Stonington — Like many 20-something best friends, Taylor Bargnesi and Arianna Howard love to hang out together, make each other laugh and go on trips to the beach and amusement parks.

When Bargnesi and Howard, who has cerebral palsy, met as students in Mahan Elementary School in Norwich, Bargnesi described it as “love at first sight” and they quickly became close. In middle school, Bargnesi was inspired by Howard to help create an inclusive gym program to bring together students with different mental and physical abilities.

By the time Bargnesi was 16, it was “Ari and Tay all the time.” They did everything together, from participating in Unified Sports to going to the mall to having sleepovers, Bargnesi said.

“We would both do anything for each other," Bargnesi said. "Ari loves to make me laugh just as much as I like to make her laugh. We want to do everything together, from going to the movies to just hanging out at home. Our relationship is filled with love and passion. I care about Ari more than anything in this world and I will do anything for her to live the life she wants to live.”

Howard began living with Bargnesi in September 2020, and in May 2021, Bargnesi became her guardian when the Norwich Probate Court granted Bargnesi authority to manage care for Howard in a residence "outside the natural family home," according to a court document.

State Department of Developmental Services Spokesman Kevin Bronson said DDS could not comment on the specifics of Howard's situation or how Bargnesi became her guardian, when asked by The Day, due to the Health Insurance Portability and Accountability Act. Bargnesi also said she was advised by DDS to not comment to protect Howard’s privacy.

Bargnesi, 23, said Howard, who just turned 21, is her best friend, and she didn’t hesitate about taking on the new role.

“My heart just knew,” Bargnesi said. “I just knew.”

Building a life together

Howard, who has spastic quadriplegic cerebral palsy with a mild intellectual disability, uses a wheelchair, and every day, Bargnesi helps Howard with her needs, from getting dressed to preparing meals.

On a typical day, Bargnesi said she will wake up Howard at the apartment they share in Pawcatuck, give her breakfast and take her to school and any doctors' appointments. After school, they like to sit outside, eat dinner and take walks in the neighborhood. Howard, a "people person" with an "infectious smile," participates in activities, from ballet and basketball through the Miracle League to swimming, bocce, arts and crafts, and a teen social program through Groton Special Olympics.

When they get home, Bargnesi will read two or three books to Howard and then turn on her white noise machine and lamp for bedtime, and Howard will go to sleep.

Howard goes to eating therapy, occupational therapy and physical therapy to learn skills to build her independence, Bargnesi said.

She learned, for example, how to put on a shirt, with some help, by putting her arms and her head in the shirt and pulling down on her own, and also to make choices by picking out her own outfits, Bargnesi said. Howard also has a specialized stander that helps strengthen her legs.

While Howard is medically considered nonverbal, Bargnesi said Howard communicates in so many ways, including with her eyes, using body language and saying about 20 words, such as "hi," "bye," and "I love you." She also can communicate through a modified version of American Sign Language, for example, crossing her arms twice to say "school," rather than clapping twice. She also can point to pictures posted around the home to say she wants to take a shower. 

Bargnesi said she wants Howard to have an active life and anywhere she goes, Howard comes, too — including to church, social activities, the grocery store and the beach, Howard's favorite. Bargnesi said they are building a life together, and "the possibilities are endless" for Howard.

Bargnesi is upbeat and smiles when she talks about Howard and shows photos of her ice skating using a specialized walker or on the trip to Disney World they took to celebrate the guardianship.

Bargnesi also is fundraising, through grants and a GoFundMe page, for a wheelchair van that costs about $40,000, to make it easier to travel with Howard to their daily activities. Bargnesi describes on the page how she has to take Howard from her wheelchair into her car seat and then take the wheelchair apart to fit it into her trunk. She has to lift Howard "in and out of her car seat during each car ride."

New role

As Bargnesi stepped into her new role, she said she had to navigate the difficult transition from being the best friend who Howard always called for, to now also being a caregiver.

"I used to be the person that came in, scooped her away, we would have a party for three days, and then she'd come back. Whereas now we have a party all the time," Bargnesi said, but they also do the regular activities in life, such as showering and helping her with occupational therapy or feeding and stretching, and Howard may now associate her with some of those less-fun tasks.

Bargnesi also said she had to quit her job when she wanted to take time off to help Howard when she was in the hospital for a period. Bargnesi said she was denied leave under the Family and Medical Leave Act, since she had not yet reached the qualifying date, despite her employer's best efforts to help.

She now nannies and babysits, which allows her the flexibility to bring Howard with her.

Bargnesi said DDS is very involved and provides a case manager and nurse for Howard as well as a budget for additional caregivers as needed, and reimbursement for expenses the additional caregivers incur, such as a theme park ticket. Howard also is on state insurance for her medical care and receives disability benefits for her needs. Bargnesi said she is not compensated for the caretaking.

Bargnesi said she wouldn't trade her new role as a caregiver: "It's so worth it," she said. "I love what we are now."

Bargnesi loves their new life, whether she’s reading Howard a bedtime story, taking her clothes shopping or signing her up for dance classes.

She said they are even more connected, and when she recently took Howard to the doctor, she could tell — because Howard often communicates with her eyes — exactly what she was trying to say. Bargnesi said she tries “to be her advocate and her voice a lot.”

Bargnesi beamed and said it’s so amazing to have a lifetime partner, a best friend who is always there and who is going to stay there. She said moments, such as when Howard enthusiastically greets her every day after school, “never get old.”

“It’s just the best feeling ever,” Bargnesi said.

Bargnesi said she and Howard are best friends and that's what it comes down to: "I never even knew I could love someone as much I love her," she said. "I love caregiving. I'm a natural caregiver, anyway, but Ari is my everything. I'm lucky to have her, versus the other way around."

Gaining independence

On a recent sunny Monday afternoon, Bargnesi, Howard and Hannah Gonzales, a close friend who was visiting from Florida, went to Ke Nail & Spa in Waterford to get Howard’s nails done.

"Cute! Did you make this?" Bargnesi asked as she held up a piece of artwork with hearts that Howard had in her backpack.

Bargnesi caught up with her about her school day at Ocean Avenue LEARNing Academy in New London. "I'm glad you had a good day, and you brought home your art projects," she added.

Howard, who chose a sparkly purple color for her nails, smiled as the nail technician applied the color and Bargnesi sat beside her and talked to her.

Bargnesi said she relishes these moments when Howard has independence and can enjoy activities as a young adult. She said she wants Howard to continue to be happy and make choices in her life.

"She is amazing and she is doing great things, and she's just going to continue to grow," Bargnesi said.

Gonzales said their story is so special: "There's nobody like Taylor," she said of Bargnesi. "I don't know anyone else who would happily and without hesitation take in somebody and completely reroute their own life."

The three enjoy hanging out together, such as walking around Mystic or downtown Westerly in the summer, or playing in the park with Howard's friends and going to Rita's of New London, which sells Italian ice and frozen custard.

"Everybody has a journey, and I think Ari has just opened up my mind to so many things," Gonzales said.

Bargnesi’s goals for the future are to get a house, finish her associate degree at Northwestern Connecticut Community College in a program specializing in interpreting American Sign Language, and hopefully adopt kids. She wants to help families who have special needs kids and has ideas and dreams, such as writing a book, providing special needs nannying services and opening a business that would serve as a community resource to families.

Team players

Jenna Fitzgerald, Howard's aunt, said Bargnesi has always been an amazing friend, and now as her guardian, "takes amazing care of Ari."

"I couldn't think of a better person to be caring for my niece," Fitzgerald said. "Taylor is a once-in-a lifetime kind of friend."

Fitzgerald said Bargnesi always said that anything she can do, "'Ari can do, as well.'"

"She has stuck to that promise and given Ari every experience she can within her means no matter what it takes," Fitzgerald said. "The universe definitely brought these two together for a reason and I am very grateful for it."

Howard's teacher, Kimberly Colucci, said Howard loves music and has been described as a "ray of sunshine." She said people from other rooms will come into her classroom to say hi to Howard, and Howard will smile, laugh and say hi to everybody.

Colucci said she teaches secondary-life skills, and Howard is working to advocate for herself more, such as communicating when she's thirsty or wants to play a game or watch a movie, and in about a year will transition out of the program into a new program.

Teachers hope when the young adults finish school that they transition into appropriate places with peers, so Colucci said it's perfect timing for Bargnesi to take on the guardianship role. Howard and Bargnesi are both young adults, so they’re like roommates, as well as Bargnesi being Howard’s caregiver.

“Ari’s going to get what she needs through Taylor but she’s also getting the cool, college roommate type of experience too where she gets to have some freedom and gets to stay up late and watch movies and have girl chats,” Colucci said.

“Ari isn’t just somebody that she’s caring for,” she added. “She’s also her friend, and she wants her to go everywhere with her.”

Carol Vogel, Howard’s former paraprofessional, said that as a peer to Howard, Bargnesi is helpful in encouraging Howard to take the steps to do something that would be good for her: “They’re more like partners, team players.”

Vogel said Howard, who is “a light” and “such a personality,” appreciates what Bargnesi does for her.

“She looks at her adoringly,” Vogel said. “She’s just I think really thankful and grateful that she has a friend doing these things for her and looking out for her and trying to make her life the best quality that it can be.”

More information about the GoFundMe campaign for a wheelchair van for Howard is available at gofund.me/5d86bfe7.

k.drelich@theday.com