Noelia Ferreira wants her Abi, born with a rare genetic defect, to know comfort and joy and never an institution.
The yelp from the baby monitor startled Noelia Ferreira from a shallow sleep. It took five seconds, maybe, to bolt across the hallway to her daughter’s room, her movements in the dead of night fluid, automatic.
Abi was lying on her side, her limbs outstretched and rigid in the clutch of another seizure. Noelia leaned in close so their faces were inches apart, her long hair falling around them like a curtain. She gripped Abi’s hands in hers.
“It’s OK,” she promised, making her voice strong. “You’re OK now.”
In sleep, Abi resembled any 15-year-old, with her unruly curls, smooth skin, and slender limbs. But a rare prenatal glitch — a missing piece of genetic code — had interfered with her development. Abi’s body didn’t work the way it should. She could not speak or walk. She was partly blind and deaf, and it was hard to know how much she understood. Her mother fed her through a tube.
And when seizures gripped her, several times each day, her mother was by her side watching over her.
Noelia lived in a constant fog of worry and exhaustion. A divorced mom in Dracut, north of Boston, she took care of Abi around the clock, except for two weekends a month when the girl was with her father. Even when there were no nighttime seizures, there were other tasks that woke Noelia: Abi needed to be turned in bed, or her belly needed massaging to press out painful intestinal gas, or her diaper was wet. Finding a nurse to help, even a few nights a week, had become almost impossible because the rate Abi’s state insurance program paid them was too low. Noelia had forgotten what it felt like to sleep through the night, to wake up fully rested, her head clear.
The tiredness seeped into everything. It made her less patient with her other, older daughter, Katelyn. It made her forget things. One recent night, she’d neglected to turn on Abi’s feeding machine.
Most of all, she feared sleeping through a seizure. Who, then, would make sure Abi made it back to consciousness, and who would administer potentially life-saving drugs if she did not?
Hovering close by the bed this night, Noelia watched her daughter’s face and waited. As suddenly as it had begun, Abi’s trembling stopped. Noelia wrapped Abi in her arms and kissed her cheek as the girl resurfaced into consciousness.
This was Noelia’s constant, all-consuming and elusive wish: to know that Abi, trapped inside a body that had failed her, nonetheless felt safe and loved, even happy.
Noelia rose and put on soft music to soothe Abi back to sleep. Her daughter seemed OK — at least she hoped so. Alone in the dark, she had no one else to ask.
103 days. That was how long it had been since Noelia had a nurse to help her care for Abi. The last nurse left in February. Now it was June. She tried not to give in to desperation, reminding herself that she had once gone nine months without nursing help.
But finding a nurse wasn’t likely to get easier, for her or any of the hundreds of other Massachusetts families caring for children with chronic and complex medical problems. Despite increasing agreement on the benefits of home care, meeting the demand for it has gotten harder. As the going pay rate for nurses has steadily climbed, the state health insurance plan Abi depends on, MassHealth, has let its rate stagnate. MassHealth now pays roughly $31 an hour — half as much as experienced pediatric nurses can earn working in some hospitals. The more the gap widens, the harder it gets for these families to find nurses.
Other states with the same problem, like Maine and New Hampshire, have recently taken steps to correct it, dramatically raising reimbursement rates to more competitive levels. In Massachusetts, where the last major rate boost was in 2004, the state approved two small increases this year totaling 4.8 percent — a step in the right direction, but a sum that advocates say is still too small to bring enough additional nurses on board.
For Noelia, it has done nothing to interrupt a seemingly endless cycle. She faces paperwork and appointments and interviews just to start the search process with one of the medical staffing agencies that she and other families rely on to recruit home nurses. And then she waits. In the rare instance when the agency finds someone for Abi, the nurse is soon lured away by a better job. Sometimes the agency fails altogether and, after months of fruitless searching, closes Abi’s case. That leaves Noelia no choice but to start again, hunting for a new agency to begin a new hunt for a nurse.
Noelia has taught herself to do the things that Abi needs, but she often performs those tasks with a nagging doubt. Nurses get years of specialized training, while Noelia has only bits of know-how she picked up along the way. What if she missed something, or messed up and hurt her daughter?
“It puts Abi at risk,” she said. “And it’s killing me.”
There was another possible solution. It was so painful to contemplate that Noelia never really had. But in her mounting exhaustion, it lingered in the back of her mind: The state would pay for her daughter’s care if she put Abi in an institution.
Morning came, and Noelia woke up tired. She had slept a couple hours, maybe. She dressed, pulled back her hair, and descended through the quiet house to the kitchen to get Abi’s medications ready: Two for seizures. Two for intestinal disorders. One for her liver, one for constipation, one to help clear mucus from her lungs. Some were liquids; some were pills she ground into powder by hand. All of them would go into the feeding tube.
Keeping track of Abi’s meds was just one demanding aspect of her care. Managing her three daily tube feedings was another. Noelia stretched and massaged Abi’s limbs to improve her poor muscle tone. She tracked the frequency and severity of Abi’s seizures. She took care of Abi’s wheelchair and her hearing aids, and the hole in her stomach where the feeding tube went in. Noelia had a little help with some basic tasks like bathing Abi from a state-paid attendant who came a few evenings a week, but for the most part she was on her own.
Now, she rolled the wheelchair across the broad pine floorboards, into position at the bottom of the stairs. Then she headed back up. It was 6:30 — time to wake Abi and get her ready for school.
Noelia could hear her older daughter, Katelyn, a high school junior, getting ready in her room. Noelia’s boyfriend, Rob, an easygoing salesman, was also awake. She turned on a lamp in Abi’s tidy bedroom and switched off the humming machine that kept Abi’s airway open as she slept. “She’s awake!” Noelia cooed, kissing Abi’s cheek. “Good morning, Abs.” She lifted the girl’s arms up over her head. “Let’s get all your bubbles out. Big stretches!”
Noelia talked to her constantly, though the girl could not reply and gave no obvious sign she understood. Noelia believed that Abi did. After years of studying her expressions and sounds, she felt she knew what they meant, as though they made up a private language that only Noelia and a few others understood.
Abi was quiet and acquiescent while Noelia cleaned her face with a warm cloth. Noelia changed Abi’s diaper, pulled jeans over her legs, bundled her into a sweat shirt. Then she spun Abi into a sitting position and wrapped her in a hug. They sat entwined for a minute before Noelia, in one fluid movement, lifted Abi in her arms and carried her into the hall and down the flight of 13 carpeted stairs. She placed the girl in her wheelchair, arranged her feet on the footrests, and fixed the twisted sleeves of her sweat shirt.
Noelia, 5 feet, 2 inches tall, did not know how much longer she could carry Abi. The girl now weighed 78 pounds, low for her age but more than half as much as her mother.
“I’ve got to say, you look adorable again, Abs,” Noelia said, fastening her daughter’s seat belt before dashing back upstairs. “Let me get an elastic, because I think your hair is gonna need some taming.”
They had half an hour before the white, wheelchair-accessible van arrived to take Abi to her special school in Beverly. In the kitchen, Noelia poured the cider-colored blend of medications into Abi’s feeding tube. She brushed Abi’s teeth for her, and finger-combed her thick brown hair, pulling it back into a ponytail.
“Let’s beautify you,” Noelia said as she worked. “There you go — so pretty!”
Katelyn appeared in the kitchen, carrying an umbrella and a long, blush-colored dress on a hanger. Headed to a prom that night at another school, she promised to send her mom a photo later from her friend’s house.
It weighed on Noelia that she had so little time for Katelyn. She would be a senior in the fall; they were way behind looking at colleges. But Noelia was just one person, she reminded herself. She could only do so much.
Katelyn took a muffin from the counter and disappeared out the door.
“Text me,” her mother called, still bent over Abi.
They’d known right away that there was something wrong with Abi. Just 4½ pounds at birth, she had needed extra oxygen. One of her eyes was smaller than the other. Sent to a Boston hospital for tests, she was diagnosed with a genetic defect, 22Q deletion syndrome. Abi would face challenges, the doctors said, but with hard work, she could have a normal life.
The family lived with that diagnosis for a year. Then they found out the truth was even worse.
At 14 months, Abi had her first seizure. Terrified, Noelia took the baby across town to Boston Children’s Hospital. Doctors there did more tests, and then did them again, until they were certain.
They called Noelia and her then-husband into a conference room and told them Abi had been misdiagnosed. The missing genes that had caused her faulty development were not on chromosome 22, but on chromosome 2. This was rarer — and more serious.
Noelia’s voice shook as she asked the first question that popped into her head: “So she won’t be able to go to prom?”
She can go — but to a different prom, they told her gently. She’ll do things; she’ll just do them differently.
Noelia went home and cried for days, imagining what they meant.
The woman on Noelia’s cellphone had bad news: The agency was closing Abi’s case. They had searched and searched for a nurse, but three months had passed now, and Abi’s time was up.
“OK,” Noelia answered. What else could she say?
She reached out and squeezed Abi’s hand. They were on the school bus, riding home together. Noelia spent four or five hours a day on the road in this white van, working as a paid bus monitor for Abi and another student. In between the morning and afternoon runs, she scrambled to pay bills, clean the house, run errands.
As the van slowed in traffic, Noelia thought about the red tape she would have to cut through again to find another staffing agency. It made her tired just thinking about it.
The van pulled into their driveway in Dracut, on the quiet, woodsy street where Abi and her sister had grown up. Noelia unhooked Abi’s wheelchair from the metal latches on the floor, and the driver pressed a button to lower them to the pavement. She pushed Abi up a ramp and into the lift that brought them upstairs to the living room, their sanctuary.
“Do you want to listen to music?” she asked Abi in her right ear, the one she could hear out of. Abi was still and silent in response, which Noelia had come to interpret as agreement.
“Hey, Alexa,” Noelia said, turning toward the Amazon “smart speaker” on the table. A song by the soft-rock musician Jack Johnson filled the room.
Johnson’s laid-back, acoustic guitar music was so entwined with Abi’s past that Noelia could not hear it without experiencing a cascade of memories and feelings. When Abi had first heard his music, at 4 or 5 years old, it seemed to reach her right away, even somehow to make her glow. And so Johnson’s music became a constant part of their family’s life together. Noelia played it to soothe Abi to sleep, to calm her after seizures or surgeries, or just to bring her what Noelia hoped was joy.
Somewhere in Noelia’s inbox was a receipt for tickets to a Jack Johnson concert. She had bought them one dark day in February, just after the last nurse quit. She would take Abi to her first concert, she’d told herself then. It would be something for them to look forward to, in a time when summer had returned, and maybe, life had gotten easier.
The concert date was now approaching, and life was not any easier. But it made Noelia feel whole to give Abi these normal teenage milestones. She wanted to believe it would make Abi feel whole, too.
Noelia’s family immigrated to America from Portugal in 1981, when she was 10: her parents, their eight children, and two suitcases. Her father had a job lined up north of Boston on a garbage truck. Though Noelia came to feel fully American, with barely an accent, she strongly identified as an immigrant. She traced her grit and resilience to that past — the same will to survive she saw in Abi.
Feisty and funny and tough, she was raised not to complain. She rarely talked about the pain she could not ease, watching over Abi. When she did, the depth of feeling sometimes overwhelmed her.
The last thing she wanted was to speak of it in public. But when a group of parents of disabled children asked her to, at a meeting of the MassHealth board in May, she agreed to testify. She liked the idea of turning her frustration into action. The day before the hearing, she stopped at a discount store on a whim and bought a gray scrub shirt, the kind nurses wear.
When it was her turn at the podium, Noelia described her daily routine and her lonely nighttime vigils watching Abi’s seizures. She talked about injecting Abi with narcotics, alone and unsure, when the child’s shaking wouldn’t stop. She tried not to cry, but it didn’t work.
“You made me a nurse,” she told the panel, standing before them in her scrub shirt. Her eyes were damp, but her gaze was steady. “All I want to do is be her mom.”
The concert was tomorrow, and things weren’t going well.
Noelia insisted that her daughters make a sign together, to hang on Abi’s wheelchair at the show. But Katelyn was impatient — she had two exams to study for — and Abi seemed unhappy, shaking her head and groaning in her wheelchair.
Noelia forged ahead anyway, sketching the words IT’S MY FIRST CONCERT on a poster board. “Come on,” she urged, brushing paint on Abi’s fingers and pressing them onto the poster.
Then Abi yelped, and her limbs stiffened in a seizure.
Worry settled into Noelia’s face. It was Abi’s second seizure in two hours. And the night’s most stressful task still lay ahead: the monthly replacement of Abi’s feeding tube.
There was still no nurse, so it was all on her.
Noelia calmed herself, as she always did, by remembering what one nurse had told her, long ago: Think of it as changing an earring.
Abi lay sleepy on her bed after her bath. It was dusk outside her open window, the birches glowing ghostlike in the yard. Her mother rolled up Abi’s shirt and used a wad of gauze to clean around the hole in her stomach. She gripped the old tube tight and quickly pulled it out.
Then she peered into the small, red-rimmed opening.
“There’s blood in there,” Noelia said. “There’s never been blood.”
She rubbed the wad of gauze around the hole. A pinkish smear appeared. Frowning, but unsure what else to do, she pushed the new tube through the hole, into Abi’s stomach.
“It’s in,” she said, kissing Abi’s face. “Your little earring.”
Abi groaned as her mother fingered the gauze. “Maybe it was just rubbing there,” she guessed.
Or maybe not. She didn’t know.
It took three hours in traffic to get there, but they had arrived, finally, at the concert.
They gathered around the back bumper of Noelia’s van, three of her brothers, their children, and hers, eating cold pizza and chicken wings. The sun felt warm as it sank below the trees; the sound of the opening band drifted toward them from inside the Xfinity Center in Mansfield. Abi dozed off in her wheelchair in the evening breeze.
“Nice and relaxed,” joked Noelia’s brother Tony, watching her nod off. “That’s what we want at a Jack Johnson concert.”
Noelia handed out glow sticks for the show: a yellow star for Abi; a pink heart for 6-year-old Laila, Abi’s cousin, also attending her first concert. Noelia tucked Abi’s star into her lap, and propped the “MY FIRST CONCERT” sign they’d made behind her in the wheelchair.
They joined the lines of people waiting to get in, inching through the security check and handing over their tickets. As her mother pushed her through the gate and into the venue, Abi broke into a wide, unmistakable smile. Noelia started laughing when she saw it, and grabbed her daughter’s hand.
Next week, she would try again to find a nurse. Tonight, though — together; at ease — this was all they needed.
A full moon rose above them in the darkening sky. The music swept over them in waves.
Noelia felt her throat constrict as the tears came.
Correction:Because of a reporting error, an earlier version of this article incorrectly said the two most recent nursing pay rate changes in Massachusetts went through the legislature. The changes were approved by the state.
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