Mothering Without Limits
Mothering Without Limits
Lindsey Hubley had just four blissful days with her newborn baby Myles, four days spent inhaling the scent of his creamy skin, admiring his crown of light brown hair. She had just four days to savor the contentment of holding in her own two hands the eight pounds and six ounces that had been weighing on her pelvis for nine months. Then came the lethargy. The uncontrollable shaking. In the emergency room, doctors told Lindsey she was simply constipated. They gave her an enema and sent her home. Within 24 hours, the 33-year-old first-time mother was in an induced coma.
During delivery, Lindsey’s perineum had torn, a laceration so severe that a nurse told her she might never be able to have another vaginal birth. The tear was sewn up, and two days after the birth Lindsey was sent home. But a rare infection developed and quickly spread in her body: a necrotizing fasciitis, or flesh-eating disease, that started on her perineum, then spread to her limbs, stomach, hips, and buttocks. (Lindsey’s lawyer has told the Canadian Press that the infection was preventable—a piece of the placenta was accidentally stitched inside her after childbirth.) The infection became so severe that her body went into sepsis, a potentially fatal condition. A week later, in March 2017, doctors pulled her out of the induced coma to check her brain function, which they suspected was nonexistent. The first and only thing Lindsey said after waking was: “Myles.”
It was cloudy and gray on the April morning last year when Lindsey’s partner, Mike Sampson, pulled into the driveway of the three-bedroom bungalow they had recently purchased. It came with a wheelchair ramp.
It was day 420 of Myles’s life, the day Lindsey was released from the hospital for a second and, she hoped, final time. Myles had grown into a talkative, sandy-haired toddler, with a curved upper lip that twinned her own. Lindsey knew she was Myles’s mom. Rationally, she knew. But she didn’t feel like she was. By then, Myles had bonded with the other adults in his life. When he needed a diaper change, a bottle, or a hug, he went to Mike, a bubbly, athletic customer service manager for Hyundai with enough medical knowledge of Lindsey’s condition that you might mistake him for a doctor. Myles had also grown close to Mike’s parents, Larry and Jackie Sampson, who put their lives on hold, off and on, for more than a year to be Myles’s surrogate parents.
“There’s no book for this,” Lindsey tells me, her wide blue eyes welling with tears, when I visit her in late March 2019 at her home in suburban Halifax, a city of nearly half a million people in the Canadian province of Nova Scotia. From the moment I’d read about the lawsuit she filed in 2017—Lindsey and Mike are suing the IWK Health Centre and five doctors for negligence over the years-long ordeal—I’d wondered how she was doing and what life was now like for her and Myles.
While we sit in her sunny living room, with Myles feeding her cucumber slices and zooming Dinky trucks along her arms, Lindsey tells me how she waited months in the hospital for the necrotizing fasciitis to demarcate, to reveal the boundary line between living tissue and the places where the blood vessels in her wrists and legs had died. Only then could doctors cut out the dead tissue. The Wiggles are blasting on the big-screen television mounted to the wall, and as Lindsey chats, her right arm occasionally clangs on a glass side table. Unfazed, she keeps talking. I’m surprised at the 35-year-old’s candor and vulnerability. It’s almost like she’s been waiting to share the details—no longer gruesome to her, though still painful—of her story of birth and rebirth.
Lindsey knew she was Myles’s mom. Rationally, she knew. But she didn’t feel like she was. Myles had bonded with the other adults in his life.
Lindsey shows me photos of her hands from spring 2017; they had turned black from the flesh-eating infection, she explains, and the smell, especially the one emanating from her left arm, was impossible to escape. “For a long time I was terrified of my fingers falling off,” she says. She flips through the images casually on her iPad, remarking on one that still unsettles her. In it, her black hands stroke Myles’s face. “But they were still my hands, right?” she asks.
They were—until day 89, when doctors removed both of her hands and wrists, and part of her left forearm. On day 120, they took her feet—her toes still polished royal blue in recognition of the baby boy she had carried—just below the knee on the left, and to the kneecap on the right. The doctors cut every last remnant of dead flesh from Lindsey’s body, from her hips, thighs, upper left arm, uterus, ovaries, fallopian tubes, cervix, and abdomen, which doctors had a hard time closing up because the infection had eaten through all the healthy tissue. It took 32 surgeries—almost one a week—to get to day 420, the day when Lindsey could leave the hospital and come home for good, the day she could finally be full-time mom to Myles.
During my second visit to the family’s home, two-year-old Myles runs to greet me, to see what I’ve brought: my own children’s discarded Paw Patrol toys, which are a little dusty and missing parts. Lindsey is bright-faced and chipper, if a little unsteady on her feet. Two days earlier she was fitted with a new set of prosthetic legs, and her feet are wedged into a pair of leather Birkenstocks that still bear the impressions of her flesh toes and heels. A barrette pulls her short, blonde, highlighted hair off her forehead. She’s in gray skinny jeans—maternity jeans, because they’re easier to get on and off. Myles tears through the bag of pups as Lindsey recites each one of their names.
The previous year has been about overcoming hurdles, and Mike, her fiancé, has been industrious, finding a way around each challenge that has presented itself. He’s made Lindsey a number of tools to reach and grab things, hacks with twist ties and elastics, to make the house “Lindsey-proof.” He piggybacks her down to the basement bathroom, which has the only bathtub in the house. He cheers her on, lovingly makes fun of her, laughs as she makes fun of herself, but he too has suffered tremendous trauma and is off work on disability for post-traumatic stress disorder.
Before giving birth, Lindsey worked as a telecommunications manager for an airline. She played on three softball teams and dreamed about the day she would catch frogs with her own child. Today, her life revolves around daycare drop-off, medical appointments, and dialysis treatments. Mike does all the driving, though Lindsey hopes to someday get behind the wheel of her Honda Civic that has been sitting in the driveway since she got sick. She’s relearning how to walk, feed herself, brush her teeth, and go to the bathroom, things that Myles is also learning, albeit for the first time.
Lindsey’s eyes cast downward as she talks about what she has gone through, what she’s lost. She insists it’s worth it—to have Myles, to be there for him, to be alive. “I would do this all over again to have him.”
In some ways, I can relate. I, too, struggled to figure out how to bond with my baby boy—if for vastly different reasons than Lindsey’s. My son, Ben, cried constantly from the moment he was born on January 9, 2010, then became a moody toddler who didn’t want to be put down. I became so rankled and sleep-deprived over the first two years of his life that all I looked forward to was his next nap. I thought I was failing as a mother when we were kicked out of mom-baby yoga because I couldn’t calm his wailing, or when I returned from a walk less than a block from home because he wouldn’t stop thrashing and screaming. That I, the woman who had always loved children, couldn’t handle what every other woman seemed to be able to, filled me with feelings of inadequacy. As he got older, I detached from Ben when things got difficult. When he writhed on the floor crying, refused to put on his socks and shoes, and stormed around the house. I pawned him off as much as I could on my husband. I sometimes still do. I, too, want to close a gap with Ben, with whom I still have difficulties at nine years old, and I hope it’s not too late.
For ten months, Myles visited Lindsey in the hospital daily, sometimes twice a day. When he was asleep, napping in the play pen set up in the corner of the room, Lindsey would spend time with Mike and watch their son sleep. When Myles was awake, she fed him rice cereal, first propped on someone else’s lap, and later in a white IKEA highchair, using a utensil that Mike’s dad, Larry Sampson, had invented: a Velcro bracelet with powerful magnets that can attach to a spoon or fork.
When Myles was living at his grandparents’ home for the first 13 months of his life, Lindsey often ached to hold him. She watched him via an iPad hooked up to a camera feed, gazed at the photo of him that nurses had hung from the hospital room ceiling. At bedtime, she sang “Twinkle, Twinkle” to Myles over FaceTime before watching another person bend down and tuck him in. Mike made sure to always bring her Myles’s swaddling blankets so she’d have his scent nearby. “I’d snuggle it till the smell was gone and then we’d switch.” Sometimes, when she was alone in the big hospital room, she cried for hours. Unable to grasp tissues, she soaked the gel pillow Mike had bought her, the shoulders of her hospital gown, and the blankets, as the blinking machines stood by like sentries.
One of Lindsey’s greatest physical accomplishments took place on a Saturday afternoon in February 2018, at a hockey rink during a family sojourn from the hospital: Myles, then almost one, needed a nap and Lindsey decided she was going to be the one to get him to sleep. She wrapped her arms around him, holding him tight in his winter coat and boots as his exhausted wails bounced around the cavernous rink. She thrust her torso back and forth in a rocking motion, struggling to keep him on her lap. Family members nearby kept offering to help.
No, I’m doing this. I don’t care how hard this is on my body. I’m doing this for me.
On and on she went, rocking and singing “Twinkle, Twinkle Little Star” into the curl of Myles’s ear. Finally, he went limp. “I’ve never been more proud,” she says. “It made me feel so good—’cause it was so hard not to be mom. He ran to everyone but me.”
She’s hung on to that triumph during the toughest times, a badge of honor she pulls out as a shield to protect her heart. Like on the days when Myles only wants Daddy, which come less frequently now than they did.
Last fall, for the first time in 563 days, Lindsey stood on her own. She revealed the prosthetic legs to Myles in the living room, lifting up a blanket while she sat in a chair: “Look! Mama has legs.” Myles stared for a second, then said, “Good girl,” and toddled away. Mike scooped Myles up to watch as Lindsey pushed herself upright and into their arms, for balance and for a hug.
Myles likes her better when she has her legs on, because she’s more fun, and they can get closer, Lindsey thinks: “It’s usually a good day if I have my legs on.” On his second birthday in March, when the house was full of family and friends, he ran to the bedroom and returned with Lindsey’s legs. “Mama’s legs,” he said, and started trying to put them on her.
Today, Lindsey has her toes on her prosthetics painted fuchsia, an Essie nail polish color called Haute in the Heat. A friend did the right foot and Lindsey did the left, holding the brush between her forearms, which she lovingly refers to as her “kitten paws.” She’s waiting on an insurance company to okay the USD 148,000 estimate to make a set of prosthetic hands. Mike drew a tiny brown mole on the top of her right foot that mirrors the way her feet used to look.
We move to the kitchen island so Myles can finger paint on a white roll of paper taped down to the counter. Earlier this year, Lindsey fell near Myles while wearing her prosthetic legs, after tripping over a plastic bag. It was an accident, an honest mistake, the sort of thing most parents have done and beat themselves up over. But Lindsey is even harder on herself than most parents: Maybe I’m too unsteady on my legs. Maybe it’s the painkillers making me shaky. Doctors had pumped 17 different types of medication into her while she was in the hospital after the infection and surgeries, and she still takes some of the pain meds. She’s trying to kick her body’s dependence on opioids, helped by medical-grade THC and CBD. But the nausea and sweats and lightning bolts of pain where her limbs used to be are sometimes unbearable. Sometimes she needs a fentanyl patch.
Lindsey insists it’s worth it—to have Myles, to be there for him, to be alive. “I would do this all over again to have him.”
The night before one of our scheduled interviews, Lindsey had an emotional breakdown for the first time since coming home from the hospital. She left the table in the middle of supper and went to bed. It felt like the flu, but it was opioid withdrawal, combined with terrible news from earlier that day: her hernia surgery was being delayed. Lindsey had been counting on the procedure, which would have repaired her separated abdominal wall and allowed her to start building back core strength. She would have been able to carry Myles, who now weighs about 40 pounds, throw him on her hip, cart him around like mothers do. In bed, she sobbed all night, and off and on the whole next day. “I just felt lost,” she says. “I didn’t know what to do. I felt like I was holding my shit together for so long and just couldn’t anymore.”
Nearly two days later, Lindsey emerged from the bedroom. She had to go to dialysis, which is the biggest challenge, she explains. It’s difficult for her to continue to be tethered to machines in the hospital, to still be a patient. She feels stagnant, like she can’t progressively get better or separate herself from the illness. (She’s waiting on a few more tests before doctors can approve her for a kidney transplant, but she’s hopeful. Three people in her family, including Mike, share her blood type and have offered to donate a kidney.) “I can take the amputations. I can handle that,” she says. Dialysis—which cleans her blood of waste, salt, and extra water, functions her kidneys can no longer perform well—is the hardest part. “Because you can’t get better.”
When Lindsey returned home from dialysis that day, an outing which always takes about four hours, Myles clung to Mike. He wouldn’t go to her, wouldn’t eat for her after she’d been absent for those few days. “I’m trying, you know, I’m trying to be a good mom,” she tells me in Myles’s bedroom, two days after our postponed talk. “In my mind, I’ve sacrificed so much, and I wish I could just tell him: ‘Mommy’s going to get better. We’re still in the healing phase.’”
I’m there to observe solo bedtime, a routine Lindsey performs on her own once a week when Mike is at band practice. But band practice was two days ago, when my visit was canceled, so Mike is home tonight. He promises to make himself scarce.
When I arrive, Myles is doing laps around the house in a pair of orange undies, steering clear of the miniature training toilet set up in the living room. Eventually he goes into the bathroom with Mike and runs back into the living room with poop sandwiched between his butt cheeks, like peanut butter. Lindsey calls for him a few times, and eventually Myles approaches, bending into downward dog in front of her wheelchair as she plants her feet and leans forward to clean him. He stays put for wipe after wipe after wipe. I marvel at the way he cooperates with Lindsey with such patience, the ways in which he’s adapted to meet his mother’s needs.
Lindsey maneuvers herself onto the floor with a soft plunk and pulls the tabs on the diaper. Myles is coaxed to lie down and lift his buttocks with his feet on the ground, as Lindsey slides the diaper underneath his body. She rubs cream on his skin for his eczema and moves for his jammies, folding the openings of the pajama bottoms over her hands, as she calls them, and sliding them over his feet onto his ankles. He pulls them up. But when she goes for the shirt, Myles has had enough, crying and running to Mike in the kitchen to put it on.
After toothbrushing, we head into Myles’s room. A few commands to Siri and the star lamp on the wall dims and the vaporizer starts to hum. Myles crawls into Lindsey’s lap in the wheelchair with a soother in his mouth and a soother in each hand. They sing “Twinkle, Twinkle” together, Myles quiet at first, then belting out the words. His feet are propped on the rails of the crib Lindsey painted satellite gray. His head is tucked into her neck.
A few songs later, Lindsey tells Myles it’s time. She pushes him up onto the rail and he slides into the bed. She pulls a plush, navy blanket over his body and turns to wheel out. Back in the living room, she watches her son toss and turn on the big screen TV in black and white, as she did on her iPad during so many nights in the hospital.
Lindsey and Myles have, as of May 18, 2019, been under the same roof for 387 days, close to the number of days they spent away from one another while Lindsey was in the hospital. From the outside, it looks as if they have always been tight. Myles approaches his mom for smooches and mimics her gestures, even lifting his sippy cup to his lips between his forearms in the same way that she drinks out of a glass. Everything is “mama, mama, mama.” But they recently had a huge setback. On April 15, Lindsey lost her balance while wiping down the kitchen counter and fell, breaking her right hip. She was rushed into emergency surgery, where doctors put a rod in her femur. She’s back to taking regular doses of painkillers and has missed Myles’s bedtimes for a week, only able to make it between her bedroom and the bathroom. “This has been rough,” she tells me over the phone from bed, her words slow and drawn out by the drugs. Then she pauses to cheer for Myles, who just did his fourth-ever poop in the potty.
The amount of effort that Lindsey exerts just to accomplish the simplest aspects of parenting is astonishing. Her journey is both circuitous and terribly unfair, built from the pain of relearning how to be in the world. On a small scale, it’s a journey familiar to any mother. All of our bodies are ripped apart by childbirth, the ensuing years spent trying to find a way back to ourselves, to evolve into the next version of ourselves as mothers, with the responsibility of nurturing a small being.
Lindsey is always moving forward. When she opens Myles’s bedroom door in the morning and he rejects her, she opens it again the next day. When she must try three times—missing her mark by mere inches—to get back into her wheelchair after diapering Myles on the floor. When she chooses to keep wearing prosthetics, despite multiple falls. This is mothering, a perpetual act of patience and persistence toward caring for a child. And it astounds me, her Herculean willingness to try over and over despite her physical limitations. Her mothering is both a challenge and an inspiration to my own limitations, my often frustrated and absent-minded mothering, which is always forcing the question: Am I a good enough mom? Maybe there’s no answer to this question. Or maybe it’s about looking to how Lindsey does it. At how her daily tasks of mothering—the wiping, feeding, dressing, transporting, and tucking into bed—are monumental acts of love. And if, when we perform these everyday rituals of motherhood, we look at the task through Lindsey’s lens, maybe they can be that way for the rest of us, too.