Sixteen-year-old Jessica Pastore tap dances, swims, goes to the theater, sings in her church choir and “always has a smile on her face,” according to friends and family. In fact, she is well-known in the Bloomfield community for her cheerful, bubby personality and game-for-anything attitude.
What makes Jessica remarkable is that she is blind. Diagnosed with an inoperable brain tumor at the age of five, Jessica last year underwent surgery to relieve the pressure on her optic nerve. Instead, when she awoke from the operation her vision was gone.
Jessica’s parents, Tony and Myra Pastore, sat down with Patch this week to discuss their daughter and Talent Time, a charitable theater company based in Bloomfield, recently approached the family about performing a show for Jessica.
“When I was contacted about the show they explained they do it to raise money to help people with their medical bills. I said, 'Is there a family who needs it more?’,” recalls Mayra. “Because it’s not like we’re in danger of losing our house or anything. They said, ‘We want to do it for Jessica’.
“You learn a lot about your community when something like this happens,” she says. “People have been amazing.”
The Pastore family lives in a neat, quaint house on a modest block in Bloomfield. Inside the home, photographs of two smiling children are displayed proudly, with crucifixes draped gracefully over the frames. It is late at night, a time when Mayra and Tony can finally relax after a long day of caring for Jessica and her 14-year old brother Danny, who is profoundly autistic.
“We have a daughter who struggles with a brain tumor and now she's blind,” said Tony matter-of-factly. “We have a son who was diagnosed with autism at age two. You have no control over these things. The battle to save Jessica’s sight is over, but we have to try to protect the other things that allow her to live. If we're fortunate, the tumor stays the size it is and we continue on.”
Mayra adds, “We want to keep life as normal as possible. That keeps her happy. The last thing I want her to do is get depressed.”
The Pastores say there is a lot of humor in their home (“we watch a lot of sitcoms”) and that their optimism is inspired by Jessica's upbeat attitude.
“Jessica gets up every day and has a positive outlook,” marvels Mayra. “I don't know how she does it, but if she can manage it, the rest of us can take a cue from her.”
Each day begins the same way, with a knock on their bedroom door at 6:15 am.
“Every day you get up and the black hole of despair is ready to suck you in, and then comes the knock on the door—” (Mayra knocks on the table) – "and there she is. I’m here. I'm dressed. I'm ready to start the day.” She shrugs, smiling. “I get up and I deal with it.”
During the summer, Mayra is the children’s main caregiver. She organizes their day with small, manageable activities like playing in the backyard pool she calls “our salvation.” Jessica, she says, listens to music, talks on the phone, is visited by friends or her Braille teacher.
“My neighbor took her for a walk in the park today,” says Mayra. “It was so nice of her. Jessica really enjoyed it.”
When Tony comes home, it’s his turn to help, says Mayra. “It's not like because Tony's worked all day, he gets his pipe and slippers when he comes home. No. He gets the next shift.”
Mayra and Tony are thankful that their marriage has weathered the storm over the years, but they acknowledge that the delicate balance of their lives often depends on help from the outside world. Doctors, therapists, counselors and teachers can provide practical assistance, but it’s their devoted network of family and friends that has sustained them emotionally through the years.
“Betty Salerno, Jessica’s sixth grade teacher at Demarest, saved my last shred of sanity last year. She stayed overnight with her in the hospital at New Brunswick,” says Mayra. “I would never have asked her to do that. Her counselor at the high school, Cindy Sherman -- there wasn't a day I didn't get a card or a message or a call from her. Mary Shaughnessy has been great. Chris Jennings, her principal at the high school, has been outstanding. Eileen Donatello, Jessica’s former gym teacher, came over to have lunch with her. Julie Smith, an instructional aide, came whenever I needed her over 4 1/2 months, just so I could go food shopping or go to work. I don't forget those things.”
Just taking Jessica to dance class can be stressful, Mayra admits. "I used to just pull up in front of the school and let her out. I can't do that anymore. Very few people can handle Danny so I have to take him along. But I can't walk both of the kids inside by myself. Sometimes you wind up calling 17 people before you find someone who can help. It's frustrating."
Next week, Jessica and her brother will be attending Camp Fatima, a camp for special needs kids. Mayra and Tony said it will be the first time they have been alone for 17 years. "We have to make the most of it," they said.
In the meantime, this week they are looking forward to attending The Wedding Singer at Bloomfield High School in Jessica's honor.
"The experience [of the show] has been overwhelming, in a good way,” they say. “When Jessica walked in, they serenaded her. The whole cast made her feel special.”
"The Wedding Singer" will be performed at Bloomfield High School on Thursday, Friday, Saturday, August 9, 10 and 11 by the Talent Time Theater Company in honor of Jessica Pastore. Proceeds from the show will be donated to the Pastore family to help defray their medical costs.
For tickets or more information click HERE or call 973-951-6123.
See The Talent Time/Charles Seller Foundation Facebook page.
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