MIDDLETOWN – Orlando Mendoza has slept on the floor of his daughter’s room since she came home on Oct. 1. He is jolted awake by even the slightest beep of one of the machines that keep her alive and healthy.
Having Sky Mendoza home for the first time in nearly two years is a blessing after the devastating auto accident on Nov. 17, 2018, that took the life of her pregnant stepmother, Jennifer Parisella, and left the now 16-year-old girl paralyzed from the neck down.
“It’s better,” Sky mouthed, and her mom, Lashanta Brown, translated.
She’s seeing people in person for the first time in almost two years. People she could only see through a video screen before. Now they bring her blankets and more pictures for her to hang on her new walls. And they lift her spirits more than they could have from more than 100 miles away at St. Margaret’s Center in Albany, a pediatric nursing facility, where she received treatment for more than a year.
For a family that was dealt one of the roughest of hands 22 months earlier, light is starting to peek out at the end of the tunnel. But it’s not fully illuminated yet.
A long road home
Mendoza will no longer have to be on the run for 18 hours a day. Before Sky came home, he would wake up for work at 3:30 a.m. and leave by 3 p.m. to drive to Albany, only to get home, if he was lucky, by 9 p.m. to check in on his 14-year-old son, Orlando Jr., or “Papi.”
He’d get a wink of sleep and then wake up the next day to do it all over again.
“With her being way up there and me being here and working and trying to take care of everything, it was just a lot,” Mendoza said. “I didn’t really have time to be able to do a lot of things.
“Now that she’s home, she’s in Middletown, now I can get to go to the cemetery a lot more and see Jennifer and leave some flowers. Before I was constantly on the run, going to Albany and trying to fit in time for everybody. I’m one person. … It makes life easier, for sure, 100 percent.”
He took off work these last few weeks to train with Sky’s mom and grandmothers to learn how all of the machines Sky relies on work, what she will need and how she can live her full life at home rather than in the pediatric nursing facility two hours north in Albany.
That training kicked in Sunday night when Sky’s blood oxygen level dropped suddenly because of buildup in her lungs that kept her from getting the air she needed. Mendoza was able to treat her and help her, but without other machines she had access to at her former facility, the problem will just keep happening.
He’ll have to pay almost $200 out of pocket to get that machine into their new four-bedroom apartment until insurance steps up and kicks in.
On top of the medical expenses that seem to come up nonstop – and the incessant phone calls he has to answer day and night to work out deliveries, insurance coverage and everything in between – there’s not much time or money left to build Sky’s forever home on a plot of land donated by the city of Middletown earlier in March.
Building a forever home
A dream that started in March when the city of Middletown donated a small piece of land to a trust in Sky’s name quickly fell apart once the novel coronavirus shut down the state for months.
For more than six months, no one could see Sky unless it was to visit outside her window or by video. The urgency to get her home, where she wouldn’t be alone, amped up, Mendoza said.
Mendoza has a contractor lined up to build a house on Broad Street big enough for Sky’s equipment and machines, and with enough space so she can move around mroe freely in her motorized wheelchair.
But costs have significantly gone up. Volunteers who lined up to offer their services at a discount, or for free, lost work for months and will spend the rest of the year trying to recoup.
The $24,000 Mendoza said the trust in Sky’s name has garnered in the last few months to go toward the project will only make a small dent now. Prior to the pandemic, the project was estimated to cost at least $130,000, and that was when supplies were less expensive.
He’s looking into taking out a loan to cover the rest of the costs, but on top of the accumulated medical bills and his other regular expenses, Mendoza says, it’s becoming too much.
The Middletown Housing Authority, where Mendoza has lived with his son for years, renovated a four-bedroom apartment for the family of three to live in until Sky’s house is built.
Sky has a bathroom big enough for her to get the care she needs every day. Her room is decked out with pictures and signs like “This Girl Can” covering almost every inch of the all-white walls. There are three bedrooms upstairs, one for dad when nurses start taking care of Sky full-time in November so he can go back to work, another for Papi and a third that is filled with stuff Sky needs.
“She’s very grateful for everybody that did contribute to anything that they did, whether it was just GoFundMe or just supporting her. … The goal is to get her home, get her where she is more comfortable,” Mendoza said.
For now, the Mendozas are thankful for a roof over all of their heads and to not be split up across the state. But they’re still looking toward a future where Sky can have a home of her own to roam independently without walls and hallways in her way.