Editor’s Note: Author Chelcey Adami met Maribel Landeros and Karizma Vargas a few years ago when she wrote about Karizma’s quinceañera. Adami became close friends with Landeros, eventually asking her to be a bridesmaid at her wedding.
SALINAS, Calif. – Maribel Landeros always wanted to be a mother.
Growing up in California, she tried to pack up a bag to take her baby cousin home and cried when her aunt told her, “No Mija, you can’t take her.”
She met her future husband, Edgar Vargas, while a high school student in Salinas. They had been friends, and after graduating in 1993, they reconnected in the late ’90s after running into each other at the mall. The friendship grew to romance.
They married in September 2000. A doctor told Maribel she might face issues trying to get pregnant, prompting them to quickly start trying. Maribel lit candles and prayed that she could be able to have a child.
Something worked. Maribel, 25 at the time, was pregnant by Thanksgiving.
They waited to find out the sex until their baby was born happy and healthy on July 30, 2001: a girl they named Karizma Zitlali Vargas.
“I was in heaven. I was the happiest mom on earth,” Maribel said. “I was so ready for motherhood … I was just so happy and just so happy that I had a girl. It was the best gift ever.”
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For Karizma’s first Halloween, Maribel fretted over how to create a bunny costume for her daughter and a matching carrot costume for herself.
At Karizma’s first birthday, Maribel’s energetic baby dug into her cake. Karizma lived up to her name, squeezing her mom with big hugs and charming family and friends with wide smiles and dark brown eyes.
Karizma began to string together “Mama,” delighting her mother. It was “just the things I had wanted from a daughter or son my whole life,” Maribel said.
Maribel didn’t know that these moments would be the only times her daughter could ever call her mom or hug her.
Or that her role as a mother would be unlike anything she could imagine.
Seconds change everything
On Sept. 25, 2002, Maribel left work and headed to the grocery store for dinner supplies. Her friend had given her a recipe for teriyaki chicken, and she wanted to make it for Edgar’s parents, who were coming over that night.
Once everyone was there, Maribel began cooking. Karizma, now 14 months old, wanted a piece of fruit, so Maribel placed her in her high chair and gave her a slice of peach. Or maybe nectarine.
Hot steam rose from a rice cooker on the counter. As Maribel lifted the lid to check it, the machine’s electrical cord slid down the wall. Maribel turned to the sink to wash her hands, and the falling electrical cord caught the baby’s attention.
Karizma twisted to the left side of her high chair, reached down and grabbed the cord, pulling the rice cooker toward her. The rice, boiling water and steam tumbled over her.
Her seared skin came off immediately.
Maribel grabbed Karizma and shoved her under the faucet, pouring cool water over her and pulling off her clothes. The family panicked. Maribel’s father-in-law covered her and his injured granddaughter as they all ran out into the foggy night, speeding through the streets to Salinas Valley Memorial Hospital.
Karizma, in shock, didn’t scream. She began making little whimpering noises. As they entered the trauma room she was lifted into a hospital bed as nurses placed cold towels on her.
It was the last time Maribel ever heard Karizma say “Mama.”
Karizma was given pain medication and intubated to help her breathe. Doctors weren’t sure if her vocal cords had been burned or if she inhaled any steam.
A trauma team flew Karizma to Santa Clara Valley Medical Center where she stayed intubated in the intensive care unit for a month.
On Oct. 29, doctors said Karizma was ready to breathe without a tube, so they removed it.
But over the next 27 hours, Karizma began breathing heavily, gasping and didn’t look well.
Doctors reassessed their young patient. Karizma couldn’t breathe on her own, they said, and needed to be reintubated.
During that procedure, Karizma went into cardiopulmonary arrest.
Maribel stared silently, refusing to leave as a team of medical professionals began to swarm her baby.
In just 30 minutes, Karizma suffered lifelong brain damage.
She would never again speak or control her limbs.
For years, Maribel didn’t think it was the doctors’ fault, but when she went back and read the medical report, her opinion changed.
“In the end, I do believe it was a medical mistake,” she said, “…From me watching and me knowing what they did, this could have been prevented. But again, I’m no doctor.”
The events left Maribel lost and disoriented.
“I felt like, ‘Oh my gosh, what does our future look like?'” Maribel said. “I had no clue, and I was so afraid.”
After six more months in the hospital, Edgar and Maribel packed up and left with Karizma.
The family drove back to Salinas on March 21, 2003. Family and friends put a sign in the window of their home that read “Welcome Home Karizma!”
They went inside the one-bedroom apartment — the first time they had all been back since the night of the accident — and sat on the floor.
“She wasn’t the same little girl we went into the hospital with, mentally or physically,” Maribel said. “… I remember thinking ‘What is going to happen next?’ and ‘How long do we have to wait to see how far she’s going to go?’”
The next night, someone broke into their car. The tired young parents hadn’t unloaded it, and the thief took Karizma’s diaper bag, a video camera and videos Maribel had taken of Karizma.
“It sucked because all those videos were of her when she was a baby,” she said. Before everything changed.
Maribel put her nursing skills to work: bathing Karizma, feeding her through a tube attached to her stomach, giving her medications crushed into a liquid, brushing her hair and changing diapers.
She and Edgar rarely slept, afraid Karizma would die in the night. They could hear her struggling to breathe with jarring rasps because the intubation had scarred her vocal cords.
They took Karizma to therapy, with an exhausted Maribel falling asleep sometimes on the way. At one point during the first few years, any time Maribel would feed Karizma, the toddler would projectile vomit and suffer explosive diarrhea.
“It didn’t matter where we were at, getting in the car, on the couch, on the ground, on my way into therapy. That was hell … It was constant, it didn’t stop,” Maribel said. “And I never went back to work.”
A doctor eventually found that Karizma had lesions on her colon, causing issues when she ate. It was just the beginning of a long list of medical issues and surgeries Karizma would face.
When she was old enough, she received a wheelchair, and Maribel and Edgar began moving her back and forth from the wheelchair to sofas, bed, chairs and their laps.
But the stress wore on the couple, and they separated in 2007.
“We both wanted the best for her, but we didn’t agree on what was best for her,” Maribel said.
They divorced in 2011, and Edgar remained nearby, a constant support in his daughter’s life.
“We don’t know how long we have on this planet, but you have to make the best of it and that’s what Maribel has done for Karizma,” Edgar said. “She’s really been an inspiration for her and I. She’s powerful.”
‘Happy families… I just hated that we didn’t have that’
Around that time, Maribel and her parents took Karizma to see a San Francisco neurologist. Maribel had a question she hadn’t asked before, “but everyone keeps asking: ‘What is her life expectancy?'”
The doctor said, “What you see is what you get. Look at your daughter. This is who she is going to be.”
The doctor continued — telling Maribel there’s a possibility that Karizma could die as a teenager. Her chronic lung disease and lifetime in a wheelchair may cause her organs to begin failing.
“It was the worst feeling in the world. I felt like she was going to die the next day,” Maribel said.
Back home, Maribel grabbed Karizma and cried as she told her, “I’m so sorry this happened to you, Mamacita.”
A “walking zombie,” Maribel cried every night for three weeks. Each time she would bathe Karizma, change her diaper or feed her, she’d pause to think that she could lose her at any time.
“I hated everybody who was walking by, in a car, happy families,” Maribel said. “It wasn’t that I hated them, I just hated that we didn’t have that. That was so hard to see.
“It was the only time in 18 years that I felt that bad and just let myself feel. When the three weeks were up, I jumped up and said, ‘I need to take advantage of her right now and I need to take advantage of every moment I have with her now before God takes her.'”
Maribel fixated on each milestone – birthdays, holidays, graduations – and marked each with over-the-top celebrations. She planned Karizma’s quinceañera for more than a year, having a customized dress made for her.
It was a marquee affair with a parade of classic cars and lowriders escorting her.
Karizma gazed at a crowd from the theater’s dance floor, her poofy pink dress and tiara lit up by the spotlight. Her dimpled date strutted next to her wheelchair as her friends danced nearby.
“It kept me going and we always had something to look forward to, and every time we reached a goal, it was like winning the lottery,” Maribel said.
Maribel and Karizma, together in a 2-story home, navigated life together. Maribel obsessively advocated for her daughter.
She enrolled Karizma in school and sports, pushing her wheelchair around softball diamonds and up and down soccer fields.
With support from Edgar, they traveled across the world, including to multiple European nations, to Mexico to swim with dolphins and to Caribbean islands.
Salinas pediatrician Dr. Leslie Galloway has known Maribel since Karizma was born and describes her as a “hero.”
“It’s like having a newborn, in terms of the level of care, but it never stops,” Galloway said last year. “Mothers of newborns are exhausted, and she’s done this for 18 years.”
Karizma’s ability to understand and communicate is limited. She looks straight at those speaking to her and her eyes follow them as they move. If she’s in a good mood, she smiles widely and if excited, she’ll add quick guttural rasps. When grumpy, she frowns.
If Karizma wants something, such as water, she’ll focus her eyes back and forth between the water and Maribel until she receives it. When asked if she wants to do something, in either Spanish or English, she’ll smile in affirmation.
But she can’t follow a full conversation. At school, there was no way to ascertain how much she understood. If you asked her to blink once for yes and two for no, she couldn’t.
And caring for her has become more difficult. With Karizma now weighing about 91 pounds, Maribel struggles to avoid back injury as she lifts her eight to 12 times a day. She turns Karizma several times a night to prevent bedsores, leaving Maribel perpetually exhausted. Karizma’s arms and legs stiffen, making it difficult to dress her at times.
Maribel maintains a regimen of grueling workouts, nutritious fresh food and acupuncture to cope with the physical challenges that come with caring for Karizma.
“With her being this way, I need to be around for an even longer time because I’m her caretaker, I’m her mom,” Maribel said. “I work really hard trying to stay fit and healthy.”
Wearing a back brace, Maribel’s father Miguel Landeros at times can help with lifting her. And like a pharmacist, he crushes and mixes the five medications she takes daily through a special feeding tube.
He makes a point to speak to his granddaughter and gets frustrated at parties if people aren’t acknowledging her.
When needed, Maribel’s mother, Ofelia Landeros, helps bathe and dress Karizma, combs her hair and rubs moisturizer on her face.
“I worry that (Maribel) worries about everything,” she said. “…I admire her a lot because there are very few moms who give their children the world and everything they can.”
During celebrations, it’s hard for Ofelia to see her other grandchildren enjoying food all around Karizma, who can only watch. Karizma could asphyxiate when eating or drinking, so the closest she comes is when, on special occasions, Maribel will rub a tiny amount of food on her lips so she can taste it.
The grandparents are getting older and can’t always be there. Karizma’s care, ultimately, is still on Maribel’s shoulders.
On July 30, 2019, Karizma turned 18.
As loved ones sang “Happy Birthday,” Maribel presented her daughter with a white-frosted cake and tall lit candles. When the time came, Maribel blew them out, using the breath her daughter couldn’t muster for her 18th birthday wish.
Then, she gently helped her daughter’s stiff arm hold a knife to cut the first piece of her birthday cake.
There’s a familiarity to all this: Maribel spending yet another day as her daughter’s arms, legs and voice.
And as Karizma’s life as an adult began, a certain reality set in for Maribel.
“Time to time, I had these worries, because the reality slapped me in the face that she’s not going to have kids, not going to give me grandkids, not going to drive a car, not going to get married and probably not going to ever call me mom,” Maribel said.
She also found that there are not as many options for adults with disabilities as there are for children.
“I have noticed that Maribel has worried a lot more about Karizma’s future now that she’s 18,” Galloway said last year. “Once she ages out of the school system, where does she go? What do you do? … It’s a huge burden physically, emotionally, mentally, trying to plan for the future, and I think there’s a lot of unknowns.”
Maribel now faces a new challenge: how to stave off anxiety and depression that creeps in.
“I never felt anxiety the whole time until she hit the senior year. It’s the worst feeling in the world,” Maribel said.
Between 40% and 70% of caregivers show symptoms of depression, with about a quarter to half of those caregivers meeting the diagnostic criteria for major depression, according to the Anxiety and Depression Association of America.
And as the COVID-19 pandemic raged last year, Maribel began to feel lonelier.
Around 1:45 a.m. May 1, 2020, Maribel had her first full-blown panic attack as she became increasingly scared to fall asleep, her heart and mind racing. Karizma stared at her mother while Maribel struggled.
“I was freaked out thinking ‘This is just it?’” she said as she thought about their life together. The more she worried, she felt as though she would die then and there, which then triggered more fears of what Karizma would do, unable to pick up a phone to call 911.
“It brought back my reality that she can’t do for me what I’m doing for her,” Maribel said.
She talks to Karizma all day with no response, and their social life, like everyone’s, drastically shrank as they quarantined to keep Karizma safe.
“There’s not very many activities for adults in special education so I have to find things to keep her busy constantly, because I can’t just have her sitting in her chair or lying in her bed letting her life go by and her not doing anything,” Maribel said. “I have to use everything I have in me to think about, ‘What are we going to do tomorrow?'”
In the fall, Karizma began uncontrollably vomiting one day, prompting another terrifying stay in the hospital with Maribel once more haunted by the idea of losing her daughter at any minute. When a nearby hospital monitor started to beep, Maribel tensed up and flashed back to the night her daughter went into cardiopulmonary arrest.
They stayed for four days alone, Maribel unable to come and go due to COVID restrictions. A few days after coming home, Karizma began throwing up again and became unresponsive. They returned to the hospital for eight more lonely, terrifying days.
Eventually, Karizma recovered enough to return home. Life resumed its patterns, difficult and uncertain as they are.
WATCH: Maribel Landeros and her daughter Karizma
Maribel Landeros waits with her daughter Karizma Vargas as she gets ready to return to in-person learning May 4, 2021.
Chelcey Adami, Wochit
This wasn’t the version of motherhood Maribel imagined when she tried to steal her baby cousin. Or when she brought her own healthy baby home. But she isn’t giving up.
“I just keep trying … People say children like her get tired at a certain age,” Maribel said. “My hope is she continues to smile and have that great energy in her that sometimes people don’t see.
“I want to be an inspiration to the world. To the people who think they can’t take the next step, who think their life is over.”
On April 21, Karizma received her second dose of COVID-19 vaccine. And at May 4, Karizma got on a bus to return to school in person. Maribel then headed to work out. In a video from Karizma’s first day back, she’s wearing a wide smile.
Signs and Symptoms of Depression in Caregivers (Anxiety and Depression Association of America)
- Avoiding pleasurable or meaningful activities because you feel guilty about taking time off from caretaking
- Repetitive nightmares or intrusive thoughts about the patient/loved one, including the diagnosis, treatments, or future prognosis
- Inability to sleep
- Feelings of exhaustion, severe tiredness
- Feelings of tension
- Inability to concentrate or remember details
- Anxiety attacks about not properly following the medical regimen
- Inability to talk to others about your experience as a caretaker
- Anticipatory anxiety about future treatments for the patient/loved one
- Inability to enjoy activities you once found pleasurable
- Thoughts of suicide because you feel so overwhelmed, worthless, or inadequate
- Chronic irritability
Signs and Symptoms of Anxiety in Caregivers
- Constant fearfulness, worry or impending doom
- Depression that lasts longer than two weeks
- Trouble eating
- Shortness of breath that keeps coming back
- Sleep problems
- Heart racing or beating hard in the chest
- Constant irritability
- Excessive sweating
If you or someone you know are experiencing any of these signs and symptoms, consult your doctor or contact a mental health provider.
Follow reporter Chelcey Adami on Twitter: @chelcey_adami