Living in Fear as a Special Needs Parent


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

year of the rat


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Unknown-1Happy Year of the Rat!


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




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

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

boxing day


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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

holiday weekend


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F6C80BE0-6315-489F-B71E-2E4688C738C0Old December holiday styled header today.  Not this year’s at all; however, for how challenging the last few days have been, I want to claim December and celebrate cozy holidays.

Today, we put up and decorated our little fake tree.  Bought during a year that we were going to spend a long Christmas holiday with Cheshire and Julia still wanted a tree.  Since then, Julia has asked to put it up as soon as Thanksgiving is over and I could see no reason to say no.  It was on the schedule for Sunday, today is Wednesday, but the little tree is up.  As are a few decorations and a string of lights around the mantle.   Continue reading

late november catch-up


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IMG_6072Public Service Announcement: “Regularly used in text messages or online, the word/ letter /phrase /term, “K” really only means one thing: Fuck You. The use of a “K” should be reserved for very selective moments of frustration or annoyance, otherwise it sends the wrong impression.” Read more here.

Am I the last person in the cyber world to know this??  Perhaps.  I can definitely think of specific people who have used this with me.  If they meant it in any other way but a casual “okay,” I was clueless.  I think of myself as a relatively savvy-for-an-old-lady online participant—I do wonder where people get their gifs from and so quickly after I message them.  My older daughter has promised to show me.  But this, K stuff is perplexing.  Who told who and when and why did they leave me out? Continue reading

settling in some more


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NaNo_2019_-_Poster_Design_1024x1024So far I’ve written many, many words for 8 days straight for NaNaWriMo.  I would not vouch for the quality of most of them, but this is about getting words on the page and not fine literature or even hack pulp.  This month of writing is more about putting something of mine on the front burner which I have not done for a long while.  Arguably, a good deal of the last year, moving and settling into Newton, has been about me, but Julia is usually in the front burner pot.

For this month, I’m intending to add 50,000 words to a very old project that already has almost that number of words devoted to it.  It is an ambitious idea but it is a good time to try to do it.  Even after 4 months, I don’t have many connections here.  Community building is slow but sure, and I have time and energy to take on a solitary project.  I have two kinds of online support and I can go to the occasional write-in at my local library.  I spent October preparing an outline, reestablishing my meditation practice which has been slipping, applying myself at the gym and cooking large amounts of freezable foods.  I was going strong until last week. Continue reading

living into questions


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Cheshire coxing for a senior boat at Head of the Charles.

Believe it or not, I have been journal writing a lot this month and yet I’ve been unwilling to bring anything to the point of posting and publishing.  

Just interesting.

I read a poem every morning curtesy of Joe Riley  and his email list called Panhala.  (I can’t find a working link for the site but a subscription request might be here: panhala-subscribe@yahoogroups.com.).  I took up this habit about 8 years ago because I never liked reading poetry and it seemed that all the work I was doing and the people that I was working with valued poetry and always had something inspirational to read to begin meetings.  At that time, I also remembered that I had promised myself to read poetry (and also Proust) in my old age, assuming as I did when I was very young and callow, that deep understanding would be mine by the time I reached oldladyhood. Somehow I came across Joe Riley’s work of sending out daily poems and I subscribed.  I deleted many without even a read when my email inbox got overwhelmingly full and I stopped in the middle of reading many times because I just didn’t get it; however, little by little, over the years, I have come to some understanding of poetry.  And I now envy poets, like painters, who can say so much, move so deeply with a minimum of words.  It is not my talent, as this long paragraph attests to, but my appreciation grows with every verse I read.   Continue reading

catching joy



Time to celebrate and throw confetti!  Cheshire and Justin are going to be married.


Two weeks ago, Cheshire’s boyfriend, Justin, came over to talk about their future.  Their future together.  It was with so much joy that I gave him the ring that was worn by Cheshire’s grandmother, Inez Sarvetnick Schanker, and after Cheshire was born, by me. Completely serendipitously, Justin came to talk to me on David’s birthday, what would have been his 65th birthday.  David’s birthday is not one of those special days that register with me but this one did as I wrote about.  Having this special conversation on David’s birthday made it sweeter still, if that was possible.

Justin proposed last Friday and his parents with Julia and I joined Justin and Cheshire for a celebratory brunch after a ferry ride on Sunday.  We are all very happy.

Planning is underway. Julia, who has discovered Pinterest, texted Cheshire a cake with bride and groom cats on the top and little paw prints going up the sides of the three layers. I am so very tickled that I will not be a long distance mother-of-the-bride.