Tag: Julia

vermont 1

Shelburne, Vermont. Definitely morning frost. And thank goodness it also turned chili at home before we left. The extra sweatshirt thrown into the bags at the last minute will be used!

Ed and I are ensconced in a sweet and small B&B owned by an architect turned painter and her husband, who is very nice, but I haven’t drilled him on his work life. Yet.

Julia is at Zeno Mountain Farm for a five-day, four-night weekend. She went to their fall weekend last year and was invited back for this year.  (She has not yet been invited for summer camp, which is my goal for her. Once invited, she can come up every year for the rest of her life.  Everyone does, and thus, the wait is long for a spot.) She helped me pack her stuff and then re-pack when we found out how cold it was really going to be. The ride up was pleasant and uneventful until we got to the country road part that goes up and down a mountain for almost 30 miles, okay, a small mountain. Julia began getting angry, anxious, and extremely unpleasant.  At one point, she lobbed a sweater at Ed, who was driving. She spent a good deal of time swearing at the mountain, the road, and us. By the time we arrived at the Farm, I had to spend time with her trying to figure out what she wanted to do. (Not at all sure what we would do if she wanted to not go to Zeno altogether.)

I was unsure if we could leave her.

And then she went through the big farmhouse doors, and someone said hello to her. And in almost an instant, or at least a few minutes, she was all smiles. Hugging two people she knew, ready to hand off her meds to the nurse and go to her assigned room on the third floor. When she came downstairs, she was ready to have us leave. She gave us happy hugs and went off to a giant bay window with couches in front of it to watch the sunset. 

Continue reading →

Posted on by Suzanne Buchko 0

news of the week

Julia came home from The Price Center on Thursday with two pieces of news.  First, that she had gone to the YMCA with peers. She got on the van and spent the morning on the stationary bike, if she is to be believed. I am not sure she spent the whole morning there, but when she goes to the gym with me, mostly on weekends, she can do 40 minutes on the stationary bike. The big part of that news is that she was willing to leave the building!  She has gone on a few community visits, like the zoo, to help with watering plants, but that was of high interest to Julia—she loves zoos, loves watering. I know there is a lot more going out into the community that she can take part in.

Fingers crossed that this is a beginning. 

Continue reading →

Posted on by Suzanne Buchko 3

anime boston

We’ve been at the Hynes Convention Center at the anime convention for almost three hours and it is finally worth it. The registration process was not friendly—multiple lines, down long hallways. It took a long time to get a print out of the schedule for the day. They say we should be using an app, but I cannot download the app, I wanted Julia to have a paper schedule to choose from, and after being turned down by a few “officials”, I ask at the accessibility desk and insist.  Finally, someone admits that this is the first year they are not providing paper schedules.  I insist again, like the mother bear that I am, and a paper schedule is put in our hands but by that time, I am pissed off and grumbling and deliver a lecture on what accessibility means.  I’m not going to say it was not needed but I could have been nicer about it.  Not a proud moment.

But now . . . 

Julia is learning a dance in a k-pop dance workshop.  In a ballroom with at least 75 (maybe 100) other young men and women, mostly women. Two women teach on a slightly raised stage. They are clear and good at breaking the dance down into manageable chunks and repeating.  The actual singing group, Bebe performing Stay C, is projected on a large screen beside the two teachers. The dance is repeated at 50% and 75% of the speed of the song over and over. The dancers learn small chunks and dance. Every few learned chunks, the teachers review by going over everything that has been learned.   

Continue reading →

Posted on by Suzanne Buchko 0

wednesday

I’ve left breakfast dishes in the sink this morning. On purpose. If I was my mother I would have washed them as soon as Julia left for the day. If I was myself ten or 14 years ago, I would have washed them as Julia got into the van.  Back then, I needed to control something and washing dishes was a doable task. An easy success. And I needed success. 

Now, I am willing to let them slide. To let them wait until . . . . until later.  I will wash before I go to bed tonight. So, okay, I still have some need of control.

Instead of washing, I poured a glass of clean water, taped off a page of my sketchbook and spritzed the water colors. I am trying to paint. I am painting. I cannot seem to sit in meditation these days. I wander, I obsess, I plan. I slip too easily into past and future. I bring my mind back time after time, but I am not patient with myself, with the practice that I’ve had for years.

Continue reading →

Posted on by Suzanne Buchko 0

another mother’s day

I brought my laptop to Julia’s year end recital at Berklee. Berklee Institute for Accessible Arts Education.  I will not get much time to sit and type but I was pretty sure I would want to get it out as soon as I sat down. I do and we have some time until recitals begin. 

This year the musical step taken is that Julia will play her cello without me sitting with her. This is the step forward after a few taken back. Back in Madison, when Julia was playing with Martha Vallon, she always played without someone sitting with her; however, when Julia emerged from Covid shutdown, she was not willing to be on the stage alone, not willing to do her own counting or take full responsibility for what she was playing.  I see some change now.  It has been a long way back.

Continue reading →

Posted on by Suzanne Buchko 0

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.

Continue reading →

Posted on by Suzanne Buchko 0

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.

Continue reading →

Posted on by Suzanne Buchko 1

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?

Continue reading →

Posted on by Suzanne Buchko 1

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.

Continue reading →

Posted on by Suzanne Buchko 0

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.  

Continue reading →

Posted on by Suzanne Buchko 0