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A young mother, a cancer diagnosis, and a year of grieving her loss

By Rachel Hutton, Star Tribune (Minneapolis) on

Published in Parenting News

MINNEAPOLIS - A year ago last August, Emily Hofher stretched out on the grass of Oak Hill Cemetery in south Minneapolis and struck a sassy pose, propped on an elbow, long legs crossed. She wore a blue dress printed with sailboats, and a jaunty white cap covering where she'd once had hair. Her husband, Rob Raub, snapped a photo.

Emily had just picked out the spot where she would soon be interred, when cancer took her life. And she smiled, big and wide, even though she was far from ready to go, being the 44-year-old, newly married mother of a toddler.

Emily's irreverent sense of humor showed up early in her relationship with Rob - specifically, their third date, when he invited her to his work holiday party. Not wanting to tell Rob's boss how they'd actually met (via a dating app), Emily spun a tale involving a water aerobics class full of elderly folks and pool noodles.

Emily was quite the storyteller. Some of her wackiest ones were made up. But a lot were true. She'd worked on a cruise ship, as a diving instructor. She'd taught English in Turkey, Thailand and Taiwan. And, by the way, she told Rob, on that memorable third date: She was in the process of adopting a child, who could arrive at any time.

Emily eschewed well-trod paths to seek what was right for her, in both how she lived and planned her death. Yet it was the little things about her, perhaps more than the big ones, that most influenced those around her.

"More important than the facts of her life was how she lived and moved through the world, with a unique and inspiring sparkle," was how her obituary, published last October, put it.

The narrative of Emily's time on this planet isn't particularly linear or long. But her life and death dramatically affected the lives of her husband and young daughter who coped with her illness, grieved her loss, and, a year later, carry on her legacy.

It's not the life they would have expected, nor the happily ever after of storybook tales. But it's a testament to human resilience and capacity for complexity, a life rich with meaning and depth.

PARTNERSHIP AND PARENTHOOD

Before he met Emily, in late 2013, Rob Raub led a fairly regimented life. He worked as a software project manager at 3M and trained for marathons and triathlons like it was a part-time job. His social circle was mostly other endurance athletes who obsessed about shaving seconds off their race times and curtailed late nights out to be fresh for 5 a.m. workouts.

When it came to finding a partner, Rob wanted to meet someone outside of that world, who might broaden his perspective. And make him laugh.

Which is why he swiped right on a photo of a woman at the beach, hair blowing in the wind, with a nice smile, whose profile headline described her as "Bright-eyed and bushy-tailed, but not a squirrel."

Emily was a middle-school librarian, full of all sorts of knowledge. "It was really fun talking to her because she knew a little bit about a lot of stuff," Rob recalled. Emily was an avid reader, with interesting friends, and a curious, spirited approach to life. Rob felt comfortable with her right away.

But more than a year after he and Emily began dating, Rob still wasn't sure he was cut out for parenthood. Not wanting to impede Emily's plans for adoption, he initiated a breakup. "I told her, 'I don't think I want to be a dad,'?" Rob said. "'You deserve someone who is committed to it, who really wants that role.'?"

A month later, in November 2015, Ruby was born. Emily flew to Texas, alone, to get her. After Emily returned to Minnesota with Ruby, she told Rob that she thought he should meet the baby.

The moment Rob cradled Ruby in his arms, something inside him shifted. He felt an instant connection. "I thought, This baby is mine. I'm here in this world to care for Ruby and I'm going to be a part of this kid's life no matter what," Rob recalled. "Right then and there, whatever fears and whatnot that I had were out the window."

A LIFE-CHANGING DIAGNOSIS

Emily and Rob got back together. For nearly two years, they shuttled back and forth between their separate houses, Emily's near Powderhorn Park in Minneapolis and Rob's in St. Paul. Emily served as Ruby's primary caregiver, but Rob yearned to make their life-in-limbo more settled. In October 2017, he proposed. A few months later, Rob moved in with Emily and Ruby.

Shortly after Ruby had come into Rob's life, he'd decided to stop drinking. He had developed a nagging fear that something might happen to Ruby in the middle of the night, and he wanted to be sure he always had his wits about him.

But it was Emily who ended up in the emergency room late one evening in April 2018. She had been feeling fatigued for several months, experiencing migraines and night sweats. She went to the hospital thinking she had appendicitis. Instead, she was diagnosed with a rare, fast-growing neuroendocrine cancer. The doctors suggested she might only live a few years.

So Rob and Emily got married in a simple backyard ceremony. It was May Day, Emily's favorite day of the year, because she loved Powderhorn Park's famous parade, and used to work on the costumes when she was a kid growing up in the neighborhood.

A CRASH COURSE IN CAREGIVING

Emily treated her tumors with chemotherapy and, later, immunotherapy. While the physical toll of living with cancer was immensely difficult, so was managing its impact on her relationships.

Among the most challenging aspects of interacting with others, Emily said in an interview a few weeks before her death, was dealing with suggestions that she quash her cancer with everything from qigong to mushroom tea.

It was also hard to be inundated with positive-attitude platitudes - "Everything happens for a reason" or "God doesn't dish out anything you can't handle" - that didn't align with her beliefs.

Or to be viewed as a warrior combating cancer. "The fight metaphor - you're fighting cancer, you're going to beat cancer, you're going to kick cancer's ass - doesn't resonate with me, either," she said.

After Emily's diagnosis, Rob became the primary caregiver to both his wife and daughter. He also largely managed the couple's relationships with family and friends, updating various groups on Emily's condition, which he found especially frustrating when people pestered him for details. ("What more do you need to know than, 'She's really, really sick'? There's really nothing more to update because she's been sleeping 16 hours.")

 

Emily's illness also, understandably, put a strain on the couple's relationship, Rob said, when Emily's rosier outlook on her prognosis conflicted with the more conservative data he found in medical journals.

There were also times when Rob felt upset that Emily chose to spend their limited family time with her friends instead. Rob acknowledges that he couldn't begin to understand what Emily was feeling as she faced her impending death. He sensed she might be pulling away from him and Ruby because those relationships were most dear. "It was probably incredibly painful to spend time with Ruby knowing what was going to happen," he said.

Leaving Ruby, Emily admitted, a few weeks before she passed, was the thing she feared most about dying. Then 3 years old, Ruby had asked her, "Are you melting?" presumably influenced by the Wicked Witch's demise in "The Wizard of Oz." So Emily told Ruby the hard truth: She wasn't going to live much longer.

Though time was short, Emily enjoyed many of the milestones she hoped to reach: a large, formal wedding to Rob at Lakewood Cemetery's chapel; a party thrown in honor of their home's centennial; an overnight at a Stillwater B&B; a sailing trip on Lake Superior.

AT THE END

In June 2019, Emily's oncologist predicted she would live no more than a few months. Emily began her funeral preparations in earnest. She tracked down green burial options - a laborious and confusing process, even for a skilled researcher. She looked into sea grass caskets and enlisted the services of a death educator/celebrant.

Emily turned to her longtime friend Jessica Bender, who had worked as a funeral director, for information and advice. Jessica told Emily about a wide range of possibilities, including having her cremains interred in an undersea cemetery, which would give Ruby a reason to learn to scuba dive.

In the end, Emily decided to forgo embalming and have her body kept on ice for a home vigil before being placed in the ground to decay.

"She wanted a place where people could come and sit and talk to her," Jessica said. "She said if we wanted to have a picnic, and bring martinis and sit on her grave and have a martini picnic with Emily, we could do that."

In a notebook, Emily detailed wishes for her service. She would wear a black dress. Guests would sing along to Hank Williams' "I Saw the Light." They'd eat food from Taste of Scandinavia. In lieu of sympathy cards, they'd write letters to be read by Ruby when she is older, sharing a memory of her mother.

That fall, in her final days, Emily decided to forgo treatment and enter hospice. While Rob felt relieved that Emily could now access more pain medications, he found the responsibility to administer them stressful. Even with the guidance of on-call hospice nurses, Rob felt like he was flying blind.

The day before she died, Emily couldn't move her body, but she could still hear and respond to others. So Rob gathered a group around Emily's bed, and had everyone sing "Happy Birthday" to Ruby, even though the special day was a few weeks off. Emily's face perked up.

After that, Emily lay peacefully as loved ones took turns at her bedside until she drew her final breath. Then Emily's wishes for her death unfolded as planned. Hundreds of family and friends attended her funeral.

When Emily's body was lowered into the ground, a small group tossed flowers and dirt into the grave. Ruby did so with special vigor, adding a bit of levity to the gaping hole of her mother's loss.

A YEAR OF GRIEF

Even though Emily had all her affairs in order, Rob spent hundreds of hours completing paperwork over the next several months. In the midst of grieving Emily, parenting Ruby and juggling a stressful role at work, he muddled through the mundanities of bank and insurance bureaucracies.

"The depths of darkness that I went to in January, February and March were so profound," Rob said. "I was so miserable, and I felt like it was affecting my level of patience with Ruby. And this girl needs nothing but a father who's connecting and adoring of her."

On top of it all, a fraught project at work blew up. Then Rob contracted a bad case of shingles.

Starting a medication for depression and anxiety helped. And, in a way, so did the pandemic, when work moved home and life slowed down a bit. Rob realized that there was only so much one person could handle - trying to be a good spouse, good parent, good employee - even under the best of circumstances.

The confluence of so many hardships helped crystallize what was truly important, Rob said. "I feel like things just roll off my back a little bit more easily than they otherwise would have. Because having gone through this experience and being better grounded, I know that the first and foremost relationship for me is Ruby and what I need to do to take care of her."

Before meeting Emily, Rob admits he was more the type to check the stock market than engage in social justice work. But as the white father of a Black girl, issues of race and equity have come to the forefront.

Wanting to ensure a strong community for Ruby, Emily had asked the leader of her transracial adoption group to speak at her funeral, imploring guests to support Ruby while being vigilant about white privilege and institutional racism. "We're calling on friends and family to help, but from a lens that Ruby needs more than love," Emily said of her wishes.

Rob and Ruby continue to keep Emily's memory alive in their daily interactions. "I don't know that there's ever a day that we don't talk about her, or bring her up in just a fun or casual way," Rob said. "If I ask Ruby, 'Who's our family?' she says, 'Mama, Papa and Ruby, but Mama's dead.' Very matter of fact."

When Emily bought her Oak Hill plot, Rob balked at doing so for himself. He wasn't ready to confront his own mortality. Or think about where he might want to be laid to rest. His own death could be decades off, and who knew the course his life might take.

After Emily died, Rob regretted the decision. So he bought two more plots, right next to Emily's.

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