LINCOLN — For years, the saga of the never-ending flow of alcohol from the tiny Nebraska village of Whiteclay to the adjacent Pine Ridge Indian Reservation focused on drunken people on the street.
They were a group of a dozen or more people without homes who drank openly along the dusty highway from beer cans wrapped in paper bags until they were in a stupor. Trash littered the sidewalk, which smelled of urine and worse.
But the narrative of Whiteclay changed dramatically after people learned the story of Nora Boesem, a former nurse who had fostered more than 200 children — many from the reservation — who suffered from fetal alcohol syndrome. She later adopted many of them.
These were the then-unseen “victims” of Whiteclay, children of women from the officially dry reservation who had consumed alcohol during their pregnancies just steps across the South Dakota border into Whiteclay, Nebraska.
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Once the public and politicians learned that innocent children – and not just people on the street – were being hurt by the torrent of alcohol flowing from Whiteclay, political wheels began turning to close down the beer stores.
The tide had turned in the decades-long effort, according to Dennis Carlson, a retired Lincoln attorney who was among the activists leading the push to shut down the Whiteclay liquor outlets, which culminated in 2017.
“She was the one who really touched the hearts of a lot of people,” Carlson said. “It wasn’t just 4 million cans of beer being sold through these beer stores. The public was able to see that these beer sales impacted innocent lives.”
But now Boesem, 53, who moved to Houston two years ago seeking better medical care for her kids and due to a marriage breakup, is in financial trouble. Through a combination of the divorce, misfortune and the burden of caring for 14 disabled kids – 7 under age 18, including 3 grandchildren – she’s at the end of her financial rope.
There’s an $11,000 bill to fix the 12-year-old family van — the only vehicle large enough to haul the kids with wheelchairs and to all of her kids. It was struck by an uninsured and unlicensed motorist. There’s $43,000 in unpaid medical expenses for her kids and an overdue mortgage payment.
And her fiancé, Ken, who takes turns with the almost-daylong childcare duties between working two jobs, has $30,000 in medical bills from an accident he was involved in.
Then there’s cutbacks in Medicaid – the federal program that helps provide medical and in-home care for low-income families.
A caregivers’ program that once provided up to $60,000 a year to hire outside caregivers to watch the kids while she works has been slashed under congressional budget cuts backed by the Trump administration. Now, Boesem said she was told the program will provide about $900 a year.
Despite doubling her caseload as an online therapist — she has a master’s degree in counseling — and teaching three online classes through Walden University, Boesem is seeking financial help.
“I’m not good at asking for help. I would rather be the person offering help,” she said between tears. “I feel awful and guilty that I have to ask.”
She’s tried her relatives. Her mother and sister helped pay the downpayment on her 1,100-square-foot house. She’s tried friends, but they are tapped out. Boesem said she can’t qualify for loans, and she knows of no aid programs for her situation.
One colleague in educating people about Fetal Alcohol Spectrum Disorder (FASD), however, has started a GoFundMe account. As of Friday, it had collected $1,373.
“None of that money will go to anything other than those kids, I can guarantee you that,” said Deb Evensen, a therapist based in Homer, Alaska, and a former teacher who educates families and educators about dealing with FASD kids.
Evensen, who had worked with Boesem on some educational programs on the Pine Ridge Reservation, said anyone facing the calamities that beset Boesem, with such bad luck and so many high-need kids to care for, would be in the same desperate straits.
“This is an example of a really good person who’s trying to live her best life, who is giving children who didn’t have a chance at life, a chance at life,” Evensen said in a telephone interview. “I don’t know if there’s a higher calling.”
“Sometimes,” she added, “life just throws you too much.”
FASD does throw a lot at you, according to Evensen and Boesem.
Prenatal consumption of alcohol can cause a variety of physical and behavioral problems. Fetal-alcohol syndrome, which is at the severe end of FASD, can include facial and skull deformities, frequent seizures, intellectual disabilities and learning disorders.
The average life expectancy of someone who has FASD is 34.
Sometimes, Evensen said, internal organs develop in the wrong places due to prenatal exposure to alcohol. Multiple surgeries are required to make things right.
“Alcohol changes everything in a child’s body,” she said.
Boesem’s oldest adoptee, 24-year-old Dontae – who was born with twice the legal limit for driving in his blood – was hospitalized last week for frequent seizures occurring 40% to 50% of the time each day.
He is being evaluated for a deep brain implant to help quell the seizures through the University of Texas Health Science Center – a facility, Boesem said, that has greater treatment options than were available in South Dakota.
The second oldest, Gabe, 19, is also in the hospital, as of Friday for mental-health-related issues. Also on Friday, another child had to be rushed to urgent care for an extreme allergic reaction.
Cognitively, Dontae, 24, has the development of a 5-year-old, Boesem said. Another boy, Moe, 19, has the development of a 2-year-old, she explained.
Three of Boesem’s current group, the youngest, are grandchildren. She said she thought she would be their caregiver only temporarily, but at least one of their parents had FASD. Due to struggles with meth, alcohol and mental-health issues, they couldn’t care for them, she said.
“They were never meant to stay … but I already had a relationship with my grandchildren,” Boesem said. So she took them in rather than allow them to go to a foster home.
Many of Boesem’s kids were once foster children, which came with some government payments for their care. But eventually, Boesem and her former husband adopted them to give them a permanent home, and any payments ended.
You grow attached to such children, she said.
“After three to four years, it’s pretty hard to just let go when all the kids are by then ‘a group,’“ Boesem said. “It would have been traumatic for everyone to move them … it would have been life losing a sibling.”
“Plus, honestly, most people aren’t stepping up for kids with such difficult and different abilities,” she said.
When a reporter visited Boesem’s double-wide trailer home in Newell, South Dakota, in 2015, she was able to hire a caretaker to oversee the nine kids then in her care.
It was a chaotic scene, of children battling physical deformities and behavioral problems. One 3-year-old hurled a plastic toy against a wall, a 9-year-old boy with wrists permanently bent at a 90-degree angle paced the living room floor, and a 4-year-old girl — fed via stomach tube – was cradled in Boesem’s arms.
Now, Boesem does therapy sessions for 50 minutes via a video hookup. Then she’s back “changing diapers.” She swaps duties with Ken, her fiancé, who she said is sleeping 4 hours a night between two jobs training and boarding dogs.
The car accident, which damaged their aging Toyota Highlander, and the resulting $11,000 bill not covered by insurance, is what really put the family behind, both Evensen and Boesem said.
Boesem said she’s been able to manage with a two-door vehicle she bought for $900, but has to hire an Uber to haul a couple of kids who require wheelchairs to medical appointments, which are frequent for FASD kids.
“I thank God for that car every day because it runs. But the kids are like, ‘when can we go to the park?’ “ Boesem said.
She’s just hoping to get her bills and finances straightened out, so she can spend more time with her family. Moving away from their rough neighborhood in Houston – one child was stabbed, a family dog stolen and a man murdered at a nearby store – is a goal but cannot be afforded, Boesem added.
“I’m just working all the time to try to survive, and my kids deserve better than that,” she said. “They deserve more.”
This story is provided by States Newsroom, a nonprofit state news network and Blox Digital content partner.
