Big Jane passed away last month, the week before what would have been her 89th birthday. Her care facility had been quarantined for the previous couple of weeks due to the flu, and visits strongly discouraged, but my sister Eenie and I drove up to see her late that Sunday night, when we learned she was on oxygen and not expected to live through another day. For this, her dying, all visits were accepted no matter how much “after hours.” The pastor himself came to unlock the door for us when we rang, and we walked past the dark, silent reception area — so different from its daytime brightness and bustle — to where Jane lay curled on her side in her bed. She looked tiny under the sheets, this woman who for most of my life was a towering, outgoing and whirlwind presence, fully able to live up to the strong promise of the size-12 Irish peasant feet that carried her as she strode through her days. Now her shrunken and limp body brought to mind Kermit the Frog with his skinny long legs and oversized flippers, and I had to choke down a slightly hysterically laugh at the thought. Big Jane would have appreciated the image herself, though, if I could have shared it.

She wasn’t conscious in any obvious sense. We didn’t know if she could hear us, talking about her and to her, together with our Spiritual Aunt, the youngest of her daughters, who had volunteered to take the nighttime vigil by her bedside. You’d have thought from hearing her labored breathing under the oxygen mask that every speck of life left in her was devoted to each inhale, one slow pull after the other — but when I held her hand she gripped it, and she sucked with remarkable gusto at the water sponge we used to wet her lips. The heavy plastic mask left shiny red marks on her face, and we could never seem to get it to sit comfortably after sponging her lips, but that was just one of the many things we were learning to let go of in those hours by her bedside.

*****

Waistbands have always been an issue in our family. The need for loose, soft clothing, and all kinds of other sensory-driven and mildly compulsive requirements concerning what touches our bodies, where, and how, ran through the generations even without autism yet on the horizon. We describe it lightly as being “discriminating” or “highly strung,” calling each other by the German Erbsenprinzessin (from the Princess and the Pea) in jest, but we do manage to take it to extremes at times.

One of the earliest compulsive phases I remember of Nana’s, back when I was in grade school, involved a new sewing machine and a pattern for loose-fitting, elastic-waisted, polyester knit (hush now, this was the ’70s) pants. As far as I know, Nana only ever learned how to sew this one pattern on her machine — when Eenie needed dance costumes for her jazz class, it is Opa who stepped in and got them done — but she certainly made it pay off in the dozens of pairs of loose elastic trousers in black polyester that hung in a uniform row in her closet in the suburban home of my preteen years.

I was an early riser back then, often sneaking out of bed at four or five in the morning to sit and read in the silent living room — sunken, with a totally-of-the-times orange-and-yellow shag rug and picture windows. (Opa once found me there in the pre-dawn dark sobbing helplessly over Heidi, clearly terrified that he’d stumbled on some actual tragedy in my life and I think only moderately relieved to discover it was just a book having this extreme effect on me.) One day it was I who stumbled on an early morning secret — Nana, hunched over the melamine kitchen table at her quietly whirring sewing machine, a stack of freshly sewn and carefully folded black pants towering next to her. Her machine disappeared from the house soon after, following a somewhat tense discussion with Opa in which she acknowledged that she easily had enough pants to last a lifetime now. (I’m sure the fabric itself was indestructible, and I picture those stacks of polyester still sitting in pristine shape in a landfill somewhere not far from here.)

Eenie will wear jeans, but only with the top button undone. Both Mimi and Aida prefer sweats and leggings to anything more structured.

I wonder these days if there’s a strand somewhere in our DNA that leads from Erbsenprinzessin to autism, from eccentric hypersensitivity to the ultimate form of overwhelmed sensory bombardment in Aida’s brain and body — certainly a princess in how she approaches the world, but one who could never tolerate the weight and pressure of a crown on her head!

*****

Big Jane had the same sensitive waistline, and would let out the waist of every new pair of pants until they conformed to her preferences. And in a pinch (so to speak), she was perfectly willing to just take care of things on the spot. Once in my freshman year of college I met her for lunch at Nordstrom; she began fidgeting in her chair opposite me while we waited for our food, then suddenly exclaimed: “These control-top panty hose should be banned!”, before grabbing her fork and stabbing it repeatedly up and under the waist of her pants until she was released back into her comfort zone. She was unembarrassed and unfazed by such incidents, replaced her fork on the table clear in her conviction that no one should have to allow something as piddling as overly tight hosiery interfere with a good meal.

She was barely older than I am now, when she would gather up her first five grandchildren to take the trail that led down the bluff near her house to the beach, carrying towels and packages of Oscar Meyer hotdogs and buns. She’d line us all up on a floating driftwood log to paddle in the waves — Puget Sound was all I knew to swim in, and I only learned years later that even most locals shun it as too cold — then build a fire with more driftwood and have us find pointy sticks to roast our lunch on. I learned my first version of the “five-second rule” from her: a hotdog that’s fallen in the sand is easily remedied with a quick rinse in 7UP and lots of mustard, and a little crunch of sand between your teeth never hurt anyone. Then we’d hike back up the trail home. We weren’t allowed in the house until she’d hosed us all off in the driveway; in memory she seemed to revel in our shrieks at the cold spray, and the adult me knows she probably did take pleasure in dousing out the grumpy fatigue we were probably displaying by then. You take the good with the bad, I can hear her whisper to me, but no one says you have to be an angel about it.

*****

Whether because we are a family of oddities, or simply because life in general is full of queerness and Big Jane was always avid to hear about it all — from the gossip in the small local doctors’ offices she worked in, to the true crime novels she adored — my grandmother had a fundamental acceptance of people and their quirks that never faltered.

She wasn’t a pollyanna — in fact, she was always more than ready to believe the worst would happen, sometimes to a phobic extent. Talking on the phone with her one evening I mentioned the salmon I was preparing for the girls’ dinner. “You let those babies eat fish!?” she cried in a horrified voice; and I recalled how when I was a child she firmly believed that death lurked inside every fish stick, so we always had to crush them to a pulp before eating them to eliminate any possibility of a bone slipping down our tender throats and causing us to immediately expire. She also warned me more than once to never stop in the middle of a bridge, lest it collapse, and when I protested that this seemed an extreme precaution she would say, “My dear, this is earthquake country.”

But for all her paranoias, Big Jane dealt with real life and its genuine hardships like the grand lady she was, with grace, good posture and, whenever possible, a comfortable waistline and a fresh application of hot pink lipstick. Of everyone in the family, she took the news of Aida’s disability with the most natural acceptance, acknowledging the grief and honoring the hard work I was putting in, but without gloom or theatrics. “Aida will make her own way in the world,” she would say to me, a simple certainty born of long life experience that I only slowly came to understand to be true. Her belief was rooted in some kind of faith, but one that runs deeper, I think, than her very private and personal brand of Christianity. She could easily have embraced Buddhism, for example, if she’d just been born 20 or 30 years later. Big Jane had that matriarchal Earth goddess power that comes of survival, a true Crone as raised up by Elizabeth Gilbert in her essay, absolutely unwilling to be overcome by anything that bitch Life serves us up.

*****

The call telling me of Big Jane’s passing, early that Monday morning, was shortly followed by a call from Aida’s school nurse about “a skin rash that really should be seen by a doctor immediately.” So only after picking Aida up, checking in with her house staff, coordinating a doctor’s appointment with them and getting her to it, convincing Aida — thrilled to have the day with Mom instead of at school, but wary of letting anyone near the oozing, angry red skin on her side — to let a couple of physicians examine and swab her, working through the complexities of selecting an antibiotic for a person who can’t swallow pills, and sending her on to the pharmacy and home with her house manager… Only after all that did I stop, almost on a whim, sit on a bench in the afternoon sunshine at the edge of Lake Union, put on my big sunglasses and cry.

When I was a child, in the summer, Big Jane would take her first cup of coffee outside with her early in the morning, climb the ladder of their small, above-ground pool, and recline regally on a floating mattress in her billowing white nightgown, circling slowly in the water as the sky lightened. “Don’t you want to put on your swimsuit?” we’d ask her, mildly scandalized at her behavior. She would smile and drift, and tell us we’d someday understand the value of not wasting time on such things.