It has been almost a month since my mother passed. It wasn’t unexpected. She was old and ill and tired. She wanted to go, was impatient with the way those final months seemed to drag and throw more miseries her way. I was able to mark 60 of my birthdays with her still in the flesh. How many get to say that about a parent?
And yet. My interior terrain is changing. Time has sped up and slowed down, sometimes within the same hour. I can feel my heart (which is the true mind) vibrating and stretching, opening the ears that reside there. My mother comes through as soft pressure, insistent push. She is a wind. Her message is tacit like her love always was and is and will be.
Don’t defer. You were never meant to be anyone but who you are.
I wrote the following poem a few weeks before she died.
I find myself
taking dawn personally,
the rising light an affront
to my evolving grief.
A woman could poem or go stone
silent, knowing it’s the same experience.
My relationship to the moon has changed
since my mother lay dying,
a hard crust undigested,
inside my otherwise soft belly.
The question I cannot voice
that travels with me through
this fog-graced landscape
of mother dying, dying,
is the round unabsorbed scone
of a query–
why is my mother dying, dying,
so much more intense
than father dying, dying, dead?
Dead twenty years on, he is,
and it’s not like I don’t miss him,
and she has been inserting him
Into her sentences, her fragments
as if he were welcome, as if he
were not ex-husband
for all those decades.
It wouldn’t be so bad to have him here
she said, months ago, I’d be a lot nicer to him.
Last time it was Tuesday,
six months and four days ago.
The incredible Dr. S
managed a first—
pedaling the chair back just a bit,
your face more accessible,
sunglasses shielding your eyes
from too-bright light.
He touched twenty dulled pearls
with his counter,
probing slyly, quickly,
distracting with wide smiles,
silly faces, a joke
that floated far above
Afterwards, the celebration—
high fives and calm way-to-gos, Let’s do twenty two next time.
My swells of gratitude
at the way they keep voices low,
abstain from the balloon machine
in your presence,
mark progress in teeth “counted”,
remembering how much
does not apply here, with you.
The next date carves itself
into your mind’s firm clay
soon as your tuned ears hear
Yes, that Wednesday works,
11 am, only Dr. S, please—
and we were off,
out to lunch as promised,
basil eggplant and rice with soy sauce, Mommy I have your lemon please?
Last eve he asked how it went,
this man who is more father
than your own ever was,
and my mind goes to
all those years
of terror and call-aheads—
Remember to have extra staff available,
three is best.
I’ll bring my own bowl
because she always vomits,
no whirring machines, lights low,
don’t even try to put metal in her mouth—
and then I’m back here
with him, with you,
and we see something like
(could it be?)
lighting your round face
as you crow I did so well
at the tooth doctor.
Adrift. That’s the word that floated into my teary vision as I sat in my car outside the facility my mother has resided in for the past seven years. These after-visit pauses have become part of my ritual in the past few months.
There is always someplace else I need to be, fitting in my mother’s care and comfort as I do between the over-arching needs of my autistic daughter and the other pieces of my life’s work. I just can’t seem to rush off the way I used to, though. I need these little islands of time and quiet to process the latest iterations of mum’s decline. The downhill roll has picked up speed, it seems, as she moves ever closer to the time she’ll leave her body.
My mother and I have talked about dying, death, and the afterwards for decades, beginning when I was a teenager. Sometimes in snippets, sometimes in long, deep conversations, we’d discuss some new perspective one of us had gained through a book, a life shift, or our individual growth. We share more than a few overlapping beliefs about the life of the soul. It’s a sturdy connection between us, a deep comfort during this time where so much is tenuous.
Mum’s body is weakening. At 93, cancer and several peripheral conditions seem to be simultaneously consuming her from within. Her cognition is variable, too—sometimes sharp and clear, her signature intelligence and humor intact and vibrant. Other times—more frequently by the week now,—she is confused, delusional. The combined body-mind decline makes it exponentially harder for her to complete simple tasks like getting dressed and staying hydrated. She chafes against what is happening, has told many in her web of family and friends that she’s lived long enough, has no intention of reaching her 94th birthday. At least once a week, we’ll have some iteration of this verbal volley:
Mum: This isn’t the way I planned for things to go.
Me: I know, but we don’t get to choose.
Mum: Yeah, but this is taking too long.
At which point one or both of us will manage a wry sigh.
Mum has been traveling a great deal lately. She’ll relay her trips to me and my siblings when we call or visit.
I’m exhausted. I was in England last night.
Oh? Where in England?
At the palace.
I was up in Maine with so-and-so. I had to sleep on the uncomfortable bed in the cabin. We couldn’t get back here until today. I am sooo tired.
Several times, she’s been upset, almost frantic, wondering where we (her four children) all are and what she is going to cook for our supper. There has also been frequent mention of a baby that she needs to take care of. She isn’t sure whose baby it is, only that the child is in her charge.
My late father has shown up a few times, too. Though they were divorced in 1976, his appearances seem benign, even welcome.
She will often be at least partially aware that she is describing an illusion, but each feels very real to her. I think she is straddling different dimensions, moving almost fluidly between them. I’ve said as much, and if the cloud cover in her brain is minimal that day, she’ll agree, or say maybe, but it’s not fun.
These past ten months or so have been all colors of challenging, fascinating, sad, beautiful, and draining. I’ve been aching to get some of it down on paper. Time, and concern for her privacy, have kept me from trying. A few weeks ago, though, when she was quite lucid, I told her that I want to write about it. I don’t want to be disrespectful, I said. I don’t want to intrude on your inner life or claim it. I just want to write about my experience of it, of moving through this with you. Her answer astonished me. How can it be disrespectful? she said. It’s what is happening.
Recently, she misplaced her lower dentures. Logic led me to look behind her bed, which is where I found them. She was amazed at this, and exclaimed that it must be my fairies that told me where to look. (I do often ask the angels for help when something is missing, and while I didn’t call on them that particular day, she remembered this.)
Mum: What do your fairies say today?
Me: They say ……. they say it is a honor and a privilege to help walk someone home.
And so it is. Only those that predecease their parents avoid this bittersweet reckoning, these fraught goodbyes that will render us orphans. It is gut-wrenching, but if that’s my experience I know my dear mother is living it one hundredfold stronger. I’m grateful to be there to help ease her way. When I’m wrung out and not sure how I can keep rising to the dual caregiving of daughter and mother, the fairies will be there to remind me— it is a honor and a privilege to help walk someone home.
What do we know for sure? I find myself wondering, lately, if we mostly hold the beliefs that suit our ease.
For some, self-contempt can provide a kind of familiarity which becomes belief. For others, there is ease in what’s left after all the anger—which is really a mutation of pain—gets bored and leaves, or burns away. Some find their peace in caring for others. Some may see truth in the days that offer little resistance to their status quo. Most of us may host a little of each of these.
Here’s a piece of what I know.
The dresser in my bedroom chafes at being called mine, or ours. It doesn’t relate to our words bureau, chest of drawers, or, for that matter, dresser. It prefers to be called proprietor. For this I hold deep respect, just as this proprietor holds my property.
I suspect the clothing and jewelry held therein does not necessarily enjoy being called those words we use for them. I’ve no way of knowing this, for I don’t have a conversational relationship with them. Well, except for the pyramid pendant that belonged to my mother.
Everything is sentient, but everything doesn’t always choose to be perceived that way. That is my experience, and therefore it is fact in my world. I feel no urge to lay that belief on you, though.
My daughter’s ways of being defy most norms. Manners are a great challenge for her. If anxiety and compulsion press her towards your nose, looking for the relief that a single light touch seems to bring, your negative reaction can send her spiraling into a small terror. She will remember you and that moment forever. Years from now she may be able to recite the day and date that you recoiled from her attempted touch. She will be repeating any comments you made, in a pretty good approximation of your volume and tone, into her tape recorder and into the air. She will scrawl about this in many a scribbly journal. She will not like you. Progress means she didn’t vomit when you said NO.
My daughter, a grown woman by any age standard, remains delightfully child-like in the ways she reacts to the world around her. She knows the colors of every song you could play for her. She struggles to understand that you don’t have such a skill. She sings when the urge strikes her, audience or no.
In the past few years, she is increasingly able to relate the experiences of her past. This can be…
Quite wonderful; On 4/7/16 you started having gooey oyster. (Her words for my soft hair).
Enlightening: The reason I cried on the bagnadahl grass girl Teletubby Wednesday is because the rice had cold texture. (No, I can’t tell you exactly what this means, but she clearly did not like the rice on that day!)
Horrifying: “Mommy XYZ dragged me and pushed me and screamed at me.” XYZ was a teacher she had when she was under 10 years old. “Mommy why XYZ said I hate you?” Daughter does not know how to lie, so I have no doubt this happened to her. “I didn’t have the words to tell you back then.” These particular deeply upsetting revelations led to my first two dozen attempts to introduce the word *abuse* into the teaching moments about how others should treat us.
I do not question what my daughter knows for sure, just as I wouldn’t second guess your right to name your own knowing. You don’t need to hear the proprietor speak in order to believe that I do. It’s the free sharing of our individual lived experiences—which includes deep listening—the alchemy of honesty and curiosity and respect, that seems to prod the important conversations. Rich fodder for growth.
just shy of sunrise,
all over the land
reached for their small screens,
hungry for the tiny words and pictures,
memes and videos designed
to amuse, entrance,
distract from stress
and angst of bad news
The people found ways to laugh,
or groan, and see themselves
in the scowls and smiles
highlighted in the glowing rectangles
carried lovingly in their hands
on the way to coffee, couch,
another screen or two
performed their daily
clouds merging and shifting,
watercolor hues melting into each other.
and great glories of birds
synced their choruses
in time with ascending light.
Stories floated on the early breezes,
timeless wisdoms woven into the mosaics
of bark and leaf and urgent bud,
fed by roots
deeper and broader
than any iteration
of wide screen
over any fireplace
in any dwelling.
Grass held dew
like an offering.
Silence hovered uncertainly
between chirp and trill,
wind and caw,
waiting to see
who would welcome
the peace, calm and beauty
bonded pairs would grunt in passing—
conversations eclipsed by texts
as if seeing and speaking
to one another
that everyone knew
just stole energy
from the flashier screens
telling them how to think and feel,
act and buy.
Outside and unattended—
solace of cool air,
magic lavender light,
the nourishing feel
of earth under bare feet,
dirt beneath fingernails,
crunch of old pine needles
under kneeling knees
in the forest—
a glorious bounty
always free and waiting
beyond our screens.
Ten years ago, April was designated Autism Awareness month. April 2 is World Autism Awareness day. There has been a movement towards renaming both of these, replacing awareness with acceptance .
Robert Frost wrote,” Always fall in love with what you’re asked to accept. Take what is given, and make it over your way. My aim in life has always been to hold my own with whatever’s going. Not against: with.”
I don’t know many people who fight against the reality of autism. On the contrary, I know dozens of folks who have grasped their circumstances with both hands and shaped them into something meaningful, useful and beautiful. Affected individuals have found ways to educate non-autistic folk and improve the lives of others on the spectrum. Parents of children with the diagnosis have created organizations to assist with creative housing solutions, adapt recreational activities, and push legislation to protect our vulnerable loved ones from abuse and neglect.
I wrote the below poem four years ago. Today seems an appropriate time to share it once again.
Autism Awareness month is April,
World Autism Awareness Day, April 2
and, in case the day lacks color,
(as if any day with Autism in it could be dull),
the mysterious Namers-of-Days-and-months
have painted it a medium sort of blue.
I wonder who decided this;
and how it was chosen,
this perfectly ordinary second day,
and weighted with a long middle
moniker, like a fish
plucked out of the ocean,
tagged and thrown back
into what used to be
a perfectly ordinary fourth month.
And why a color? Why this one?
Does Autism look like blue
Pondering this, I roll up my sleeves,
prep the tub for her,
the one who turned my life on its ear,
she who makes me laugh,
she who wears me out,
she who is a master of repetition,
she who defies reduction,
who is multi-colored, many-hued.
She who is unaware of your awareness,
who, if asked, would mutter “ Not interesting”,
she who needs help with a bath
but can take a thing
and spell it backwards,
report to the air/no one in particular
how many redundant vowels it contains,
and how her lunch reminds her
of Home on the Range.
She who hears songs in color,
who does not stay in her bed all night,
who is frightened of beads with holes,
she who knows if there’s a day to be aware of
it’s the fourth Friday in February,
which is called Ate Baby Kate, and that means bad,
and therefore must be worried about
many months in advance,
she who can sing whole CDs in order,
she who tells me thirty times a day
that I’m a girl ( in case I forget)
She who needs more than I have
who gives more than I need
who has more than you think,
who is more, so much more,
than you give her credit for.
And so, dear you-who-aren’t-aware,
please allow me to set the record straight.
Autism is multi-colored,
and awareness is every single day,
and no blue second day of any fourth month
will ever matter more
than your interest, your kindness, your respect,
your willingness to help us challenge
a world that would reduce anyone
to an assumption
or a label
in one color
on one day
within one month.
I’ve written a fair amount about life with my adult child. As I plod ever so slowly towards creating a book about the journey, it occurs to me that the pace at which I’m working on that is in sync with the overall pace and rhythm of our life together. Bink will turn 28 this weekend. I’m not one to fixate on the differences between her development and that of a “typical” young adult, but the anniversary of her birth seems to stir things up for me. From that churn this poem arose.
The View from Here
you just caught glimpses
of your child
as he sped past toddlerhood,
towards those labels
that mean everything
and nothing: child, tween,
teen, young adult.
Glimpses, you say,
as if it all tornadoed past you
while I stood stupefied,
hands in pockets,
by the side of some dusty cow path,
a perpetual look of dull
surprise on my unremarkable face.
over here our lives
are nothing like that.
We have plodded along
like turtles in the too-hot sun,
she and I,
pausing every few feet
to rest, to allow her
a few attempts at integrating
the latest sensory assault,
which could have been a wind
shaking the branches too fast,
or the distant sound
of a jake brake on a downhill semi
from a highway half a mile away.
Her needs are special,
which means our shimmy
is your slow dance,
seem like simple addition
to your kid’s calculus.
I’m used to it,
adept at appreciating
the kinds of beauty
that decorate this life
that chose me, and her.
It’s not the pace of it all
that leaves me sweaty
and gasping for breath.
It’s my head spinning
as your children date
and learn to drive,
go to college,
buy a house,
flying so far from your nest
you can’t squint enough
to make out the tiny dot
their bodies make
as they soar onward,
commanding the skies.
It’s been just over a month since my dear friend and soul sister Marina died, after a quick and nasty tussle with appendiceal cancer. She visits my consciousness daily, in ways both fleeting and substantial. We talked a lot about the afterlife in her last months. She told me clearly that, when she visits me after her death, she’d make herself known in a way that looks like dragonflies.
The first sighting occurred less than twelve hours after she passed. I was with Bink, walking at one of our favorite Audubon sites. There, a trail unrolls through a little forest before splitting itself in two. To the right, a lovely treed path eventually leads to a small bridged dam, pausing before heading into more woods and on beside a waterfall.
Choice two runs straight ahead at the fork to a wee bridge that cinches a pond on either side. This beckons onto a boardwalk over more water, with an option to follow a path into an almost wildly overgrown bit of land.
It’s a magical place, one that my little family appreciates tremendously. That final Sunday in June was the first time Bink and I had been back since Covid-19 had closed most Audubon trails in mid March. We were delighted to learn of the re-opening, in time to greet the summer growth gracing the land. Across the water, a thick blanket of lily pads hosted frogs napping in the sun. Turtles rested atop rocks protruding from the pond. The air buzzed with insect life.
It was on the boardwalk that the first dragonfly came into my vision. She hung in the air in front of me, sunlight shimmering off her blue-green body. I tried to capture a picture of her, but each time I positioned my iphone she flitted out of the screen.
Soon, I noticed more dragonflies. Different colors and sizes, all dancing and hovering around me and Bink and above the water. Well, I told myself, this is dragonfly heaven! Of course they are here. Doesn’t mean that it’s Marina.
At home a few days later, Superguy pointed wordlessly out the window over our kitchen sink. We have planter boxes and a large pot or two on the deck out there. A lone dragonfly hovered in the thick air between a raised box and the plants thriving in the pot next to it. Thirty seconds, one minute. Maybe two. There she is, I thought. She’s here, he may have said.
Earlier this month, we stayed at a small rental on the Cape for a week. It was a hasty decision we made back in February, pre-Covid. The house we’d rented and loved for years had sold recently, and we were mourning the loss of that sweet yearly week. We’d driven down to the area to look for another option, hoping for something, anything, that would be within a short walk to the beach we love.
We found a cottage and were able to view the inside. It was much smaller than the previous one, paneled in pine that was darkened by age. It was also available for a week this summer! We put a deposit down on the spot.
Marina, whom I’d seen the month before, had not yet been diagnosed with the cancer that would take her life. She’d been tired when I saw her, and only vaguely aware of some indigestion.
When my little family arrived for our July week at the cottage, we went around to the back door to retrieve the hidden key the owner had told us about. There was a metal sculpture on the backside of the house. Hmmm, I thought. Dragonfly? No, it looked more like a butterfly.
We went inside. The small kitchen opened out into an equally compact dining area and living room. There, on a shelf looking out towards the front window, was a colorful square canvas with—you guessed it—a beautiful dragonfly on it. Tears welled up in my eyes.
In the bedroom off the kitchen, the same dark wood covered the walls. Superguy was the one who spotted it first: the sole decoration in that room was a colorful cohort of dragonflies, rendered in metal and nailed to the wall.
A few days after we arrived, my love said,” Hey, did you notice the dragonfly art by the back door?” “Oh, yes,” said I. But I think it’s actually a butterfly. Noooo, he mouthed soundlessly, his silver hair catching the scant light from the back door as he shook his head. We went out to examine it more closely. “See this elongated body? That’s not a butterfly. It’s a dragonfly.” And so it was.
Bink loves to swim. Recently, as she swam in a local lake, her head bowed as she dipped her curious, goggled eyes beneath the surface, M landed lightly on her back. She stayed there for several minutes, not moving.
Another day, a dragonfly appeared on the inside wall of our garage. She just sat there, watching and being watched, for a long time.
I’ve made online connections with others who knew and loved Marina. There have been strings of messages between us, and a tender Zoom memorial service this past weekend. We’re scattered around the globe, yet many of us have had dragonfly sightings in recent weeks.
Sometimes, I hear Marina talking to me. It’s reassurance that all is well, that she is indeed in bliss. There’s more, though.
Marina was an artist. Like many creatives, it took her a long time to truly and firmly believe in her art. It was only in the last two years she was financially able to cut her “real world” work to a minimum and give her deep attention to the gestation and birth of her evolving artwork.
She first knew me as a young poet. At twenty, I was untamed and bohemian. Poetry poured through my fingers when I sat with a journal. Through the years, my visiting time with Marina was often spent making art, with hours of talking and laughing punctuated by periods of absolute, easy silence.
One of the gifts my friend tried to give me over the last few years was what she called the YES, AND. Marina understood the constraints of my life circumstances over the past few decades. Through my descriptions, and the perpetual need to do careful advance planning for our scant visits or even our phone calls, she had a good sense of what is involved with parenting a child who has significant special needs.
She knew that I love my daughter without limits and beyond comprehension, that my commitment to her wellness and growth is lifelong and unwavering.
She also knew how I longed, long to have great expanses of unfettered time to write and paint and make art with beach stones and fully explore the wellspring of creativity that has always been part of my bone structure.
“Don’t starve your soul,” she’d say. “YES, you are an amazing mother. YES, your daughter needs you. AND—make time for the art. You have books inside you and your painting is full of Goddess energy and whimsy and you need to let it out. Don’t let it die.”
Sometimes, I accepted the gift of her words graciously, gave them a nod, then dove right back into the thick stew of my life. A few times, I let her words really penetrate. Paintings would come to life in snatches of time. Poems would press themselves out in pieces on my Mac, waiting patiently to be shepherded into something complete and satisfying.
When Marina extends her energy into my moments now, she knows I feel her offering gifts again. If she were in the flesh, she’d say YES. It’s a full plate. Covid has magnified it all. Bink will always need. AND you need to tend your whole garden, sweetie. The whole damned thing.”