the colander eclipse

We didn’t travel to the path of totality although such an ominous name appears to make travel obligatory. We didn’t see the umbra. What a cool word.  Feels good in the mouth speaking it. We didn’t see Venus or stars as one friend opined last week.

Muta, the cat, didn’t seem to notice at all.

About an hour before the light was altered by the moon on the east coast, I looked at the directions to make a pinhole camera. As friends from the west coast and midwest were posting pictures on Facebook, I saw a picture of the eclipse through someone’s colander. 

I grabbed our colander, my pin hole camera and some canvases and set up our viewing post in the backyard. Neighbors were going into the street to watch with their eclipse glasses. 

When Julia got out of The Ride van, I rushed her into the backyard. The sky was already darkening and shadows all over were deepening. The view in the colander was cooler than in the pinhole camera.

We attempted a selfie with the sun in the background.

Julia noticed that the whole eclipse took too long.  But we also noticed that the shadows were unusually deep and their darkness was rich. The yellow of our daffodils was like dark-yolked eggs and the light had a feeling of somewhere else, somewhere where filmmakers choose to make period movies. 

I admit to being unexcited by the celestial phenomena and never considered traveling anywhere to see it better than I could from my backyard, but its magic and light worked itself on me as we stood in the backyard looking through our colander. In another world, at another time, this would be holy.

babka and ambition

Another grey, wet and cold day.  Am I ever going to put my winter coat away in the hall closet?  I’ve put it away and taken it out again twice.

This morning supervising Julia at the library during her volunteer time. Observing what she can do and do well, and how much she gets in her own way. She has so much more ability than she uses. Mood and lack of regulation ability dampen potential. Trauma masks the possibility of ambition, and without ambition, goals are hard to come by. It’s the goals that have helped me push through bad days. I’ve lived through many a hard time murmuring “eyes on the prize.” When you can see no prize, where do you ever put your eyes.  

This morning, my friend wrote, “you’re not supposed to ace this.” I sigh. I guess I’ve always wanted to ace all my “this.” Time and age and especially Julia have smoothed out so many of my edges. I accept a good deal more and haven’t thought much about acing for awhile.

Living up to potential is not always what I imagined it to be. These days, acing my this is more about support and patience than it is about getting anywhere, accomplishing anything.

Trauma and distraction crowd out aiming for a prize, staying on task and target. And acceptance and flexibility become the goals.

Should I have realized this years ago? I am not a quick learner.

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a long meeting towards independence

Our day so far.  Julia uses The Ride, the para-transit service that provides door-to-door, shared-ride public transportation to people with disabilities. Julia uses The Ride to get to and from her day program and she likes it. This year Julia’s eligibility was set to end at the end of March. I noticed this fact about 6 weeks ago and called an MTA help line to find out what to do. I was advised to call one number and that speaker advised me to call another.  After a few phone calls, I connected with the Mobility Center, made an appointment for today, filled out the nine page form (large print so probably about 6 pages worth of information) and showed up the Mobility Center just before 8:30 for our appointment.  I planned for an early meeting so that Julia could get to her Library volunteer hours which begins at 10.  (Note: I didn’t receive any notice of the end of Julia’s eligibility. No call or text or email. If I was not as compulsive as I tend to be with Julia’s affairs, I would have missed it and she would have been without The Ride until we could get an appointment. And Julia would have never remembered or noticed on her own. I am grateful for the service but wonder about the lack of a reminder.  I could have used it. Julia would need it. I put a calendar date for myself three years from now, and I’ll put it in Julia’s calendar tonight. The need for such vigilance makes my blood run cold. Not for The Ride but for all the other things that she may miss in her future.)

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waiting & not waiting

Waiting.  Big snow storm predicted for the day. Over the past two days, the outlook changed from hour to hour.  I think it was supposed to begin overnight and that got edged up and up until I decided that we could do Julia’s volunteer time at the library.  It is raining and it is chilly, but not cold enough for serious snow.  A few flakes were falling during our ride to the library but if I wasn’t expecting snow, I might not have identified what fell as snow flakes.

And things were cancelled yesterday—many school districts, Julia’s day program, CRI rowing tonight.

Even my phone said it was snowing this morning long before there was anything but rain coming down.  

And waiting to see if my persistent cough is a flu.  I’ve been coughing—sometimes more, sometimes less—for months now.  Covid recovery, dry buildings, maybe a cold.  Just on and on.  However, today I woke up with more—heavy eyes, feeling like it was a bad night’s sleep even though it really wasn’t, maybe a bit warm, and now sitting in the library, my skin is beginning to hurt and all I want to do it go to bed.

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of roman gods, the year lived & what may come

Janus. The Roman god of beginnings, transitions, and endings. Often depicted as having two faces, one on either side of his head of usually flowing hair. He, giving him that pronoun because in my head I see depictions of Janus with beards on both faces, one looking to the future and the other to the past.  

That is a good enough god for me this morning!

It is my birthday. I “should” sit down and write something. I have been having trouble doing that.  Too many tasks get in the way.  Too many distracting thoughts.  I am monkey-mind personified.  

I need to gently lead that monkey away from the myriad of distractions both within and without, the list of ways that I am not living up to my ideal, plus the list of how I can fix that former list.

And return again to that bust of Janus lodged in my head that I think I saw at the Vatican Museum forty years ago. 

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of all things changing

Happy Birthday, Julia!

We have spent this first half of January clearing out the old, sorting, parting with, bringing in some new, and a good deal of that went on in Julia’s bedroom.

To back up a bit, I have always loved making a big deal about Julia’s bedroom.  Before she came home, I made a pretty girly but not over-stimulating bedroom for her in our Indianapolis home. By the time we moved to Madison 9 months later, she was firmly established as a dinosaur connoisseur and so I designed, painted and decorated a room filled with colorful dinos. She wanted them colorful and wanted her dino toys all around. That was a busy and stimulating room that she really liked. When her taste changed to all things Harry Potter, we made a Gryffindor room—My favorite piece in it was a wand shelf right by her bed. When we moved to Massachusetts, she had almost left HP behind although we hung some of the pictures she was still attached to and we hung some anime posters she was leaning towards. We put up the book shelves she always had and stacked the bins of Littlest Pet Shop critters, Lego and dinosaurs because she wanted them near. Moving house last February, we got to pick out paint colors. Julia picked hers. She decided she didn’t want books in her room (which admittedly was not easy for me) and she was even ambivalent about the anime posters. So, the room, except for the pretty paint on the walls, has looked pretty generic and like she just moved in for the last year. Some stuff on the shelves—toys and art supplies—but lots of piles on the floor with stuff she couldn’t decide about keeping and didn’t know where to put.

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The questions I’m asking everyone . . .

I’ve been trying to find an appropriate placement, probably a CBDS, for Julia for 18 months now with absolutely no luck. If you or someone you know is going through the same challenge, especially if you live in Massachusetts but elsewhere as well, I’d like to talk to you. Please leave a comment below or email me at suzbuchko@gmail.com.

a big ask

I am reaching out, looking for some help. Some of you may know that I have not been able to find appropriate day programming for Julia.  

Julia turned 22 in January, and she was finished with school related programming. She was not ready for employment or further education. I hoped find an appropriate day program for her, specifically a Community-Based Day Support (CBDS) which develops and fosters core skills and vocational attributes necessary for social and vocational independence.  However, ever since the Covid lockdown, it has been very difficult to find a place in a CBDS. Most programs citing the difficulty in finding staff. 

At present, Julia attends programming that does not meet her needs and is not helping her to foster core skills or vocational attributes.  I have been working for the past 18 months to find her an appropriate program but as this year ends, I don’t see that she is any closer to good programming than she was when she left school in January.

Julia is eligible for services through the Department of Developmental Services (DDS), and I’ve turned to their Participant Directed Program (PDP) to meet some of her needs.  Julia has been funded for three days of support through PDP; however, while the PDP offers flexibility, creativity and opportunity to individualize supports for an individual, it also expect that the family will identify, hire and train the support staff.

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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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moving house

It was my plan to keep up with my online activities and possibility even attend a few Sunday churches via zoom.  So far, I’ve made it to last week’s HILR Memoir Class.  I have a Writer’s Group tonight (Boston Friday morning) that I am missing to take the night bus to Sapa.  We are going for the weekend with Tra My and family and I was somewhat confused about the conversion of days and times when I agreed to tonight’s transportation.

I emailed my group of writers in their early morning, apologizing for my bad planning, and almost immediately got a reply that I should “Have no regrets. You are growing and exploring larger worlds. Lap it up- and take us with you. Have a super time!”

In many circumstances these days, I feel the lift of community under, above and all around me.

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