Canton family reflects on beauty & challenges of life with Down syndrome

The Canton Citizen is pleased to partner with the Canton Diversity, Equity & Inclusion Committee to present “Community in Unity,” a monthly series spotlighting Canton residents of diverse backgrounds.

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Lauren Beckham Falcone and her daughter, Lucy, have a very close relationship. “She’s my favorite person,” Falcone said. “She’s funny and she’s smart and she’s talented and she’s beautiful. She’s just got a great work ethic. She’s easy to be around. She’s curious and funny and likes all the fun things. She’s empathetic. She knows when you need a hug.”

Lucy Falcone

Falcone went on to say that Lucy loves music and movies, enjoys singing at Club Café in Boston on open mic nights, goes horseback riding at Pappas Rehabilitation Hospital in Canton, and likes to try new foods in addition to her favorites like chocolate chip muffins, bacon and eggs, oysters and chicken parmesan. During a family vacation to France, she sampled squid ink and pasta. “She loved it,” Falcone said. “She’s a really fun person to take out to dinner.”

Now a senior at Canton High School, Lucy enjoys her classes and is a member of the Unified basketball team. Next year, she will continue at CHS as part of the school’s Adult Transition Program (CATP) for students aged 18-22 who have special needs.

Although a typical kid in many ways, Lucy faces unique challenges as a result of being born with Down syndrome — a genetic condition caused by the presence of a full or partial third copy of chromosome 21. Also known as trisomy 21, Down syndrome was named after British physician John Langdon Down, who published the first description of the condition in 1866.

Falcone learned that Lucy had Down syndrome about 12 hours after giving birth to her at a Boston hospital. Falcone awoke from a nap and was reveling in how beautiful Lucy was when a nurse came in and began examining her, then had Falcone moved to a nicer room. “That’s when I knew something was up,” she said. Her husband, Dave, had left the hospital to bring his parents back to meet their new granddaughter. A while later, a doctor walked in and told Falcone that Lucy showed some signs of having Down syndrome.

“I was alone,” Falcone said. “I can’t describe it. The room got smaller and bigger at the same time. Dave came back. It was very, very scary and sad for a lot of days.”

When Lucy was two months old, she weighed eight pounds. She had surgery to repair three holes in her heart; during the operation, the surgeon nicked her aorta, which was temporarily repaired before the surgery ended. Two months later, she underwent an angioplasty to correct a narrowing of her aorta — the main artery that carries blood from the heart. Falcone described that time as very intense. However, after the operations Lucy began to thrive and put on weight, and Falcone said that she and Dave were finally able to breathe.

“Physically I could see it,” she said of the changes in her daughter. “It was much better. She just became this adorable, chubby little baby.”

The counterpoint to the positive improvements were stressors. “There’s ableism everywhere,” Falcone said. “I think it’s hard when your child is not a typical child. I’d get stares. I was sensitive to that. That was hard on a daily basis.”

The Falcones had a great family system for support and arranged for early intervention services for Lucy, which proved to be successful. “When Lucy would achieve those goals, it was so awesome,” said Falcone. “We didn’t miss anything.”

As Lucy has grown older, one area has proven to be a struggle. “Working to have a really good friend is challenging,” Falcone said. “It’s really hard.” Lucy has made friends with another student in CATP and is friends with a group of girls called the LALAs. The name comes from the first letter of each girl’s first name. They met through speech therapy services and saw each other regularly prior to the pandemic. While their daughters work together, Falcone and the other moms take advantage of the time to check in with each other.

“We moms can talk to each other about what the next step is,” she said. Instead of discussing SAT scores and college applications, they talk about Social Security payments and guardianship issues.

Through CATP, Lucy will work at a YMCA and with the Salvation Army, help out at a juice bar in Norwood, and explore potential career possibilities at the Paul Revere Heritage Site. “What I love is that she’s going to be exposed to different things,” Falcone said. “She’ll be able to see all these different things she’ll be able to do.”

Lucy described herself as smiley, excited and fun. “I love Sundays, because I get a chocolate chip muffin from Dunkin’ Donuts. I love the swing set and basketball. My good friend is Abby Nix,” she said.

She likes getting pizza with Abby. Lucy also likes watching Mary Poppins and The Phantom of the Opera.

Falcone said that her daughter has more in common with other people than differences in every aspect. “She has an extra chromosome and extra challenges,” she said. “It’s a different life. It might take her longer to form a sentence, navigate a set of stairs, read something, deal with money. I worry about her well-being. I want her to be safe and healthy and have friends and be loved. She’s exactly like you and me. She’s a human being with dreams and hopes and skills.”

When Dave Falcone worked for the Attleboro Sun Chronicle, he wrote a line that Lauren said has stayed with her. The line was, “Nothing worth having comes easy.”

“Lucy is so worth having,” she said.

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Posted by Mary Ann Price on Nov 5 2021. Filed under Features. Both comments and pings are currently closed.