By Rachel Sauer
The Palm Beach Post
The mother held her daughter’s thin hand, gently stroking it and murmuring softly.
“No te preocupes, niña, esta bien.”
Don’t worry, baby, it’s OK.
She stood next to an emergency room bed where her daughter lay. Her own face was pulled tight with worry as her daughter, Aidee, restlessly fidgeted, seeking the impossible position that would make her comfortable.
The end of Aidee Bernal’s life was looming. Though Aidee knew it, her mother, Juana Betancourt, refused to admit it. Not then. Not when she was still praying for a miracle.
Despite Juana’s desperate prayers, the cancer that started in Aidee’s tongue had spread. It crept through Aidee’s face and down her throat. She died from it Tuesday.
Several doctors said if the cancer was treated a year earlier, it might have been stopped. But that year, Aidee, an undocumented, 16-year U.S. resident, was denied treatment at various area health care agencies. It was with regret, but she was illegal and uninsured, and their resources were limited.
When she got help at the Caridad Health Clinic in Boynton Beach and from Hospice of Palm Beach County, it was too late. Chemotherapy and radiation treatments did little. Consistent care from a Hospice team and Caridad volunteers ultimately could only make her comfortable.
So when Aidee was rushed to JFK Medical Center Monday morning because she could barely breathe, her mother told her the same thing Aidee had told her own three children as she held them close: No te preocupes, esta bien.
Don’t worry, it’s OK.
Taking leave
Aidee wasn’t scared to die, but she was afraid of leaving.
Hardest was leaving her children: Irving, 11, Amairany, 9, and Brandy, 4. They were the joy that filled her heart and illuminated her pretty face.
Hard was leaving the life she built, from a girlhood in San Lucas, Michoacan, Mexico, to crossing the border into California at 18 using a friend’s papers, and working as a nanny, and marrying a man who gave her two beautiful children, and being abandoned by him in Florida, and working hard in the orange groves to support her children and get an education in cosmetology, and meeting a good man named Ignacio Martinez, with whom she had another child.
She was leaving so much, but the cancer gave her no choice. She thought she’d beaten it in 1998, but it returned in 2002. And for a year she couldn’t get help. By the time she did, caregivers like Boca Raton oncologist Dr. Albert Begas, a Caridad volunteer, could only chase the cancer.
Hospice of Palm Beach County accepted her, free of charge, as a palliative care patient more than a year ago. At the time, the Hospice team didn’t think she was terminal. Dr. Faustino Gonzalez did everything he could think of to help her. Primary care nurse Elena Torriente nurtured Aidee and her family.
Volunteers helped Juana come to Florida last January on a humanitarian visa, to take care of Aidee and her family.
Nothing could stop the cancer – not radiation, not chemotherapy, not medicine, not prayer. In late October, at an appointment he volunteered to do, ear, nose and throat specialist Dr. Ellis Webster had to tell Aidee that surgery, her final hope, wasn’t a possibility because the cancer had spread too far.
Reading between the lines, she saw she was going to die.
A compassionate outpouring
After a story about her situation appeared in The Palm Beach Post Nov. 14, people rallied to help her. They sent cards and checks. They offered prayers. A Boynton Beach healer came to her home to clear her chakras. A Boca Raton family and their friends gathered two carloads of Christmas presents, as did employees of Hospice of Palm Beach County.
The outpouring helped raise her spirits so much that on her 35th birthday Dec. 1, she was rosy-cheeked and sashaying around her small kitchen in an apron, making chicken mole. She couldn’t eat it – hadn’t been able to eat for months and got her nutrition through a tube into her stomach – but she loved to cook for her family.
That night, before Ignacio and the children returned home with her presents, Dr. Gonzalez stopped by to look at her feeding tube. Part of it had slipped loose, so stomach acid was eating at the skin around it, one of the many insidious ways the cancer slunk through her life.
On Dec. 17, Dr. Gonzalez admitted her to Wellington Regional Medical Center. They knew it would happen eventually, that the cancer would start choking her wind pipe and she’d have to get a tracheotomy so she could breathe. Though her voice had been raspy and almost unintelligible for several months – the cancer consumed her tongue and ate through her jaw – now she couldn’t talk at all.
But Christmas was a joy anyway, and so was Brandy’s 4th birthday on Dec. 29.
By then, though, the cancer had taken off at a sprint. For the last several weeks of her life, Aidee had to sleep sitting up. Otherwise, the tumor pressed on her jugular vein and the blood couldn’t drain from her face, Dr. Gonzalez said. Several mornings she couldn’t get out of bed because her eyes were swollen shut.
The afternoon of Jan. 7, her face was swollen twice its normal size. Her lips were huge and distended, her eyes puffy. Gonzalez said that morning he prayed she died before he had to sew her lips together to prevent her now-detached mandible from keeping her mouth open all the time.
She sat in a chair in her living room, in blue flowered pajamas, her head lolling on her right shoulder because it was almost too heavy to support. Puffy white bandages were taped over her cheeks and stretched under her chin, covering the gaping wounds where the cancer had eaten her skin and exposed her esophagus, trachea and the inside of her mouth.
She moved like molasses, slow and languid, writing everything she needed to say in a small notebook. Mostly she rested, while Juana bustled around the apartment and a round-the-clock Hospice nurse sat nearby.
Quiet Irving stayed in his bedroom, but outgoing Amairany came into the living room, skirting around Aidee’s chair and plopping on the couch. She and Aidee wore matching bracelets Amairany had made, plastic beads that spelled out “I love mom.”
One last hospital trip
Monday morning, even though she was no longer Aidee’s primary nurse, Elena Torriente of Hospice stopped by the apartment. She found Aidee struggling for breath, “so I had to call 911,” she said.
The cancer had invaded Aidee’s lungs.
An ambulance took Aidee and Juana to JFK Medical Center, and she spent the next several hours in emergency room 6 – a Spartan room with putty-colored walls and a single fluorescent light panel directly over the bed.
She wore hot pink pajamas embroidered with butterflies, which a nurse replaced with a hospital gown when she stuck EKG monitors to Aidee’s chest.
Aidee’s skinny shoulders rose and fell rapidly with her shallow breaths and the EKG monitor showed her heart rate flashing in alarming red: 175, 183, 185 beats per minute – an unsustainable, hummingbird pace. She was desperately fighting the cancer.
She scrawled on a piece of paper, questions and requests and repetitive ramblings. “Me siento mas mas mal mas mal,” she wrote, I feel much much worse much worse. Juana, who watched her mother die of cancer, tried to understand, and to communicate to a nurse that her daughter needed morphine. She stood stroking Aidee’s arm, her other hand twined through Aidee’s short black hair.
When Ignacio arrived at the hospital, Aidee wrote that she wanted him to go back home and get the will she’d hand-written the previous week. It stated she wanted the children to stay together and with Ignacio until they were grown. He arranged for a notary who works in the emergency room to notarize the paper when he got back.
While he was gone, three hospital staff – plus a medical assistant who could translate Spanish – entered Aidee’s room with papers to sign. Did she want a Do Not Resuscitate order, they asked, or did she want doctors to take extreme measures to save her life?
Juana asked them what they meant. Extreme measures, they explained, meant doctors would use every means available – at enormous cost to her family – to keep her alive, including life support. Did she want that? Juana looked uncertainly at Aidee, who struggled to write something on her pad of paper.
A hospital employee explained one more time: If Aidee signed the paper, she would no longer be a Hospice patient, but a patient of the hospital. And rather than letting her quietly die if something went wrong, doctors at the hospital would do whatever they could to make sure she didn’t.
Again Juana looked at Aidee, who was delirious with pain but nodded weakly, and held her hand out for the paper to sign. Extreme measures it was.
When Ignacio returned, she signed the will she’d written out. She bent her skeletal legs at the knee and propped the pad on them. She could barely hold her hand to the pad. Her skin was like rice paper, her arms blue-veined and weak.
She fidgeted. Juana arranged folded sheets and a blanket around her head, and twice Ignacio gently lifted her so she could sit up straighter. She grimaced as he moved her and it didn’t work, anyway. She couldn’t get comfortable.
By mid-evening, she had such a hard time breathing that emergency room doctors attached a respirator to the tracheotomy tube. The steady puff and hiss filled the room as her family and friends, including her brothers Antonio and Reynaldo Bernal from Okeechobee, began arriving.
When something went wrong and the respirator started beeping loudly, the family rushed to cluster around her bed and Juana began praying aloud.
The long night
Aidee was transferred to the critical care unit Monday night. A doctor came to the waiting room to tell her family she had sepsis – a bacterial infection in her blood – and pneumonia. They were doing everything for her that they could, he told them.
When Juana and Ignacio got to her room, she couldn’t lift her head and the respirator pulsed a steady rhythm of air into her lungs. She could barely open her eyes. Ignacio thought maybe he should give the children one last chance to see her, so he drove home to gather them.
It was after 11 p.m. when the children shuffled into their mother’s softly-lit hospital room. Brandy eagerly ran up to the bed, declaring, “Mommy! You’re in the hospital again.”
Irving and Amairany stood back, wide-eyed and hesitant. They didn’t know what to say. Juana and Ignacio prompted them closer to her bed, where she groggily tried to keep her eyes open and smile. The children made fleeting eye contact, then looked at the floor, the walls, the ceiling. They mumbled greetings and inched back.
Then Ignacio took them home, because they were tired and it was past their bedtime.
Juana, Antonio and Reynaldo kept vigil in the waiting room all night. Juana prayed and wept, and her sons held her close. The men took walks, bringing back coffee and water. Juana sat ramrod straight on a chair, waiting for news, waiting to be told she could be with her daughter.
Early Tuesday morning, Elena Torriente went to the hospital to be with Aidee’s family. She sat by Juana in the waiting room, wearing her blue scrubs in preparation for a full day of visiting her other Hospice patients.
Juana kept saying a miracle would happen, so Elena stated what she and other Hospice caregivers had said before, what Juana had refused to hear.
“Esta muriendo, Juana.” She’s dying.
No, Juana insisted, there will be a miracle.
“No, Juana, I’m sorry,” Elena repeated gently, looking in Juana’s teary eyes. “She’s going to die.”
Juana paused, then turned to Antonio, stricken.
“She’s going to die,” Juana told her son, and shook with her sobs.
Letting go
All day Tuesday, Aidee’s family and friends assembled in the critical care unit waiting room. They brought food that was only picked at. Irving, Amairany and Brandy were with Aidee’s friend Marilin Velazquez, so Ignacio could spend the day at the hospital, too. He and his brother wandered the halls and sat with their friends in the waiting room.
They reconsidered their wish to have doctors take extreme measures to save Aidee’s life. Elena had told Juana that because Aidee was so fragile, if doctors had to perform CPR her ribs would surely break. Using the defibrillator paddles could cause even more damage.
“I don’t want that for her,” Juana said, and Ignacio agreed.
Through the day Aidee lay still in her bed, fading. Her heart rate hovered at 160. Then, around 4 p.m., it simply stopped.
Her family was near when she died.
Afterglow
Aidee’s critical care nurse, Rande Drew, laid her thin hands across her chest and pulled the white sheet over her head. Her frail body was tiny underneath the sheet. Aidee’s mother and brothers, her fiance, her friends gathered around her bed and wept as wayward rays of afternoon sunlight cast the room in a gentle glow.
The grief was immediate. They tucked and retucked the sheet around her body, smoothing invisible wrinkles, patting her hands and caressing her forehead with feather touches, whispering words of love. Her brother draped a small white towel over her feet and tucked it around them so they wouldn’t get cold.
After a little while, Juana brought out a white prayer book and her white rosary beads, put on thick-rimmed glasses and sat down beside the bed. “Santa Maria,” she began, offering a prayer to the Virgin Mary. The others bowed their heads.
She prayed and prayed, the room quiet and still except for the sound of her calm voice. When she finished, the others in the room crossed themselves. Using her thumb, Juana made the sign of the cross on Aidee’s forehead and chest. Then she calmly laid the prayer book and rosary beads above Aidee’s hands, took off her glasses and gave up her rigid control.
She staggered into her son Reynaldo’s arms. “Ay, mi chula, mi chula, mi chula,” she wailed, keening like a wounded animal. “Ay, mi niña. Ay, mi bonita. Ay, mi chulita.” Oh, my cutie, my cutie, my cutie. Oh, my baby. Oh, my pretty one. Oh, my little cutie.
She went from friend to friend, crying against their chests, inconsolable. Ignacio stared blindly at Aidee’s shrouded body, hands in his pockets, tears slipping down his cheeks.
Soon thereafter, Antonio took Juana home to shower and change. Ignacio stepped into the hall with Hospice pastor Greg Freijo to talk about the cremation, the funeral, the future. He was broken-hearted and bewildered, a deer in headlights.
After Juana returned, the family gathered around Aidee’s body, on which her family had placed prayer cards and pictures of saints, holding hands as Greg offered a prayer. “Lord,” he said, “we know Aidee is with you in heaven, walking on streets of gold.”
One by one, Aidee’s family and friends left the room, leaving only Juana with Aidee’s body, while the man from All County Funeral Home sat on a chair just outside the door.
A light on the wall shed a dim yellow corona over the bed as Juana smoothed the sheet and ran her hand softly over Aidee’s head, murmuring constantly. “Mi niña,” she said, leaning on Aidee’s chest, resting her head on her own folded arms and weeping.
The day after
On the sidewalk outside the emergency room, Ignacio pulled his keys from his pocket and said he had to go get the children. He had to take them home and tell them their mother died.
Together, as a family, they mourned. Brandy didn’t understand; Amairany and Irving did. They felt sick from missing Aidee, and went to bed with broken hearts.
The next morning, friends descended on the small apartment. They cooked breakfast and wiped already-clean counters. They ran inconsequential errands, just for something to do. They set up a small shrine with flowers and photos of Aidee in a corner of the dining area. They hugged the children and hugged them again.
Irving said nothing and retreated to the room he shares with his sisters. Amairany hovered in the living room, finally sitting on the love seat beside Aidee’s friend Amparo Valdes.
“Como estas, mami?” Amparo asked. How are you?
Amairany said nothing. She looked at Amparo, then at Marilin Velazquez, who was sitting nearby, then at the carpet. Slowly Amairany’s face crumpled and tears filled her dark brown eyes. Amparo hugged her tight.
Family friend Carolina Guevara took Juana to Syms to buy a black dress for the funeral. They picked several for Juana to try on, but a store employee had to call Carolina to the dressing room. Juana was crying so hard she couldn’t get dressed.
Ignacio spent most of the morning taking photo negatives to CVS and Walgreens for one-hour printing. The photos were for a video montage the funeral home would put together for the service.
At noon, he and Antonio went to All County Funeral Home to plan the service. They wondered what state Aidee’s body would be in for a viewing on Friday. The funeral director assured them everything would be fine and asked if the cosmetician should apply colorful lipstick.
No, Ignacio said, they wanted her looking natural and beautiful, like the person they knew.
An open casket
Thursday afternoon, Brandy asked Ignacio, “When are we going to see mommy?”
“Tomorrow,” he told her, “we’ll see her tomorrow. She won’t be able to move and she won’t be able to talk, but she’ll be there. And you understand she’ll always be there with you, right?”
She nodded. When tomorrow came, Brandy got dressed in a lavender party dress and shiny gold shoes and rode with her family and friends to the funeral chapel. Irving wore a short black tie and his gray dress shirt was untucked, because he’s 11. Amairany wore her best striped sweater and jeans, just like her cousin Jasmin.
Aidee’s body lay in a white casket at the front of the chapel. A blue scarf was draped around her jaw to hide the cancer damage.
Juana whimpered then sobbed, a black scarf draped over her head and shoulders. Finally, she knelt in front of the casket and calmly started to pray aloud, her sons standing sentry on either side of the casket.
Irving sat by Ignacio’s brother, bent at the waist and crying. Ignacio stood for a long time over Aidee’s body, caressing her hair, touching her hands, weeping silently.
Beyond the abyss
There’s no map for this, for the uncharted roads a family travels when someone they love dies. There are only blind steps into the abyss.
This much is certain: Aidee wanted her children to stay together, and with Ignacio, who was her fiance but not husband. How that will happen, nobody knows yet. Legally, Irving and Amairany’s biological father, whom they haven’t seen for nine years, must be notified. He must be asked whether he wants his children to come live with him.
Next in line for rights to the two oldest is Juana, who talked about taking them back to Mexico with her. But on the day Aidee died, Juana admitted she didn’t want her daughter looking down from heaven and asking why she did that.
Ignacio, who is 26 and shouldering the heaviest of responsibilities, said he is scared but determined. His children will stay together, he said. He works 12 hours a day laying underground pipe, so he has talked to his sister about moving in with him and the children and taking care of them.
He doesn’t know what they’ll do yet, because these are thoughts for another time, when they’ve finished the traditional nine days of prayer, when the pain isn’t so keen it threatens to tear them apart.
Maybe they’ll think about the future tomorrow, or the next day, or the day after that. But not today. Today they just want to remember, and to think about Aidee.