Story and photos by Chelcey Adami
Editor’s Note: Author Chelcey Adami met Maribel Landeros and Karizma Vargas when she wrote about Karizma’s quinceañera. Adami has since become close friends with Landeros.
As light cascades through window shades in an East Salinas bedroom, Maribel Landeros opens her eyes and looks across the pillow at her daughter, Karizma.
The 23-year-old is already awake and staring at her mother expectantly with deep brown eyes.
“Buenos días, mi amor,” Maribel coos. Karizma smiles wide in return and makes excited little sounds with rasping breaths. Maribel’s mind quickly turns to what she needs to do that day, and she tells Karizma her plans as the two lie in bed.
“She looks so cute when she first wakes up and then I think, ‘How can I get up and be sad?’ This little girl is staring at me with a big smile and ready to live life,” Maribel said.
Maribel soon gets out of the wooden four-post bed to begin their morning routine. The 49-year-old pulls back the sheets and begins to change her daughter’s diaper. Maribel cleans Karizma’s eyes and rubs lotion on her daughter’s body. She gives Karizma her daily medications and breakfast through a special feeding tube. Maribel lifts Karzima’s limbs one by one and pulls the clothes on while pleading with her daughter to relax her stiffening arms.
Maribel then lifts her roughly 90-pound daughter, careful to keep her head upright while placing her in a wheelchair. She brushes her hair, puts moisturizer on her face, and brushes her teeth using a suction machine like dentists use to make sure the water doesn’t cause Karizma to choke.
Maribel has done these daily steps thousands of times over the last 22 years.
The Salinas resident was thrilled when Karizma was born healthy and happy, but her entire world changed when, as a baby, Karizma suffered a serious burn accident and was intubated — later resulting in severe brain damage and the inability to walk, talk or communicate beyond facial expressions.
In many ways and for all these years, Maribel has provided the same loving and exhausting care that one gives a newborn, but her adult daughter will not reach many of adulthood’s milestones. Karizma won’t go to college, get married, or get a job — a reality that Maribel is keenly aware of. “It’s hard,” she said. “There’s a lot of emotions this year, and it’s different because time is passing.”
Every 25th of September, Maribel can’t help but relive the day of Karizma’s 2002 accident minute by minute. The feeling starts to creep into her body about a week before, and it never gets easier, she said. “As she gets older it gets harder because I think of what could have been,” she wrote on social media, recognizing the day this year. “I wouldn’t be normal if I didn’t think that. I think of what she would have become.”
And she remembers that the day of the accident was the last time her daughter called out for her, crying, “Mamaaa, mamaaa!”
While these thoughts haunt her at times, Maribel also feels blessed by the daily moments she does have in her daughter, and she is determined to continue to live a full life with Karizma — buoyed by her daughter’s will to live.
“Sometimes I sit there and just admire her and get in my feelings,” Maribel said. “I think, ‘Wow, you’ve been through so much and how am I not going to get up for us?’ She gives me the superpower in the morning to get through my day.”
A life’s purpose
The need for caregivers in the U.S. is increasing, due to people with disabilities living longer, along with a growing older adult population, according to the Centers for Disease Control and Prevention (CDC). Caregiving has emerged as a significant public health issue that impacts the quality of life for millions across the country.
Approximately 22% of people in the U.S. are caregivers like Maribel, who provide regular care to a friend or family member with a health issue or disability, CDC data from 2015 through 2017 shows. More than half of caregivers reported that their declining mental and physical health compromised their ability to provide care, and more than a third struggle to get sufficient sleep.
Karizma Vargas — with the devoted support of Maribel, her father Edgar Vargas and other loved ones — has lived a rich and fully experienced life that includes big celebrations, extensive travel, and a tendency to touch lives around the world. It’s been extremely difficult at times, though, and as her primary caregiver, Maribel focuses on staying physically fit in order to care for Karizma while addressing the mental and emotional challenges. This includes worry about one of life’s certainties.
“I fear for my death before her, because what would happen to her? And then I fear her death before mine. What would happen to me?” Maribel ponders. “What am I going to do without her? What is my life’s purpose after that?”
Telling her story and connecting with others is part of that process. “I want to tell the whole world what I’ve been through,” Maribel said. “I’ve been reliving the toughest times, and I didn’t realize that they were that hard until I talked about them.”
“Sometimes I sit there and just admire her. I think, ‘Wow, you’ve been through so much and how am I not going to get up for us?’ She gives me the superpower in the morning to get through my day.” Maribel Landeros
As a child, Karizma attended school and participated in many extracurricular activities such as sports and theater with the support of an aide. Since Karizma has aged into adulthood, Maribel has encountered more challenges and fewer resources for people with disabilities.
Since turning 21, Karizma is no longer qualified to receive medical care and therapy under California Children’s Services. Now she goes through MediCal, which has more restrictions and approval takes longer for much-needed medical referrals, Maribel said. She often takes Karizma to the emergency room at a local hospital because she struggles to get primary care appointments for her.
“From the time of her accident to the time she turned 21, all that care was amazing,” Maribel said. “Now it’s just adulthood and it’s different. It’s harder.”
Time ticking
Like many caregivers in her situation, Maribel developed clinical anxiety during the beginning of the pandemic in 2020 and experienced her first panic attack, terrified she was dying and would leave Karizma alone and vulnerable.
As lockdowns lifted, her fears shifted to what life would be like after Karizma moved on from the Arthur B. Ingham adult day program. Maribel hasn’t been able to line up another program for Karizma following her graduation in June 2023.
Karizma was rejected from two programs, likely due to her high level of care — which includes use of diapers, a feeding tube, medications, and nebulizer treatments — and Maribel decided against another program, which she described as “awful” following a tour.
Maribel got her first full-time nurse to provide her with some support in October 2023. Monday through Friday, the nurse helped Karizma with her lung treatments, massage, range of motion exercises, transfers to and from her wheelchair and bed, diaper changes, feeding, turning on TV or YouTube, taking her for walks, and more.
Maribel used this time for intense workouts so she can be strong enough to lift her daughter multiple times a day, to clean the house, run errands and more before the nurse left in the late afternoon. It was all a trade-off, with Maribel adjusting to the loss of privacy and trusting a stranger to be in her home, caring for her daughter.
The nurse went on maternity leave in early August, and Maribel looks forward to her return — taking on all the regular daily activities while trying to address her daughter’s continuing medical challenges such as declining muscle mass and minor surgeries.
In the meantime, Maribel keeps looking for ways to keep her daughter stimulated. “I have to start looking for activities, things to do, or I’m not going to feel comfortable,” Maribel said. “I have to do self care for myself in order for me to take care of her but I cannot just leave her here. I know people don’t get it, but they’re not living my life.”
People frequently will tell Maribel that it’s OK for her to do things around the house while Karizma waits in her chair. “But they can just tell their kids to go to their room and play or read a book, and they’ll keep busy by themselves because they’re able-bodied. My daughter is not,” Maribel said. “Being a mom and just leaving her there is hard. When she looks at me, it just makes me feel bad.”
Ups and downs
This is the rhythm of being a caretaker — ebbs and flows of gains and losses, inspiration and deflation, hope and despair.
Maribel’s friends, cousins and brothers have children growing up, and while she’s happy for them, it can sometimes be a painful reminder that Karizma can’t take the next steps in life’s transitions. “She’s not going to college, she’s not getting married or having babies, or will be independent on her own,” Maribel said.
When Karizma turned 21, Maribel planned a big party in Las Vegas to celebrate, just as she has for each milestone, including her quinceañera in Salinas.
As pandemic-related restrictions have subsided, Maribel and Karizma have started traveling again — a key part of their survival that eases the feelings of being stuck in their home.
Maribel said she often finds that strangers in other countries are more gracious and understanding about Karizma’s disabilities. “I feel alone here in our country, versus when I travel, especially to Latin (American) countries,” she said. In those countries “every five steps, somebody’s ready to help you, and everybody loves her smile and she puts smiles on everybody’s face and those are always highlights for me.”
Caregiving can be a rollercoaster with many beautiful and gratifying moments, as well as difficult sharp turns, Maribel said.
“That’s a part of living this life with a special needs human. There’s ups and downs, but you just have to know that when you’re down, you’re going to come back up … When she looks at me at 5 a.m. and looks so beautiful with her smile, how can I not get up for that and conquer the world for her?”
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