Author: Suzanne Buchko

hands off rally

[Just in case an FYI is needed: Boston held one of the estimated 1,200 “Hands Off!” protests around the United States on Saturday protesting the actions and policies of Trump and Musk.]

It is 4 pm, ukelele ensemble time at Berklee, and we made it!

We left home just after nine this morning to get downtown and a hoped-for parking space near the Berklee building on Fenway. We scored that parking space and left instruments in the locked car. Then we walked to Boston Common, grabbing breakfast at the Eatery before we made our way to the Embrace Memorial to meet our FUUSN group.  When we got there, the crowd was crazy big and I had no idea of how we would find them. The memorial seemed to be the place that everyone, just everyone decided to meet. Thank goodness, for a very tall friend!  It was good to find a pod of friends to walk with.

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ssi

Just in case someone imagines that the most vulnerable will not be harmed by this republican administration, this morning’s message from a Massachusetts housing advocate: 

“If your family member is on SSI, log in (if you are their rep payee), or have them log in, to the Social Security portal. Many people are reporting that the portal is now listing their family member as ‘not receiving payments.’ This happened to me last night.”

SSI provides monthly payments to people with disabilities and older adults who have little or no income or resources. SSI pays benefits a month behind, so people receiving checks today for February. The new notice of ‘not receiving payments’ will effect the payment on May 1. Families have a month to scramble and figure out what is happening. 

I did a quick google search of major news outlets and no one, not one left or right is reporting anything. 

A Few hours later, this came in from the Arc of Massachusetts:

Dear Members of The Arc Community,
Last night, The Arc of Massachusetts learned that there is a new, concerning message appearing on Social Security accounts that are managed by a representative payee (rep payee).
We have seen dozens of reports of individuals logging on to the Social Security Administration (SSA) website to the following notification: “This beneficiary is currently not receiving payments.”
We understand this is an area of incredible concern for individuals and families in our community. As such, we are communicating with our Massachusetts congressional delegation and leadership at The Arc of the United States in order to determine answers as to what is occurring here.
If you are experiencing this issue, or any other federal-related problem, please fill out our Community Check-In Survey so that we can keep track of these issues as they arise.
Stay tuned for more information as we monitor this situation.
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truth and grace

I’ve been composing something in my head—about how Julia new placemet is going and how home is going and generally, although somewhat anxious about the world around us, I am feeling optimistic.  I thought that it might be the entry which would kick off the end of the  memoir that I’ve been working on off-and-on, although for the last few months it has been mostly off.

I hadn’t written this optimistic mostly-happily-ever-after post because I’ve been busy.  Feeling better means catching up and keeping up.  Tuesday night, I congratulated myself on getting my tax stuff together to give to the accountant.  Slowly, I’ve been feeling rather good and almost organized enough to do for myself.  

But you know, the shoes always drop. I’ve been waiting for them.

Monday night, Julia had an extremely runny nose. She had been coughing some a few days before. I gave her some decongestant Monday evening and she went to bed early. When I woke her up Tuesday morning, she didn’t want to get up.  A different kind of not wanting to wake up than usual. And so, I told her to go back to sleep and I called her van ride and her program. John, the program director, said she seemed off on Monday and asked if anything was wrong. He said she asked for quiet space. When I asked her about it later, she said she was not feeling that well on Monday.

She slept all of Tuesday, waking only when I asked about food.  She ate a late breakfast and an early supper, and after each she went back to bed and sleep.  When she woke up Wednesday morning, she seemed well and in a good mood. She got ready and got on the van without any difficulty.

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friday status

Hard week for me and for Julia, but our challenges pale in comparison to what is being inflicted upon young people who our universities invited here to study and practice being Americans.  Since law school, I have put a good deal of faith in our legal system, checks and balances, respect for the law, the ethics of judges. I don’t always agree, in fact, the republican packed Supreme Court disappoints me regularly; but I’ve believed in the process. That belief that is shattered daily. There is no way to keep up with the barage of awful news, but miss one day and life as I’ve always known it may turn completely upside down. No hyperbole at all.

This was not what I began to write but it is very hard not to follow rabbits down deep holes.

Today, I need to reset from the overwhelm of the week.  I am privileged to be able to sit back and take stock and right myself. I am aware of that.  

Morning painting after Julia was picked up, some writing, a quick vacuum of floors that have gotten very dirty in some unknown way, folding four, or is it five, loads of clothes (temporarily giving up on getting Julia to notice that an over full laundry basket is a good sign to wash clothes). I have reading for next week’s classes and writing that needs to be finished, but the sun is out, the gardens need cleaning and the sadnesses need airing before the day is finished. 

What was personally challenging and hard for us, for me should follow soon.

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micro-climates

“A microclimate is a local set of atmospheric conditions that differ from those in the surrounding areas, often slightly but sometimes substantially.” ~some website

I’ve never noticed that I had one in any garden I’ve made.  My neighbor, Maria, had one. Along the side of her house that faced my side door in Madison, daffodils bloomed at least a week before the rest of the neighborhood or my front or back gardens.  The thing about her microclimate was that she did nothing to it.  I mean, the bulbs were planted and the bed cleaned and tended, but no special watering or fertilizing went on. Those daffodils just returned year after year a week or so earlier than any others.  And I was able to step outside of my side door in the early spring and be greeted by their absolute glorious yellow-ness.

And I’d like to report that I may have my own microclimate right by the stairs off my back porch.  I noticed it last week. This is my third spring in this house–during the first one, I was still unpacking, last year, it was the front garden bed that I paid most attention to, this spring, I have the eyes for smaller things.

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hope is a thing with feathers

Thursday morning somewhere around 10 am, I was at the Discovery Museum with Cheshire and the boys when Cheshire received a phone call from The Price Center.  The director of Julia’s program was looking for me. Cheshire handed her phone to me, I verified that he had the wrong phone number for me—one digit off—and then we got down to the content of the call.  

I braced myself. Out of habit. In my experience, calls from directors are rarely good news. Some behavior, some serious concern, or in the worst situation: “You need to come pick your daughter up immediately.” When Julia was in school, there might be an occasional call about not-so-bad news, but generally and since kindergarten, calls from the institution are not good news. 

Thursday was different.

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friday afternoon

I wrote a note to the supervisor of Julia’s current day program this morning, thanking her and the staff for the care they’ve shown to Julia over this past year or 14 months. Julia was expected to begin her new placement at The Price Center on Monday.

Transportation called and Julia was set to be picked up on Monday between 7:45 and 8:15.  The dispatcher said the window will get smaller once the route was established.  

I emailed DDS and The Price Center checking to make sure everything is ready to go for Monday and asking for confirmation. I kinda’ really wanted confirmation from as many people as possible because I was nervous.  We have been exchanging emails all week to get ready for Monday, and although Monday has been in everyone’s email, I don’t have a definitive, absolute pronouncement that all ducks are in a row for Monday.

Will this be a soft landing?  Will this be the right program?  At least, an appropriate program for this moment? Will Julia like it?

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the ride

Morning wait for The Ride.  Julia takes The Ride to her day center.  The Ride is our MTA van transportation for people with disabilities.  We are lucky to have something like it. Sometimes lucky; sometimes a curse. 

The Ride is safe, the drivers are helpful, the interface be it on computer or the phone are relatively effective.  The flaw in the scheme is reliability.  The Ride is notoriously unreliable.  So much so that Julia new day center does not allow clients to use The Ride to and from the center.

And I understand.

The Ride comes early, the Ride comes late, and sometimes it doesn’t come at all. A few times, The Ride has come to the wrong address and left, blaming Julia for not being available. Occasionally, they have used Lyft to pick Julia up from her day center and the Lyft driver has no idea that Julia will not be waiting outside for the Lyft car. 

Using The Ride for the past 15 months, I’ve come to understand how and when to communicate with the dispatchers.  If I find out that a Lyft vehicle will be used, I call and ask that the driver be given specific instructions. No one likes doing this. When The Ride fails to show up and I call the dispatcher for an immediate re-schedule, I refuse to be transferred to a department where I can lodge a complaint.  I don’t want to complain, I want the ride.

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just a few thoughts and words

Once again, to begin again, to begin again and to wonder if it is possible to begin again, and to wonder what is possible in the long run other than the daily round.

I feel like I have been very far away.  Every so often during the last weeks, I’ve had the slight impulse to write something, a slight burst of energy. But all energy has been spent doing work for my UU church’s annual pledge drive (“APD”).  I am on the pledge drive team, such an unlikely position for me to take up. It is far out of my comfort level and the changes that have been made to the drive this year have pulled the work only further beyond my ken. However, I’ve had the chance to work on a few parties and thank goodness, parties are in my bailiwick. Two parties in two nights last weekend, and I admit I was quite flattened by exhaustion. The APD has one more big blow out of a party this weekend, and then the work shifts in nature.  There is at least another month to it but no more entertaining.  

And so, I start this way, writing about the pledge drive and the parties because it is where I can start.  At the moment, I am far from she who writes every day and sometimes comes up with something thoughtful.  I haven’t looked at the memoir in months and have only been working on a few thousand words of the novel at a month. I have not been keeping written tabs on daily life or Julia’s doings.  

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february

It has been a whole month. So much has been left undone and much of that has fallen aside. Right now, there are no projects needing completion and no tasks that I’ve scheduled. So many naps, staring at ceilings and walls, much too much junky tv, a bit of reading, some writing, and last week the beginning of walking outside.  Yesterday, I logged a bit more than 5,000 steps.  Not that impressive, I know, but if you saw my numbers for the last month, it looks like I climbed mountains yesterday.  

I went to chuch services last week and will again yesterday. I still have very little voice—a month of coughing can wreak havoc on the vocal cords—so no choir yet.  Maybe this week.  I miss choir practice. 

I’m still not feeling up to driving but again, perhaps this week. It has been a focus issue and then also exhaustion. As I began to feel more like myself last week, writing was not easy.  Not the physical act but the focus needed.  I have it for short amounts of time, but not for what I needed to produce anything. However, what I wanted to do almost as soon as I was able to sit up for long periods of time was to indulge in some mindless beauty and do something with my hands.  

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