants to live with room mates, she wants to take care of her nephew who is not yet born. She has gotten better at cooking and she is interested in making money.  I am leaving a few things out that I’ve forgotten.  Each slide was pretty appropriately illustrated with anime pictures that she copied.

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performance + work

I cannot let the week end without noting Julia’s doings.

When bad things happen it is easy to dwell on them, to obsess, to perseverate, to take the moment of the undesired happening and stretch it thin to see all of the possible consequences.  I do all of that.  And, close to relentlessly, worry.  And I am quite the expert at that.

But when good things happen, I find I breathe them in and then let them flutter away.  Sometimes I don’t even note them. Sometimes I note them, even write about them and then quickly forget them.  I expect that this is a common phenomenon that needs changing.  At least, in my life.

Julia had her first recital with her Berklee cello teacher on Sunday.  She played Minute No. 3 by JS Bach, the fourth piece in the Suzuki 2 book. The first half is in first position; after the repeat, the second half switches from first to second positions.  This piece has been a challenge for her.  She has gotten through it with repeats close to perfectly, but not consistently.  Sometimes the second position trips her up, sometimes the bowing.  Added to this, she played it as a duet with another student on the piano.  They practiced on two Saturdays during her lesson.  Last Saturday during lesson, I sat with Julia as she played, and Miles, the teacher, sat with the piano player. To say it was a work in progress was quite generous.

Still, this piece represents an incredible effort on her part.

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tulips and small steps`

Dramatic Julia at the Brooklyn Botanical Gardens Japanese Garden

I meant to write yesterday.  What happened?

10:00 a.am.  I get a email from Julia’s inclusion facilitator that Julia is upset that she left her wallet at home.  I am more or less ready to do some errands, so I jump in the car and bring the wallet over to the program.  I want Julia to have as good a day as she can. She has had some very good days this week . . . talk about that later.  

First.

I read a blog post (and I can’t find it now to link it) about a mom who has a child with autism who had reached middle or high school and was more independent than he had been a few years prior.  The mother felt some room open up, some possibility of freedom for herself, and asked a trusted therapist if she thought that the mom could enter the regular work force again.  She had cobbled together part-time work through the years but missed a full-time job and building a career.  The therapist, who knew her kiddo, told the mom that if she “needed” to work, she should, but that kids with the best outcomes have full-time moms.  

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nyc 1

It is April and Julia is on second spring break.  And we are in NYC.

First off, we’ve been here for 24 hours and Julia has said at least 5 times that she loves this place.  Okay, we did have supper last night at the Chinese noodle shop she had picked out on line and we did find two goth/Japanese/anime clothes shops today, but it is noisy, confusing, busy and scruffy.  All things that Julia usually doesn’t like.  She might be picking up on my own happy feelings—ah, to be in NYC again.  

One of my happy dreams when we moved to Boston was to be able to visit NYC for theater, museums and walking around often.  Then Covid.  This is our first trip here, although we did just pass through last June on our way to Maryland.

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steps

After our first bike ride of the season.

The pace of life is picking up and has been for a while although I admit to becoming aware of it long after other people who are more of the busy world.  I know many people who have already gone to far away places, stayed for a month and come back with healthy looking skin and bright eyes.

This coming Sunday, I am scheduled to teach pysanky writing at my church and a friend wanting to sign up noted that there are two others events going on—a zoom Moth Story hour and an in-person music rehearsal.  Wasn’t it just last week when every gathering happened in front of a computer monitor? How glorious that there are now conflicts. How glorious that travel time is now part of many plans!

But I live a small life. 

On Sunday, on our way into church—we arrive an hour before services begin to go to choir practice—Julia and I noticed perfect small yellow narcissus blooming in corners around the back of the building.  Without a spring garden of my own, I notice and cherish those brave little yellow blooms.  I know that even though the day may be warm and sunny, there are cold days ahead. Silently, I wish the brave blooms are sheltered enough to survive another freeze. 

And I wondered, had I seen blooms in this place before? I might have just before we were locked down two years ago, but what I remember from that time is only the spring flowers we saw on our Covid daily walks.  I think it is probable that these little narcissus bloomed in 2020 after no one was walking into the church building and last year it was the same. I think to thank them for their perseverance and persistence, their willingness to be so beautiful even when no one was looking. 

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