Tag: Ties

My Brother, the Hospice Graduate

Giselle Potter

When I was a college sophomore living in a sorority house at the University of California at Santa Barbara, my parents called to tell me that my baby brother, Gavin, was dying. He had been given a diagnosis of a very rare disease, Aicardi–Goutieres Syndrome.

The doctors immediately placed him in hospice care.

He was 4 months old.

I hung up the phone and rode my red beach cruiser to class, trying to pretend that it was like any other day. I sat through Spanish class, but stared off into the distance, numb to what was happening. When I emerged, the sun seemed too bright. People were laughing, talking on their phones, surfing waves at sunset and meeting up with dates at coffee shops.

I thought back to Gavin’s birth in June. He looked like the rest of the babies in our family, with a thick pad of blond hair. A happy baby. Then at 6 weeks old he started having fevers of 104. They turned into weeklong affairs. And no one knew why.

My parents and Gavin’s doctors tried, for the next few months, to solve a seemingly unsolvable case. We just wanted to know what was wrong. But when we finally had the right diagnosis, it was awful. His disease had triggered brain calcifications, causing permanent brain damage. He was going to lose his motor skills and be unable to eat, so he would eventually die, we were told.

At first, I wanted to avoid dealing with the situation. The playground feeling of my oceanfront college campus was in stark contrast to the atmosphere at home, where my devastated family waited, heartbroken. My impulse was to stay away. I didn’t want to be crushed by the grief that was promised to me.

But I also knew I couldn’t live with myself if I never tried to face it. So I dropped out of college and spent every day with him and the rest of my family, including my sisters, who were 9 and 14 at the time.

Gavin’s disease showed up like Louisiana rainstorms — quick, strong and mean. Sometimes he was the handsome baby who smiled at me with his innocent blue eyes. Then, it was as if he was gone. Possessed. His fevers were now paired with jitters and vomiting. Gavin would shriek uncontrollably, turn a pasty gray and roll his eyes in different directions.

Mom called these visits from the Monster.

The hospice nurses stopped by every week to check Gavin’s temperature and weigh him. There was no handbook on learning to love your dying baby brother, but eventually, I did. Instead of hiding from the Monster — when his body shook, his lips turned jelly purple, and drool spilled from his mouth — I looked at him and said: You are worth it.

With his impending death sentence, Gavin was baptized in an oversize white gown. Mom wanted his soul to be protected.

After the ceremony, we played a slideshow of his short life. I saw a picture of me holding him and thought to myself, how could I not love you? We all loved him, the best way we knew how.

My parents did not give up on him, even though he was on hospice. A major change came when a friend of my mom’s who was an occupational therapist suggested the Haberman bottle, a baby bottle with an elongated nipple for children with special needs. Part of the reason Gavin was in hospice care was that he could no longer breast-feed and it was hard to get him nutrients. But he took pumped breast milk through that bottle.

And somehow his demise never came.

On Gavin’s first birthday he was taken off hospice: a hospice graduate.

The journey shifted. Instead of waiting for a baby to die, we were learning to love and live with a handicapped boy.

Now, Gavin is 9 years old. He is a quadriplegic; he cannot walk, talk or eat solid foods, but he is a survivor. He is joy.

That doesn’t mean his life is easy – for him or for the rest of the family.

Every morning one of my parents carries him downstairs around 7 a.m. They sit him in an egg-shape chair in front of the TV to watch cartoons, usually “SpongeBob” (he’s graduated from “Sesame Street”). His breakfast usually involves bran cereal for digestion, a fried egg, a couple of blueberries, maybe a waffle, sometimes crispy pork sausage. All of that is put into a coffee cup with whole milk and butter, and puréed with an immersion blender.

Gavin’s three epilepsy medications get pulled into plastic syringes. Then the hero of the morning carries a tray, with a handful of towels and a water cup, along with the delicious breakfast surprise and medicine into the TV room, and the real work begins.

Feeding Gavin can take up to an hour. And it can be messy. Sometimes he spits up his food, other times he is just not feeling well and he lets it roll down his chin, onto his neck.

Gavin’s life includes physical therapy, occupational therapy and speech therapy. But it also includes floating in the pool in a life vest, going to school and even gleefully crossing the finish line in a marathon – with my husband pushing him in a stroller.

Instead of dismantling our family, he has brought us closer together. We treasure Gavin’s small accomplishments, whether that is running down the driveway in his special gait-training walker or using an eye-gaze communication device or nodding to let us know that he wants to use the bathroom, play with his sister or bounce on the trampoline.

We don’t know what his future looks like. But we don’t know what the future looks like for any of us. The mystery of his life is no different from any of ours.

Courtney Lund is working on a memoir about her brother.


Related:

Sign up for the Well Family newsletter to get the latest news on parenting, child health and relationships with advice from our experts to help every family live well.

Why I Decided to Stop Writing About My Children

Giselle Potter

There is a hunger in our culture for true stories from the parenting trenches where life is lived mud-flecked and raw. I’ve written extensively, intimately, damningly, about my children for seven years without once thinking about it from the point of view of their feelings and their privacy. A few months ago I stopped.

I wish I could say that I deeply reflected on the ethics of writing about my children and heroically pivoted myself out of a concern for my character, but here’s what really happened: My father called.

He called me after reading a blog post I had written about my son’s first signs of puberty. It seems an obvious line-crossing that I wrote about such an intimate detail, but I did. At the time I didn’t pause for a split second; I was more than willing to go there. I had been writing and reading extensively about parenting tweens. I knew people might be mildly shocked, but mostly interested.

We live in a break-the-internet arms race of oversharing. And adolescent sexuality is an emergent, fascinating topic, especially for parents who are figuring out how to address difficult questions with their children. For example: I ate up Peggy Orenstein’s marvelous new book, “Girls & Sex,” with a spoon, shocked and upset the whole way through.

But when my dad said, “Elizabeth, are you pausing to deeply consider what you’re writing about?” I wanted to get defensive. I said, “Uh. I kinda perceive myself as a confessional poet, Dad,” I said, “Heir to Plath, Sexton and Sharon Olds. And the photographer Sally Mann, if I’m honest, Dad.”

But he said, “I’m not talking about art. I’m talking about my grandson.”

He was a lion for his grandson. I listened. I heard him. His words went to my heart, my maternal heart, which is in equal parts steel and cornmeal mush. I thanked him honestly for his feedback, got off the phone, and cried into my daughter’s stuffed animals, which are very soft and plush and forgiving.

So began my wrestling with my relationship with the Nora Ephron line, “Everything is copy.” Until now it has been my battle cry and artistic excuse for printing whatever I wanted whenever I wanted with very blinkered vision. Maybe, in fact, not everything is copy. Maybe it’s people’s lives, and we should be considerate and loving and respectful of their privacy. It’s a new point of view for me in our clickbait culture of confessionalism and parading nakedness.

When I started blogging, my kids were babes in arms, hardly people; they were creatures, mewling, milk-drunk, with eyes so deeply slate they were alien-denim blue.

I used the blog as a live journal to get me through postpartum depression and “the lost years” for me that were “the magic years” for them, when I felt overwhelmed by washing out sippy cups, lurking at the edges of the mommy wars, and co-sleeping and diapering.

Writing made the joys and the hardship of parenting into stories. Stories I could tell. Stories that I considered as one considers a diorama.

I was always the narrator, the main character, even if I was also the storm-tossed heroine, the hot mess in mom jeans who couldn’t get the overalls on her 2-year-old. Or figure out fourth-grade fractions homework. I was working out my issues. My kids were always satellites to the big round-faced moon of me.

I’ve shamed their eating habits in chat rooms. I have Facebooked the things they’ve said. I have skewered them horribly, but also with great interest and affection, as a collector might do to some butterflies.

I think Sally Mann’s photographs of her kids are luminous and transcendent, while others accuse her of child pornography. The lines between art and privacy are blurry. You have to consider what you are doing carefully. And previously I wasn’t.

Sally Mann and I don’t belong in the same sentence. I’ve been a Baltimore mommy-blogger writing about things like head lice. She is a world-class artist. But she and I have done the same thing: publicly disrobed our children.

My children didn’t give me their permission to tell their stories, or strike poses in a waterfall, naked, gorgeous as all get out, and human, with lives ahead of them, as Sally Mann posed hers. And now that I see that, I don’t want to mar my children’s glory and subvert their beginnings for my so-called art.

If I’m going to continue writing, I realize I need to find some new material, and for that I’m going to have to look more deeply within myself or entirely outside. For inspiration I have turned to writing about nature. The environment. The sea. Things that are bigger than me. I’ve been reading John Muir. I’ve been reading “Braiding Sweetgrass.” Nature is for all to see. Nurture is between me and my kids, off the record.


Elizabeth Bastos lives in Baltimore and writes about urban nature. Follow her at thenaturehood.blogspot.com and on Twitter @elizabethbastos.

Learning to Scale Peaks From My Underprotective Mother

Giselle Potter

I grew up hearing stories of my mom’s grad school days at M.I.T. in the early ‘90s: pulling all-nighters in the Fishbowl, a cluster of computers off of the Infinite Corridor; writing messages to other Project Athena users on black screens with green text; sneaking through tunnels at night. Later, after dropping out, she gave birth to me.

And after that, she climbed mountains in the Himalayas: Everest and K2, Gasherbrum II and Kanchenjunga. As the only child of a single mother, I stayed in Connecticut with my grandparents during her journeys, swinging on the swing set in their backyard, waiting for her to come home.

I missed my mom desperately and feared for her safety — so much so that she nicknamed me Mrs. Potts, after the motherly teapot in “Beauty and the Beast.”

But death was a real possibility in the Himalayas. I understood that much. Luckily, my mom always came back, her fleece smelling like countries I might never see.

For my 18th birthday in 2010, my mom drove from Connecticut to Boston to visit me at Harvard. She parked beside my dorm at 9:30 p.m. and texted: Come outside.

I met her at her car. We drove across Cambridge in her silver Subaru, not talking much. She parked at M.I.T. near the Small Dome, a structure that sits atop 10 Ionic columns. From the car, the dome looked like the surface of the moon.

“Leave your ID and wallet in the car,” Mom said.

“What?”

“Just do it.”

We slipped through one of the building’s open doors. She held my hand as we snuck upstairs, past corridors of professors’ offices and classrooms with empty chairs. The few students we passed didn’t recognize us as trespassers.

We found our way to the door she was looking for. The crash-bar read: “Emergency exit. Alarm will sound.”

Mom took out her car key and gingerly depressed the latch. She procured a piece of duct tape from her pocket and covered the latch so that the door wouldn’t lock. The alarm didn’t sound. Without another look back, she stepped onto the roof and started walking.

I hesitated in the doorway, one leg out and one leg in. “Mom,” I called out. “I’m scared.”

I was not then (nor am I now) drawn to climbing. For years I had a deep fear of mountains –– they represented an uncontrollable force, the thing that took my mother away from me when I felt like I needed her the most. But as early as elementary school, I understood that my mother’s way of healing was to seek solace in ascents and summits.

Many American parents would probably say their primary responsibility is to keep their children safe, to teach them to respect authority and stay out of trouble. These were not my mother’s goals.

She turned around to smile and reassure me. “You’re going to love it.”

I followed her. Late September wind gathered along the sides of the buildings, blowing my hair up and out, wrapping stray curls around my face. The late-night pedestrians under the streetlights looked like Lego figures.

We trekked across a long section of the roof, turned, and stared up at the dome. The summit. Mom laced her fingers together and went down on one knee to give me a boost. I took my fingers out of my pockets and breathed on them, trying to summon some warmth. I stepped onto her hands.

The first time we tried, I stepped without confidence and stumbled. The second time, my hands made contact with the lip. I did a half-pull-up and wriggled my torso onto the dome. I rolled over, turned around, and called down to Mom: “You coming?”

“No. You go. I used to have the upper body strength to do this alone. Not now.”

“You sure?”

“Go enjoy the view.”

I kept climbing, trying to get handholds and footholds on the surface of the dome.

I stopped just before the window above the atrium of the building, not wanting to feel vertigo, not wanting to test how thick the glass was.

From up that high, I could see the Charles River unfurled like a wing. Stray lights reflected on its surface. The domed skyscraper on Huntington Avenue stood across the river, as regal as a Himalayan mountain –– or what I imagine one looks like. I’ve only seen pictures. The moon was full, another gray dome in the sky.

I scrambled back down. We walked in silence across the roof, through the door (Mom removed the piece of tape with her fingernails), down the stairs, across the lawn, and into the silver Subaru. Only there did we collapse into laughter, relief. We’d had our adventure. No parking tickets waited on the windshield.

A year ago I rode my bicycle solo along the length of New Zealand. In the South Island, I cycled to the base of Aoraki Mount Cook, the mountain where Sir Edmund Hillary’s mountaineering career began. It was there I realized that my mother’s example has allowed me to be a female adventurer of a different sort.

I didn’t become a mountain climber, but for the last two years I have been traveling mostly by bicycle in the United States, Fiji, Tuvalu, New Zealand, Australia, Thailand, Laos and Cambodia. I’m halfway through a project to collect 1,001 stories about water and climate change from people I meet.

Now I can see that my mom’s birthday gift to me was more valuable than the kind that comes wrapped in paper and ribbons, even though the only tangible thing she brought was a strip of duct tape.


Devi Lockwood is a poet who will be attending the United Nations COP22 climate talks in Morocco in November as a youth delegate for SustainUS.

Related:

Sign up for the Well Family newsletter to get the latest news on parenting, child health and relationships with advice from our experts to help every family live well.

My Autistic Son’s Lesson: No One Is Broken

Giselle Potter

My youngest son, Sawyer, used to spend far more time relating to his imagination than he did to the world around him. He would run back and forth humming, flapping his hands and thumping on his chest. By the time he was in first grade, attempts to draw him out of his pretend world to join his classmates or do some class work led to explosions and timeouts. At 7 he was given a diagnosis of being on the autism spectrum.

That was when my wife, Jen, learned about the practice called joining. The idea behind it, which she discovered in Barry Neil Kaufman’s book “Son-Rise,” is brilliant in its simplicity. We wanted Sawyer to be with us. We did not want him to live in this bubble of his own creation. And so, instead of telling him to stop pretending and join us, we started pretending and joined him. The first time Jen joined him, the first time she ran beside him humming and thumping her chest, he stopped running, stopped thumping, stopped humming and, without a single word from us, turned to her and said, “What are you doing?”

“Learning what it’s like to be you.”

We took turns joining him every day, and a week later we got an email from his special education teacher telling us to keep doing whatever we were doing. He’d gone from five timeouts a day to one in a week.

The classroom was the same, the work was the same – all that was different was that we had found a way to say to him in a language he could understand, “You’re not wrong.” Emboldened by our success, we set about becoming more fluent in this language. For the next couple of years we taught ourselves to join him constantly. This meant that whatever we were doing had to stop whenever we heard him running back and forth and humming. But we could not join him simply to get him to stop running and thumping and humming. We had to join him without any judgment or impatience.

That was the trickiest part. The desire to fix him was great. I had come to believe that there were broken people in need of fixing. Sometimes, I looked like one of those people. I was a 40-year-old unpublished writer working as a waiter. My life reeked of failure. Many days I looked in the mirror and asked, “What is wrong with me?”

The only way to believe that Sawyer wasn’t broken was if no one was broken – not anyone anywhere ever.

I was used to seeing good people and bad people, smart people and stupid people, talented people and untalented people. I had to break that habit. I did this through a trick of perception. If someone was flapping and humming, or insulting you or saying something cruel about a whole group of people, I taught myself to pay attention to the person beneath the behavior, to the one who was scared or confused, who felt unlucky or undeserving or inadequate.

I did this, ostensibly, so that I could be Sawyer’s dad and help him flourish in the world. And by and by he began emerging from his bubble, began talking about wanting friends, began talking about his future. Now, 10 years later, at the end of our classes (we home-school him) every day he asks, “Dad, can we hang out today?” Had this been all that had come of joining Sawyer and learning to see a world without broken people, I suppose it would have been enough.

But 10 years later the writer who couldn’t get published, who felt like failure, now finds himself talking to groups and even crowds of people, telling them, in so many words, “Everything is O.K. even though it looks like everything is not O.K.!” I would never have talked to these people, nor published the essays that inspired these talks, if Jen and I had not joined Sawyer.

Yet the moment I really understood the power of joining came long before any of this. I was having an argument with my wife. I consider ours a good relationship, by which I mean it is the relationship against which I measure all my other relationships. But on this evening we were in the thick of a particularly nasty back and forth. It started small, as they all do. We each felt wronged by the other. The more we talked, the more we tried to “clear things up,” the worse it got. We raised our voices though we live in a small house and our boys would hear us. As the argument grew more heated, as Jen’s voice grew louder and sharper, she shifted before my eyes. I wasn’t seeing my best friend and lover anymore; I was seeing an enemy. Her words, it seemed to me from the opposite end of the couch, were daggers aimed squarely at my worthiness. I had to defend myself.

It was just as I was preparing my next attack that I remembered Sawyer and our practice. I took a beat, and even though Jen still looked like an enemy, even though she still sounded like an enemy, and even though I had learned over the years to protect myself against enemies, I asked myself this question: “What if she’s not your enemy? What if she still loves you? Then what are you looking at?”

This is often how I’d practice with Sawyer or myself or strangers on the street. If any of us looked broken, I’d ask, “But what if no one is broken? Then what are you seeing?” So that’s what I did with Jen. And as I asked this question, she changed again. Now I saw a woman who was as upset as I was, who wanted to be in agreement as badly as I did, who didn’t understand why we couldn’t reach an agreement. In that instant my war was over. Soon, the argument was over as well. As always, it had just been a misunderstanding. We still loved each other after all.

Joining Sawyer taught me that unconditional love is not some point on the map. It is a path that leads me where I want to go – to the world I want to live in, rather than the one I’m seeing.

William Kenower is a writer and the editor of Author magazine.

Related:

Sign up for the Well Family newsletter to get the latest news on parenting, child health and relationships with advice from our experts to help every family live well.

The Secret Superpower of a Shared-Custody Kid

Giselle Potter

At 5:25 p.m., my mother pulled into our driveway. I saw my dad’s Cadillac waiting for us and glanced at Mom, whose broad smile instantly flattened. At 10 years old, I could already read her thoughts: Pickup time was 5:30, and she wasn’t willing to suffer accusations of tardiness, just because he was Mr. Punctuality.

Six-foot-five with jet-black hair, my father cut an intimidating figure, even if I knew that he liked nothing more than to turn his long arms and legs into props as he made up the words to songs and did goofy dances. Now, he was all business, and gestured at his watch angrily.

“I still have five minutes,” my mother said. She was generally vivacious, but when feeling threatened, she could transform herself into an ice queen.

“What’s the matter with you? Daylight saving time,” my father said. He’d been waiting an hour. She had made this mistake at least once before.

The color drained from my mother’s face as indignation gave way to embarrassment. Now, in the era of digital clocks that spring forward and fall back automatically, and cellphones that make it simple to communicate, it’s easy to forget that something as ordinary as daylight saving time could once have been so disruptive. But it was 1991, and ever since my parents got divorced, the day after we changed the clocks always felt slippery. My dad prided himself on his superior organizational skills while my mother lived in a house littered with scribbled notes-to-self to compensate for her bad memory.

That evening, I rushed out of one car and into the other. I didn’t need an overnight bag; my parents had done what they could to avoid a situation where I’d be packing and unpacking twice a week, and I had two rooms outfitted with essentials and beyond — two pairs of pink-framed glasses, two closets full of clothing, two favorite stuffed animals. Dad backed out of the driveway quickly, and said very little until we made it past the traffic light at the end of the block.

“Your mother,” he started, his lip twitching. I waited while he paused.

He opened his mouth to speak and then closed it again. Then, his jaw softened. “How long do you think she would have gone until she figured it out?”

I laughed, utterly relieved. “At least another day.”

I would learn, eventually, that all families have rules that – when violated – threaten to dismantle the whole arrangement. At the time, however, I thought I was the only kid in the world with two houses and a handwritten schedule in either kitchen; at the start of every month, my father listed the nights I would spend with him and then presented my mother with a copy. His diligence was a safeguard against situations just like this one, when he rang the doorbell to an empty house and then let the frustration and resentment wash over him.

My mom never made that mistake again. Daylight saving became another scribble on a Post-it note, another thing she was careful not to let her busy mind forget. And my dad let it go, for the most part – her blunder became a private joke for us, shorthand for the way such a smart, put-together woman could also be so ditzy.

My parents broke up when I was 5 years old, which means memories of life before shared custody are available to me, but limited. They set the terms of their divorce under the guidance of their lawyers, and I – as many young kids do — adapted and accepted the new parameters of my childhood.

But as I tipped into my teenage years, switching back and forth became more difficult. There were, of course, small aggravations, like when I accidentally left something I wanted at the other house. Yet that didn’t account for the new anxiety I felt at those twice-weekly hand-offs.

My two homes could not have been more different. By that time my parents had both happily remarried and they’d created new lives: my mom went back to school and our house was quiet, our conversations intellectual. My dad had two more little girls, and every time I stepped through the front door, it felt like I’d joined the circus. Mom stressed the importance of academic achievement; Dad pouted when, in our limited time together, I shut my door to do my homework. My mother thought manners were a sign of good breeding, and she frequently appended a “please” to the end of my requests. When I asked my father for “a glass of orange juice, please,” he ribbed me for behaving like a guest in my own kitchen.

My father’s car had become a portal between two parallel worlds. Somewhere along the way, every day had started feeling like the Sunday after daylight saving time. I straddled two time zones, both familiar, but conspicuous.

Now that I am an adult, with a husband and young son, I sometimes let myself feel sorry for the girl who frequently woke up in the morning not knowing where she was. And the Sunday morning after the clocks change still makes me uncomfortable.

But I know that not all children of divorce are lucky enough to have two parents who work so hard to stay connected. I’ve also come to appreciate the ways my childhood shaped me. Growing up across two households with two distinct sets of customs has made me observant and adaptive: I’m bilingual, in a sense.

That anxiety that plagued me as a teenager is gone, replaced with confidence in my fluency in both families. And like children who actually learn two languages from birth, that innate ability to switch back and forth serves me well, especially when I find myself in unfamiliar settings. It’s not just me: I often admire the way my husband, another shared-custody kid, moves so easily through new environments. He’s good at parties, but he’s also the kind of person who lands in a city for the first time and, within 24 hours, gets asked for directions.

The expected legacy of a joint custody childhood is a craving for stability, which my husband and I share. The unexpected one is real agility: a knack for adapting, switching gears, understanding the language of families, blending in.

We’ve learned that a family needs to be strong, yet flexible. Just as we can’t control the changing of the season or the clocks, we have to accommodate hiccups in the rhythms of our lives.

Rachelle Bergstein is the author of “Women From the Ankle Down: The Story of Shoes and How They Define Us” and “Brilliance and Fire: A Biography of Diamonds.”

Related:

Sign up for the Well Family newsletter to get the latest news on parenting, child health and relationships with advice from our experts to help every family live well.

Playing Catch With Strangers

Giselle Potter

I’m shooting hoops at the playground in the schoolyard around the corner from where I live in Forest Hills, Queens, when I see a young mother pitching a baseball to her son. He’s probably about 8 years old.

She lobs the ball toward him, but it goes nowhere near the strike zone. The boy frowns with serious purpose and swings wildly, missing. Again and again she pitches off-target and again and again he strikes out.

I amble over to the mother, as nonchalantly as I know how, to offer my services as a relief pitcher.
“Yes,” she says, radiating gratitude. “Please.”

My father played catch with me only once as far as I can remember. We went out on our front lawn and tossed a baseball back and forth, each throw smacking loudly into our mitts. That summer afternoon, I felt about as happy as I’d ever felt. That’s just how it goes when you’re 8 years old and playing catch with your dad.

But then my father got busy with work, too busy to play catch with me anymore, always leaving early in the morning and returning late at night, and that turned out to be that. He had to do what he had to do. He was also born deaf, creating an extra barrier between us, and tended to keep to himself.

I promised myself everything would go differently with my own son and daughter. We tried pretty much every major sport together – baseball, basketball, tennis, soccer, you name it. We flung around Frisbees. We raced in sprints. We saw who could swim underwater the longest. It went great.

But then our kids turned into teenagers and young adults. They moved on to more independent physical pursuits – push-ups and jogging and such. And once again, that turned out to be that.

Play has always meant the world to me, even as a so-called adult. So now, if I spot a kid who evidently needs to play, I am happy to oblige.

Once, my wife, son, daughter and I went to a Thanksgiving dinner our friends held in our neighborhood. Halfway through the feast, the oldest son of our hosts, in high school at the time, looked as if he had mingled quite enough with all the grown-ups at the table. As it happened, so had I.

Knowing him to be a serious athlete, I invited him to have a pass with a football in the street in front of the house. Out we went into the November night, shrugging on our overcoats to shield us from the chill. We flipped passes to each other for who knows how long.

“Better than turkey,” the teenager later told me. “Much better.”

Clearly, I suffer from an acute case of Peter Pan Syndrome. But just as clearly, I’m ever-ready to answer my calling as a Pied Piper of play.

So it went last August when my wife and daughter and I took our annual vacation in Mystic, Conn. One afternoon, as we sunned ourselves by the pool at the motel, a boy about 10 years old left the lounge chair next to his mother and slid into the water. Soon, clearly bored, he started to toss a tennis ball in the air to himself. I joined him in the pool and held up my hand to signal for him to toss me the ball.

We played catch for the next half-hour, throwing the ball back and forth, the kid smiling the whole time. It perfectly fit my lifelong definition of fun – an activity spontaneous, absorbing even therapeutic.

Afterward, I said to my wife, “I swear, I could go through my whole life playing catch with strangers.”

“Yes,” she said, “I believe you could.”

A short time later, I realized that in a sense I already do. Playing catch, after all, is a dialogue, a conversation, a connection made. Every school had meant new classmates and new teachers, every job new colleagues and clients, every backyard barbeque new friends and acquaintances, every neighborhood new tenants and merchants, and every basketball court new teammates and opponents. I’d always, after a fashion, played catch with strangers.

Playing catch with kids is a job I still covet, even though I’m now eligible for Social Security. Play is a language children speak fluently.

Every time I engage in a sport with kids, I’m in effect re-enacting that catch with my father on our front lawn and those games I played with my kids. I feel, if only for a few moments, restored to my roles as father and son, connected both to the boy I used to be and the father I’ll always remain.

Back at the playground now, I pitch the baseball right down the pipe and the kid belts a shot into left field. His mother drops her jaw in disbelief. Then the kid clubs another blast even farther. He’s walloping every pitch all over the playground, smiling now, proud of himself.

“Thank you,” his mom says as I start to leave, then repeating: “Thank you.”

I go back to shooting hoops and hear a Mr. Softee truck pull up to the curb nearby, its familiar jingle a siren song drawing children and parents. And a minute later, the same kid, now probably feeling rather like a future Hall of Famer, walks over to me bearing an important message from his sponsor.

“My mom told me to ask you,” he says, “if you want some ice cream.”

I picture swirls of creamy chocolate piled on a cone and feel a twinge of earthly desire. But I decline. I’ve already had my treat.

Bob Brody is an executive and essayist in New York City. This essay is adapted from his memoir, due out next June.

Related:

Sign up for the Well Family newsletter to get the latest news on parenting, child health and relationships with advice from our experts to help every family live well.

A Poster Family for Diversity

Giselle Potter

Clicking through the new website of the private school my three children attend, I landed on a close-up photo of my oldest child’s smiling face. I shouldn’t have felt jarred, but I did. The picture, accompanied by a short interview highlighting everything she loves about the school, had been posted on the admissions page. Born in India and adopted by my husband and me, who are white, she’s a minority student at a majority white school that’s striving to become more diverse. Her interview was one of many, but for me, her mother, it generated a spotlight’s heat.

My older daughter is 14. Our son and younger daughter, siblings born in Ethiopia, are 13 and 12. When the children were small, strangers often mistook them for adorable, boisterous triplets. The kids’ friendly smiles and our family’s multicultural makeup ensured that we attracted attention everywhere we went. More than once, professional photographers stopped us on the street to propose a photo shoot. Religious strangers felt compelled to thank my husband and me for “loving the Lord and loving orphans.” Shoppers in the grocery store flagged me down to gush, “Your family is beautiful.”

The idea of us made a lot of people feel good, hopeful even, but I quickly grasped that we could also be perceived by some as a kind of entertaining novelty. For years, another mom at our elementary school referred to me, in public and private, as “Angelina Jolie.” I did my best to shield the kids, and myself, from the attention, so that our family could be just that — a family, not a symbol of post-racial equality or evidence of a supposed Hollywood trend, a trend some critics characterized as white celebrities adopting black babies as fashion accessories.

By virtue of their white parents, transracial adoptees often move in majority white spaces, inadvertently providing diversity for others. Although I’ve always tried to place my kids in environments where they encounter peers and role models of the same race, they inevitably end up in the minority at school, at camps, in enrichment classes and on sports teams.

Early on I noticed how schools and kids’ programs love to feature children of color in their marketing materials to highlight their commitment to diversity, just as the big corporations do. As much as I wanted pictures of my three to entice more minority children to join my children in their activities, I couldn’t bring myself to sign the blanket photo releases that came with every registration packet. I didn’t want my children being used to promote an ideal of diversity that didn’t exist in reality.

But complications arose. Without my release, my son’s fourth-grade teacher couldn’t post group pictures to her classroom website, an inconvenience that didn’t seem fair to her. Then a photo of my daughter, taken without my knowledge at our town’s Christmas parade, popped up in a catalog for the recreation department. A picture of all three kids appeared in a brochure for their favorite summer camp, even though I’d specified no photos. Complaining after the fact felt petty and pointless when I couldn’t identify any tangible harm done.

And then there was the problem of my work as a writer. Frequently when I published a parenting essay, the editor would want to run a family photo. For years I resisted, putting myself at a distinct disadvantage in the world of mommy blogs and image-centric parenting websites. As the kids matured, I discussed the pros and cons of every photo request with the whole family. The kids voted to publish the photo every time, and sometimes I did. Although I’ve been careful to never include their real names in my work to guard their privacy, there’s no question that using my children’s photos on occasion has helped my professional career, a reality I’m conflicted about, even if my kids are not.

And so I gave up. These days I sign all the photo releases for schools and camps and teams because this is the way the world works. All I can do as a parent is maintain an ongoing dialogue with my children about the hidden messages in advertising, about the ways minorities are portrayed in the media, and about why I feel so protective of their likenesses.

Sometimes, when I find a picture of my daughter playing bass guitar on the girls’ rock camp Facebook page or discover a video of my son’s deft footwork being tweeted by his soccer club, I’m thrilled. To see my kids promoted for what they do, not what they look like, feels good. Finding them featured in a camp catalog or a school brochure doing nothing but looking “ethnic” alongside their white peers brings up less positive emotions.

The photo and interview on the school admissions page felt like a “do nothing” at first, even though the school does a good job representing students of all backgrounds in its marketing as a whole. The post also felt like an intrusion. I’d never signed a release for an interview, and nobody had warned me it was coming, let alone sought my permission.

“Did you know they were going to put this interview with you on the website?” I asked my daughter.

“Of course,” she said.

“And you’re O.K. with it?”

“Obviously.”

She’d made her decision. With my children approaching adulthood in the age of the selfie, they’ll be making decisions daily about how to use and distribute their own images, with their status as members of minority groups an added twist. As a mom who shies away from the camera, I hope I’ve given them the tools to figure it out.

Sharon Van Epps is a freelance writer.

Related:


Sign up for the Well Family newsletter to get the latest news on parenting, child health and relationships with advice from our experts to help every family live well.

With Our Father’s Death, a Chance for Me and ‘the Boys’ to Connect

Giselle Potter

When I was a small boy my dad used to ask me for show tunes. “Sing ‘Happiness!’” he’d say to me on the ferry to Shelter Island, and I’d happily comply, the wind blowing the notes out into the Peconic Bay. And he liked to call me into the living room when he and my mom had company and say, “Sing something for us, Artie!”

My two older brothers dealt with this by secretly teaching me the song “Sodomy” from the show “Hair,” telling their credulous little brother that this would be a big hit next time Dad asked for a party number. It was a big hit all right.

Dad loved us all equally, but that didn’t mean he saw us as the same. “The boys and Artie” was a phrase I heard a lot, despite my protestations that I, too, was a boy. Perhaps he’d just gotten used to my brothers as a duo because they were only two years apart, and there was nearly a four-year gap between the middle one and me. Perhaps they were just more boyish.

My brothers certainly were the smartest kids I knew. (The smartest kids, it seemed, that everyone knew; as I came up behind them in school, I could count on teachers to say, “Oh, you’re a Levine brother – I’m expecting a lot from you.”) They never got less than an “A” as a grade. Each one, in turn, became the captain of the wrestling team and the tennis team. I idolized them even as I struggled with a sense that I’d never truly measure up. I was diabetic and I struggled physically. I was less perfect in school.

Dad didn’t make these comparisons (at least out loud). He expressed his love by showing up. He came to the musicals I performed in and clapped loudly. He went to every wrestling match my brothers competed in, shouting advice and living every takedown and pin, as if it were happening to him.

He wasn’t a heart to-heart conversation guy. As a gastroenterologist, Dad was more interested in talking about organs in the digestive tract. But he proudly (some might say relentlessly) reported our accomplishments to his patients and friends.

My father may have passed his tendency to express love by proxy on to us. Once when I was in seventh grade, I overheard my middle brother, Dan, who was a high school junior, talking to the kid who was running the school variety show. “You should get my brother to sing,” he told her. “He has a beautiful voice.”

Forty years later, this small comment still sits on the open shelves of my brain like a trophy, for an accomplishment you’d think I’d have outgrown by now.

Of course, overhearing something requires being in earshot of one another. And for us, that kind of proximity was fleeting. As adults we lived too far apart for a spontaneous hamburger or a cup of coffee, or a guy-like sharing of a sports event.

Over time my brothers seemed to have become more and more like my dad and I less so. Both became doctors, like my father. Both married nice Jewish girls. I married an Italian guy (O.K., a doctor, but still… ) and became a children’s book publisher. We each found “success,” but were careful not to talk about it with each other too directly.

For my dad, however, I would save up facts to report. If I was getting a promotion at work, if a poem had been accepted for publication, if someone praised my son, I would enjoy the good news. And then I’d enjoy packing it up for my dad and unpacking it in our next phone conversation, after which he’d say, “Terrific!! Want to talk to your mother?”

If my father was satisfied by this, I think my brothers and I were less so. Certainly, over time, it seemed to serve our relationships less and less well. What fact exchange over the phone can convey the complications of a marriage? What fact can express the near-fatal vulnerability of parenthood? What fact can reveal the passage from youth to middle age, the glimpses of what comes next?

And so we actually communicated less. It was nothing dramatic. We still loved one another. But we didn’t see one another more than once or twice a year. I’d drive past my brother’s town and think about stopping, but wouldn’t. We’d each visit our parents. Separately.

As my dad got older and developed cancer and heart problems, my brothers’ roles as medical consultants became more prominent, but we didn’t truly draw together. To spare my feelings they sometimes spoke with my husband about my dad’s problems, but in our concern we were still siloed, even as age began to make us all look more like each other … and more like him. And even as age began to take my father away from us all.

We started talking more during Dad’s long, slow, torturous decline from Alzheimer’s disease, but in some ways this just meant that the facts we had to report were not vacations, business news or our kids’ activities, but sad, tactical communiqués from a losing battle.

Then, after my dad died, a strange thing happened. My brothers began to call me just to check in. My oldest brother took to texting cartoon strips with fart jokes in them that he thought my dad would have loved. (And it’s true, the phrase “break wind” was a real favorite of his.) They asked to visit. They meant it.

I realized that the most powerful, tangible reminders of my father resided in my brothers, and in me, too. I reminded them of him. And I was one of the very few people on earth who could remember him as a father, if not exactly as they did, well, then as closely as almost anyone could.

My dad, whose affections had been a (sometimes sore) point of comparison in my head, was becoming the person who might now draw us close.

The other day I got a starred review for a picture book I’d written based on my dad, and I so wanted to call him up to share that perfect, shiny fact.

Maybe I’ll send it to my brothers.

Arthur Levine is the publisher of Arthur A. Levine Books at Scholastic, whose books include the Harry Potter series. He is the author, most recently, of the picture book “What a Beautiful Morning,” about a family dealing with Alzheimer’s disease.

Related:


Sign up for the Well Family newsletter to get the latest news on parenting, child health and relationships with advice from our experts to help every family live well.

How to Tiptoe Around a Depressed Mother

Giselle Potter

A depressed mother hates noise. She hates a lot of things — sometimes it seems as if she hates everything. But noise is her particular enemy. This is because she needs her sleep. She doesn’t always seem tired. But sleep is sacred to her, and you must never interfere with it. Particularly in the mornings. This makes life complicated if your bedroom — the nursery — is directly above hers and the floors are covered in linoleum, as they are in London in the 1960s. When you wake up and need to go to the bathroom you must avoid certain creaky spots. So you navigate like a cat burglar, tiptoeing on the more solid sections until you get to the stairs down to the bathroom. You hold your breath as you pee as if not breathing will somehow mitigate the sound. Do you flush? Not at this ungodly hour.

Silence is what your mother craves, but it is also her weapon. When she is in one of her moods, she settles into a powerful silence. She actively ignores you. She doesn’t respond to your attempts at conversation, your questions, your pathetic efforts to amuse her, to cheer her up. It’s as if you don’t exist, even when you’re in the same room. Over the years you learn what can trigger these silences and you do everything you can to avoid them. But when they inevitably settle in, it’s as if the world as you know it comes to an end.

Your mother’s depression, previously intermittent yet intense, has settled in with a permanence since your father left the house and your parents announced they would be getting divorced. You’ve always known she suffered from the blackest of moods. Your father has told you the story of your younger brother’s birth, and how he wanted the new baby christened Sebastian. But because your mother “wasn’t speaking” to your father throughout the period between birth and baptism, your brother is now called Paul.

Paul is the person you go to after you’ve been to the bathroom. He’s a little boy, just 4, and at three and a half years his senior it’s your responsibility to put him in his uniform, tie his tie and get him down to the kitchen where you make his breakfast. Your mother can’t tie a tie. And she doesn’t get up for breakfast. She doesn’t get up to see you off to school. The two of you eat quietly, grab your anoraks and having quietly shut the front door behind you, walk together. Recently, Paul has begun to stutter. Eventually he will be taken to a specialist who will try to find out the cause. Your father says he used to stutter a bit as a boy, too, and often imitates Paul. This drives you mad.

It’s hard to remember when you decided that you don’t love your mother. But there is a definite line in the sand when you become her fiercest critic. You hate her arbitrary moods. You hate her selfishness. You hate her neglect. Being depressed and being maternal don’t exactly go hand in hand. A depressed mother rarely puts her children first. For example, if on a Saturday morning you’ve been told to stay upstairs until your mother says you can come down, don’t (dying of boredom) find a rubber ball and start to play catch with it by yourself. Because every so often you’ll drop it. Eventually there will be a roar of rage from below. “GIVE ME THAT BALL,” she’ll yell. As you silently hand it to her, she will shout in your face, “GET DRESSED! AND GET DOWNSTAIRS!”

You’ll put on your clothes and creep down to the hallway with Paul. The two of you will half run, struggling to keep up with her as she marches rapidly and in silence out of the house and into Hyde Park about 10 minutes away. As you cross the street into the park she’ll hurl the ball into the trees.

“Go find your ball,” she will say. “And get lost.”

Having a depressed mother is an excellent way to turn a child into a liar. It’s completely against your nature, but some instinct in you makes you aware that there are some things your mother just can’t handle. So you lie by omission — you don’t tell her a lot of the fun things you do with your father. You’re hardly aware that you do this, until a few years later when Paul tells you he finds it easier to lie than to tell the truth. He’s more used to it.

Is it the lying that causes you anxiety? Or is it the general atmosphere in the house? Anxiety is the air you breathe, and it constantly affects how your body works. You’re supposed to put your light out at 7:30 at night, but sleep doesn’t come easily now, so you put your lamp under the covers and read for another two hours or so. Sometimes when you have to go to the bathroom you are too scared to, so you have accidents. You throw up from nerves. You watch yourself as if from a distance, interested in the experience, making a mental note of it.

You make mental notes of everything. (Having a depressed mother is great training for a journalist.) You note when the fridge is empty to get your mother to call the grocers. Your first experience of actual note-taking is when you decide to make shopping lists for her. You see when the laundry hamper is three-quarters full so you can start encouraging her to get the washing done. When she ignores you and you run out of clean underwear, you turn your dirty underwear inside out.

Routine is extremely important to children of depressed mothers. The clock becomes the nanny. Any deviation from a schedule is not to be allowed. The moment tea is over you take Paul upstairs for bathtime. You lay out your grubby clothes for tomorrow, and you brush your teeth. You go downstairs to say goodnight to your mother, now in her best mood of the day. There is a drink in her hand. She laughs as she allows the two of you to jump on her bed.

Then she says goodnight, and up you go to bed where you read about jolly red-cheeked children with fathers who smoke pipes and mothers who bake pies, wearing aprons over their tweed skirts, until you fall asleep.

Emma Gilbey Keller is a journalist and author who is working on a memoir about her experience of motherhood, from which this essay is adapted.

Related:


Sign up for the Well Family newsletter to get the latest news on parenting, child health and relationships with advice from our experts to help every family live well.

After a Stroke at Age 30, Making Our Own Luck

Giselle Potter

On our flight to Hawaii for our “babymoon” last June, Dave turned to me and asked, “Does my right eye look weird?”

It did. His pupil was asymmetrically dilated, a seeping pool of black that blocked out all of the beautiful green. He couldn’t see.

Two minutes later, Dave lost consciousness. We made an emergency landing in Fargo, N.D.

An ambulance whisked us to the Sanford Medical Center, as a team of medical personnel buzzed around him. “Does your husband smoke? Drink? Have a history of stroke in the family?”

No, no and no.

Dave — only 30 years old, a lifelong athlete, an aggravatingly healthy eater — had suffered an incredibly rare, often fatal stroke; a clot had blocked an artery to his brain, starving his neurons of critical oxygen, leaving several graveyards of dead cells in his mind.

The babymoon was to have been a much-needed rest after a bruising year of Dave’s medical residency and a huge round of edits on my latest novel.

Five months pregnant, I played many roles. Wife to Dave, my college sweetheart and hard-charging, fun-loving orthopedic surgery resident. Writer of historical fiction, sister, friend, daughter to two great parents, one of whom had just announced his candidacy for president.

Our parents would arrive in the morning, but in those first hours I was alone, and terrified. And freezing — I could not stop shivering.

I pulled out my iPod and clicked on my favorite playlist, songs Dave had introduced me to in our 12 years together.

“Helpless.”

“Comfortably Numb.”

“Knocking on Heaven’s Door.”

I tossed the iPod. My mind was a dizzying highlight reel of Dave. What was the last thing he’d said? I saw images of Dave in college, graduating from medical school, on our wedding day.

The day after Dave and I got engaged, we found three four-leaf clovers in less than five minutes. We’d never found one before, we haven’t found one since — but that day, we took it as a propitious sign.

I glued those clovers under a photo of us and wrote: May we always remember how lucky we are.

Now, years later in Fargo, some of that luck kicked in: Dave woke up.

He opened his eyes.

But the man who woke — vacant eyes, no voice, fractured mind — was not my Dave. We didn’t know if that Dave would ever return.

Once medically stable enough to travel, Dave, hooked up to wires and machines and being fed oxygen through an endotracheal tube, flew via air ambulance back to Chicago.

There we settled into the neuro-intensive care unit at his home hospital, Rush. Over the past three years he had spent more time there than at home, but now he had no idea where he was.

My days were full of holding Dave’s hands and signing paperwork, meeting doctors and nurses, tracking heart monitors, feeding him gelatinous meals and repeating every few minutes where he was and why he was there.

I’d always lamented how often Dave’s medical training took him away from me. Now, there wasn’t a moment of his day in which I was not intimately involved; I knew when he’d last been to the bathroom.

There was a packed schedule of physical, cognitive and occupational therapy. It was hard not to grow disheartened when Dave, who had excelled at Yale before going on to medical school and his first-choice surgical residency, could not think of a woman’s name beginning with the letter “A.” My name begins with the letter “A.”

May we always remember how lucky we are.

After long days, I would return to our empty apartment and I’d look at that photo with the four-leaf clovers and I’d want to hurl it across the room. Had I really needed to revel in my good luck, gloating before the gods, daring them to rob me of my fortune?

I had always prided myself on having it more or less together, but this was beyond me; I learned to ask for help, and to keep putting one foot in front of the other, even when the path before us was littered with fear and unknowns.

When you’re swimming in the ocean, there’s always that one scary moment when you have to confront the white, roaring wall of breaking water. I swam directly at the breaking line of my fear, anger, sadness and loss.

I hugged Dave tighter in the middle of the night.

There was laughter, too, as Dave healed. There were so many loved ones who showed up for us. There was celebrating, like the day when Dave officially emerged from the state of amnesia and remembered we were having a baby girl.

When she arrived, Dave was beside me in the delivery room — he counted me through contractions. I studied his face the moment he held our pink, healthy little girl. He was immediately and irrevocably in love with his daughter.

I’m tired a lot these days. I’m tired from having a new baby, from the early feedings and the mental and emotional attention that is required of new moms. I’m tired from the work of writing and launching a new book. I’m tired from being a caregiver — lying awake at night worrying about Dave’s recovery, wondering when the plateau will come, wrestling the many unknowns that lurk in our family’s future.

We are fighting hard not just to reclaim the memories of the past, but to reclaim our present. Our right to our future.

I’ll always bear the scars from that plane ride, the Fargo intensive care unit, the Chicago hospitals and the long days of rehab. I’ll never again look into Dave’s soft green eyes without making sure his pupil is not dilated.

May we always remember how lucky we are.

I can finally stare at that photo again without wanting to hurl it across the room.

We aren’t lucky because life is easy or smooth, or because it makes sense or because we are in control. We are lucky because life is fragile and entirely out of our control, but it is ours to live.

Allison Pataki is the author, most recently, of “Sisi: Empress on Her Own.”

Sign up for the Well Family newsletter to get the latest news on parenting, child health and relationships with advice from our experts to help every family live well.

Related: