ALBUQUERQUE, N.M. — They worked hard to bring her home so many times.
Sharla Balestri came home for the first time in 1969 when she was six days old and the most beautiful, perfect little girl Marjorie O’Connell could have ever hoped to adopt.
It became harder to keep her home after that.
Months later, Sharla could not hold up her head, could not un-clutch her hands. The diagnosis was dire – cerebral palsy, a neurological disorder that left her unable to control her body below her neck.
“I remember the social worker asking if I wanted to give Sharla back,” recalls O’Connell, a retired teacher. “And I told her no, I would never give her back. I wouldn’t give away a cat, let alone my daughter – and I don’t like cats.”
To her, Sharla was still the most beautiful, perfect little girl.
In those early years, developmentally disabled children were often sent to live in specialized facilities in Fort Stanton or, in Sharla’s case, the Los Lunas Hospital and Training School. But O’Connell said she always believed that with assistance and community support Sharla would do better at home.
In 1990, the Los Lunas and Fort Stanton schools were ordered to close and their hundreds of clients returned to the community as part of a landmark federal court decision known as the Jackson lawsuit.
Sharla was the first client to go home.
In the many years since then – Sharla turns 50 this week – O’Connell and husband, Rick Marquis, have continued their efforts to keep her at home.
That has not always been easy.
In 2002, they hired a contractor to build their dream home in Corrales. But as the walls began to crack and the foundation to buckle, they were forced to sue the contractor in 2008 for failing to use sufficient concrete in the support walls to bear the weight of the structure. The lawsuit was eventually settled, the house razed and a new home with three bedrooms, an open floor plan, forest green steel roofing and solar panels was constructed.
“We designed the home for Sharla,” Marquis said.
Then, on Oct. 9, a fire started in a side building when a surge in one of the solar batteries caused an explosion, sending toxic smoke into the home. The family escaped, but the home suffered major smoke damage. Four months later, the family is still waiting for the insurance company to complete repairs.
In the meantime, the family has been moved from hotel to hotel and finally into a two-bedroom cottage in a senior living community in Rio Rancho. The home is cluttered with plastic containers full of items rescued from the home, O’Connell’s quilting supplies and Sharla’s collection of M&M’S memorabilia.
Fighting with the insurance company to get back into their home is not the only battle the family is waging – how they get Sharla to and from that home, to and from anywhere, is also a challenge.
In 2017, they began searching for a bigger van to transport Sharla and her wheelchair and a nephew with Down syndrome who lived with them at the time. They became enamored with the GMC Savana, a full-size van that features passenger doors on both sides of the vehicle – at least it did until 2015.
“Which meant we needed to find a used 2014 Savana,” Marquis said.
O’Connell tracked one down at a dealership in Wexford, Pa., and it had only eight miles on it.
“You cannot imagine our elation,” she said. “It seemed perfect.”
The van was shipped to them sight unseen after they said they were assured that it was in good condition.
Marquis said mechanics discovered that the undercarriage was so severely rusted, likely the result of being in a flood, that it would need the chassis replaced.
“We’ve been fighting this now for 1½ years,” Marquis said. “Something is going to break or come loose. It’s an accident waiting to happen, and who will it kill?”
Michelle Malcho, director of Buick and GMC Communications in Detroit, issued a statement by email Friday: “We reviewed his case again this morning and our ongoing offer to treat the rust on his GMC Savana is still available for him. We have had multiple reviews of his case, inspected his vehicle and believe this is the best course of action.”
But Marquis said that treating the rust rather than replacing the chassis won’t fix the problem, because the rust permeates the interior of the chassis.
“They just want to spit on the frame and call it fixed,” he said. “Look, I’m a pit bull. I won’t stop fighting this. My priority is Sharla.”
So they continue the fight, continue to wait, continue to look forward to the day when they can safely drive Sharla back to the place she belongs: Home.
UpFront is a front-page news and opinion column. Comment directly to Joline at 823-3603, firstname.lastname@example.org or follow her on Twitter @jolinegkg.