Faces of Long Island celebrates the uniqueness of everyday Long Islanders. In their own words, they tell us about their life experiences, challenges and triumphs. Newsday launched this social media journey into the human experience to shine a light on the diverse people of this wonderful place we call home.

‘When the fire happened, all I thought about was my old stuff; the family history in there. All my father’s books were all damaged.’

Bay Shore

“The fire happened on the morning of March 29. I had been feeding cats in the backyard and some had kittens. I let some in the house. I was able to get a mother cat and three kittens out because they were close to the door. A police officer saved two more kittens and a cat.

“There were four adult cats and five young cats that perished in the fire. There are still cats outside and we go to the house every single day to feed them. Some people gave me shelter, bedding and cat food and I worked with a rescue place that spayed and neutered them. Things like that show you people’s humanity to help you in times that are difficult.

“I’ve lived in this house all my life because it was my parent’s house. I’m 61, I was born in Bay Shore, my roots are in this community. My father served during WWII and was in active combat duty. When he enlisted, he was already a husband and father of two. He used to write my mother many letters. He was very descriptive, so they would censor the letters in case they fell into enemy hands. When the fire happened, all I thought about was my old stuff; the family history in there. All my father’s books were all damaged.

I looked inside the desk, sure enough, there was the box of my mother’s letters. It wasn’t touched by fire or water. That has brought me some comfort; some hope that we’re going to get through this.

“We had two very old pictures in decorative frames of my great grandmother and great grandfather, and that’s gone, those you can’t replace. The floor collapsed in two of the rooms, so I still haven’t been able to find things. I had an old secretary desk. It has a bookcase on top. It had the panel that opens up. We saw it in the room; it was blown to pieces because of the water pressure. But I looked inside the desk, sure enough, there was the box of my mother’s letters. It wasn’t touched by fire or water. That has brought me some comfort; some hope that we’re going to get through this.

“I just want to be able to do something with the house and be able to reconstruct and continue living in my community. I’ve had four contractors come to the house, and all of them said this house doesn’t have to be knocked down, but we will have to gut the whole house. They’re the experts and they’re saying they can do it. I’m still very hopeful.”

‘I met him in the Bijou on 110. It used to be a club. As soon as I looked at him, it was love at first sight. We were married for 19 and a half years.’

Bay Shore

“I met him in the Bijou on 110. It used to be a club. As soon as I looked at him, it was love at first sight. We were married for 19 and a half years. Larry was born with a congenital condition of his right arm. He woke up with a lump in his armpit. It was really bothering him. We were worried it was a blood clot. After two hours of waiting, the doctor told us to come back on Monday. That was on a Friday. So, on Saturday, Larry says he’s going to take it easy. He doesn’t go to work. As he’s home, I go to Costco. When I come back, he’s dead. That’s where my whole life does a spin around.

“I was 42. Larry was 44. I didn’t think I could live without him. I was in so much pain, emotionally, but also in pain physically. My chest hurt. My heart was broken. I didn’t want to live anymore. I had one night where honestly if my friend didn’t hear my page in the middle of the night, I don’t know if I would have made it through. I couldn’t even think of my kids. I was in so much pain.

After the second grief group I went to, I said, ‘If I ever get through this, I’m going to start my own group.’

“There’s a lot of secondary losses. Besides losing your best friend, you lose your income, your confidence, your normal routine; your dreams. You’re losing a partner to raise your kids with. You lose so much with that one person.

“After the second grief group I went to, I said, ‘If I ever get through this, I’m going to start my own group.’ I didn’t put it into fruition until one year after I was married again. I was in a good place. I didn’t go back for me; I went back to help other people. I called a church and said I was interested in doing bereavement to help young widows and widowers. She said, ‘I can’t believe you’re calling me.’ I was just praying for help with bereavement.

“They sent me for workshops. I went for two years, but after the first year they gave me a classroom. The groups kept growing. Every year, I have another idea. I have a group for COVID widows; for suicide widows. I have a dating group: A group for people who are widowed who don’t have children.

“I didn’t learn what to do for them out of a book. It came from my life. I have a place to take it from. And I always listen. I think that’s the biggest thing, listen to what people need.”

‘A loss is always going to be there but at the same time you still have to live life, there’s so much more to do.’

Bay Shore

“My significant other passed away unexpectedly in October 2019, and my goal was to find a stable home for my 16-year-old son and my 5-year-old daughter. We stayed with my sister and her husband and I was able to save more money and get more support spiritually and mentally. It was a great blessing to move back home.

“In 2018, Kenny and I had applied together for a housing lottery through the Town of Islip. We got approved, we were mortgage ready and we just had to wait because the land was donated but there was nothing built there yet. When he passed away, they told me I would have to resubmit all my paperwork, to make sure I was still eligible. So I did on March 12, then on March 16, COVID happened. They were on standstill and in July, they told me I had to resubmit all my paperwork again, which I did. That whole time I didn’t spend a thing, I saved my money. I was praying that I’d make it through COVID and my family and friends. Then I’m praying that I move into this house and I can raise my family. I’m praying, praying, praying. I followed up with the lottery and they said, ‘We’re up to your number. If you haven’t bought a house yet, just wait, the house is almost done.’ We just moved in and I’m still pinching myself because I waited and I saved my money. It’s amazing just to have my nieces come in here and say, ‘Auntie, this is so nice, I can’t believe it, I feel like you hit the lottery.’ I’m like, ‘I did!’ God doesn’t make mistakes and you can’t sit around and think about why and what if? A loss is always going to be there but at the same time you still have to live life, there’s so much more to do.

That was such a good feeling to give your family a sense of security. I just want someone to look at my life and say, ‘I can do it too.’

“I still have to provide Christmases that my daughter can talk about for years to come. I put my tree up because I like the lights and I decorated the outside of the house. Bay Shore is the place I wanted to be and I got it. I was number 18 in the lottery and I was like, ‘I’m never going to get a house.’ Now I’m in a brand-new house. My daughter says, ‘Mommy, are we going home?’ And I’m like, ‘Yes baby, this is our home.’ That was such a good feeling to give your family a sense of security. I just want someone to look at my life and say, ‘I can do it too.’”

‘That first sickness was the closest it came to Bear not being around; it was one of the scariest, worst times.’

Bay Shore

“Bear is turning 6 and he was born with spinal muscular atrophy. When we found out Erin was pregnant, we were having twin boys, but one of the pregnancies didn’t continue and we found out a few weeks later, Bear has SMA. We were told he wouldn’t be able to move when he was born, so we expected the worst. He started to show symptoms around six months, and we ended up in a clinical trial for a medication called Spinraza.

“When he was one-and-a-half, Bear was in the hospital for two or three months with rhinovirus and he had trouble swallowing. That first sickness was the closest it came to Bear not being around; it was one of the scariest, worst times. Your lungs are the deadly part of SMA; if you can’t cough, you’re in trouble. Then he started hitting milestones, like being able to hold his head up. He’s still very vulnerable but hasn’t been hospitalized for sickness in two-and-a-half years. He’s had tonsil surgery because his tonsils were so inflamed, and he had hip surgery to stabilize him for down the road if and when he’s walking. And I explain this to him, he knows all of it, he’s like a little doctor. He knows that neurons die, and his brain can’t speak to his muscles as loudly as it should.

As for Bear, he says to other kids: ‘They should be brave, like me, because I did a lot of hard stuff. You should be brave too because then you’ll have a really good life.’

“Last year, Bear switched from Spinraza, which cost $125,000 per dose, so around $650,000 a year, to Evrysdi, because it’s oral medication, no more lumbar punctures. The pharmaceutical companies pay for the clinical trials, so we haven’t had to go through insurance. But there’s a lot of out-of-pocket costs, like staying in the city when he’s in the hospital, his equipment. We were very lost when he was first diagnosed — for the first year-and-a-half we were convinced it was a death sentence. And now we’re intent on helping people not make that same mistake.

“Erin and I are the chapter presidents of the Greater New York Chapter of Cure SMA, so families who just learned the diagnosis contact us. It’s hard as a parent when you first get that diagnosis to figure it all out and find your next resource. As for Bear, he says to other kids: ‘They should be brave, like me, because I did a lot of hard stuff. You should be brave too because then you’ll have a really good life.’”