At one point on a recent afternoon at her house in Branford, Bobbi Racette lost her train of thought.
“That’s OK, Mom,” said her daughter Irene, taking a break from fitting plastic pegs through cardstock into a Lite-Brite device as she sat at a table in the sun-drenched living room. “It’ll come back to you.”
Irene, 54, who was spending the day at her childhood home, is intellectually disabled and legally blind, but those are “just technicalities to her,” Bobbi said.
In her heyday, Irene won more than 150 Special Olympics medals and citations in aquatics, bowling, cross-country skiing, and snow shoeing, traveling to the National Special Olympics in Steamboat Springs, Colo., and, at the state games in New Haven, reciting the Special Olympics oath with the actress Susan St. James.
These days, she follows the Boston Red Sox and UConn men’s and women’s basketball teams, while enjoying socially-distanced walks and lively discussions at her day program and spending time with her roommates at her SARAH Tuxis continuous residential support apartment in Madison. She’s also a fan of “old-school country music,” as she put it, counting Alan Jackson, Reba McIntire and Alabama among her favorites.
Irene was born with retinitis pigmentosa, a rare genetic disorder that involves a gradual and relentless breakdown and loss of cells in the retina.
“You tend to use your other senses to compensate, and she probably had good eyesight until it started decreasing so Paul and I had no idea,” Bobbi said, referring to her husband and Irene’s father.
It wasn’t until Irene was 5 that Bobbi and Paul had any inkling something was off. “We were at a friends’ house and it was very dark outside and she kept falling,” Bobbi said. “That concerned us.”
Her parents took Irene to a doctor, then to a specialist. For three years, as they searched for an answer, Irene’s vision continued to deteriorate. Finally, they found a doctor at NYU Medical Center who had an electroretinogram, a test that measures the electrical activity of the retina — a sort of EKG for the eyes, according to the Retina Group of New York website.
“From that point on, we prepared for the slow decrease of her sight.” Bobbi said of the diagnosis.
That Irene is now 99 percent blind doesn’t seem to faze her. “All her senses give her clues,” Bobbi said. “When they had no electricity, it was no big deal for Irene. There are landmarks everywhere for her. And her sense of hearing is so acute when the staff has meetings, they make sure Irene isn’t in the house.”
There’s also this. “Irene focuses on the positive,” Bobbi said. “She focuses on what she can do.”
She went through the Branford school system, excelled at Special Olympics, worked as a pastry chef’s assistant at Brandenburg in Madison, and shucked shrimp at Chowder Pot.
All the while, she maintained her “zest for life,” as long-time friend and neighbor Connie Nucolo put it.
It was Nucolo, an accomplished artist, who engineered yet another breakthrough for Irene this spring. By then, Irene had moved back to her parents’ home in Branford.
“It was March 16 when we brought her home, and no one really knew what we were going to be in for,” Bobbi said.
At first Irene and Bobbi would go on walks twice a day, try new recipes, and watch comedies on TV. Irene helped with the laundry and housekeeping. She also took part in Zoom sessions with staff and friends at her day program.
“I was happy to be home but I was missing my friends, so it was good to hear their voices,” Irene said.
Early on, they were playing cards when, Bobbi recalled, “it dawned on me that Irene used to do Lite Brite,” Bobbi said, referring to the classic light box with small colored plastic pegs that fit into a panel and illuminate to create a lit picture.
“It’s amazing when you’re so confined that you start coming up with activities that you haven’t thought of for years.”
As it happened, she had the new retro-inspired version that not only lights up but can flash.
Initially Irene made her designs free-form, placing the pegs in their holes through a blank sheet of cardstock. All the while, they were getting texts from Nucolo.
“I would write an inspirational message and find a watercolor or drawing of mine and text it to about 65 friends and family,” Nucolo said. “Then Irene asked if she could text images of her Lite-Brite pictures to me.”
In the midst of their daily art exchange, Nucolo suggested that Bobbi make templates of shapes and letters for Irene. “That way, she could use her imagination to create pictures even if she could barely see them,” she said.
From there, “Irene was off and running,” Bobbi said. “She was getting me exhausted because each day she would say, ‘Mom, would you make a fish,’ and then the next day it was flowers and then a flag and a heart.”
That said, “I was so pleased that Irene could feel like an artist in her own way,” she added.
Ninety pictures later, Irene was preparing to move back to Madison. Father’s Day was approaching. She asked her mother to make a template with the word DAD and a heart.
It was among the pictures included in a photo book she made Paul for Father’s Day.
Irene has a copy, which she treasures.
“I can’t bring my book to work, so I leave it at home,” she said. “I just don’t want it to get lost.”