Maternal Dementia

We trudged along the sandy path lined with scallop shells, following it to the edge of the camp and down a narrower path leading to the beach. We were a symphony of sporting gear: our waterproof pants shooshing back and forth in rhythm with each step, our knee-high rubber wellies marching out a hollow gahlump-gahlump percussion as we crossed the sandy flats to the rocks where the pangas were moored. Each one took her turn sitting on the gunwale, swinging legs over into the small boat until six plus the guide were situated on the flat bench seats and Ranulfo, the driver – who’s father was the first one to touch a whale in this lagoon – pushed off and drove out, away from the shore.

A 5-minute open-throttled ride until we reached the point at the edge of the lagoon, where the boat slowed and stopped, radioing “Tico, Tico, Tico!” for permission to enter. Tico, guardian of the lagoon, squawked his okay on the radio and waved back to us from his chair on the shore. The panga motored forward and into the dark green waters of the lagoon.

This escape, a whale-watching trip to Laguna San Ignacio, Mexico, was the inspired idea of my friend the Fiesta Nazi, a woman who needs no excuse to abduct her gal-pals for a good adventure, and yet she used the occasions of a rather monumental birthday and International Woman’s Day as reasons to invite a gaggle of girlfriends from every stage of her life to join her in the Baja in search of gray whales. Imagine a remote camp on the beach of a lagoon with 18 wildish whale-smitten women. The days were sunny and slow, pivoting around morning and afternoon excursions into the lagoon to watch for whales. Happy happy happy hour started at sunset and stretched through dinner and late into the night. Many of us, liberated from normal family duties, took advantage of these un-dutied days, as did those not encumbered with family appendages, equally happy for the leisure. One imagines that the crew at this camp – kind and most attentive – didn’t expect that a pack of middle-aged women to consistently stay up as late, drink as much beer and generate as much sexually innuendoed humor as we managed to provide. Plus we were curious and crazy about the whales.

“Look, eleven o’clock,” someone shouted, pointing just left of the bow. A football field’s length away, the shiny body of a gray whale thrust itself straight up out of the water. “That’s a spy-hop,” said our guide, José. Everyone in the boat fell silent, probably pondering what it would be like to be able to push more than a third of your own body weight vertically out of the water without touching the sea floor. “Why do they do that?” someone finally asked. José’s answer became one of the trip mottos: “Because they can.”

“Three o’clock!” All heads turned to starboard. About 15 meters from the boat, a 20-foot long gray whale, dipped out and then back into the water. Ranulfo turned the nose of the boat and inched forward respectfully, taking us to get a closer look. “That was the baby,” José explained, “now look for the mama.”

Everyone sat upright, on vigil, heads left to right scanning the water, cameras poised. The sea was quiet, holding its breath like we held ours, until a long thick shadow came into view, submerged, hovering – maybe even teasing us – before breaking through the surface and baring her knuckled spine.

She was in no hurry. Her thick spotted body skimmed the water in first gear, turning slightly just before she disappeared, leaving only an odd rounded footprint around which the waves could not penetrate. Ranulfo cut the engine so we heard only the waves lapping against the wooden panga. We sat, frozen, for the longest, quietest minute. Just when I had given up, certain they had swum beneath us and far away, both whales, mama and baby, sliced open the surface and in tandem, gliding in slow-motion through the water only a meter from our boat. The mother’s body was thick and spotted, decorated with patches of barnacles. The baby – José estimated it was a month old – was smoother, newer, no discoloring on the skin. It had not yet picked up the marks that scar and give character to an older whale, the markings that mamas (and women of a certain age) collect over time, the wear and tear and bumps and barnacles that come from navigating an ocean from one lagoon to another season after season.

The timing of this trip was not uncomplicated. When I made the decision to attend, I did not know that I would spend three weeks away from home this winter, caring for my mother. I engaged in a serious debate with myself to decide if this trip was still doable. I was not sure I’d have the stamina. I wondered about the wisdom of a third transatlantic aller-retour in 6-week window of time. I was also a little bit afraid that escaping to a secluded camp with no technology to distract me would be too much of an opportunity to confront my grief. Running about and being busy is further protection from the pain that still feels so close, a long shadow just below the surface waiting to breach.

But De-facto and his mother offered their full support, so I hugged my little girls goodbye, again, and boarded the plane to find myself removed from the strain of the recent chain of events and enveloped in the rounded embrace of the best friends of one of my best friends: a collection of clever, accomplished, adventuring women, in abundant possession of wise words, crazy spirits and a good dose of humor; women unafraid to camp outside and live out loud.

On the other side of the lagoon, we cruised directly into the patch of birded water filled with flocks of gulls and terns and egrets, and the occasional pelican with his beak pressed shut as if keeping a secret. Some of the birds took wing as we sped by; others paid us no attention, perching nonchalantly on the surface of the water. Beside us, three dolphins danced in and out of the water like lords-a-leaping, keeping pace with the boat. Just ahead, a whale breached the surface of the lagoon, twisting and slapping the water with its fluke as it slowly dove back in. It felt as though the birds and whales and dolphins had opened a door to us, pulling us fully into their watery world. We were no longer observing the wildlife around us; we had joined it.

What a privilege to be in the healing company of a group of well keeled women with days of nothing to do but pet a whale’s nose and look her right in the eye, go for long walks on the beach, eat fish tacos and drink shots of mezcal or ice-cold cervezas from a constantly-stocked ice-chest. Each day, a little of the weight of these last weeks was chipped away. Each day, a few salty tears fell back into the ocean. Each day, I felt a little more restored. I return to my world, hopeful.

Nothing makes up for the loss of one’s mother, but spending five days in the healing company of so many compassionate middle-aged sisters sure helps. Like the mama whales, we’re all a little bit worn; we’ve collected the marks that build character. We’ve endured the wear and tear and bumps and bruises that come from caring and crying, from coaxing ourselves through the odd passages of life that test us and jeer at us. We keep swimming forward, with grace, navigating what life has hurled at us, season after season, each one of us breaching and spy-hopping and dancing in the water in our own unique way, because we can.

…will abolish just what’s bothering you, as the song goes. Never mind that it’s a song about shoe polish. My guess is nail polish has the same uplifting capacity. Much like my aunt who proselytizes the restorative power of a good hair wash, I’m a believer that a pedicure is sometimes all you need to set things right. A good soaking of the feet, scraping away the dead skin, trimming of cuticles and cutting/filing the nails and then the deep red or sweet rose or mysterious vamp that reminds you every time you look down that you’re the kind of woman who makes the time to care for your feet.

Before I went home to take care of my ailing mother, a friend told me to take a picture of her hands and feet. “Because years later,” she said, “I couldn’t remember what my mother’s hands looked like.” It’s not so silly, except I can’t imagine forgetting this detail. My father’s well-manicured hands with his long and elegant fingers are something I can picture exactly now, as though I’d held them yesterday.

You all must be so tired of hearing about my dead mother. But I don’t know what else to write about. Everything seems banal compared to what I have been through these last weeks. I’m still losing my mind. The kids have made a train wreck out of my life. De-facto’s a prince, or then he’s not a prince. Short-pants is angelic and Buddy-roo is impish. It’s the same as it always was. Except it’s not the same.

I know this is a question of time. I still miss my father, but the constant ache and daily despair about his death no longer plagues me, though the occasional sting of wishing he was here when something important happens has not lost its venom, even after more than 20 years.

I try to do normal things. I stop to buy a baguette. “It’s been a long time since we’ve seen you,” says the baker’s wife. I tell her I’ve been away a lot. The way you say this in French is “J’avais beaucoup de deplacements.” Yes, I’m feeling very displaced, I think to myself in the pseudo-language of Franglais, a butchering of both French and English versions of a similar-but-not-quite-the-same words. Another good example: déranger, a disturbing verb in both languages, but more often used as an adjective in English. Sometimes in my head – or even out loud, to like-minded friends – I mumble, “I hope I’m not deranging you.” It’s a funny little language we expats use to effect a hint of sarcasm.

“And it was good, all your traveling?” she asks.

I want to tell this friendly, familiar local baker-woman that I’ve been gone because I went to help my mother die. It feels like I should tell her, she knows me well enough to notice I’ve been gone. It feels like she might care, but that doesn’t mean she will or that she should. Just because I am so tender doesn’t mean I should blurt it out and then have to continue the conversation, the answering of questions, the prolonged explanation to a kind stranger who has no context.

“Yes,” I say, “it was all good.” I don’t want to derange her with my grief.

Keep doing normal things. I make soup. Except it makes me think of those soups I used to make for my mother the last nights before she decided to stop eating. I do laundry. Except folding the sheets makes me think of her. Hanging the little socks on the drying rack in my living room makes me think of the only time she wrote something other than praise after reading one of blog posts, the one about our decision not to buy a new dryer when ours broke down. “You’re a busy working mother with two children,” she wrote, “so buy yourself a dryer.”

I miss seeing her name on emails in my box. I’ve actually left one of her last messages in my Gmail account, and occasionally I mark it as unread, so I can read it again, like it was new, like she just sent it. I know this is pathetic.

I get my haircut. I remember getting a trim the day before the last time I went to see her, how I cried through the entire appointment. I go to the aesthetician to get a bikini wax. This doesn’t remind me of my mother at all but it hurts so much and I’m so spent that I cry anyway. “Does it hurt that much?” she says, kneading the ball of caramel in her hand. “Yes. It hurts that much.”

Raquel, the Brazilian manicurist/pedicurist who comes to my home to attend to my nails arrives late as usual, so this feels a little normal. She massages my feet. This reminds me of seeing my mother’s face settling into a feline smile as I pressed my thumbs into the balls of her feet, massaging them for her before she went to sleep. Don’t go there, I tell myself. Don’t make everything a signifier for something sad, something lost, something about her.

While my feet are soaking in warm soapy water and my hands are drinking in the mystery treatment provided by her special magical coated plastic gloves, Raquel turns to Short-pants and Buddy-roo and says, “Who’s first?” They won’t let me near them with a nail-clipper or emery board in my hand, but they race to her. She is the Pedicure-Whisperer, the intuitive tender of nails, calming any child, even my two wild fillies, enough to cut and clean their fingers and toes. Buddy-roo chooses a dainty, unsurprising, princess pink; it’s Short-pants who startles me by pointing to a dark, vampy burgundy, close to my own preferred color. Raquel glances up at me, her eyes seeking permission. Why not? I shrug. She’s not the daughter I worry about taking this color to heart.

Later, as the varnish on my toes is drying, the girls arrive with their dolls, asking if they can paint their toenails, too. My first instinct is no. They’ll make a mess. They’ll ruin the dolls. “Sure,” I say, remembering that nail polish remover has already been invented. “But get our polish from the basket in our bathroom.”

There is jumping and cheering and running back and forth and setting up the dolls in small child-sized chairs. Raquel offers a few tips to the girls as their shaky hands struggle to paint the polish on the tiniest of doll nails. They do a surprisingly accurate job, and parade proudly around the living room displaying the polished extremities of their dolled-up dolls.

“Careful,” I warn them, “Keep them away from the couch.” (I can’t help myself.)

“We know, mama,” Short-pants says, “don’t worry.”

They march and laugh and celebrate (with aplomb) a splash of color on tiny toenails. They sing a song about nail polish, one they’ve made up on the spot. For the first time in a long time, things seem almost normal. This, I suppose, is how life goes on.

There are times when life seems to take on its own momentum. Unlike the days where choice seems evident – debating the banal options of our routine lives, turn here or there, eat this or that – these are the eerily directed moments when events simply propel us forward and it feels that we have little say in any matter. My mother died and time hiccupped; seeming to pause momentarily as we stared at her still body, relieved for her, bereft for ourselves. Who do we call first? Let’s just wait a bit, take this in. We knew. It was a temporary stay of time, a last quiet moment before the rapid undertaking of after-death duties.

Once the call was made, however, a trigger was pulled and industrious activity ensued. The hospice nurse arrived and made an official pronouncement. The funeral director came, his head perpetually bowed. My mother wanted to donate the bones in her inner ears to science; this had to be orchestrated quickly, and on a weekend. Our immediate family was notified. Close friends were called. The obituary, previously drafted, required editing and (exhaustive) proofing. The laundering of sheets, the removal of the hospice furniture and putting my mother’s study back together. The calling of lawyers, reading of the will, signing of waivers, funeral arrangements, plane reservations for relatives flying in or not, depending on the inclement weather. The unfolding course of events urged us, relentlessly, onward.

Our mother was a woman who took much satisfaction from her own productivity. Even at the very end, she wanted a plan for the day. We are fallen apples, not far from that tree; our daily to-do list became suddenly daunting. The slow, quiet, waiting vigil of the aching days before her death gave way to a frenzy of tasks that were executed with an almost maniacal urgency while dodging the onslaught of casseroles and meat platters.

Looking in the mirror one tired morning, dark circles defining my eyes – the residue of a long vigil and stolen moments for private tears – I wondered exactly what fumes in my body were driving me forward.

Two weeks before my mother died, her sister sent her an email about a game they made up when they were kids, maybe 6 or 7 years old. They’d march around the back yard with sticks and curtain rods that they pretended were rifles and they’d shout out, “Advance to the rear!” My mother remembered the game; she instructed me to pull out her old photo album and she pointed to the picture of the house – the same house I saw in Havana – and showed me the route they followed, rifles in hand, out the side door and around to the back of the house. She said her father would get so frustrated with them; repeatedly explaining that it was not possible to advance to the rear.

But we were advancing, one step at a time, a last loving labor to finish what my mother had started by dying. Respects were paid; the ritualized calling hours sometimes awkward, often healing – the standing and greeting of her friends and admirers, the sharing of our grief. People came to console us but just as often we ended up consoling them. “Don’t be sorry she’s gone,” I told someone who would not stop crying, “just be grateful you knew her.” (But my sorrow remains, along with my gratitude.)

We put her in the ground beside my father, resting next to him the same way they used to sleep, side-by-side in their bed. We did this privately, without fanfare. Her friends and colleagues will be invited to a memorial service later, in the spring, when we will celebrate her life.

In retrospect, it was right to have this last private moment with her – with them. We stood there like kids stalling at the foot of our parents’ bed, saying an eternal goodnight.

We pressed ahead to finish the business of collecting important files and papers, cleaning out the refrigerator, coordinating with the caretaker who will stay with the house. We stood in the driveway to make our goodbyes, stunned by the list of sad errands we had completed in just one week’s time. I studied my sister and brother in the harsh winter sunlight. They looked tired, worn out – a reflection, no doubt, of how I looked and felt. Oh my god, I thought, she’s really gone. Oh my god, I thought, we’re old.

I’d phoned the airline nearly every day, searching for a return flight. With each call, I felt more like Dorothy asking anyone and everyone I came in contact with to please help me get home. I just wanted to get back home.
No amount of logic or emotion would solicit enough sympathy from a reservation agent to bend any rules. In the end, I broke down and bought a new airline ticket to take me home to Short-pants and Buddy-roo and the heroic De-facto, Nobel-worthy after his 3-week stint as a single parent.
I would not have been able to accompany my mother this way had he not been so willing and agile.

Now I am home, back in the fold of my life. Back to my cherubs crawling in bed for the morning cuddle, the rush through breakfast and out the door to school. Back to my work and my clients and conference calls. Back to the bustle of a cosmopolitan city and the every-day routine of my regular world. Back to normal, except nothing feels normal anymore.

It was a campaign, these last weeks, to help my mother die, wanting her to die well, pushing myself forward to do what must be done, all the while missing my man and my little girls. It was a privilege to be there, to hold my mother’s hand and help her move through the last days of her life. It was a relief to come home to the hold-you-forever embrace of my vibrant little girls. And now that I have been there and back, I think I know exactly what it means to advance to the rear.

I pinched the frozen clothespins to liberate the sheet from the line of rope that spans the back porch. The sheet was ice-cold; it’d been hanging outside on the porch all afternoon. I wrapped the yards of damp cotton over my shoulder, trying not to drag anything on the floor as I pulled the rest of the laundry – pillowcases and a few dishtowels – off the line and made my way back inside. I draped the sheet over the three chairs evenly placed beside the dining room table. It will hang there overnight, to shed the last of the dampness and to get warm and fully dry before it is ready to be folded.

This is a ritual that has been enacted in this house, on this porch and in this dining room, for more than fifty years. The tumble-dryer in the laundry room is not unused, but the sheets in this house have never seen the inside of it. No matter what season, my mother’s sheets are always line-dried.

“I need your help with the sheets,” my mother would say, a habitual plea generating the big eye roll from any one of her three children. This might be our Sisyphean task, second only to ironing my father’s handkerchiefs, a pesky chore we were commanded to do and our mother would not tolerate a half-hearted execution. We were guided step by step. “Put your finger in the dart. Pull it, tight. Stretch the sheet first. Flip it and fold. Now walk toward me…”

We found explicit sheet-folding instructions from a mid-twentieth century woman’s magazine, tucked in the back of some drawer. Was this how she learned her special way to fold fitted sheets? Or did she clip it because it matched the technique she’d acquired or invented herself? She would never say. But her systematic laundering and folding of sheets is part of our family lore.

Just picture the linen closet: towels on one shelf, sheets on the other – all squared, fluffed and folded, even towers of perfectly creased cotton. And when you go to make a bed – any bed in the house – the fitted bottom sheet opens itself for the bed, effortlessly, without a single wrinkle.

And the smell, the perfume of all the things that fly in the country air: cut grass, morning dew, apple blossoms in the orchard, summer rain, fecund grapes before the harvest, an icy winter storm. I need only to throw one of those freshly aired sheets over my shoulder or to slip myself into a just-made bed, to re-live my entire childhood with one inhale. Those sheets are an olfactory map of my earliest years.

During the last months of her life, when she was weakening, my mother’s friends admonished her to stop. She should save her energy. It was too easy to fall on the porch, too cold to be out hanging the sheets on the line. She should use the dryer. But my mother persisted. She has always preferred the feel and scent of her line-dried sheets.

This last week, my sister and brother and I washed her sheets every other day, taking turns pulling them from the washer and hanging them outside on the line and bringing them in to warm before folding. We all have the intuition – inherited, no doubt – about when they have been on the line long enough, or when, after hanging inside, they are ready to fold. One of us would call the other into the dining room and in tandem we’d lift the sheet and stand, facing each other, following the steps as though our mother was whispering them to us from the middle of her steady, uninterrupted slumber in the other room.

It is unspoken, but we all know why we’ve done this. This is still her house. We honor her with every load of laundry. Each time the nurse’s assistant came to give a sponge-bath and change the bed, we knew that my mother, even in a semi-conscious state, would be comforted by the familiar perfume of her porch-dried sheets. It was part of our vigil.

Then, this morning, my mother took her last breath.

My brother – her son, the doctor – checked her vital signs. I reached for my iPhone to note the official time of death. My sister wrapped her arms around me as I began to cry. We waited for a long stretch of time, watching to be sure that she would not take another breath, that this wasn’t just some irregularity, that this was the end. When we were certain, we kissed her goodbye, one at a time, and pulled up the sheet to cover her motionless
chest, a sheet that, once they came to take my mother’s body away, was washed and hung on the line to dry. A sheet that, tonight, before bed, we brought in and draped over the backs of the dining room chairs to get warm and fully dry. A sheet that, tomorrow, we will pull and stretch tight, folding it solemnly, like a prayer.

In case you didn’t catch it, our little Buddy-roo’s name is derived from JD Salinger’s famous high school reading list title, Catcher in the Rye. Salinger happens to be De-facto’s favorite author, inspiring the nickname and prompting his email to me this weekend reminding me of its source.

I wonder how many people in the world, when they heard that Salinger died, walked to their bookcases and reached up to pull this dusty book off the shelf and skim through its pages. That’s the first thing I thought to do when I heard the news. How propitious to be at my mother’s house, I thought, where I lived during my high school years. Immediately, I pictured the thin paperback, the design of its cover and its exact placement – third shelf up, to the right – on our bookcase.

Except it’s no longer there. My mother didn’t even save it for the damn yard sale. I think she donated it to the AAUW book sale last year, or maybe the year before. The shelf where it used to rest is now barren.

I picked up the phone. Dialed a number I know by heart, still, all these years later. The man who answered was one of five boys who lived across the road, our earliest childhood friends. Now he has children of his own who are growing up in that very same house, a house filled with stories and mischief and crocheted blankets. A house that gave me my first sense of other – their books, their objects d’art, their print of the Peaceable Kingdom – where I got my first notion of the world outside my own family’s universe. It was other, and yet it was as familiar and comforting as anything I knew from our side of the road.

Twenty minutes later he rang the doorbell. He is as handsome as ever, an older version of his original self. He handed me his high school copy of Catcher in the Rye. “It’s red,” he said, laughing, “when you called, all I could think of was it had a red cover.” He also knew right where to go to retrieve it.

I loved that his memory of the book, like mine, was so visual and spatial. Maybe this ranks with questions like, Where you were when JFK was shot? or What you were doing on 9/11?
This major milestone of modern literature merits the questions that probably most of us can answer: What color was your copy of Catcher in the Rye, and on which shelf was it kept?

I handled the old red paperback with care, its pages more than yellowed, but still legible. Then, on page 28, halfway down there it was:

“Be a buddy. Be a buddyroo, okay?”

The satisfaction of finding this slightly obscure reference in the book was too soon replaced with a bittersweet longing for my own Buddy-roo and her sister Short-pants. De-facto is a most capable solo pilot, so I do not worry (much) about how things are going at home in Paris. But that does not keep me from missing them.

I think of all the stories I’ve told about being frustrated or fed up, about missing my freedom, or about how good it is to have time alone and time away from my children. All those tales are true, just as true as this: I miss them so fiercely right now. I wish they could be here, so I could get that little hit that comes when their faces light up to see me after being gone, even for just an hour. I wish they could be here, to comfort me in that unconscious way that they do, just by being who they are. I wish they could be here, just one more time, to see their Grammy, to crawl in bed with her, like they so love to do.

And so it is, then, just as Holden Caulfield says in that famous last line of Catcher and the Rye: “Don’t ever tell anybody anything. If you do, you start missing everybody.”

I’ve been sleeping on the loveseat in my mother’s study. You would not think it comfortable, but curled into a fetal position within its square arms and rounded pillows I manage to find restorative sleep. Not that it is uninterrupted sleep, but at least there is plenty of it. I cannot help but compare the rhythm of these nights to those first ones just after bringing my babies home from the hospital. There is something satisfying about the tender caretaking that is administered in the quietest part of the night.

We are spun in the cocoon of Hospice. A cold and white winter waits outside. We are warm and attentive within the walls of this old, noisy house. When my mother sleeps, I hear the sounds of ticking clocks and shutters knocking in the wind. The furnace kicks in and rocks the whole house, just like it always has. I like all these odd, familiar noises, even in the night. They keep me company when my mother is asleep.

A social worker called and asked to come see my mother, who is not that interested in visitors, but we realized this is all part of the Hospice checklist. As it should be; aside from the furniture, the physical care and the advice about administering pain-relief, it is entirely appropriate to assess the dying patient’s need for psychological and emotional support. It’s not like everyone knows how to die.

She arrived with a notepad, an over-compassionate expression and a gift, a hand-knit shawl. She asked all the questions my poor mother has answered already a half-dozen times in the last week as each Hospice staffer has come to meet her and familiarize themselves with her case. And then more questions: Are you ready to die? How do you feel about dying? My mother has done much thinking about this topic, evident from that natural language she used to convey her state of mind. She graciously indulged the long string of questions, though it taxed her to talk for so long. And then finally, she’d had enough.

“You know,” she said, “I remember something Elisabeth Kübler-Ross once told me…” (I wish I could repeat the rest of what my mother said, I’m sure it was wise. But I didn’t hear it because of the extra-loud Ch-Ching that went off in the back of my brain.)

A personal affiliation with the Guru of death and dying obviously trumps an inquisitive social worker. My mother has always known how to gently move things along. Some final small talk, appreciative goodbyes and call if you change your mind about the Chaplain. Yes, of course, and thanks for the shawl.

(Kübler-Ross, it turns out, was a commencement speaker at a college where my mother worked. Mom really did have occasion to speak with her, at length. Who knew?)

After the social worker left, my mother eyed the shawl. “Make sure it ends up in one of the boxes upstairs, for the yard sale.” For years she’s been putting stuff aside for this heralded event. Even in the last days of her life, she is still anticipating the moment when her home will be free of the clutter she’s collected. I told her that in heaven there are effortless yard sales, managed by angels, where everything sells.

Once triggered, a strong memory can hover. It stays close to the surface, stretching its legs after being folded into the recesses of the past, aching to be a story that’s told again. Just a week ago I wrote a few paragraphs about a gripping period in our life, five years ago, when Short-pants had a medical crisis. I don’t mean to dwell on it, but it comes to mind again this week, with good reason.

It’s a story we try to tell enough so Short-pants can own it without shame. It’s a story we try not to tell too much, so it doesn’t become the dominant story of her life. Sometimes, when I visit her room to adjust her bedcovers while she sleeps, I trace my finger along the arced scar that crowns her head. I once told her it was a permanent tiara. I’ve heard her repeat the phrase with pride. That’s the thing about a scar; it’s a story you get to tell for the rest of your life.

Short-pants’ six-week stint in the neurosurgery ward started before Thanksgiving and spanned the holiday season. I was prepared to throw in the towel on Christmas; I had no energy to shop, decorate or enact the role of Mère Noël. But friends and family pressed the spirit of Christmas upon us. They sent gifts for the girls, optimistic that Short-pants would survive, determined that Buddy-roo wouldn’t go without the full-on holiday fuss. Our neighbors surprised us with a 6-foot Christmas pine. And there were angels – so many people sent angels. We must have received five or six hanging angel ornaments for our tree.

One angel in particular was – and still is – my favorite. It was a gift from one of De-facto’s aunts, a woman who sets a classy standard for the family, a woman who has navigated the burdens of her life with tremendous grace. The ornament is made of silver. It’s heavy in your hand, and when hung by its lace loop, pulls the bow of the tree low toward the ground. There are words engraved on one of the wings:

You must do the thing you think you cannot do. – Eleanor Roosevelt

About the time this silver angel arrived, I was at a wall. It wasn’t much fun, being a hospital mom. Every day, punching the intercom buzzer to be let in to the ICU, sitting at Short-pants’ side, worrying and wondering while trying to assure her and give her hope. At the same time staying alert to the nuances of the doctor’s throw-away comments, hounding them down to find out what and why and when. I went to the hospital every day; De-facto and I took shifts, morning and afternoon, overlapping a few hours mid-day to be there with her together. By the time Christmas was near, I was completely spent.

I remember opening the box and rubbing my fingers along the wings of the angel, touching the words, as though I might be able to physically absorb them. Isn’t it perfect how the universe knows when you’re desperate and sends you exactly the message you need to hear? I will always cherish this angel. I have a little moment with her every Christmas; I have not yet succeeded to place her on the tree without weeping.

My mother had planned to spend the holiday with us that year, so she came as scheduled, bewildered at first about how to help, but then finding her way, baking Christmas cookies, doting on Buddy-roo. The hospital was very strict about “parents only” in the ICU. Whenever friends came to support us there, they were obliged to do so from the waiting room. But on Christmas day, one of the more compassionate doctors had a word with the nurses on duty, and an exception was made.

So there was my mother sitting on one side of the hospital bed, me on the other. She reached across Short-pants’ sleeping body and rested her hand on mine. I had grown accustomed to seeing my 3-year old daughter tucked tight under the blanket, emaciated, listless, with a helmet of gauze wrapping on her head. I was used to the machines and sensors and tubes. For my mother, it was startling and disturbing. “I just don’t know how you do this every day,” she said.

I can count on one hand the times I’ve seen my mother cry. She sat across from me, wet-eyed, pained to see what we were enduring each day. “Somehow, you just do it,” I told her, “you do the thing you think you cannot do.”

These days Short-pants is fully recovered from that grim experience, immersed in her vibrant life, sometimes in the clouds, but with a well functioning intellect and imagination and a healthy emotional intelligence. My mother has relished the opportunity to watch her grow into the soulful young person that she has become.

But now I’m sitting by another hospital bed, the one that’s been set up in the study of my mother’s house, the bed in which she will be spending her last days. After a valiant contest with leukemia, an opponent that she held at bay for much longer than anyone – especially her doctors – expected, she is letting go. She will take no more treatments, no more blood transfusions. She has decided to let her life run its course.

This is hard. It’s hard to say goodbye, it’s hard to see her suffer. But I know what I must do. I will sit beside her. I will hold her hand. I will squeeze it so she knows I am there. I will hold it the way she has always held mine. I will do that thing – if I must – the thing I think I cannot do.

When Short-pants was just a little girl, she had a big story with menacing words like convulsion, coma, and emergency surgery. A massive growth in the right frontal lobe of her brain was originally diagnosed as cancer, but post-surgery lab tests gave us a break; it was just a brain abscess. Still, there were complications: a secondary infection, meningitis and persistent vomiting as a result of the nasty cocktail of intravenous antibiotics that didn’t seem to be shrinking the abscess as predicted. The MRI made it look as if it was re-forming, like the image of a hurricane gaining speed and force on a tropical weather map. A second brain operation was required to remove the abscess for good.

All hands were on deck. De-facto’s family appeared en masse and quietly took over our home, attending to Buddy-roo, organizing our lives, making sure we ate meals of substance and nourishment. My brother the doctor was on call every night to interpret the medical-speak we encountered each day. My sister, who happened to be in Viet Nam at the time, managed to inspire the Archbishop of Hanoi to put his priests to work in prayer. An e-mail tree was established; we wrote a message every night that was sent out to a few people, who sent it to other people, who sent it to more people, until a web of friends and family had the latest news about Short-pants and put us in their prayers.

We were in crisis mode. We didn’t hesitate to ask for help, and people didn’t hesitate to offer it. Perfect strangers came to our emotional and spiritual aide. Doctors who were friends of friends reviewed her dossier and offered additional opinions. We accepted anything that was given to us, without quid pro quo worries.

As awful as it was, fathoming what life would be like if she didn’t survive, or what it would be like if she did survive but with serious complications, there was also something really simplifying about it all. De-facto and I had a crystal clear sense of purpose every day: to give emotional support to our daughter, to do the medical interface, advocate for her care and to try to hold each other – and our family – together.

A crisis can produce this kind of clarity. We do what needs to be done. We make quiches, soups and casseroles. We bring blankets, we send money. Priorities become certain, we function in highly effective ways despite the lack of sleep, loss of appetite, and moments of extreme despair.

In other words, we rally.

The nightly e-mail network we branched together pales in comparison to the force and velocity of information sharing that exists today. The brute force of the Internet is staggering: a well-loved blogger has a stroke, an entire on-line community assembles to support her family, not only with words, but with money and real-time assistance. When an amazing child whom everyone read rooted for doesn’t make it, there’s an outpouring of financial and moral support from an electronically connected community. An earthquake devastates an entire country and the world rallies to offer aide. It all makes you feel good about what human beings can do.

After Short-pants was released from the hospital and well into her rehabilitation, people started to forget about our family crisis. The urgency of our news diminished; without a daily calamity to report, our update messages went from daily to weekly to monthly to rarely. Everyone returned to their regularly scheduled life, and assumed that we had, too.

Except our life was still upside-down. We were thrilled that she was home, but schlepping out to the rehab hospital three or four times a week, juggling doctor’s visits and follow-up tests as we tried to recapture our own professional schedules was wearing us out. Being careful about keeping a steady stream of attention on Buddy-roo in the midst of all this took energy, too. This was when I was most afraid that I might break down. Not in the thick of the crisis, when everyone was cradling us, when there was clarity and singularity of purpose. It was just as hard – and I had less personal stamina – when we were “out of the woods.” The crisis was over, but our lives were still far from normal.

The awkward memory of this après-crisis phenomenon was prompted by reading one of the blogs in my sidebar, Generation Y, written by a Cuban woman who has to work miracles just to get her posts on the Internet without being censored. She writes, “It especially frightens me that three months from now the suffering will no longer be a headline in any newspaper and people will have ceased to feel the urgency of the Haitian drama.” I’ve thought about that, too. We send our money and we go on about our life. What else can we do?

But I’m getting ahead of myself. The crisis in Haiti is still full-throttle, and will be for some time. Help is needed now. If you haven’t donated, here are some reputable aide organizations. (I donated here.) Or if you’re in the States, all it takes is a single text message. If you blog, here’s another creative way to raise funds. Sending $10 – the cost of two draught beers at my favorite café – will make a difference, when you consider how many millions of people are donating just that. It adds up, fast.

Just remember that the crisis may end for us when the media coverage dies down, but not for them. Whether it’s for Haiti or any other cause – the charity of your choice, or the friend across town who’s grandmother just died – it’s so important to follow up and check back in. Maybe it’s another donation, another mention, another offer to help – even just a quick hello that says you haven’t forgotten – that could mean more than we know.

Well, in fact, I know. It means everything.