Tag: Julia

healing

Eleven days into the new year and I have been sick each and every day.  What a way to begin something new no matter how artificial the construct of time and new years are. 

So, first off, I am home and have been since late Tuesday, arriving by ambulance because I was attached to oxygen. I am participating in a Home Hospital program. I am still technically a patient of Newton Wellsley Hospital—my wrist band and IV port prove that—but I am getting my care and monitoring at home. I needed to meet some health criteria—after lots of tests to rule out other causes for my condition, I was found to be relatively stable and treatable —as well as home condiitons like a supportive carer.  I wear a very sensitive arm band which is constantly monitored, two nursing visits each day, PT and PA visits and daily deliveries of meds. It felt like too much activity the first day to keep track of everything. Meds are delivered by the nurses when they visit but I must coordinate for myself the early morning and late night meds including five times using the nebulizer during the day.  It felt like too much to take in and actually do on Wednesday and I was quite grumpy about it all.  It didn’t help that my cough was still wicked then and answering either in person or on the phone was tortuous for everyone. 

For me; however, this is a great program. I am home.  Julia, who had a hard time when I was in the hospital, is doing much better with me home. Other than the visits and care that I am getting, there is nothing more that a hospital stay could offer me.  And I have my best carer, Ed, seeing to what I need.  I feel a bit guilty for all the cooking and shopping and cleaning up and caring for Julia and just making me as comfortable as possible that he has done.  But it is lovely having his support.  He is much more than taking-up-the-slack these days. 

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consequences

New Year’s Eve has always been a veguely uncomfortable holiday for me. I’ve never been to Times Square to watch the ball fall, I don’t favor loud parties, rarely have I gone out for diner and dancing. We never built any traditions for the evening which didn’t bother me at all until I was alone.

I think I was happiest when I was working in restaurants or when David and I (and one or the other of the girls) went to movies and maybe somewhat of a quick dinner out. The turning of the century was a good NYE—a bunch of friends gathered at David’s father’s house in Jersey. We were living in Indy then and we still had NYC friends, some with small children. We cooked a nice dinner—I don’t remember what. Wine and maybe champagne. We sat in the kind of dining room that I knew growing up and ate on Dad’s good china, lifting his best wine glasses. One friend didn’t accompany his family because he was a computer guy and needed to guard his hard and soft ware if the worst case of Y2K predictions came to pass. Another friend announced that she was adopting a baby from Vietnam—the baby who now has one year old twins of her own. 

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mood and transformation

Julia is not in a good mood today.  

I woke up late today, sleeping through the alarm that I never, ever sleep through. The clock suddenly said 8:36, and the social worker, who visits us every other month as part of a Medicaid program, was due at 8:45. I jumped out of bed, pulling on my jeans as I not-so-quietly urged Julia to get up and dressed. Julia hates rushing. No, she doesn’t hate rushing, she doesn’t rush. She complains that I am rushing her which I need to do often to get her on The Ride, or to my choir rehearsal, or to a dozen other things when ‘on-time’ is relevant. If only I could bestow an understanding of time on her—on time, late, soon, rush, hurry, scheduled, delayed, tardy. Oh, so many words! 

This time deficite is absolutely nothing new. We’ve been struggling with time for almost as long as I’ve known Julia. Possibly the toughest part of the challenge is my desire/need/obsession with being on-time. 

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enemy from within

Julia jacket this year.

The “enemy from within.” That’s what he has called us and I rather like that title today. And I am telling my disappointed daughter that she needs to be part of the change, part of the fight for what we as a family, as well as a community, want to see in our country.

We support and defend the rights of women and workers and immigrants and transgender people and unhomed people and people with disabilities and our elders. We believe in diversity, equity and inclusion. We believe in climate change and that our world and its environment needs protection.

Julia’s jacket in 2016

We stand for healthcare for all, for public schools, for an end to book banning, for the separation of church and state, for the rights of students and teachers to demonstrate against any and all wars, for strict gun control, for taxing the rich their fair share, for subsidized housing, social security, medicare. We fight against racism and sexism and homophobia and christian nationalism and facism.

In my gut I feel that the party of our choice did not strongly stand for what we believe in nor did it fight against what is abhorant to us. That needs to change. We all need to attend to the change to be worthy of the title “enemy from within.”

Posted on by Suzanne Buchko 1

counting joy

The blur of the busy, the full plate, and the inability to see what is missing or left out or left behind until I trip over the very necessity that I proclaim I steadfastly chase and hold onto dearly . . . 

Joy.

In the darkness that I allowed to blossom last week, I saw the glories of fall—the orange and gold leaves of the massive tree I can see from my kitchen window!  I have observed this tree washing dishes and cooking and watering plants and wondering how I am going to close my two kitchen windows tight. The tree is a few doors down the block in another backyard.  Green all summer, it has slowly been turning into a mighty blaze of autumn color. Last Monday, it was glorious as if lit from deep within, as if ablaze of yellows and oranges. I was almost unable to take in so much color. As the week moved forward and the wind picked up, topmost leaves fell in a rain of gold. By Wednesday, some of the orange was fading into brown and some of the brown joined the rain. By Friday, the gold had almost vanished and the tree top was almost bare, and the weekend saw more of the same.  Today, much more than half the tree is all branches, a skeleton of its summer self.

The noticing filled me with something that I had lost to exhaustion and frustration.

I can admit to missing the necessity of raking leaves.  I know I used to complain when my Madison gardens were filled over and over with the leaves of big trees for what felt like months.  And I miss the Julia as a little girl who raked and jumped in piles and enjoyed it all. Now, I look in yards full of leaves with a bit of longing, but not enough longing to volunteer to help rake.  Maybe some year soon?

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back to a drawing board

Disappointing email on Friday morning came in as Julia and I arrived at an anime convention in Westford.  

Nice thing about Another Anime Convention, yes, that is its name, is that there is a special ticket rate for those, parent or caregiver, who are there only for a kid. “Parent in Tow” is on my badge and I didn’t even have to explain why I wanted the rate accompanying an adult. The badge had some limitations but it was plenty for us.  I went to the “game shows” and the panels, including one very interesting one about women writers and performers in ancient Japan. Julia most enjoyed the hand sewing workshop that was pretty useful and very well done. The “Parent in tow” badge was about a third of the cost of Julia’s day badge. Convention tickets are expensive and I appreciate the break. So good on them!

Back to the email.  It was from The Price Center. The day center that I toured in August and was so excited to hear that there were openings in the program that I was most interested in for Julia. Back in August, it took more than a week to get Julia’s DDS referral packet to them. I don’t know whether that delay was the cause of the disappointing email. Really, may have or maybe not, but if it was, it is pretty rediculous to think Julia lost out because her referral packet was delayed by days.

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ducks

There is the possibility of a longer description of our month coming soon, but this . . .  I’ve been saying for awhile now, weeks or month, I think, that Julia is in a good place these day.  Still unsatisfied with Bay Cove, but more willing to look beyond her current feelings, more accepting of small transitions, more able to regulate over small mishaps and much more comfortable in herself and her surroundings.  Not all the time, mind you, but more regularly.  And this, even though, we have/are weekend traveling 4 out of 5 weekends last and this month.

This weekend was our weekend home.  We vegged out a bit, watched British Bake Off, etc.,  We made a list of what Julia would not do and what she would/could do. Julia usually hates lists. On that list was using clay, something she has always been creative with but hasn’t touched in more than a year.  It has been almost two years since Julia stopped making art every day. For a while she was willing to do something once a week with her art mentor, but when her mentor became ill, Julia was not even willing to do that. Julia was a child who made some art every day. If anything, keeping her from sketching in text books, on binders, on homework, on programs, on any piece of paper was next to impossible. She she played with clayed, figured out sewing a stuffed cat character; Julia could do any art she put her mind to.

And I have stormed the heavens these last two years that her impulse to create would return, afraid that it would not. And carrying the very sad idea that I contributed to the dying of that impulse.

So, yesterday, after church, she went with someone who is spending some time with her, to Michael’s and they bought some sculpty.

And she made this:

And I was close to crying.  I am trying not to cheer or optimistically predict a return to art making.  No, not yet.  I’ll just take pictures and share.

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more catch up

I have catching up to do and no way to gracefully ease into it.

First, the cat. Muta is still with us; however, it is hard to really know how he is doing. I was waiting for some definitive answer. Some diagnosis and prognosis, but I don’t think I am going to get either.  

For about a week after our weekend in the hospital, he was about 80% his old self.  He wasn’t that keen on going outside but he jumped on the couch and my bed and sprawled out when he napped during the day.  He was on an appetite enhancer.  He ate the canned food that I had.  I gave it to him in small amounts—about a quarter of a large can at a time. He willingly ate it.  I think it was not enough to really satisfy him but he stopped throwing up. I imagined he was getting use to being fed 4 times a day; however, over the last weekend he began to throw up again. At least, once a day. On Monday, I went to a vet. She did a follow up blood test to see where his liver and pancreas related numbers were. I haven’t heard from her yet. She also did a bit of hydration for him and gave him a shot of a nausea suppressant.  She said to continue with the steroid until she got the blood work back. 

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unexpected life

Begun on the 5th, finished on the 7th.

Sitting on my back porch, in some stillness. In my sight lines are some less than perfect pots of flowers and herbs that I’ve planted and babied in the blistering heat, a brilliant hydrangea in our back garden that is in full bloom, and the garden behind ours, long neglected yet still punctuated with blooming perennials that are too stubborn to recognize that they are no longer tended.

Yesterday was rather idyllic.  A summertime community picnic in Concord.  Hot dogs, Wilbur’s first, and hamburgers, sweet tea and strawberry shortcake.  And apple pie with vanilla ice cream. Firefighters set up a flat house with flames coming through windows and doors, all on hinges, and gave children the chance to aim a “real” fire hose and shoot water at the flames until the flames were defeated.  The line was too long for Wilbur to wait, for any of us to wait, but he loved watching other kids with the hose.  There was a playground with a sand pit for the pleasure of the littlest ones including Wilbur and his aunty Julia. There was a four piece band of what I thought of as old codgers playing blue grass and old rock standards.  Those codgers may have been younger than I am.  Best of all, we took a train to the picnic!  Wilbur’s current high interest topic is trains of all sorts and sizes, and so we met three stops on the transit line from Concord and took two little train rides to and from the picnic.  It was well worth it as everything about the train, especially moving, was fascinating to the little boy.  

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return

Happy Summer! (lots of this was written over the past 10 days)

Today’s longest day antics: A screening of flying lessons, the film by Sarah Waldron that Julia is in, late lunch with a friend, and horror movies tonight.

Yesterday, June 20, was our really longest day—up at 5 am to begin our ride to Jersey City for the Golden Door Film Festival, a stop at The Cloisters when we realized we were way too early to check into our hotel.  Loved The Cloisters. Hadn’t been there since before Cheshire was born. Finished the ride, found our hotel and some parking —Jersey City has not changed as much as I had imagined in the century since I was there —took naps, went to the opening night party for the festival, saw a bunch of very short and short films and fell into bed somewhere just before midnight.

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