Ben and Cindy Singer: For this couple of 30 years, loss, grief, and a return to joy

Ben and Cindy Singer

Thirty years ago today, Ben rang the bell at Cindy’s Far Northeast home, fulfilling what felt like an obligation to the sister-in-law and family friend who had set him up on this blind date.

Cindy’s friend swore that her friend’s brother-in-law was Cindy’s perfect match, but she seriously doubted it. She and Ben found nothing in common in a predate phone call. Also, she tended toward older guys and he was two years younger. She was keeping this date as a promise to her friend, but Cindy tucked her little sister’s name and phone number into her pocket, planning to hand it to Ben when she told him she wasn’t interested.

Catching her first squinty glimpse at Ben through the front door peephole, Cindy thought, “At least I can spend an evening with a cute guy.”

Ben, who also lived in Northeast Philly, was pleasantly surprised when Cindy opened the door. “She had this very polished look about her — her hair, makeup, jewelry, everything.”

They were enjoying themselves by the time they reached the jazz club at Headhouse Square and held hands as they listened to the band. The lead singer noticed them: “We’re going to dedicate this song to this couple, who fell in love all over again tonight,” he said, launching into Nat King Cole’s “When I Fall in Love.”

As they already suspected, the two didn’t have much in common. “But there was this ease of conversation,” said Ben. “And we had great chemistry,” adds Cindy. Her sister’s phone number stayed in her pocket.

Ben and Cindy saw each other every week for six in a row. Then he moved from his apartment to a condo in Holland, Bucks County. On a day he had to work, he asked if she would wait at his new place for the cable guy. The next day at lunch, she tried to give back his key. “Why don’t you keep it,” he said.

“I fell in love with Ben because he’s so kind, and thoughtful, and has a really good sense of humor,” Cindy said. “I can get so anxious and high-strung, and he was the person who could always make me feel calm — he still is.”

Cindy showed Ben that compromise is beautiful when both partners bend, he said. Being with her “was what I needed” and everything felt easy and right.

From then on, everything would always be right between them, but it would not always be easy.

On June 6, 1993, the couple wed at the former Temple Beth Torah on Welsh Road and held a reception for 200 guests in the social hall. Their first dance was to the song dedicated to them on their first date, “When I Fall in Love.”

They lived in Ben’s condo until they bought a home in Newtown. In 1996, their oldest son, Dylan, was born.

Dylan could not swallow. He did not gain enough weight — failure to thrive, the doctors said. One day, Cindy noticed the smoothness of their baby’s tongue. He had no taste buds, which she and Ben soon learned is a symptom of familial dysautonomia, a rare genetic disorder of the autonomic nervous system, which regulates the internal organs, and the sensory nervous system. The disorder, which usually occurs in children with Ashkenazi Jewish heritage, is often called FD for short. Cindy adds an initial for the expletive that most conveys her feelings: FFD. “Ben and I are both carriers, but it was nothing we ever heard of,” she said. “Even if we had, there was no testing for it then.”

Dylan needed medicine around the clock. He would always be nonverbal and was later diagnosed with autism. He would never eat on his own; his parents fed him through a feeding tube. He needed assistance with bathing and all personal care.

“We became like a team of professional caregivers,” said Ben.

Cindy left her job as a drug company’s regional coordinator of training and development to spend her days taking care of Dylan, calling insurance companies and home health companies, and otherwise advocating for him.

Ben worked during the day. At night, he set a series of alarms to give Dylan medicine every two hours while Cindy slept.

Wanting to help, Cindy’s parents, Gloria and Marvin, invited the three to move into their home — the same place where Cindy had first spied Ben through the peephole, and where the family lives today. Ben took a new job with Phillips & Cohen Associates, a financial recovery firm, where he is now a legacy consumer care specialist.

When Dylan was 4, a genetic test for FD was developed. It was that test in part that allowed the couple to consider having a second child. Brandon was born in 2003.

Cindy and Ben worked with a team of educators, social workers, and skilled nurses so Dylan could attend preschool at the synagogue. He then attended public school until frustration over his inability to communicate led to behavioral issues. A behavioral analyst came to the Singers’ home and taught Dylan to communicate through pictures. His parents and little brother worked with him, too. “We had given him a way to unlock what we knew was in his brain, and his behavior changed,” Cindy said.

Starting at age 10, Dylan attended the Springtime School, which was founded by his behavioral analyst.

Ben programmed an iPad that allowed Dylan to touch pictures to trigger a voice, through which he could talk with his family, his peers, his teachers. “He had such a tremendous personality, though, that he could really speak without talking,” Ben said. Dylan didn’t giggle so much as belly laugh. He flirted with every female, kissing their hands. He would tug his brother’s hand until Brandon sat with him on the couch and cuddled.

While Dylan had periods of pain and nausea every day, he was happy and smiling again as soon as they passed.

Brandon, a gifted writer who is now a high school junior and has begun looking at colleges, has always been “empathetic, intuitive, and an old soul,” said Cindy.

When Brandon was young, the couple took the boys to Sesame Street Live and the Wiggles. Dylan never stopped loving such things. When Brandon did, Ben and Cindy’s different tastes paid off: Cindy took him to the beach and Broadway while Ben enjoyed one-on-one time with Dylan, often watching Blues Clues and Elmo.

Dylan spent so much of the last year of his life in hospitals that his parents kept a go-bag by the front door. In April 2016, he died at age 19.

“During that first year after his death, we didn’t even think of ourselves as a couple,” said Ben.

“We were just so focused on Brandon, who lost his brother when he was only 12, and on making sure he was OK. And on planning his bar mitzvah. We didn’t take time to grieve,” Cindy said.

Three months after Brandon’s bar mitzvah, Cindy’s dad died and that grief unleashed grief over Dylan, too.

Two years after the passing of the son they call their “one above,” with their grief a bit duller and their “one below” thriving, the couple realized they could again take time for each other.

Ben and Cindy’s love remained strong, but they had to restart their romance, to learn to be a couple again, not just parents or caregivers.

One night, they went to an ELO concert. “It was a real date, and a really good time,” said Cindy, who is now 56. “It was the first time since Dylan died that I truly felt joy.”

Thirty years in, Ben, who is now 54, still admires Cindy’s creative style and smarts. He’s so proud that she founded Dylan Michael Cosmetics in 2008.

“We’ve grown to have more things in common,” he notes. They both enjoy nights at home, binge-watching The Sopranos and The Wire. “For roughly 20 years, we didn’t watch any TV that wasn’t Barney or Blues Clues,” said Ben. “We have plenty to catch up on.”

Thirty years in, Ben “is still adorable to me, and he is the kindest person I know,” Cindy said. “I would marry him all over again.”