Me and My Shadow Go to Market

It is May 2020,
still early in
The Covid Times.

We take ourselves to the market,
by which I mean
our whole selves,
me in my layers of
self-consciousness—
the run of the mill kind
that most of us don
without thought—

she baring all, as usual:
no pretense, nothing to hide.

The market rule
in the time of virus:
No touching anything, honey,
except yourself or Mom.

We’ve gotten good at this one,
practicing since mid-March,
and so we go,
in service to our shopping list,
following the one way arrows
like breadcrumbs,

and her singing beams
a Disney-flavored sunshine
up and down the aisles
even through her mask.

She pauses in front of the dairy section,
(which means I pause, too)
halts her sunbeaming mid-song,
and announces to the floor,
” Mommy it looks like I have to pee.”

No beats to skip,
for we are well prepared,
the purple handled pee jug
bagged and ready
in the backpack,

nestling up against
the toilet paper,
flanked by two packs
of antiseptic wipes,

and into the bathroom we go,
my shoulder managing doors,
finding a stall, hooking
pack to hang,

pulling out
that magnificent portable
receiver of pee
that makes all outings
seem possible,
conquerable.

We navigate this
like so many other things,
my thought out plan
for safety and practicality

backlit by the simplicity
of her needs,
which aren’t so much special
as they are honest,

the whole thing shined up
by my gratitude, in recent years,
that she can name the feelings,
usually in time to stay dry.

We are each engaged
in familiar activities:
she is peeing
and I am musing,

wondering
and marveling
at what the world could be
if we were all more like her:

free of innuendo,
honest to a fault,
unable to fathom
marching to any beat
but our own.

–Melinda Coppola

Gifts and Visitations

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.”

–Melinda Coppola

Dragonflies

Image by Rona Kline

Image by Rona Kline

As I write this, my dear friend Marina lies dying in a lovely room inside the oldest house in an historic and pretty New Hampshire town. A wonderful woman who worked with her in the local general store has taken her into her home. Hospice has set her up well with a hospital bed that adjusts in many ways and keeps moving different parts of her body to prevent some of the pain associated with not being able to get out of bed.

A mere six months ago, Marina was celebrating the purchase of a little house in New Mexico, old stomping grounds for her. She envisioned growing old there while making her art and reconnecting with the culture in an area of the country she has long loved for its people and its wide, open skies. She planned to move there this month, just after celebrating her solo art show at The Newton Free Library the first week of June.

Covid 19 would likely have postponed the show, as it slowed or halted so many things. The pandemic burst into dominance at the same time that my friend had a scan that looked very suspect.

Her journey has been fraught with suffering and pain as the diagnoses and prognoses grew increasingly dark through the weeks. She has had deep sorrow, and also joy and gratitude and acceptance. I’ve written a bit about this already, and it isn’t actually what I’ve come here to the page to say.

We humans can be so apathetic about being incarnated. We act as if we have unlimited time, as if each day isn’t positively bursting with beauty and grace and opportunities to bring meaning and comfort to at least one other being.

Many of us are quite good at identifying what we don’t want and don’t like. We tend to focus on those things, and it can feel easier to blame the ensuing feelings on outside circumstances. We seem to expend enormous energy tearing each other down.

Though I am a great advocate of the practices of presence and loving kindness, I’m far from immune to the easy drop into anxiety and despair. I can make an impressive list of Everything That Sucks as fast as the next person. I can bemoan the ways in which Other People are directly contributing to the pain and suffering of the larger world and to my own little sphere as well. I can list twenty ways the shutdown has created enormous distress and anxiety for families like ours that include an individual with special needs.

The pandemic and cancer diagnoses are among the teachers that remind us how little control we actually have over many of the circumstances of our lives. Those same professorial forces can illustrate our superpowers. We all have them. Most days, I think, we can choose to do and to be in ways that can make an enormous difference to all living things—people and animals and trees and flowers. We can choose to be present with each other, to listen deeply and hold each being with respect and regard and learn great things that can alter the ways we treat each other and our earth.

Each life is precious. Life itself is an exquisite gift. Everyone has a story, everyone carries pain and joy. We are all works in progress, weaving tapestries of our memories and experiences. No two will look the same, and we have so much to teach each other.

My friend has stopped eating and drinking, and she is mostly nonresponsive now. I know that she’ll graduate into the great love that surrounds us and created us. She knows this, too. “Look for the dragonflies,” she told me a few weeks ago. A few days after that, “Look for dragonflies. Especially the unusual ones.”

Dragonflies represent transformation and adaptability and wisdom. They are associated with water, that magical, life-giving, shape shifter element that adapts to every container and circumstance. My friend has had one tattooed on her left arm for quite a long time, now. I didn’t tell her that I’ve never felt a strong pull towards them. I know that is about to change.

–Melinda Coppola
Post Script: Marina Powdermaker passed away in the first hour of Sunday, June 28, 2020. She was two months shy of her 59th birthday.

Little Big Thing

“Stay in awe of life. The little things are the big things. “ ― Richie Norton

“I’m cold.” Bink had just gotten up, a good hour later than she used to get up on any given pre-Covid Monday.

My eyes scanned her body, noting the hybrid pajamas I’d hastily grabbed for her to put on after her bath the evening before. The top, a pale pink waffle weave that had seen better days, was from a winter set. The sleeves had been cut shorter so they wouldn’t get wet when she washed her hands. She was sporting knee length summer-ish bottoms, made of a lighter weight fabric in a brighter shade of pink. They, too, were once part of a matched ensemble. Sets of things don’t stay together for long in our house. Her feet were bare.

“Hmmm,” I said. “You could put on a sweatshirt, and maybe some socks.”

Individuals with autism can have great difficulty with body awareness, which includes processing sensations and emotions. It’s only in the past few years that Bink has been able to identify a recent feeling or experience, and relay it to me within a few moments or even a few days. This happens sporadically, and I don’t take it for granted. Someday she won’t have me to instinctively understand her and help interpret her actions for a world that can’t. Though she will never live alone, and will always need help, any gains she can make in the self-care department will contribute to her comfort.

She trundled off towards her room, and a few minutes later I heard her addressing me as if I was right there with her. I sighed, feeling the familiar words rising in my throat. You need to come to where I am if you want me to hear you. I would have had to yell them down the hall, though, so I stuffed them back down into the room inside of me where I store frequently used sentences and expressions.

When I entered her bedroom, which is pink on pink and accented with more pink, she was standing in front of the closet looking in. “Mommy I don’t see the sweatshirt.” I instantly understood that she was looking for a hooded, full- zip sweatshirt. After all, that’s the kind we’d both been wearing recently on our walks outside. Let’s wear sweatshirts, I’ve been saying, as much to myself as to Bink or Superguy, as we get ready for our strolls and our hikes.

I pointed to one of her many pink crewneck sweatshirts that she’s been wearing all winter and most of this cool spring. “These are also sweatshirts,” I said, knowing she knew this, too, in some currently inaccessible part of her brain.

We moved through our morning rituals, which go something like this:

Bink texts me a question. A typical question might be Why did ______________ (insert the name of a teacher she had back in, oh, 2001) say such-and such (she’ll repeat the words that were said to her, verbatim) in a block voice on a tears boy Friday? I create my best guess answer for that day and video it back to her. If she likes my answer, my tone of voice, or the image that goes along with the video, she’ll save it and watch it over and over. The questions can be quite repetitive, and my answers may be as well. When this is addressed, she’ll say, “I’m just trying to understand it.”

Next, she texts me a short statement, something like Mommy has pinkalicious hair. She’ll await my brief, verbal response—Yes I do! Or thank you.

She scrawls in her Dream Journal after that, and asks me to read it aloud. These entries might be just a short sentence or two, or they might be a few pages long. At times, they read like recalled dreams might, with odd events like swimming in dream halls or being told she must have a bowl of beads without holes for breakfast. More often, they seem to be just thoughts, usually of the song reference type that frequent her brain in awake hours. “The man sounded like Al Simmons and John Langstaff on Johnny’s Fiddle.”

Welcome to the magical mind of my daughter.

On this particular Monday, we’d gone through our morning triad. Typically (pre-Covid) she’d begin obsessing about some detail of her upcoming day or week that she was worried about, but in these long weeks of Shutdown when all her typical activities are cancelled, she mostly fixates on The Plan. Lunch, treat, where we will walk or hike, and dinner options. Instead, she said,” I was cold in the night.”

Fabulous. Another example of her blossoming ability to identify an experience she has and convey it in a way that others can understand, in a matter of hours or days as opposed to years! I took a good long moment to savor this, then turned to her and asked, ever so gently, “Hmmm. What can we do when we feel cold?”

Bink can tell you what day of the week your birthday will fall on in 2024. She can spot triplicate numbers on the license plate of a car that speeds by so fast I barely notice the color. She can recall the exact words and tone of voice used by anyone who’s ever scolded her, and can likely remember the day, month and year it happened, too.

The integration of other concepts that seem so basic to many of us, like knowing when to don and doff another layer of clothing or a second blanket, is much more challenging for her. The first step—identifying the discomfort— seems to be happening more often for Bink. Little victories like these seem even sweeter during this period of shutdown, with more time to notice them.

Collateral Sorrow

Art by Marina Powdermaker


It’s been a time of times, a steady landslide of uncertainties. Yes, the Covid, the shutdown. Yes, Bink and so many other adults with disabilities being home all day every day for many weeks, with all the usual programs and activities canceled. Yes, the mass suffering and loss that has accompanied this pandemic around the globe. Like so many others, I’ve been all over the place emotionally and mentally.

All that has paled, though, in comparison to another great big unfolding. Marina, a dear friend of mine, has been diagnosed with a rare and very aggressive cancer. Stage four. She lives in a different state, and I haven’t been able to see her.

The news about her condition came at about the same time everything began to shut down. In a dizzying 9.5 weeks she has been through a surgery that was far more extensive than she expected, dealt with the after effects of that with multiple pain medications that haven’t worked very well, grappled with treatment plans. Each subsequent appointment with specialists has brought grimmer news, with predicted possible life expectancies going from a possible two years down to months. Yesterday a doctor told her that if she opts for no treatment at all, she may only have “days to weeks.”

She had a chemotherapy port installed in her chest, but crippling daily and nightly pain led to more diagnostics, and then confirmation that the cancer has spread into her bones. Radiation, which can’t begin until next week, may help the pain but will delay chemo. The first available chemo appointment may be almost two weeks away. She’s been told hospice is not an option if she opts for chemotherapy. Can you imagine riding on this monstrous roller coaster, exacerbated by Covid complications that keep her from close contact with those she loves? If ever there is a time someone needs hugs and loving touch, this is it. Her beloved cats, whose affection has been balm to her, had to be rehomed due to her inability to care for them.

During this turbulence, Marina, who has given me permission to tell you about her, dipped into Laurie Wagner’s free offering of her Wild Writing course. Each morning for 27 days, participants received a video of Laurie reading a poem, and were encouraged to use the lines as a prompt for free form writing. I’ve yet to take one of Laurie’s courses, but I’ve heard many good things.

Marina is a multimedia artist. She’s never considered herself to be a writer. During the Wild Writing course, she wrote on the days she could manage it, and she’s shared some of her words with me. Such raw and achingly beautiful writing! I keep telling her I want to see it all on the page, and online, for everyone to experience.

I’ve been pretty blocked (understatement) in my own writing lately. It’s true that my main daily focus has been keeping Bink occupied and well fed and reasonably content. There hasn’t been a lot of time for writing, or editing. My bitchy inner critic has also been strident in her attempts to silence me, and I’ve let her. There have been pockets for painting and drawing, but those creations seem to be content with five or ten minutes of attention in between the cycles of care giving.

There is so much I want to say, about endings and beginnings and life and death and change. If Marina can pick up a pen and allow such fierce and tender writing to come forth in the midst of her great challenges, than I can certainly let some of my own wordy impulses break free and overwhelm the block. I can do this in her honor.

For today, just one more thing. Please check out Marina’s art HERE.
She does layered, amazingly textured pieces that, like opals, look different in every light.

Take good and gentle care of yourself, and maybe go call or text or write someone you care about. Tell them a specific something you love about them. The world and all her people need more love.

–Melinda Coppola

The Uninvited Guests

What a time! We are seeing and hearing wide ranging effects of the Covid-19 pandemic on, it seems, every populated part of our planet.

In our corner of the world, Bink’s autism and accompanying dependence on schedules has collided headfirst with current realities. Every activity in her life, from her weekday program to her favored leisure activities, has been cancelled. Much of the structure she counts on has fallen away. Anxiety and perseveration, already frequent visitors in our home, have announced their return. They brought lots of luggage, too, apparently planning to stay awhile.

Will we get through it? Of course. Many have far worse situations. This is, however, a particular kind of challenge for Bink and others like her. She asks many questions, and fully expects me to have the answers.

Longing

to help you know
in your bones, child,
in your bones,
this will pass.

This will pass and
I’m longing
to have you know
we will again be free
to dip in and out
of those beloved scrawls
on your wall calendar—

horse riding,
and art class,
the candy and craft stores,
restaurants,
swimming at the Y,
and your weekly volunteer job
neatening the bins
at the toy store,
pricing stuffed animals.

You will
once again
return to your day program
where you may even welcome
those groups
you do not love.

I know in my bones,
which are just older versions
of your own,
that this will pass by,

all things do,
and we will re-rise,
rise again,
grateful and eager
to push forth into the
too-loud world,

carrying earplugs
and fidget toys,
your soft pink ball
of yarn.

Until then,
my frightened
full grown child,

I will be here,
right here,
to answer your questions,
daily, hourly,

No,
this won’t for last 100 days.
No,
this won’t be for your whole life.

Yes, we’ll go out walking
today
and tomorrow,
and every day.

No
this won’t be forever,
No
I don’t know the day,
the hour
it will end.

Yes,
the power will stay on,

this will pass.
I’m longing
to help you know
this will end.

—Melinda Coppola

Brown Girl Hair Has Left the Building

Bink loves girl hair. For the uninitiated, this translates to long straight hair hanging down, on a female of any age. Preferably, the hair should be visible equally on the right and left sides of her head.

I’ve had long brown hair for 25 of my daughter’s 27 years. At one point, it grazed the small of my back. Bink loves reaching for a lock of my hair, especially when she gets up in the morning, when we part and reconnect during the day, when she is feeling anxious, and before she goes to sleep. Brown Girl Hair has even become my sometime moniker. Superguy has been known to refer to me as BGH (for short) in his texted or emailed communications with Bink, or when he addresses me in a birthday card.

In addition to being Brown Girl Hair, I’ve also been identified as Gooey Oyster. That means soft, smooth, silky hair in Bink’s world. Through no fault of mine, she loves raw oysters. And, to her sensibilities they are smooth and silky soft, like my hair. So she’s used the Gooey Oyster identifier along with Brown Girl Hair for some time.

Bink would prefer my hair down all the time, but my life is rather active. When I am cooking, cleaning, exercising, teaching (or doing) Yoga, caring for the cats and many of my other miscellaneous occupations, it is much easier and more practical to tuck it all up into a quick bun. This has led Bink to write, “You are not bread.” on napkins and leave them around the house for me to see, or to record into her tape player, ”Mom should not have a bun because she is not bread.”

We have been known to negotiate. “Hair down?” she’ll ask. “I’m cooking,” I’ll respond, perhaps for the fifth time. “Hair down at 4:40?” she’ll say, with an edge of faint hysteria in her voice. “I’ll put my hair down at 5 o’clock.” And so on.

I’ve loved hosting long hair at many points in my life, and other times I’ve tolerated it. Snarls happen easily, and the high-quality conditioner and combing in the shower precedes the two hour drying process. No hair dryer, except for the bangs. I’ve no time or patience for the tedium of all that hand-held noise, and it’s not good for the hair, either. There’s also the impracticality of having my long—albeit soft and shiny, gooey oysteresque—locks hang down and hinder my free vision or motion. Worse yet, it can inadvertently get dipped into a pool of mystery goo on a counter, or catch some errant cat food as I bend to clean up after our messy felines. Sometimes, I’ve found myself feeling tired of the process required to maintain all that girl hair.

I’ve broached the topic of Cutting It many times with Bink, who has reacted with a variety of expressions of displeasure, anxiety, and horror. When asked what she loves about her Mom, Bink will inevitably say, ”Her brown girl hair/gooey oyster.” I’ve often joked that, if I cut my hair short, my daughter would be in the market for a new mom.

She grows older, though, as do I. Signs of flexibility and maturity have been showing themselves in the past few years, particularly as Superguy and I push the envelope more. We are, after all, in the service of helping her become more independent, given that there will come a day when she will have to live without us. (Deep, heavy sigh inserted here. Topic of another blog post, or another fifty of them.)

I’ll be fifty-nine in a few months. I’m keen on decluttering my calendar and my environment. I have never been more aware of the need to make room for the things that really matter, like good health, and quality time with beings I love, and for the book that needs to gestate inside me. A new yen to Cut It Off began to make itself known in the past month or so.

Cue new consult with Superguy and Bink. “No,” she said. “Not above the shoulders,” said he. I reminded them gently that, despite evidence to the contrary, my hair belongs to me. And I was ready to cut it.

“It won’t be super short,” I assure them. “But I am getting it cut. I will let you know when it is going to happen, and everything will be OK.” And, you know what? It was.

A few days later, just before Christmas, I walked into a hair salon I’d never been to and plopped down my 25% off coupon. I told the lovely lady wielding the scary looking scissors that I was ready for a change. “But, not too short. And, I’m not a high maintenance type. I’m not going to put products into my hair and spend time in front of the mirror blow drying my mane into submission. And, I still need to be able to put it back, or up.” And then I let go. Kind of.

That afternoon, I picked up Bink from her day program wearing my new ‘do. She’d been warned, and after her name was called she peeked anxiously around the corner to assess the damage. Then she trundled towards me and put her hand up to touch my shiny, freshly-blown-out hair that would probably not look that stylish again until or unless I visited a salon.

“It’s still Gooey Oyster,” she said, and my heart got all melt-y and began to drip big blobs of love and appreciation all over the Pergo floor. My girl was doing her best to find a positive in this situation that she’d been dreading for years. Though Superguy and a few select others would have some sense of what a big deal this was and is, only I knew the true magnitude of that moment in the lobby of her day program. It could so easily have gone a different way; and it didn’t, because she is amazing and wonderful and she is growing and changing and she defies expectations more often than I probably give her credit for.

Bink is used to it now. She informs me at least daily, ”You’re not girl hair but you’re still gooey oyster!” Only twice has she wondered aloud if I’ll ever have girl hair again.

I do feel inclined to tell you, reader, that my hair is not actually short in anyone’s estimation except Bink’s. I had about six inches cut off, which leaves me with layers that end below shoulder level. It’s easier to manage this length, for sure, but I also feel benefits beyond shorter drying time and fewer tangles.

Bink’s willingness to bend and her ability to adjust to this big modification of one of her major comfort items leaves me feeling hopeful and proud, and lighter in more ways than one.

–Melinda Coppola

My Daughter, the Foodie

The Pies by Bink

Bink loves food. In fact, her relationship with it goes far beyond what tastes good and satisfies her hunger. She loves looking at cookbooks, finding recipes on the computer, and watching cooking shows. The painting subject she selects for her weekly art class is often something edible. The paintings on our walls at home, and the stacked finished canvases along the baseboard in the living room, depict pies, ice cream sundaes, candy apples, oysters, brie cheese, jars of pickles, and other things that make her mouth water.

She enjoys cooking and baking. Although she needs the substantial assistance of another adult and takes frequent breaks, her enthusiasm about picking recipes and helping to make them is always high.

One of my favorite observations about this love affair Bink has with food is the photography it’s generated. The girl takes pictures of everything she eats, or finds appealing. That “everything” means every rendition. If she tastes her own meal or snack and finds it lacking, she has learned to say, sometimes, that it needs more salt, or sweet, or some vinegar. Once the missing taste is added, she’ll take another picture. The food on her plate may look exactly the same as it did a few moments before, but to her it is quite new.

A definite omnivore, my daughter wouldn’t dream of eating pedestrian fare like hamburgers, hot dogs, French fries, or chicken nuggets. I certainly have no problem with her avoidance of those foods, and I do celebrate her widening palate. When she was three years old, she went through a phase where she would eat only blueberries and dry Cheerios. Neither is on her Yes list now. So, what does she eat?

Bink is attracted to the spicy, the sweet, the pungent, and the pickled. In her relatively short life, she’s enjoyed an enormous variety of comestibles that you’ve likely never granted transport across your own lips. She once had Ostrich Carpaccio with her father when she was about ten years old. She loved it, as she has also relished occasional octopus, eel, braised rabbit, many kinds of lamb, a rainbow of pickled plant life, anchovies prepared a number of ways, and a small variety of dried spiced crickets. She salivates at the thought of raw oysters and enjoys Teriyaki seaweed and ostrich jerky as a snack, when available. Very, very few of those things have made it onto my plate.
Most ethnic foods are yesses, especially Indian, Moroccan, and Japanese. She also loves many of the Korean delicacies her dear Aunt Young makes for her. Think homemade Kkaennip Jangajji (pickled Perilla leaves) and Japchae ( spicy glass noodles with vegetables).
Over the years, I’ve honed my cooking skills to suit her palate. Eggplant, bell peppers, smoked duck, goat cheese, and the above-mentioned lamb, are generally high on my own list of Will Not Eat. Still, I can handily transform them into dishes with an Indian, Chinese, or Japanese twist for my gourmet daughter.

Bink takes her lunch to her day program most days, and we plan those lunches together. On Saturdays, she’ll decide what she’d like to have for her lunches during the following week. We shop for the ingredients on Sundays, and cook more or less together most Sunday afternoons. Bink favors warm lunches, so typically she’ll take a lidded ceramic container of soup or stew, along with a side of something pickled or some sticky rice chips, and water. Yesterday morning, however, we had to cobble together a cold lunch, as her day program was headed to Newport, Rhode Island, wouldn’t be back in time for her to heat her lunch. She and I managed with anchovy fillets, some of my recent batch of zucchini pickles, Kalamata olives, and some coconut sticky rice chips, each of those foods nestled into a little Tupperware container. The beverage is always water, which makes it easier.

One of Bink’s quirks is that her food preferences can turn on a dime. When she requests something, it can come from memory, or from perusing cookbooks and The Food Channel. Sometimes, she’ll get very excited at one of my (or our) creations, and will eat it with gusto until it’s gone. Other times, she’ll enjoy it once or twice, and then I’ll get a text during a weekday, or she’ll announce at dinner or breakfast,” I’m tired of ______ (that thing that took two hours to make). ”

On rare occasions, we can negotiate a way to doctor the taste of the food with a seasoning or sauce, and she might deign to try it again. Often, though, she will not touch said food again, at least for a few months. So, we might end up with a container of some very spicy eggplant, or a soup that tastes and smells like strong fish sauce. I really don’t like to waste food, but Superguy and I just don’t have the stomach for some of Bink’s choices. We do know a few hardy souls who enjoy some of these things, so we can share some of the cast-offs as well as the excess from my more successful creations.

I’m well aware of how fortunate we are to be able to offer this quirky gourmet a variety of things she enjoys. It’s important to me that she eat as well rounded a diet as possible, and I have come to enjoy a little adventure in my cooking. Also, not all of her preferences are expensive or unusual. She likes particular pizza from certain places, and she’ll sometimes enjoy garlic bread and simple vegetable soups. Raw carrots are in occasional favor at the moment. She really likes sweets and baked goods, though she limits them to once a day and generally writes four NO TREAT days into her wall calendar. That last one is a story for another time.

Next month, Bink will turn twenty seven. Some kind friends, a family with a wonderful adult son who is also on the spectrum, have invited us out to dinner to celebrate in a few weeks. Bink is already anticipating an order of creamy raita, with just the right amount of tamarind and mint sauces mixed in, to savor with her Peshwari naan. She’ll probably share an appetizer of vegetable Samosas with me. Then there’ll be some kind of spicy lamb dish, and perhaps she’ll have a little of whatever curried vegetable there is to share. For dessert, she will be delighted with some cardamom scented Kheer (Indian rice pudding) or sweet sticky balls of rosewater infused Gulab Jamun.

Truth: Just now, on this Wednesday midday as I sat editing this piece for the blog, Bink called me from her program. That doesn’t happen too often, and usually it means Something Is Wrong. What was today’s message? “ I’m tired of the lemon risotto. Lunch I want balsamic mushroom barley soup tomorrow.” And so it is. Would anyone like a serving of perfectly good parmesan infused lemon risotto?

–Melinda Coppola

The Melting Popsicles by Bink

WALKING


At twelve, thirteen,
fourteen months,
when most children
begin to walk,
or make a show
of pulling their soft
wobbly bodies
to stand,

you were content
to sit and rub
the carpet, watch
the fibers grow fuzz
beneath hands
you didn’t seem to know
belonged to you.

A plump child you were,
with flesh-ringed legs
and arms,
at least three chins.

As you grew
stronger, my arms
did, too,
carrying you
room to room,
holding you
while you screamed
inconsolably,
and turned away
from others,

while you recoiled
at sights and sounds,
textures, certain clothes,
and any kind of shoe.

We didn’t know about autism,
not yet,
but I quickly learned
what brought you comfort.

When you were at peace
I could be, too.

I wonder
if you recall,
as I do,
when you were sixteen, eighteen,
twenty months
plopped on the grass,

making a study,
it seemed,
of the individual green blades,
your fat hands
brushing the tops of them
over and over,
your face some mix
of stern concentration
and happy fascination,

sweet reprieve from the screaming,
relief for my strong
but tired arms.

And still you grew,
and rebuffed
my attempts
to hold you up by the armpits,
sing walking songs
show you videos
of babies toddling happily
from toy to toy.

It was this,
the not walking,
that brought my questions
to doctors,
to Early Intervention,

that began the parade
of specialists and therapies
I never dreamed
would become our norm.

It was a blur in many ways,
that time,
but I recall when
you took your first,
tentative steps.

You were two
years two months,
finally ready
to trust your feet
against the hardness of the earth,

to step forward
into the blur of delight
and confusion
and newness
and noise.

–Melinda Coppola

Kind or Write?


I’ve been finding it challenging to encapsulate life with my daughter, Bink, lately. Hard to shape words for the page and even for casual conversation with friends, many of whom have their own experiences with parenting and/or caring for people they love who have special needs.

It’s not for lack of material. Bink continues to surprise me at times, wear me out at others. She delights while calling forth all my mental, emotional, sometimes physical resources, in almost equal measure. She’s growing incrementally towards greater confidence. She’s opening up, revisiting some foods she’d dropped from her odd gastronomic repertoire, talking of trying some activities like skiing; these are things that are, in my world, a very big deal.

There is so much I want to share, and yet I’ve been noticing more guard rails hugging the road I walk and ride while parenting her. Sometimes my own hands show the callouses that tell me I’m on the work crew, building those stout metal fences with what might be a thought of safekeeping. But what is there to keep safe? I’m aware of maintaining some privacy for her and for our family. That’s the why for the blog names I’ve given daughter and husband, and the way I don’t show many pictures of her.

Maybe that’s part of the tension. As she grows, so do her talents. I’m biased, but she has a range of them that almost beg to be shared. She sings beautifully, and has a huge memory vault of songs going back to even the little tunes I made up for her five or six months after she was born. I want to record her and share some of that melodious magic with you. She is developing into quite an artist, and as our walls that display some of her work
beg for mercy, the canvases stack up along the baseboards. She wants it all framed and hung, you see.

She has been horseback riding for over a year, an activity that Superguy and I shared some pessimism about when she began. Knowing her as we do, we figured the combination of a good bit verbal instruction (which can overwhelm her), the smell of the barn and paddocks, and the physical challenges of maintaining good posture and engaging core and leg muscles for thirty minutes would culminate in a short-lived equestrienne experience. Between us we probably gave it four weeks. I’m thrilled she has proven us wrong!

I’ve talked with Bink about recording some of her singing and sharing it, and she said that would be OK. I know she’d be fine with gaining a few more admirers for her paintings, too. And there is just so much life, so much that is funny and sad and fascinating in our day-to-day. It all wants to be written, whether read by fifty or by three. And yet.

I’m fortunate to have a few handfuls of writer friends, gained mostly from some fabulous online groups and communities. Our blocks are a common theme. There seem to be endless reasons to stop writing, or at least to stop posting what one writes. Sylvia Plath wrote that self-doubt is the worst enemy to creativity, and I’d have to concur that one ranks pretty high on the list. Not surprising, right? We all have an inner critic, and s/he can be very compelling, and nasty.

And then there’s the prickly issue of other people. I think most writers are introverts, and some of us are, umm, kind of sensitive. Working on thickening our skin, perhaps, but tender in places. A casual, well meant, and possibly quite constructive comment, or an innocent question, from a family member or close friend that reads our work, can send some of us into the claws of inner critic, the alpha bitch. “ See? Your writing sucks,” she’ll hiss. The effect? Shutdown.

There are, also, the other other people. The ones who have had a big impact in not-so-positive ways. For Bink,
some of these people and her interactions with them can take up a great deal of her headspace. Her mind seems to be full of what I can only describe as files. They go back to her infancy (and even before, but that’s a subject for another day).

Once a file from a certain part of her life is open, the things that happened during that time period get played out over and over. I mean this rather literally. Unfortunately, a lot of her recall involves unpleasant scenes and comments. She loves her old-fashioned tape recorder, and she can regurgitate the exact comments people made, in a good imitation of tone, volume and inflection the way she experienced them. She can even recall the date and day of the week these things were said, or done. She scrawls in her journal about these things, too, and creates lists of questions for me to answer the way I think the particular person would answer them.

Bink doesn’t record the sounds and events of her past for the benefit of an audience. Save the aforementioned lists of questions for me to answer, she doesn’t seek a reaction from me or Superguy. In fact, she seems a bit taken aback when we suggest that it may not be the best thing for her to perseverate endlessly on the things people did or said that upset her. She might respond with, “ I’m just trying to understand it.” Or, “ I like to hear the voices.” or even “ It’s important to me.”

As you might imagine, it can be jarring and also enlightening to hear the things a few certain people said to Bink, sometimes decades ago. She doesn’t know how to lie, so there is no doubt these things were actually said. Some of them are appalling. I can only hope they were not actually yelled, and that the loud volume she recalls and imitates is a result of her sensitive nervous system and wiring.

Bink opens new files every five or six months, and re-opens old, familiar ones more often. There is always more to learn from her well-organized memories. Mostly, the people who star in these spoken or written negative memories are not actively in her life anymore. That’s probably a good thing for them because I’d have questions and some sharp words for them.

What does this have to do with my difficulty writing about Bink of late? Well, it’s a delicate thing, to either include or extricate the parts about her obsessions with unpleasant ghosts. I think it’s very unlikely that any of them read my work, but one never knows.

I’m a big fan of Metta, the practice of loving kindness meditation. It has saved me, at times, from becoming entangled in sticky globs of anger or fear or bitterness towards a person or people or happenings that seem to have hurt or wronged me, or Bink. There is a process to the practice, a form and shape that starts and ends in the heart center. It begins by directing deeply loving attention first to the Self. Next, there is a gradually expanding circle of invitees, beginning with the loved ones, then the liked ones, then the neutral people, and finally the people (or circumstances) who challenge us the most. Yup, the practice is to open the doors to the most tender and loving place inside. Once the guests arrive, we make them comfortable, and then proceed with blessing them with happiness and peace. It’s not an easy practice, but it can shift the entire energetic relationship we have with life.

Therein lies my answer, I suppose. I can write about Bink’s thorny memories, or my own. I can poem about anything, include anyone. I just need to be willing to accept reactions, and remember to bless each person and circumstance, present or past, who have crossed paths with Bink, or with me. Thank them for the lessons and wish them an honest well-being. And, just maybe, Bink’s opened files, her very vocal recitations and hastily penned recounting of less than pleasant things, can serve as reminder that love can indeed be greater than fear, and the choice to forgive is the very best gift we could give ourselves and each other.

If you’ve read all the way to the end of this run-on piece, terrific! And if you haven’t, that’s fine, too. I’ve just written about not being able to write about Bink. Surely, that counts as writing about her, which means it’s time for tea.

“I write to discover what I know.”
–Flannery O’Connor

PS: Bless you. I forgive you. Be well.