Wait­ing on a home­com­ing

Albuquerque Journal - - FRONT PAGE - Jo­line Gu­tier­rez Krueger

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. It wasn’t. 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

JO­LINE GU­TIER­REZ KRUEGER/JOUR­NAL

Mar­jorie O’Con­nell, left, gives daugh­ter Sharla Balestri a drink in their tem­po­rary home at a se­nior liv­ing com­mu­nity in Rio Ran­cho. At right is Rick Mar­quis, who has been Sharla’s father for nearly 20 years. On Sharla’s lap is Cinco, her ser­vice dog.

The par­ents of Sharla Balestri say they were thrilled to find this 2014 GMC Sa­vana van at a Wex­ford, Pa., deal­er­ship, be­cause later mod­els do not have pas­sen­ger doors on both sides. But their hap­pi­ness turned to frus­tra­tion later when they learned that the chas­sis of the van was rusted through.

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