Tag: Julia

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.

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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.

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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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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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birthday girl

She had a very low key birthday because I have been confined to the house or hospital since New Year’s. However, my VNM, aka Ed Childs, brought home her favorite take out, bought her a lucky 2025 bag of Japanese beauty stuff and nifty socks, and served us strawberry short cake for dessert.

And just like that, the little girl who I met when she was five and a half turned 24.

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off oxygen

This morning I woke up ready to take off the oxygen. Just ready.

Healing was looking good on Sunday. The nurses and techs were encouraging me to move about the house, to do a few things, nothing extravagent but easy chores.  Christmas still needed to be put away. Ed and Julia had brought up my 4 christmas boxes and I had taken down a little bit a few days before.  I needed to straighten the boxes, put away garland and some of the lights, and then tackle the tree.

And I felt ready.

These sick days have found a rhythm of nurse and PT visits and meals and phone calls and email.  After lunch and a nap, I was ready to tackle christmas. I was puttering when a pain crept up in my chest. It bloomed on the right side of my chest and radiated into my jaw. It was not intense but present and different from anything I had felt before.  I debated whether to call the nursing line, remembering vividly the mistakes of not calling that David made.

And I called.

I relayed my information but the nurse was not too concerned.  She said she would push up my afternoon visit but to otherwise just continue as I was.  Then, 20 minutes or so (my time awareness of the next few hours fractured. It was 20 minutes, it was 2 hours.  I wasn’t 2 hours but it might have been much longer than 30 minutes). Then, the pain happened again. More intense this time, longer, and did not immediately fade.  It retreated very gradually, especially in my jaw.

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notice to “friends”

To anyone who voted for trump and imagines they are my friend: Today, I called my pharmacy to see if someone else could pick up Julia’s four monthly perscriptions because I am not allowed to drive yet. During our phone call, the pharmacist said that Julia’s new perscription plan had not yet kicked in and so, the cost would be close to $700 for this month’s medications. I explained why I could not be there to give them her new perscription card and he found a way to access the card and apply it bringing the cost to $20 for the month.

Julia is insured by Medicare and Medicaid. Her perscription plan is also paid by a government program. All of those programs are threatened by the new republican administration.

If trump, musk, kennedy and the congressional majority does what they are planning in the name of government efficiency, my daughter will not have access to the medication that she needs. There are millions of people with disabilities who will face the same circumstance.

And if this happens, it is the fault of republicans, conservative christians and MAGA voters. The lack and loss of medical care to millions of Americans with disabilities will fall on your heads. It is your fault. And you are not my friend.

Hillary was absolutely right. Deplorables!

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