Canton family reflects on the beauty and challenges of living with Down syndrome
By Mary Ann Price
The Canton Citizen is pleased to partner with the Cantonal Committee on Diversity, Equity and Inclusion to present “Community in Unity”, a monthly series highlighting cantonal residents of diverse origins.
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 just has a great work ethic. She is easy to get around. She is curious and funny and loves all funny things. She is empathetic. She knows when you need a hug.
Falcone went on to say that Lucy enjoys music and movies, enjoys singing at Club Café in Boston on open mic parties, goes horseback riding at Pappas Rehabilitation Hospital in Canton and enjoys trying new foods in addition to her favorites like chocolate chip muffins, bacon and eggs, oysters and chicken parmesan. While on a family vacation in France, she tasted squid ink and pasta. “She loved it,” Falcone said. “He’s a really fun person to take to dinner.”
Now in her final year at Canton High School, Lucy enjoys her classes and is a member of the Unified Basketball Team. Next year, she will continue with the CHS as part of the school’s Adult Transition Program (CATP) for students aged 18 to 22 with special needs.
Although a typical child in many ways, Lucy faces unique challenges due to her birth 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 first published the disease description in 1866.
Falcone learned that Lucy had Down syndrome about 12 hours after giving birth in a Boston hospital. Falcone woke up from a nap and was reveling in Lucy’s beauty when a nurse entered and began to examine her, then Falcone had 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 little while later, a doctor walked in and told Falcone that Lucy was showing signs of Down’s syndrome.
“I was alone,” Falcone said. “I can’t describe it. The room has become both smaller and larger. Dave came back. It was very, very scary and sad for many 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 slashed his aorta, which was temporarily repaired before the operation was completed. Two months later, she underwent angioplasty to correct a narrowing in her aorta – the main artery that carries blood from the heart. Falcone described this period as very intense. However, after the operations, Lucy began to thrive and gain weight, and Falcone stated 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 little chubby baby.
The counterpoint to the positive improvements was the stressors. “There is ableism everywhere,” Falcone said. “I think it’s difficult when your child is not a typical child. I would have looks. I was sensitive to it. It was hard on a daily basis. “
The Falcones had an excellent family support system and organized early intervention services for Lucy, which proved to be successful. “When Lucy hit those goals it was so awesome,” Falcone said. “We didn’t miss a thing.
As Lucy got older one area turned out to be a struggle. “Working to have a really good friend is a challenge,” Falcone said. “It’s really difficult.” Lucy befriended another CATP student 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 and saw each other regularly before the pandemic. While their daughters are working together, Falcone and the other moms take the opportunity to check in.
“We moms can talk to each other about the next step,” she said. Instead of discussing SAT scores and college applications, they talk about Social Security payments and guardianship issues.
Through CATP, Lucy will work in a YMCA and with the Salvation Army, help out at a juice bar in Norwood, and explore career opportunities at the Paul Revere Heritage Site. “What I like is that she’s going to be exposed to different things,” Falcone said. “She will be able to see all of these different things that she will be able to do.”
Lucy described herself as smiling, excited and fun. “I love Sunday because I get a chocolate chip muffin from Dunkin ‘Donuts. I love the swing and basketball. My good friend is Abby Nix, ”she said.
She enjoys eating pizza with Abby. Lucy also likes to watch Mary poppins and The Phantom of the Opera.
Falcone said her daughter has more in common with others than differences in every aspect. “She has an extra chromosome and additional challenges,” she said. “It’s a different life. It might take longer for him to form a sentence, climb stairs, read something, manage money. I worry about his well-being. I want her to be safe and healthy, to have friends and to be loved. She’s just like you and me. He is a human being with dreams, hopes and skills.
When Dave Falcone worked for the Attleboro Sun Chronicle, he wrote a line that Lauren says stuck with her. The sentence was: “Nothing beats being easy.”
“Lucy is so worth having,” she said.
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