“[W]henever well-laid plans are unlaid in an instant . . .”
Melissa Kirsch wrote in the NYTimes two days ago in How We’re Holding It Together: “These lines keep coming back to me — when a long-anticipated trip is shelved indefinitely, when my family decides to postpone gathering for the holidays — whenever well-laid plans are unlaid in an instant”
By the time I read her lines, our holiday plans had already been upended. Julia and I went up to Conway, New Hampshire, as planned, to spend time in the enchanting land of snow with the good company of Justin’s family; however, absent from the gathering were Cheshire and Justin due to positive Covid tests.
Justin who has worked from home for years (and not just since the 2020 shut down), travelled for work for the first time in two years two weeks ago and came home with a bad cold. A take home Covid test the day before we were all to leave for NH was positive and Cheshire followed two days later but only after a P.C.R. test, her rapid test was negative.
The two days between Justin’s positive and Cheshire’s results, I entertained the slim possibility that Christmas together could still be salvaged. Christmas eve would be ten days after Justin’s symptoms appeared and if Cheshire was symptom-less and negative-testing, perhaps being together would be possible for Christmas.
Oh my, such thinking was way too desperate. Optimistic in a way that seems to have disappeared from real life. What was I thinking? Clearly, it was not thinking.
And today, Christmas eve, I go through the day with tears just behind my eyes. Yesterday, I would have written that another covid Christmas was making no impression on me. I had finally become the willow bending in the wind; I could pivot on dime; I could make plans closer to suggestions thrown out into the wind daring change with aplomb.
Today, not so much.
As I am apt to do most nights, I woke up around 2 and scanned the Times. No, I don’t scan the Times most nights but I had been away from news for two days. In the middle of last night’s front page was news of Joan Didion’s death–at her home in Manhattan from complications of Parkinson’s disease. She was 87. I knew she was ill. It was not a shock or surprise. It is not even that sad—she was old, she had lost those she loved long ago and she had written incredible, beautiful, insightful words about most of her life many, many times. But her “The Year of Magical Thinking” helped me define my own losses. I sobbed through so many of those pages and even now, the mere thought of some of her words, bring my holiday tears forward. I was not ready to lose her spirit dwelling in this world for no reason other than she was touchstone for me.
And the woman had such timing! The Times Magazine’s “The Lives They Lived” comes out on Sunday. Joan completely upstaged it with an obit in the middle of the home page late last night. At least, for me.
Excerpt from To Licinius, by Robert Pinsky and David Ferry:
“Always expect reversals; be hopeful in trouble,
Be worried when things go well. That’s how it is
For the man whose heart is ready for anything.
It’s true that Jupiter brings on the hard winters;
It’s also true that Jupiter takes them away.
If things are bad right now, they won’t always be.
Apollo isn’t always drawing his bow;
There are times when he takes up his lyre and plays,
And awakens the music sleeping upon the strings.”
“For the man whose heart is ready for anything.” A woman’s as well.
I had a zoom meeting yesterday at 8 a.m. with Julia’s counselors from DDS and MRC (The Department of Developmental Services and the Massachusetts Rehabilitation Commission, the agencies providing services for adults with intellectual disabilities in MA) and Julia’s Inclusion Facilitator (AKA Case Manager) in Community Connections, her transition program. In my continuing attempt to understand the adult social services that may be available to Julia when she leaves the school system a year from now, I have advocated for this meeting since Julia qualified for DDS services in October. December 23 at 8 a.m. was the first time such a meeting was possible. So, still in NH, I zoomed in.
My goal bringing these people together is a seamless transition from student services to adult services, a goal which the woman from DDS said is desirable but rarely possible.
It was a decent first meeting—one which I expect to repeat at least four times during 2022 as a persistent advocate and mother bear—but there were two tough thorns slung into the conversation.
Julia has had a few good weeks at Community Connections, the weeks since Thanksgiving have gone better than any week before. She had just a few hard mornings—refusal to participate, small melt downs—which she was able to recover from relatively quickly. Both her Inclusion Facilitator and I are quite pleased with this progress and I cannot help but see it as a beginning of what is to come. Watching Julia acclimate to CC, watching her become somewhat more social and independent, watching her remember what she does and ask to make plans, and to be happier than she has been in months, cheers me beyond measure. It feeds what I see as a future for her. Perhaps, perhaps, perhaps, Julia is beginning to gain some of the ground that she lost in our MA transition and the Covid years.
The DDS counselor; however, did not see it that way. “Plans should not be made around two and a half weeks of good behavior.”
And pop, the air was expelled, the “room” shifted. Okay, maybe it was just reality crowding my hoped for future. Don’t worry, lady, I can live in reality and hold onto hopes and dreams.
And then, there is Gateway Arts, a studio which provides professional development for adults with disabilities who have talent in fine art and hand crafts. Julia and I visited Gateway the spring before we moved here. I noted at the time that Julia appeared far too able compared to the artists we met, but the studio impressed me so much—the work individual, the staff dedicated and friendly. I thought that it might be a good place for Julia after her transition years, maybe not forever, but until . . . I am not sure when.
DDS funds Gateway placement, and when I brought up Gateway during the zoom call, the DDS counselor explained that Julia would probably be rejected from the program because she was not independent enough.
On our drive home from New Hampshire, all I could think of was how I saw her as more than able and independent in Spring, 2019, and now. Now, the counselor compared it to a “reach college” for a typical kid. I was crushed.
Today, however, I need to be “hopeful in times of trouble.” There are a few typical kids who get into their reach colleges and who thrive.
Today, snow is gathering on the ground with falling flakes too small to see. We have lit our lights in the morning, many too many lights that I have hung, strung and draped in more than one of our rooms. I love the lights, even though I can hear David and my much younger self tut-tuting at their garishness. I don’t care anymore. I want the light in my days. I want hope.
Tonight, we will be at FUUSN for the late service at 11:30. The chancellery will be darkened, the choir will sing, I’m doing a reading. And then, we will go to bed and wake up to Christmas. Julia will open gifts and we will probably drive up to Justin’s parents’ house for Christmas dinner. And some time next week, when Cheshire and Justin’s confinement is ended, we will exchange presents and hugs.
Thankful and grateful and sad and disappointed. Holding dualities. Holding possibilities and tears and joy. And a holiday too.