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At center, Rebecca Sanin, president and CEO of the Health & Welfare Council of Long Island, speaks about WIC changes Jan. 10. Photo by David Luces

By David Luces

Suffolk County officials are working to partner with food pantries and nonprofits to help ensure low-income women and children keep access to basic food and health care in the months ahead as the Special Supplemental Nutrition Program for Women, Infants, and Children undergoes a major change in the months ahead. 

The county offices of the WIC program are closed Jan.14 for a week to upgrade to a debit card-based system, making the transition away from paper checks to electronic benefit transfer cards in accordance with New York State law. 

The facilities will reopen Jan. 22 in limited capacity only to allow time for employee training and EBT card distribution to clients. 

“WIC sites are not only providers, they also serve as powerful community centers.”

— Rebecca Sanin

Suffolk officials expect the WIC program to be back up and running in April, but many are concerned that its recipients should have ready access to food and health care during
the transition.

The officials viewed the new EBT system changes as necessary to modernize and streamline the program for its more than 12,000 Suffolk recipients.  

“I can’t think of no greater priority than making sure babies and children in their youngest years are well fed and never face nutritional insecurities,” Rebecca Sanin, president and CEO of Health & Welfare Council of Long Island, said during a Jan. 10 press conference. 

The council, Hauppauge-based Long Island Cares and Island Harvest of Bethpage have compiled a listing of food pantries in close proximity to WIC offices for families in need during the closure at www.hwcli.com/wic-closings. 

WIC provides more than food for low-income families, it also offers basic health care for children under age 5 including height, weight, blood tests and iron levels. The program provides women and children with access to nutritional counseling, breastfeeding support and peer counseling. 

“WIC sites are not only providers, they also serve as powerful community centers,” Sanin said. “Food security leads to lower infant mortality rates and safer pregnancies.” 

 Paule Pachter, president and CEO of nonprofit Long Island Cares, said he recognizes there are challenges ahead. 

“If the public doesn’t provide the food to the pantries, we don’t have them.”

— Paule Pachter

“When you are trying to provide food for mothers and babies, you are talking about some of the most expensive food on the market,” Patcher said. “Formula, baby food, diapers, specialized food — this stuff is not readily available at the local food pantries.” 

Many individuals rely on LI Cares and Island Harvest for these products. 

“If the public doesn’t provide the food to the pantries, we don’t have them,” he said. “We’ve been preparing for this day for quite some time.”

As part of the preparations for the months ahead, LI Cares has made sure that mothers can have access to these vital products at their satellite locations in Freeport, Lindenhurst and Huntington Station. 

The Hauppauge nonprofit also created mobile outreach units to go into the community to make residents aware of the ongoing closure and changes to the EBT system. They will be visiting Centereach, Bay Shore, Bohemia, Brentwood, Patchogue, Riverhead and Southampton.  

Sanin said WIC agencies have worked very hard to get in contact with clients to pick up  their checks in advance. 

In addition, part of the new system will include the launch of a new smartphone app, WIC2Go, that will let clients track their benefits, find vendors and items. 

“The new system will be much easier for clients,” Sanin said.

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Waves of nostalgia can hit at any time. They tend to wash ashore more frequently in between graduations with their “look back, look forward” speeches and weddings. During these transition phases, we recall the days gone by, whether we’re suddenly comparing a memory from a few years to a decade or more earlier.

We watch our children stretch out surprisingly long arms to take a diploma and shake the hand of a school official, recalling how those hands used to reach up high to grab ours as we crossed the street.

We listen to their confident voices as they share detailed, measured and elaborate opinions about politics, sports, social issues or music. At the same time, we replay the high voices in our heads when they shared thoughts that weren’t so complex, as in “Jimmy Neutron is the best.”

When my wife and I walk around town, we frequently stop outside T-ball baseball games, where we soak in the figurative nostalgia bathtub. Johnny swings at seven pitches before he finally dribbles a ball foul. The exhausted coach encourages Johnny to “run, run, run!” Once the boy reaches first base, a small smile fills a round face that will get longer and leaner in the days ahead, until he reaches the stage where he rolls his eyes when people around him speak of sports because he and his razor stubble have tuned into the world of guitars and rock bands.

For some high school graduates, home has become a launchpad, where the NASA countdown to lift off for college will thrust them to a new location.

And then there are the brides and grooms, whose parents may recall their own weddings even as they smile at the way their children are planning to have people on stilts passing out hors d’oeuvres. The reason no one else thought of it, we think, is because it seems impractical, even though we don’t say that because we don’t want to rain on our children’s parade.

The parents of the bride and groom may remember the people who surrounded them at their wedding, from family members to important friends. Parents may have spent extra time searching through alumni directories or online listings to find the addresses of some of those important friends they haven’t seen in decades to invite them to another can’t-miss wedding.

Parents may stare at their children and recall the long journey from the cooties and a fear fascination with love and romance, to this moment when their child plans to travel the rest of his or her life with this marital partner.

What good does nostalgia do? It offers an opportunity to reflect on the past, while overlaying memories with current experiences. While we’re dancing to music we heard years ago, maybe at our own weddings or on an early date with a future spouse, we may close our eyes and reconnect with the younger version of ourselves. We remember who we were and who we wanted to be. We may laugh, realizing how far we have to go, or boost our resolve as we observe the changes in ourselves and others around us that encourage us to believe that anything, improbable or difficult though it may seem, is still possible.

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Bob Policastro smiles with Ella, a young girl with a respiratory issue. Photo by Kevin Redding

For 25 years, Hauppauge resident Bob Policastro has made it his mission to give medically fragile children and their families a place to turn to — not just for specialized nursing care but love and normalcy.

As founder and executive director of Angela’s House, a nonprofit organization that offers an extensive array of services for families to support children with severe medical conditions, the 57-year-old has worked tirelessly since 1992 to address the gap in New York’s health care system when it comes to helping chronically ill kids.

He said he was determined to be a voice for these parents and kids in the community after experiencing firsthand just how underhelped they are.

A view of one of the kid’s bedrooms. Photo by Kevin Redding.

When his daughter, Angela, was born in August 1989, Policastro said everything went wrong.

“She lost a lot of blood and oxygen, and suffered severe brain damage, that left her very frail,” he said.

As there had been no permanent place on Long Island equipped to handle the technological and medical needs of frail children, Policastro and his wife, Angie, had a tough time finding a specialized home or facility to provide their daughter the nursing care she desperately needed.

They ended up finding a specialty hospital two and a half hours away in Connecticut, but the long drive just to see his daughter left an emotional and physical scar on Policastro.

After Angela died a little after her first birthday, a grief stricken Policastro got to work.

Now there are three large group homes that look and feel more like cozy resorts to choose from, with Angela’s House locations in East Moriches, Smithtown and Stony Brook.

Each location contains 24-hour nursing, local therapists and doctors on hand, and houses up to eight kids between the ages 6 and 16 with varying conditions. The residences offer top-of-the-line medical and monitoring equipment hidden within the warmth and beauty of a caring home.

And although the children that inhabit it are those who have suffered accidents, disease, developmental delays and more, Angela’s House helps provide them the freedom and opportunity to have a simple childhood.

During a walkthrough of the large Stony Brook house, which opened in 2013 and is dedicated to kids who rely on ventilators, Policastro pointed out one of the children’s bedrooms.

It looked like a kid’s paradise, with a bed covered in stuffed animals, the floor littered with toys, Nickelodeon on TV and a window that gives a beautiful view of the property’s nearby woods — a far cry from the hospitals and institutions in which many of the children at the house had been living.

Bob Policastro smiles with Torren who suffers from a respiratory issue. Photo by Kevin Redding.

“For me, it’s about the kids and giving them a safe and loving life,” he said. “I feel really blessed that these kids who have been given a limited lease on life can make the most of it in ways the average person could never dream possible, or can touch people in ways that change them forever. It’s remarkable to see a nonverbal kid, [many of house’s children can’t talk], that has a smile that can light up a room. It’s a great responsibility and I feel honored to be put in a position where I can try to help as much as I can.”

Deborah Church, nurse manager at the Stony Brook location who does everything for the kids from providing medical stability to planning birthday parties to giving them a hug when they need it, said Angela’s House is the best place for these children to be if they can’t be home.

“It’s nice to have the parents smile and know they can go out and have a life, and come and visit their children and see they’re so happy, safe and well taken care,” Church said. “This is a happy home for them to live. These kids can be as normal as possible and always have a smile on their face.”

Gathered around a kitchen table, Policastro and Church talked with 15-year-old Torren, who had been confined to a hospital and nursing home for the first 12 years of her life because of a respiratory illness, about her Sweet 16 next month. Torren will wear an extravagant dress, dance to her favorite band, OneRepublic, and eat nachos with her friends at the house.

Torren, who wheels her ventilator around inside a travel suitcase in order to feel less self-conscious about her condition, said her favorite parts about living in the house are the staff and outings — which include trips to the bank and local stores, as well as pumpkin patches in the fall.

Stephanie Caroleo has been working at Angela’s House for six years.

“The most rewarding aspect is when you come to work and you truly feel like you make a difference every day,” she said. “Every day we make a difference in the lives of these kids, and you see it in their face, in how they speak with you and the relationships we develop.”

When asked what’s kept him motivated for the last 25 years, Policastro pointed to Ella, a little girl in a wheelchair smiling from ear to ear. “That,” he said. “It doesn’t matter what mood you’re in, if you bump into one of these kids and you see that smile, oh man, that’s golden.”

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Remember those punching dummies from years ago? They were like Weebles wobbles, where you could smack them as hard as you wanted and they would come popping up for more.

I think we need some kind of equivalent device for modern technology. Sure, cellphones allow us to talk to each other from anywhere in the world, see each other’s faces and share pictures on our way to school, to restaurants or to the most mundane places, but they and their cousins, the computers, can also be like sand in the bottom of our socks.

My daughter sends pictures of herself from the car to her friends. Why? What do they see in these pictures? In many of them, she doesn’t even seem to be centered and her eyes are closed — maybe that’s a generational complaint. Anyway, if these friends were in the car with her, they wouldn’t be looking at each other. Rather, they would be sending pictures of themselves to other people in other cars. Modern technology has encouraged parallel play to such an extent that phone users prefer to interact from afar. When I see my daughter smiling at these ridiculous pictures while mumbling something incoherent to me, I’d like to remove the phone from her hand and toss it out the window.

It would cost way too much money to do that every time she annoyed me and, worse, I might hit someone with her phone.

That’s where the new device comes in. I’d like to have some version of her phone that I could pretend-smash into a thousand pieces.

That frustration doesn’t just involve technology with my children. I have had numerous problems with my computer when I’m on deadline and I can’t afford to stare at a colorful circle that’s freezing my system or a cursor that refuses to respond to my movements across the page.

Sometimes, I feel as if technology is experimenting with me. There’s someone sitting behind a monitor, using my phone or computer’s camera and is waiting for just the moment when I have no extra time and is sending a “kill” signal to my computer.

“Wait, no, no, no!” I shout at the disobedient machine. “Please, please, please, I have to send this now.”

“Heh, heh, heh,” a mischievous elf who decidedly does not work for Santa Claus is thinking as he watches my panicked face.

Instead of pushing the same unresponsive button a thousand times, I’d like an inflatable computer that I can throw across a room, kick as hard as I can or punch without injury. I’d also like to hear the sound of breaking glass as I’m doing it, as if the destructive force I’m applying is somehow damaging the computer as much as it’s upsetting my psyche.

I know breaking real glass and destroying real technology would not only be bad for me and my bank account, but it would also create waste and pollute the environment. I need something that can give me the faux satisfaction of my caveman instinct to strike back at something that’s bothering me.

I can type pretty quickly on my computer, but my thick fingers and the small keyboard on a smartphone, coupled with a spell-checker that hates the last names of my contacts, are a combustible mix. Maybe the next time the computer autocorrects something and then adds an error, I can hit a button that can give me a virtual sledgehammer so that I can virtually shatter my screen into a million pieces. Of course, I’d need the phone to work almost immediately after that because someone, somewhere needs me to send a “LOL” to their mistyped text message.

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We are all proud of our children. It’s part of the perks of becoming a parent. We beam when they can walk, we celebrate what they say. We applaud their gold stars on their homework sheets, positive comments from their teachers, and their contributions to transformative musical performances that echo long in our minds.

Recently, I attended one of my daughter’s volleyball matches. She is on a new team and I didn’t know most of the other players. As soon as the first set started, it was clear that two of the girls were the leaders, covering tremendous ground to get to a ball, setting the ball from impossible distances to the net, and flying high in the air to spike a ball onto an open spot on the floor.

These two girls were inspiring their teammates with their play, even as they seemed to demand more from themselves with each set.

During the downtime between sets, parents came over to share congratulations, to offer apple slices, and to step away from the loud gym where other girls and their parents were screaming at and applauding each point.

Recognizing this will be a long season and that we’re in this together, I started chatting with several of the other parents, especially when all the children dove headlong into their cellphones during their downtime.

“My daughter is No. 7,” said a beaming woman whose daughter was about 4 inches taller than she was.

“Great,” I nodded appreciatively. “How long did it take you to drive here?”

The conversations were fairly mundane until one of the fathers of the two stronger players shared a plug to charge his iPhone.

“Your daughter is a great player,” I acknowledged.

“Thanks,” he said with a smile. “She’s a survivor.”

“Excuse me?” I asked.

“Yes, she had cancer when she was 1 year old. The pediatrician was doing a routine exam and found something. We sent her for tests and, sure enough, she had cancer.”

“Wow,” I said, stunned that the conversation wasn’t about the weather, if a ball was in or out in the last set, or what we should all do for dinner if we had to stay much longer.

“We went to a bunch of doctors and, finally, we decided to have surgery. Good thing we did, because it was malignant,” he offered.

She probably doesn’t remember it, I thought, because she was too young.

“She actually got cancer again when she was 6, and had to have surgery and chemo when they found out it was malignant again,” he said.

“She’s recovered well,” I admired.

She isn’t particularly tall, but she flies around the court, setting the ball from almost any angle without ever seeming to tire.

“Oh, yeah, well, she goes for testing regularly now, just to be sure,” he said.

She volunteers at a hospital where other children have cancer. She encourages other children and tells them that she knows how they feel. When they seem to doubt it, she shows them a copy of a picture in his wallet of his two daughters when they were 8 and 6. The older girl towers over the younger one, who is impossibly thin and bald.

Looking into this father’s face, I could see that he wasn’t only proud of the difficult journey his daughter had taken but he was inspired. So, too, as it turns out is someone else in the family.

“Yeah,” he said with a nod. “It’s why her older sister is now going to school to become a nurse.”

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Participants from the Walk a Day in Our Shoes event Sunday, Sept. 18, smile as they start their trek. Photo from Angela’s House

By Victoria Espinoza

More than 700 people walked a day in someone else’s shoes this past weekend.

Angela’s House, a Hauppauge-based nonprofit organization that offers support for families and children living with severe medical conditions, hosted its second annual Walk a Day in Our Shoes 3K Walk fundraiser at the Holtsville Ecology Center Sept. 18.

$45,000 was raised to help bring awareness to the organization’s cause. Limited options exist for families with children born and diagnosed as being medically frail, chronically ill or suffering from any type of life-threatening conditions when or if they leave the hospital.

Bob Policastro, founder and executive director of Angela’s House, said he was unaware of the limited options parents have until his daughter, Angela, suffered severe brain damage during birth, which left her very medically frail and in need of nursing care.

“The process is incredibly painful,” Policastro said in a phone interview. “You’re in this situation no one wants to be in, and you need to figure out how you’ll be there as a parent for your child.”

Participants from the Walk a Day in Our Shoes event Sunday, Sept. 18, smile as they start their trek. Photo from Angela’s House
Participants from the Walk a Day in Our Shoes event Sunday, Sept. 18, smile as they start their trek. Photo from Angela’s House

Policastro said he and his wife, Angie, had a hard time finding a specialized home or facility near where they lived in Hauppauge and eventually settled on a specialty hospital in Connecticut. The lack of services locally put additional emotional and physical strain on the parents because they were forced to travel more than two hours to spend time with their daughter in Connecticut. Angela eventually succumbed to her illnesses and died shortly after her first birthday.

The Policastros created the nonprofit in 1992 and since then have opened three homes in East Moriches, Smithtown and Stony Brook where children with serious medical conditions live and are cared for 24 hours a day.

The funds raised from the event will help continue the care in these three homes, as well as programs to help other families learn about the resources available for them and their loved ones who are struggling with life-threatening medical issues.

One mother wrote about her experience with Angela’s House. Her son Johnny required a tracheotomy and a feeding tube around five years old. She said as his condition worsened, she was no longer able to take care of him at home, and that’s when she found Angela’s House.

“Bob and his wife Angie have been working tirelessly to have a home built for children [whose] medical needs were too great for families to care for their child at home but whose family is on Long Island,” she wrote. “Johnny spent nearly 16 years at Angela’s House and during that time he has received excellent medical care and a tremendous amount of LOVE. The wonderful nurses and aides tirelessly provided Johnny with kisses, hugs and jokes. Johnny rewarded them with the simplest of gestures … his smile.”

The day included face painting, a D.J., a zoo and lunch provided by Applebee’s.

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