Last year the author wrote about parenting with motor neurone disease. Here, he reflects on the end of life, before his death two weeks ago
By Joe Hammond
In the beginning I was just a dad who fell over a bit and then couldn’t drive the car. Then we had a name for what was happening to me: motor neurone disease. The rest of my physical decline has taken two years and I now write with a camera attached to a computer, which tracks reflections from my pupils. I can use the same device to talk with my synthetic voice. It’s obviously slower to use, and has trained me to get to the point, in much the same way that dying has.
In the room next door, as I write, I can hear Jimmy, my two-year-old son, offering to take passengers on a bus ride to various destinations. It’s half-term and Tom, my seven-year-old, has wandered out into the garden. He’s smiling, looking back at the house, as he points out a squirrel to someone standing inside. There’s adult laughter, too. I can hear Gill, my wife, talking with one of my carers.
I’m in an adjacent downstairs bedroom, suspended in a sling that hangs from the ceiling hoist. It’s positioned over a bedpan, and my floppy neck is wedged upright between a pillow and a piece of foam. I usually stay here for a while because it also has a view of the garden. It’s gusty and leaves are twirling down from an ash tree.
I realise I’ve been saying goodbye to my family for two years. Always imagining this version of myself, without a voice or moving parts. But now I’m here, I can see that we’re all just interested in the same thing: how anxious all these squirrels are as they bury their treasure in the turf. How they keep looking back over their shoulders. And how life just carries on, until it doesn’t.
There was a moment halfway through my decline when Tom needed to check whether he would die one day. He was wrapped in a blanket on my lap as I confirmed its inevitability. He sobbed and I pulled the sides of the blanket in around him. After a few moments his tears came to an end, and five minutes later he was upside down on the sofa giggling at his toes.
Children walk past spiders’ webs all the time and see little things dying. Death is all around them; they know this better than their parents, who have often forgotten. I know I had. But children haven’t reached this stage yet. Death and dying can be known. It doesn’t stop them laughing at a fart or making an empty crisp packet go pop.
Jimmy was at my bedside a few mornings ago dispensing imaginary ice-cream. I was staring upwards, and I could hear him low down to my right. I opened and closed my mouth to show that I was eating some of the “[va]nilla” on offer but, silent and motionless, I don’t know if he noticed, and then I heard him padding away into the next room.
I can’t be active in the life of my children. I have to see what the day brings. There was the moment last week when Tom rested his cheek into my upper arm, gently twisted the top of his head upwards against my flesh like a nestling cat, then twirled away. It was a moment that must have lasted five seconds at most but I kept it with me – held on to it – for days, as if I wasn’t just making contact, but taking an imprint.
I owe these moments to materials that are both plastic and hollow. To an expanding network of tubing crisscrossing my body: transparent blues and yellows, concertinaed or smooth. The largest gauge of tubing has the central importance of the eastbound M4 heading into London. This is the one swooshing air and oxygen into my lungs, but there are other tiny subcutaneous tubes more like narrow Cornish lanes, trickling a minuscule palliative cocktail just under the skin of my bicep. The other key thoroughfare is the one delivering sticky beige nutrition through a macaroni-sized tube running directly into my abdomen.
Tubes are now a way of life and, with so many doctors and nurses coming and going, there’s plenty of spare tubing lying around. This place is like a fisherman’s cottage but with coils of plastic everywhere – in wicker baskets or hanging from hooks. A lot of it ends up in the bath with my two boys. Or it becomes part of Jimmy’s marching trumpet band.
When I was diagnosed, my heart broke in different ways, but some of those feelings have softened. It was always the tiny pieces of future that hurt. I’d imagine Gill and Tom and Jimmy unloading shopping, or just being listless together on a Sunday.
But I’m very still with this disease now: I’m an observer, sensing lives happening in other rooms. I hear bottles and cans rattling in plastic bags. I see the rain at three o’clock on a Sunday. All this detail goes by or around me and I see it working. I see three people moving and turning together – and it’s no longer breaking my heart. It’s just sad and comforting. I didn’t expect the end of my life to feel like the future.
I see and hear my family clowning around and I want so much to be in there with them – teaching my children to brush their teeth in the style of a camel. Instead I’m unnaturally still – observing the way their bodies move to express or receive humour. The way a back curves, or a head is thrown back. Watching hands thrust out wide, or even the opposite of such movements. All the infinite expressions. But I’m not clowning around any more; I just see it going on – how ornate it is, how beautiful.
Other losses are simpler and more incremental. Sometimes they are nothing more than adaptation and sometimes, like the loss of my voice, they are devastating. I lost my swallow very quickly. There was a three-week period when Gill made sure I had lots of really nice soups, and that was it. Food was a thing of the past. I’ve never got over that loss.
I’m fortunate that my ventilator filters out the aroma of most foods, replacing them with a smell like the inside of a plastic bucket. Occasionally smells get through, like roast lamb or the mist that comes from Tom peeling an orange, but mostly I’m assailed by food memories. The most recent is of the yellow Styrofoam containing takeaway from a Lebanese restaurant. Other food memories are more permanent and catastrophic, and these are all the foods I ever made or shared with my young family.
When the boys are in bed, Gill climbs up on to my hospital bed and sometimes falls asleep. It can feel like I’ve been waiting the whole day for this moment. Watching Gill asleep always feels like such peace to me, and some of this article would have been written with Gill by my side in that way.
It’s really hard to cry when you rely on a mask for air. I use a mask that’s attached to my nose, so when I cry my mouth stretches wide open and all the valuable air gusts out, like a badly insulated letter box. And the camera I use to communicate can’t track the progress of my pupils, so crying is a form of incapacitation. It’s so much easier for Gill, who can stretch out on the bed and sob without any of these secondary difficulties. It’s not that we’re always crying together. It just happens sometimes. Recently Gill’s been reading to me from old travel diaries, written in the days before we had children. Stories of mountains and recklessness on motorbikes, other countries. The past feels so luxurious.
But now it’s the present. It’s all been leading up to this. Sad but no longer broken. Here with Gill. It’s a magical kind of sadness, saying goodbye. A bit like preparing to travel again, but no longer together.
In grief, things that don’t normally bug you can bring on strong feelings – anger, resentment, jealousy. And sometimes you feel guilt that you should have done more, spent more time with him or her, or just said ‘I love you’ one more time.
Ben Boyer can still picture the expression on his wife’s face that night six years ago, as they talked over dinner at their favorite Italian restaurant in London. It had been four years since Xenia Trejo had been diagnosed, at the age of 33, with a malignant brain tumor that doctors said would eventually end her life. But as she sat across the table from Ben that evening, Xenia radiated joy. She felt strong, and after numerous rounds of treatment, her doctors had just told them that Xenia’s tumor was stable enough to do something she had long dreamed of: pursue a pregnancy. Now Xenia was asking Ben, What do you think? Should we try?
They had always planned to be parents, and the possibility had hovered even since Xenia’s diagnosis, but now it finally felt within reach. “Let’s do it,” Ben told her. By the time they left the restaurant and walked home together, they knew they would try to start a family. In that hopeful moment, the reality of their circumstances felt far away.
There are countless parents who don’t live to see their children grow up, but most of those tales involve unforeseen tragedy. The story of Ben and Xenia was different. When they learned of her illness, the future Xenia and Ben had long envisioned for themselves came undone, and an urgent reckoning followed. What would they fight to keep of the life they once imagined? In the face of a certain ending, they chose to create a beginning.
The number of people who confront this exact extraordinary convergence of birth and death is small enough that no one knows precisely how many are out there. “It is probably a very small number, though not an insignificant number,” says David Ryley, a fertility specialist at Boston IVF and a clinical instructor at Harvard Medical School. “I think you won’t find that data, because it hasn’t been collected.”
Yet there are outliers facing terminal illness who have forged ahead with plans to have children. Among them are a few who have risen to cultural prominence after sharing their stories: Paul Kalanithi, the neurosurgeon and author of the best-selling, posthumously published memoir “When Breath Becomes Air,” dedicated his book to his infant daughter, who was conceived after Kalanithi was diagnosed with metastatic lung cancer. Nora McInerny, host of the popular grief-focused podcast “Terrible, Thanks for Asking,” has widely shared her experience of having her son, Ralph, with her late husband, Aaron Purmort, who learned he had brain cancer before they were married. Ady Barkan — a prominent liberal activist who was diagnosed three years ago with amyotrophic lateral sclerosis, or ALS, a neurodegenerative disease for which there is no cure — recently welcomed an infant daughter, his second child with his wife, Rachael King.
These are distinctly modern stories. For couples who confronted grim diagnoses before the turn of the millennium, the option to preserve their fertility was much harder to find and less likely to succeed. But the ability to freeze and test embryos improved dramatically in the early 2000s, bringing with it complex existential questions. What would it mean to have a baby in these circumstances for the parent who would die? For the parent who would live? For their child?
Xenia, Ben recalls, was not inclined to dwell on questions she felt she couldn’t answer. Her “entire M.O. was to live one day at a time, and she did not want to entertain larger metaphysical and moral debates about what this meant,” he says. He, however, was initially more hesitant. “I was a lot more nervous about what that meant for us, for her, and she was the one saying, ‘We should do it,’ ” Ben says. “For her it was, ‘I have to do this.’ I think she was put on this Earth to do it. She loved kids so much, it was not even a question. For me, I wanted to do whatever she wanted to do, but I also think I played the devil’s advocate more than once — ‘Here’s one possible reality, here’s another possible reality.’ But Xenia’s entire thing was, ‘If I let myself get mired in all the theoretical possibilities, I won’t be able to live a life at all.’ ”
And so they didn’t spend much time trying to decipher an unknowable future. Once the doctors said there was no reason to expect that a pregnancy would threaten her health, Ben says, “it was a given that we were going to try to do it.” In February 2014, Xenia gave birth to their daughter, Ella. Ben still recalls the euphoria of watching the nurse place their newborn on Xenia’s chest. He still can’t quite believe the song that played on the operating room radio, the refrain resounding in that moment: God only knows what I’d be without you.
Ben had first met Xenia in 2003, when they both worked for the BBC’s Los Angeles office. He was drawn immediately to her warmth, humor and adventurous spirit, and they fell in love quickly. Three years into their relationship, Ben transferred his job to London, and Xenia followed soon after. They were in their early 30s then, overjoyed to be living together for the first time in their tiny studio apartment. Ben remembers one particular afternoon in the winter of 2007, when they walked home together through falling snow, and he felt a deep sense of belonging: They would be married, have a family together, grow old together.
But in 2009, Xenia was struck with a wave of debilitating headaches. A seizure soon followed, which led to the discovery of the tumor in the frontal lobe of her brain. The doctor who delivered the news was shockingly blunt. “He immediately said, ‘So, you know, I assume you understand that you might die within a year,’ ” Ben recalls. “I remember thinking: This can’t be right.” As it turned out, it wasn’t: The couple quickly sought opinions from other doctors, who explained that while the prognosis was ultimately terminal, there was no reason to predict such a grim timeline.
They had been together for six years by then, and though they were not yet engaged to be married, their commitment to one another was absolute. Before Xenia started chemotherapy, the couple froze several embryos.
From the beginning, there were doctors who offered statistics, percentages, who told them how likely she was to still be alive in three years or five. There were also doctors who voiced a more universal truth: We can’t know with certainty what will happen, or when. Some patients with Xenia’s cancer died soon after diagnosis; others lived two decades or more. “Some people think of these things mathematically,” Ben says. “Some people think of them cosmically.” Xenia had always been, would always be, among the latter, he says. She would not be consumed by the inevitability of loss. “She refused to live like this was a death sentence,” he recalls, “even though it was explicitly a death sentence.”
Her treatments halted the progression of her illness, allowing them to resume their lives, and in 2011, they planned their wedding. Ben remembers the question Xenia once asked him, a few months before the ceremony: Are you sure you still want to do this?
He was. They were married that September on a historic ferryboat moored in San Diego Bay, surrounded by their loved ones. And two years later, over that dinner in London, they decided to move forward with building a family. They wound up not needing the embryos they’d frozen; Xenia became pregnant soon after they started trying to conceive.
From the moment Ella arrived, Xenia embraced motherhood, Ben says; she relished every minute of her 14-month maternity leave. She had always been a spontaneous and outgoing person, so it didn’t surprise Ben when she hopped on a train to Scotland with their baby to join Ben at a comedy festival, or showed up to bustling happy hours at their favorite pubs with Ella in tow. “We had an awareness that there was a finite number of experiences we were going to share together, and we knew we had to grab on to those moments,” Ben says. “We wanted to get out and experience whatever we could while we still could.”
Late in 2015, Xenia suddenly suffered an onslaught of seizures, and doctors confirmed that her cancer had begun to advance. Within months, the family moved back from the United Kingdom to San Diego, Xenia’s hometown. Her health continued to decline, and in the fall of 2017, Ben, Xenia and Ella moved in with Xenia’s parents, settling in the little house in San Ysidro where she had grown up. In those days, Xenia sometimes spoke to Ben of her sorrow for what she knew was coming. “She would say things like, ‘I’m so sorry you got stuck with this,’ ” he remembers. “She would ask if I regretted anything. And I would say, ‘Don’t be ridiculous.’ I would tell her, ‘This was the best thing of my whole life, that I met you, that I got to have this time with you.’ ”
Toward the end, a therapist suggested that Xenia might consider writing a letter to Ella, something she could read years after her mother was gone. Ben and Xenia were both aware of viral stories about dying parents who left behind written or recorded messages, birthday cards for their children to remember them by. But Xenia didn’t know who Ella would be at 16 or 20; she did not want her daughter to feel bound or burdened by parting words from a mother who had long been absent, Ben says. Xenia wanted Ella to be free.
Xenia’s decline was swift, her illness eroding her cognitive functioning, robbing her of language and distorting her personality. Through the darkest of those days, Ben says, Ella remained the one immovable tether to Xenia’s sense of self. Sometimes she would try to talk to her daughter, and couldn’t. “This,” Xenia would say to Ella, the only word she could summon; “this, this,” she would say with mounting urgency, and Ella would grow unsettled by the sudden intensity. But more often, there was an obvious contentment when the two were together. “Ella would walk in the room, and Xenia would immediately smile and become animated,” Ben says. “She was always so happy when Ella was around.”
On her last morning, Xenia awoke unable to speak. Ben and Ella lay with her as the house filled with family. She died that afternoon, a bright Sunday in May: Mother’s Day.
Buried in the digital archives of MetaFilter, an online message board that predated Reddit, is a question posed by an anonymous husband in 2010; he explained that his wife had been treated for an aggressive brain tumor, but they desperately wanted to be parents, and he wondered whether having a child was a wise or ethical choice. Hundreds of replies unspooled below his post, passionately voicing every imaginable viewpoint:
“You’re in for a world of trouble if you do it. But it may be the thing that you need to do.”
“Having lost a mother to cancer … I do think it is selfish to knowingly bring a child into the world knowing full well that the child will have to watch one of its parents die, and then grow up without them.”
“As someone whose father died when I was eight, I think you should do it.”
The medical community has grappled with this question as well. In 2005, the American Society for Reproductive Medicine convened a group of reproductive biologists, obstetrician-gynecologists, pediatricians and medical ethicists to weigh in on whether cancer survivors should be allowed the opportunity to reproduce, given the potential of a decreased life span. “It’s important to note there, the potential of a decreased life span,” says David Ryley, the Boston-based fertility doctor, who specializes in treating patients who have been given a cancer diagnosis. “Nothing in medicine is zero percent. Nothing in medicine is a hundred percent.”
The expert panel’s formal conclusion was clear, Ryley says, reciting it aloud: “The child in question will have a meaningful life even if he or she suffers the misfortune of the early death of one parent. While the impact of early loss of a parent on a child is substantial, many children experience stress and sorrow from economic, social and physical circumstances of their lives.”
“I could get hit by a bus today. How do I judge a couple who wants a child but may suffer misfortune?” Ryley continues. “Reproductive freedom is well established in this country, and this is a personal choice. We have patients seek counseling to help them get through that minefield, to not let them feel judged, to know that the choices they make are in the best interest of their life, their family, their relationship, and to understand that what is important is how they feel.”
Those sentiments are echoed by Merle Bombardieri, a therapist and author in Massachusetts who specializes in parenthood decision-making and often urges her clients to focus on inward reflection. For more than 30 years, she has counseled couples and individuals who struggle to decide whether to have a child, and she has worked with numerous people who faced grave health concerns.
This subset of her practice requires a somewhat different approach, she says, because they’ve already leaped beyond what she views as a foundational objective of her work, which is to ensure that her clients have considered their decision within the context of their own mortality. “Do you know that you will die one day?” Bombardieri says. “On one hand, that’s a ridiculous question, because everybody knows they’re going to die one day. But do you really know? Have you thought about what that means? Are you comfortable with your choice, knowing that you won’t be here forever? If you are, then you can feel more certain that it is the right choice.” For clients facing dire diagnoses, “this awareness has already come for them,” she says, which leaves other, more logistical factors to sort through: What is the prognosis? What sort of support system — community, family, friends — is available to offer help? What is the family’s financial situation?
Still, Bombardieri says, the most powerful motivations come from a more visceral place, where a person must reconcile hope with reality, and decide what they feel is still possible. “There are people who have always believed that they would have a child someday,” she says. “And, of course, there is the idea that — even if you die — you have left a child behind in the world. And that, too, is a kind of survival.”
Ella’s fingers grip her father’s, tugging him along as they walk a winding path through the San Diego Zoo, surrounded by life in all its strangest and most extraordinary forms: cheetahs and rhinos, gorillas and parrots. Ben and Ella are talking about how Xenia loved this zoo, and Ella, now 5, suddenly realizes that she isn’t sure what her mother’s favorite animal was. “I think I don’t know,” she says, her brow furrowed behind her violet-rimmed glasses, but she offers up her own favorite instead: “Flamingo!” she shouts.
They used to come here often as a family of three. These days, Ella usually visits with just her dad, or sometimes with friends she’s made at a therapy group for children who have lost a parent. On this idyllic October afternoon, the children’s area of the zoo is closed for renovation; when it reopens, it will include a brick engraved with Xenia’s name.
Ben took many photos of Xenia in this place, some of which are tucked into albums that Ella loves to look through. Later in the evening, after Ben and Ella return home from their outing, Ella sits cross-legged on the living room couch, studying an image of her mother outside the flamingo enclosure at the zoo. Xenia’s pose imitates the birds, one leg bent at the knee. “She has a pink shirt!” Ella says.
She pulls another album into her lap. “This is my favorite picture,” she says, pointing to a photo of herself at 5 months old, lying in bed beside her mother. Xenia is sleeping, a sheet drawn to her chin, but Ella is wide-awake, flashing a mischievous smile at the camera.
This particular album, capturing their first moments as a family, was Ben and Ella’s last gift to Xenia. Ella turns the pages past pictures of her birth, her ecstatic parents cradling their swaddled newborn. She resembles both her mother and father, but in photos with Xenia, the likeness is unmistakable: Ella has Xenia’s light brown hair and bespectacled dark eyes, the same wide grin and expressive eyebrows.
Their similarities run deeper, surfacing in new ways in the months since Ella started kindergarten at a Spanish immersion school, where she is learning to speak fluently in the native language of Xenia’s Mexican American family. The child’s exuberant sense of humor, her kindness, her boundless enthusiasm for Halloween, her deep sensitivity to music — to Ben, all of this feels like glimmers of Xenia.
Ella is growing up in the city where her mother was raised, where Ben now feels he has to stay. “Everyone is here,” he says. Everyone includes his parents — who own the condo he shares with Ella, and are his neighbors down the hall — and his sister’s family, and Xenia’s family, too. He can’t imagine taking his daughter away from here, even though it is a difficult place to find work in television production. When he and Xenia decided to have a child, their closeness to their families was at the forefront of their minds, he says. “We knew: This child will be surrounded by love.”
Outside Ben and Ella’s living room windows, the sun drops over San Diego Bay. When Ella reaches the end of the album, Ben scrolls through older photographs on his laptop. There is a portrait of Ben and Xenia’s wedding party, pictures of Ella trick-or-treating in a tiny bat costume, splashing in a backyard baby pool, sitting on her mother’s lap at Legoland.
Ben pauses on a photograph of Xenia framed by an array of vivid bouquets. “This was right after she was diagnosed,” he says. “Those are flowers that people sent.”
“What is ‘diagnosed’?” Ella asks.
“After we found out Mommy was sick, people sent flowers to say they were sorry about that,” Ben explains.
Ella nods and falls quiet. Then she smiles. “I wish I was a flower girl at your wedding,” she says.
There are questions that hover over the years ahead: What might Ella’s life be like when she is older — when she understands more about how she came into this world and what happened to her mother? How might she relate to Xenia’s memory? Every experience of grief is unique, its reverberations often impossible to predict. But the Kim family, who were patients of David Ryley 14 years ago, offers one glimpse of how a profound decision made in staggering circumstances can look more than a decade later.
Stacey Nichols met John Kim at a mutual friend’s party in Boston in spring 2003. He was an outgoing and deeply empathetic man with a “boundless wellspring of patience,” Stacey says — qualities that served him well as a school counselor who worked with kids with special needs. He moved in with Stacey three months after their first date; they got engaged that Thanksgiving.
Before their wedding in August 2004, John began suffering from sporadic gastrointestinal issues, and his doctor ordered diagnostic tests. The results were concerning, and further scans showed lesions on his liver. Three weeks after they were married, an oncologist told them that John had Stage 4 pancreatic cancer. “It felt like a complete emptying of my soul,” Stacey says of that moment. “All I could do was just be there, trying to make myself understand: ‘I’m here. I’m actually me. I’m not going to wake up from this.’ ”
Even as they were reeling, John wanted to know how his chemotherapy might affect their chances of having a child. The doctors didn’t have an answer. “There hadn’t been research on how this particular regimen affected fertility,” Stacey says. “The gist of what his oncologist said was, you know, patients who do these treatments for pancreatic cancer aren’t having kids; they die.” But John had always wanted to be a father, and they had to decide quickly whether they wanted to preserve that possibility. They postponed John’s treatment for one week so he could visit a sperm bank.
Eight months later, with John responding well to chemotherapy, the couple set out on a walk together and talked about starting their family. For the first time since their wedding day, Stacey felt a rush of pure joy and anticipation. “We didn’t know what was going to happen, but it felt almost defiant, somehow,” she says. “We felt like, this is a long-term plan. It is a decision only the two of us can make.”
They found out Stacey was pregnant with twins, a boy and a girl, in October 2005. When the babies were born the following June, John wrote their full names in the pages of a journal — Madeleine Ji Yun Kim and Riley Chen Woong Kim arrive!!! — alongside delicate drawings of fireworks. The exhilarating haze that followed lasted six months, Stacey says, before John’s cancer resumed its assault. The twins thrived as their father began to fade.
The exact chronology of John’s last days (what he ate, what time he took his medications — details Stacey could once recite with precision) are lost to her now. She remembers clearly, though, how she left the door to their bedroom open as John rested there in his final hours, so the sounds of his family living their day — the babies playing and giggling, splashing in their bath — could still reach him.
After John died in April 2007, Stacey made a point to speak of him often; she wanted her children to know that the subject of their father should never feel taboo. “They do love it if I bring him up; they love when I tell stories about him,” Stacey says. “I make sure to continue to remind them that it’s okay to grieve his loss for their whole lives, in whatever way they need to.”
Ten years ago, Stacey and her children moved to Portland, Ore., to be closer to her parents. Stacey is now 47, the director of marketing and communications at Lewis & Clark College, her alma mater; Maddie and Riley are 13, on the cusp of their high school years. Lately, Stacey says, they have started asking more questions about John, about what he was like, the similarities they share with him. As they’ve grown, they’ve become more aware of their biracial identity, their connection to John’s Korean heritage. They have lived all but 10 months of their lives without their father, and so their grief is not the loss of a known reality, but the absence of a possibility: Would John, who used to read Julia Child’s recipes aloud to Maddie, have celebrated his daughter’s love of cooking? What would it have been like for Riley to share his passion for video games with his dad, who was also an avid gamer? “I like to play chess, and I run cross country,” Riley says. “Those are things I think he would have been into.” He smiles. “You know, he was into nerd boy things, and I’m like that, too.”
Maddie thinks it must have been difficult for her dad to decide to become a parent, knowing he would miss out on so much of their lives. “But I’m so glad he did it. I think Mom would have been lonely. I mean, David is great,” she says, referring to Stacey’s boyfriend of several months, with whom the twins share an easy rapport. “But I still think she would have been lonely without us. And I feel like Dad’s entire side of the family would have missed him a lot more. They tell us all the time, ‘Oh, you really remind us of your dad, and that’s a really good thing.’ ”
The twins are especially close, often ending their days by taking walks together around the block to decompress and tell each other what’s on their minds. (“Some people say their brothers are annoying, but I really love my brother,” Maddie says.) Even without their father, Maddie says their family has always felt like enough. She wishes her dad could somehow know this. “I would like him to have that reassurance,” she says. “To be able to know that everything is okay, and that we are happy.”
John is the beginning of their story, and his family has since lived their way into a chapter he would not recognize, here in their lovely house on a tree-lined street in North Portland. His ashes rest on a shelf in the living room, a colorful gathering space strewn with books and musical instruments, often filled with the voices of visiting friends and family.
Even 12 years on, in this place he never knew, John’s absence sometimes echoes with startling immediacy: Stacey realizes with a jolt that she forgot to put on her wedding ring, and it takes a moment to remember that she hasn’t worn it in years; Maddie laughs, and her expression is suddenly her father’s; Riley holds Stacey’s hand and instinctively traces his fingertips across her cuticles, exactly the way John once did. They are here, and John is where John is, and there are moments when it still feels like the door between is open.
Ben has never forgotten something his mother once told him, soon before Xenia died: that for Ella, losing her mom would be the defining fact of her life. He thinks about this, in moments when he feels his aloneness most acutely — at play dates with other families, where he is often the only single dad, or when Ella asks for a French braid and he realizes he doesn’t know how to style her hair that way. “We just have to do the best we can for her,” he says.
When Ella decides to be a jellyfish for Halloween, Ben strings white lights from a clear umbrella and transforms his giddy kindergartner into a glowing sea creature. The two sing together, loudly and often, especially in the car. If there is somewhere Ella wants to go, something she wants to see, he takes her. This is Ben, but it is also Xenia, he says. Her way of being has become his.
And so, he feels, there is a sense of Xenia that is still palpable to Ella, even as her own recollections begin to fade. “Xenia would often say, ‘Will Ella remember me, or won’t she remember me? And which is better?’ ” Ben says. “And sometimes Ella will turn to me now and look worried, and she’ll say something like, ‘I think I don’t remember Mommy.’ ”
Ben does all he can to preserve the connection between Ella and her mother. On the first night that Ben and Ella lived alone together, the day they moved into their condo overlooking the bay, he tucked his daughter into bed in a new room and began a new ritual: Before Ella went to sleep, they talked for a little while about Xenia. At first, it was almost ceremonial; in the year that has since passed, it has become less of a nightly practice and more of an ongoing conversation, a constant referencing of things that Xenia once said or did or loved. Once or twice a week, Ella asks Ben to retrieve an old video camera loaded with dozens of hours of family footage, so they can watch it together.
Tonight, Ben is the one to suggest this, after Ella finishes her bath and changes into her pink nightgown. “Do you want to watch a couple of movies?” he asks, and Ella immediately shouts “Yes!” and dashes to her bedroom. Ben lies down on her twin bed and turns the video camera on, pointing the built-in projector toward the ceiling. “Hey, Ella, this is your first birthday party,” he says, and she grins and climbs in the bed beside him.
Ella will not remember her first birthday party. But someday she might remember watching the video of her first birthday party, and listening to her father tell her what the celebration was like. She might remember the way her mother looks in the film from that day, her slender frame draped in a striped top as she kneels and fills a large giraffe piñata with fistfuls of candy.
“Hi, Mommy,” Ella says, wiggling so her head rests on her father’s stomach. She watches as her family gathers around a picnic table where she and her parents sit before a cake, and Xenia gently rubs her baby’s back as everyone starts to sing “Happy Birthday.”
The scene unfolds, and the minutes tick past Ella’s bedtime. “Just one more, okay?” Ben says, and fast-forwards to a video taken when Ella was 3, at her first swimming lesson. When Xenia appears beside the pool, the progression of her illness is painfully evident — her hair unevenly shorn, her cheeks swollen from steroids.
“She looks very, very …” Ella trails off. She seems unsettled and climbs off the bed, crawling on the floor.
“Very what?” Ben asks her.
“Very, very …” but Ella can’t or won’t summon the next word.
In the film, Ben is talking to Xenia: “Impressive, right?” he says of their daughter’s enthusiasm in the pool, and Xenia nods and smiles.
In the bedroom, Ben is talking to Ella: “Mommy is gonna say something now,” he says. “Are you watching?”
“I’m watching,” Ella says as the camera closes in on Xenia’s face.
“We are very proud,” Xenia says, enunciating slowly.
They are together like this for a little while: Ella on the floor, gazing upward. Her father in the bed. Her mother in flickering beams of light. Then Ben says gently, “Okay, baby, it’s time for bed,” and turns off the projector. The past dissolves into shadows as Ella crawls back into the blankets, and the two of them lie there, side by side.
Use these titles to help you better explain difficult topics such as death, illness, and grief to your child.
By Christie Burnett
This is the book list parents hope they will never need, but it’s an important one nonetheless. These books are valuable resources for talking to children about love, illness, death, and the stages of grief — all of which are abstract concepts that can be difficult for children, especially young ones, to grasp.
The seven titles on this list can also offer support and comfort to children experiencing the overwhelming emotions of losing someone in their own life.
1. In his signature simple style, Todd Parr explores the range of emotions and responses when we experience loss in The Goodbye Book. Parr guides young readers through the feelings most commonly felt when struggling with a goodbye, with the reassurance that with time things will get better, and a reminder that they are always loved.
2. Wherever You Are My Love Will Find You by Nancy Tillman is a beautiful, heartfelt exploration of the unconditional love that a parent has for a child, even when they cannot be together. While death is not explicitly mentioned, this book is a lovely resource for offering reassurance to children who have experienced the loss of a parent.
3. I’ll Always Love You by Hans Wilhelm explores the love between humans and their pets through the story shared by a young narrator about his dog, Elfie, and their life together. The book shows the boy caring for Elfie as she ages and his family’s grief when she dies of old age. The boy is sad that Elfie is gone but consoles himself that his dog always knew how much she was loved.
4. The Invisible String by Patrice Karst is a comforting story about two siblings who learn that everyone has an invisible string connecting them to everyone they love — anywhere, anytime — through separation, anger, and even death. “Even though you can’t see it with your eyes, you can feel it deep in your heart, and know that you are always connected to the ones you love.”
5. Nana Upstairs & Nana Downstairs by Tomie dePaola shares a tender story of love and care for an elderly relative through the eyes of a young boy named Tommy. We see Tommy helping his grandmother care for his 94-year-old great-grandmother, and the close bond he shares with both women. When his great-grandmother (and later his grandmother) dies, the story shows Tommy’s reactions to the deaths of these beloved family members.
6. Ida, Always by Caron Levis shares the beautiful story of two city zoo polar bears, Gus and Ida, and their feelings when Ida becomes sick with an illness that cannot be healed and later dies. It beautifully explores the turbulent range of emotions felt when a loved one becomes terminally ill, with a focus on making the most of the time we have left with sick loved ones. This is one of the most poignant books about love and loss I have read.
7. I Miss You: A First Look at Death by Pat Thomas explains what we know about death and grief in a simple, factual manner. It outlines reasons why people die, introduces what a funeral is, and explores the difficult feelings and emotions of saying goodbye and missing someone very much.
I am such a huge fan of using books to open or continue discussion with kids about difficult topics. Given how overwhelming and confusing the experience of death can be for a child, each of these thoughtfully composed books deserves a place on our home bookshelves.
BONUS: Longfellow And The Deep Hidden Woods. Longfellow, the bravest and noblest wiener dog in the world.
As our story begins, Longfellow is a puppy learning how to be a good friend to his human companions, old Henry and Henry’s nurse Miss O’weeza Tuffy. By the end, Longfellow has grown old himself, but he is still ready for one final adventure.
What happens in between is an unforgettable and heartwarming tale that throws a tender light on the difficult truths of loss and longing as well as on our greatest hopes.
Experts say confronting grief and being honest about loss is best for children
Between the rough and tumble of early life, we soon find that children are more resilient than we think. Yet when it comes to a hurdle as big as death, our instincts might just be to carry them away from it all and to shield them from the enormity of the loss.
Years ago, this was very much the norm if a young child experienced the death of a loved one. No doubt people’s hearts were very much in the right place, and these actions come from a protective and loving instinct.
Yet experts believe that confronting the situation head on with the unadorned truth is a better start on a child’s grief journey.
Theresa Kavanagh is a support worker at the Limerick-based Children’s Grief Centre, who provide a listening service to children and young adults experiencing the death of a loved one, parental separation or other form of grief.
“It’s quite amazing how parents feel they’re protecting their child when they don’t allow them to participate in rituals like wakes or funerals, but a child has the right to say goodbye to the person they love,” she notes. “Children need, want and deserve the truth. Children are so perceptive. It’s amazing how much they know and how strong they can be,” she says. “I’ve heard of children being told that ‘Mammy is asleep’, while another little girl was told that her granny went on holidays and never came back. The problem is that younger children go into magical thinking and make things up. If they’re sent away in the event of a death, or not talked to properly, they will always blame themselves, even if the death is from something like cancer.
“I remember one young boy’s mother died of an accidental drug overdose, and he said, ‘I thought it happened because I was bold’. That’s why it’s so important to have open conversations, and also to validate how they themselves feel.”
Often, this can be easier said than done for adults who are also forging their own journey of grief and coping with loss. Often, it can be the first time that a parent or guardian finds themselves in that situation, so it’s entirely natural that uncertainty would reign.
“If a parent can express how they feel, it’s important to say ‘it’s sad, but I’m a grown up and I can look after myself’,” notes Kavanagh. “It’s interesting, a lot of parents haven’t dealt with their grief before they come to the centre, and it’s only when they’re here that they realise that. Parents and children seeking help at the same time can really help the healing process.”
Ann D’Arcy is a Senior Social Worker and Bereavement Coordinator at Our Lady’s Hospice and Care Services, Dublin, who has been offering workshops for bereaved children and their guardians for 14 years.
She notes that the grief journey for children is very different to that of adults.
“A child can’t sustain the depths of emotional pain for the same lengths of time,” she explains. “One minute they are talking about death, the next they’re back on their bikes or PlayStation as if nothing happened. But that doesn’t mean they’re not grieving.
“A very little child may listen to this and run off, and a parent might think they either didn’t take it all in, or the conversation is done, but with a young child developmentally, they’ll find it difficult to understand permanency,” explains D’Arcy. “They’ll often keep coming back to ask the same questions over and over again, trying to make sense of it. It’s important to remember you didn’t do it wrong in the first place. They will just need to talk about it over and over again to understand. It’s important to give a child the space, and permission, to grieve however they might like.
“We need to remember that grieving is normal, and most children are going to feel sad, angry and lonely. You might find that many children will express that physically — they’ll be more tired or experience tummy pains or headaches. Some regress to a younger age,” notes D’Arcy.
“The other thing that often happens is that they are terrified of losing their surviving family member. Most of the children I meet will want to ‘protect’ their surviving family members, and often won’t tell them how they really feel for that reason.”
Death really is the ultimate wrong-footer, and for that reason, grieving children often need to be grounded with certainties.
“Children need information on what happened around the death, but also reassurance that their meals will be given to them, school will still be there, and people will still love them,” says D’Arcy.
Offering children some sense of control over the situation offers them a valuable coping skill: “For one child, talking and looking at old photos is really important, for another, it’s too much and they don’t want to have that reminder in every room. It’s about negotiating that,” says D’Arcy. “Give the child a choice on whether they would like to view the body, and how they would like the loss to be acknowledged. Do they want something said in class for instance, or would they rather it wasn’t mentioned? Will they want to participate in Father’s Day?”
When discussing death or loss with children of all ages, the expert advice to do away with euphemisms and explain the situation in clear language.
“It’s always about giving very factual information to a child, and that’s why we recommend using words like ‘dead’ or ‘death’ and to explain what they mean,” observes D’Arcy. “It’s a very abstract concept for a child. Explain to them that when a person dies, they no longer feel anything. They’re no longer thirsty, cold, hungry, in pain, sad. It may look like a person is asleep, but the body stops working and the heart stops working.
“Be very, very concrete. Coming from a faith perspective, some people will believe the soul or spirit has gone to heaven, but just remember that young children will see that as a concrete place, and will probably ask when they can visit, or why the person won’t come back.
“If a child is seeing their loved one’s body, explain beforehand that their body might feel cold, and look a little different than usual,” adds D’Arcy.
Conversations for very young children need to be similarly concrete, though it may take them more time to assimilate the enormity of the situation. “If a child is asking the questions, it’s important to give the honest answer, really,” surmises D’Arcy. “It’s better to have had that conversation from someone they love, rather than hearing it in the school playground.”
When a hospice counselor is called to the bedside of a child who has just died, he leads the parents through a Buddhist ritual for cleaning the body. In the process, he guides them through the fires of grief, which burn away everything but love.
One day, in the middle of writing a foundation grant report, I got a call from a man I didn’t know. He explained that he was the father of a 7-year-old boy who had been very ill with cancer. Some people had told him that I might be able to help him out.
I said certainly, I would be willing to help the family through their grieving process. I made some suggestions about how I might be able to support when the time was right.
The man paused. It was clear that I didn’t understand yet what was happening. He practically whispered, “No, Jamie died a half hour ago. We’d like to keep our boy at home in his bed for a little while. Can you come over now?”
Suddenly, the situation wasn’t hypothetical; it was real and staring me in the face. I had never done anything like this before. Sure, I had sat at the bedsides of people who were dying, but I had not attended the death of a young child with two grieving parents in unimaginable pain. I honestly had no idea what to do, so I let my fear and confusion arise. How could I possibly know in advance what was needed?
I arrived at the house a short while later, where the dispirited parents greeted me. They showed me to the boy’s room. Walking in, I followed my natural inclination: I went over to Jamie’s bed, leaned down, and kissed him on the forehead to say hello. The parents broke into tears, because while they had cared for him with great love and attention, nobody had touched the boy since he had died. It wasn’t their fear of his corpse that kept them away; it was their fear of the grief that touching him might unleash.
I suggested that the parents begin washing the boy’s body— something we often did at Zen Hospice Project. Bathing the dead is an ancient ritual that crosses cultures and religions. Humans have been doing it for millennia. It demonstrates our respect for those who have passed, and it is an act that helps loved ones come to terms with the reality of their loss. I felt my role in this ritual was simple: to act with minimal interference and to bear witness.
The parents gathered sage, rosemary, lavender, and sweet rose petals from their garden. They moved very slowly as they put the herbs in warm water, then collected towels and washcloths. After a few moments of silence, the mother and father began to wash their little boy. They started at the back of Jamie’s head and then moved down his back. Sometimes they would stop and tell one another a story about their son. At other times, it all became too much for the father. He would go stare out the window to gather himself. The grief filling the room felt enormous, like an entire ocean crashing upon a single shore.
The mother examined and lovingly cared for each little scratch or bruise on her son’s body. When she got to Jamie’s toes, she counted them, as she had done on the day he was born. It was both gut-wrenching and extraordinarily beautiful to watch.
From time to time, she would look over at me as I sat quietly in the corner of the room, a beseeching question filling her eyes: “Will I be able to survive? Can I do this? Can any mother live through such loss?” I would nod in encouragement for her to continue at her own pace and hand her another washcloth, trusting the process. I felt confident that she would find healing by allowing herself to be in the midst of her suffering.
It took hours for the parents to wash their son. When the mother finally got to the face of her child, which she had saved for last, she embraced him with incredible tenderness, her eyes pure reflections of her love and sorrow. She had not only turned toward her suffering; she had entered into it completely. As she did, the fierce fire of her love began to melt the contraction of fear around her heart. It was such an intimate moment. There was no separation between mother and child. Perhaps it was like his birth, when they had the experience of being psychologically one.
After the bathing ritual was complete, the parents dressed Jamie in his favorite Mickey Mouse pajamas. His brothers and sister came into the room, making a mobile out of the model planes and other flying objects he had collected, and they hung it over his bed.
Each one of them had faced unbelievable pain. There was no more pretense or denial. They had been able to find some healing in each other’s care and perhaps in opening to the essential truth that death is an integral, natural part of life.
Can you imagine yourself living through what these parents did? “No,” many of you will say, “I cannot.” Losing a child is most people’s worst nightmare. I couldn’t endure it. I couldn’t bear it, you may think. But the hard truth is, terrible things happen in life that we can’t control, and somehow we do bear them. We bear witness to them. When we do so with the fullness of our bodies, minds, and hearts, often a loving action emerges.
And sometimes they act with enormous compassion toward others who have suffered similarly or who may yet in times to come.
One of the most stunning images of this that I can recall came after the major earthquake and tsunami disabled the Fukushima nuclear power plant in Japan. A photo in the newspaper revealed a dozen elderly Japanese men gathered humbly, lunch baskets in hand, standing in a line outside the plant’s gates. The reporter explained that they were offering to take the place of younger workers inside who were attempting to contain the radiation-contaminated plant. In total, more than five hundred seniors volunteered.
One of the group’s organizers said, “My generation, the old generation, promoted the nuclear plants. If we don’t take responsibility, who will? When we were younger, we never thought of death. But death becomes familiar as we get older. We have a feeling that death is waiting for us. This doesn’t mean I want to die. But we become less afraid of death as we get older.”
Suffering is our common ground. Trying to evade suffering by pretending that things are solid and permanent may give us a temporary sense of control. But this is a painful illusion, because life’s conditions are fleeting and impermanent.
We can make a different choice. We can interrupt our habits of resistance that harden us and leave us resentful and afraid. We can soften around our aversion.
We can see the way things actually are and act accordingly, with wise discernment and love.
The Thai meditation master Ajahn Chah once motioned to a glass at his side. “Do you see this glass?” he asked. “I love this glass. It holds the water admirably. When the sun shines on it, it reflects the light beautifully. When I tap it, it has a lovely ring. Yet for me, this glass is already broken. When the wind knocks it over or my elbow knocks it off the shelf and it falls to the ground and shatters, I say, ‘Of course.’ But when I understand that this glass is already broken, every minute with it is precious.”
After being with Jamie’s parents as they bathed their son, I returned home, and I held my own child very close. Gabe was also 7 years old at the time. I saw clearly how precious he is to me, what a joy he is to have in my life. While I felt devastated by what I had witnessed, I also was able to appreciate the beauty in it.
When I ask Matthew Cullen to share one of his favorite experiences volunteering at the Joan Nicole Prince Home, his answer surprises me.
“Giving my first bed bath,” he says.
When you give a bed bath, “you use a wash cloth to wash a patient’s body,” Cullen explains, adding, “The residents are really grateful for it. One resident told me, ‘Thank you for that. I feel much better.’
This is the third summer that Cullen, a senior at Union College, has spent caring for dying residents at the Joan Nicole Prince Home in Scotia.
His shifts are a mix of mundane tasks aimed at making residents more comfortable and keeping them company. Sometimes that involves chatting at the kitchen table. Sometimes it involves sitting quietly while they rest or sleep.
“A lot of time I’m the only person here,” says Cullen, a native of Guilderland.
Helping terminally ill patients live their final days in peace and comfort might sound like a lot of responsibility for a 21-year-old college student.
But Cullen is more than up to the challenge. The ebullient red-head speaks of his work at the Joan Nicole Prince Home with insight, compassion, even wisdom.
“It can be sad sometimes, but the great majority of the time, it’s happy,” Cullen says. “The patients are sharing their memories and stories with you, and you’re doing the same.
Cullen isn’t the only college student who spends his summers volunteering at the Joan Nicole Prince Home.
He’s enrolled in a unique summer program, called CARE (Community Action Research and Education), that sends college students to volunteer in residential homes for the dying, which provide free, round-the-clock bedside care to terminally ill patients whose families are unable to care for them.
CARE got its start at Union College five years ago, and has steadily evolved since then.
It is now offered in partnership with Skidmore College, and open to students from a handful of other schools, such as Siena College.
This summer there are 13 students volunteering at four different residential homes for the dying: the Joan Nicole Prince Home, Gateway House of Peace in Ballston Spa, Mary’s Haven in Saratoga Springs and Hospeace House in Naples.
“These students are seeing the dying process as it happens,” Carol Weisse, the Union College professor who founded CARE, told me.
But it isn’t all gloom and doom.
Far from it.
“There’s joy in these homes,” Weisse said. “For the students to see that, it makes death less frightening.”
Residential homes for the dying — also known as comfort care homes — serve a noble purpose.
The staff and volunteers at these facilities become a kind of surrogate family for residents, doing “everything a family member would do,” said Weisse, who directs Union’s Pre-Health Professions Program and is herself a longtime hospice volunteer.
Everyone deserves good end-of-life care, and residential homes for the dying ensure that people with little in the way of resources can get it. If anything, we need more of these homes — and more volunteers to keep them running.
CARE was initially geared toward students planning careers in health care.
The idea, Weisse told me, was to give undergraduates who might one day treat dying patients a better sense of how to communicate with and care for those with no hope for recovery. These days, CARE is open to any student with an interest in end-of-life care and a willingness to commit to the research project.
The Joan Nicole Prince Home is bright and cheery, with a back porch, meditation garden, living room and kitchen where executive director Amanda Neveu is baking cookies during my visit with Cullen. The home can accommodate two patients at a time, and each have their own bedroom and bathroom.
Neveu told me that residents — neither of whom are able to speak to me — enjoy speaking with younger people.
“It’s a legacy thing,” she said. “They want to share their stories and have them live on.”
Cullen is planning to go to medical school, as is Nurupa Ramkissoon, a 19-year-old Union College junior and Schenectady High School graduate who has spent her summer volunteering at the Joan Nicole Prince Home through the CARE program.
“It’s definitely been a little sad,” Ramkisson said. “The people who come here are very sweet, and you spend so much time with them. … There’s one resident who likes teaching, and she’s teaching us how to cook. It’s making her feel comfortable, like it’s her home.”
Weisse said her goal is to “cultivate a community of compassionate caregivers,” which sounds like a good goal to me.
At some point, every one of us is going to need a compassionate caregiver, and training students to step into this role could have lasting benefits.
Weisse believes she has created a program that could be implemented at residential homes for the dying all over the country.
“My hope and my dream is that this can spread,” she said.