Author: Suzanne Buchko

day 5

From yesterday: There is a puzzle on the dining room table and eggs in the kitchen ready to be made into pysanky.  Hoping to encourage Julia to do a drawing a day to post here. Trying to put some kind of schedule of our days together.  Loose to be sure. Motivation is lagging this morning and I haven’t made the call to nudge Julia or I into action. All I’ve done is answer a few emails and do the census online. Very, very curious about how we find our rhythm during this time. Considering all the time we have, we may just have time to live in these questions.

I made a big pot of beef stew yesterday and we have enough milk, eggs, cheese, rice and pasta to avoid markets for days.  The freezer is stocked with chicken breasts, soup, puttanesca sauce and frozen potatoes.  We are running out of bananas and spinach.  I usually don’t think about which fruit or veggie will go bad quickly, but avoiding stores . . . . What is a reasonable and responsible amount to time between shoppings? Continue reading →

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of dominos and labyrinths

9F1F4878-C5ED-48A9-8C6E-2C7CB08D69BCAnd it is only Thursday.  Now, Friday.

Like dominos.  Like those elaborate domino runs that are impossible to look away from. Got to watch them to the end.  All week, I compulsively check NYTimes.com. COVID19 and the stock market.

Two weeks ago, a group of high school students from Newton returned from Italy and went into quarantine. There were two emails from the school about that and more emails about possibilities and procedures if necessary. On Sunday, there was an email about a Newton resident with a student in middle school who was diagnosed with a presumptive case of COVID-19. The child, without symptoms, was following the quarantine protocol.  Continue reading →

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sliding time

FA5D7231-271E-492D-8A1D-4F308E7844C3 This may be the longest I’ve gone between blog posts. Time slides sideways; old challenges simmer; new ones poke their heads out of cold dirt like cheeky snow drops.  February was either 8 or 46 days long.  Julia’s behavior dominate this winter time.  My excuse for not posting here is the detailed daily log of Julia that I have been keeping.  Illuminating but time consuming and emotionally draining. I will write about her soon.  For now, just to note that last Tuesday, she hit a new low.  Julia had a screaming, crying melt down in front of school and when she was coaxed into the building, she banged her head against a wall hard enough to cause alarm about a concussion.  Although I’d like to believe that it was an incident not to be repeated, self-harm could be the natural progression of the dis-regulation that has been part of everyday life. Continue reading →

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fear

Living in Fear as a Special Needs Parent

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By Due Huynh

I read this post midday yesterday and tears were in my eyes.  My life, our family life, has never been so desperate, so hard, but I know fear. 

Two days ago, the mail carrier brought two letters from MassHealth which is Julia’s current insurer.  MassHealth has lots of rules for lots of programs and it is challenging to figure it out. There are help lines and FAQs both inside the MassHealth world and outside in the form of advocacy groups.  Still, MassHealth is labyrinth which makes the Triwizard Maze look like a walk in an English country garden. Continue reading →

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year of the rat

Unknown-1Happy Year of the Rat!

or

恭贺新禧 (gōng hè xīn xǐ) Literal translation: respectful congratulations on the New Year.

Yesterday, after cello lesson Julia and I went to The Dumpling Palace in China town for lunch and celebration.  The restaurant was noisy, tables too close together, everyone was either leaning very close together to be heard talking or speaking loudly. We were asked to sit at a round table with two other small parties. The wait staff hurried from table to kitchen and back to tables. The arrival of dishes was announced and diners shouted to claim what was theirs. Julia had beef stew noodle soup, I had hot and sour soup, and we shared beef and crab juicy dumplings. Ours was a very small order for two compared to our tables mates but it filled us up. There was no encouragement to rush through the meal and the tea pot was replaced more than once. As we left, waiters wishes us a Happy New Year and when we returned the wishes, there were smiles.  Continue reading →

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january

I wrote the initial draft of this entry on 11 January, and then, forgot about it. So, a bit of editing around the edges but I didn’t want to change verb tense.

It is physically satisfying to type 2020.

What a weird day!  Second week of January and 65 degrees F (18C), unusual for Boston, completely foreign for someone from Wisconsin.  Julia has Saturday afternoon theater workshop with a group that works with youth with disabilities to develop theater pieces.  This is her second time; the workshop is 4 hours long.  It is close enough (on a Saturday without traffic) that I could go home but she asked that I say close.  Last week, I found an interesting diner but it is no place to stay anywhere near on a diet. I am on a diet. South Street Station is around the corner; the food court has WiFi and a Starbucks. Continue reading →

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last day

047A3341-766A-4372-A048-2DE15559C17EIt is 6:40 am and completely dark outside. Oh, this winter cocoon time. I can still be surprised by its intensity as it comes to take a huge bite out of my desire for complacency. It is not as cold outside as it usually is this time of year in Madison, although my Madison peeps are posting hiking and bike riding pictures. Yesterday in Newton, a storm gifted us damp, chilly rain, hail, thunder and lightening.  We ventured out for food shopping, and that only because it was necessary.

I started writing in bed and moved to my leather writing chair in the dining room.  I move about the house in the dark, a habit from when I shared a bedroom and did not want to disturb my sleeping mate.  I pull on my heavy pj pants and grab the shawl from Madison friends–blues and purples and memories. Tangible memories from friends punctuate my days—a Madison dish towel, knitted dish clothes, a bag of very fine cocoa mix, even the reusable bags I carry my groceries in.  In the lonely and trying moments of the last six months, these things have bought solace.  Continue reading →

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boxing day

C8840884-8BEB-4F82-9CEB-86A3BF7B86D9Boxing Day.  Julia and I say ‘Happy Boxing Day’ to each other without any idea of what it means. So, I looked it up—It isn’t the day people make bonfires of the boxes that their Christmas presents came in. Neither is it the day to return all the boxes containing ill-fitting or ill-styled gifts. Those were pretty lame guesses but the best we could come up with. Google revealed (with some disagreement) that Boxing Day was British, which we knew, and traditionally a day off for servants. Servants received a ‘Christmas Box’ from the ‘master’ and then were allowed to go home to give the boxes to their families. Umm, but that’s not what happened on Downton Abbey, my British manor house reference point.  Having no servants to gift with boxes, we will read, write and draw, then go to the movies.  I miss friends who host game playing parties on this day. Maybe next year. Continue reading →

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