“I always thought that Jonathan was an old soul. I felt that he was wise beyond how old he was,” Amy Jaffe Barzach says. “The spiritual side of me wants to believe that maybe he picked our family. He knew he wasn’t going to have a long life. He wanted to work with us to create a place where children with disabilities could be included too. That is my hope.”

Because of Jonathan, they built Jonathan’s Dream, a place where children of all abilities could play together, Peter Barzach says. “We actually feel like the playground is a happy place,” he says. “We mostly go to feel a connection to Jonathan at Jonathan’s Dream.” Jonathan’s picture and story is on a bronze plaque on a boulder just inside the rainbow entry arch at Jonathan’s Dream. If you see Amy come into Jonathan’s Dream you might notice her gently touching Jonathan’s forehead on the bronze plaque as she passes. “It feels like Jonathan is there,” Peter Barzach says.

After TIME ran an article about Jonathan’s Dream when it opened in 1996, “we had people calling from all over the place, asking how they could do the same thing in their communities,” Peter Barzach says. Amy started helping communities create their own inclusive playground projects. One of the  first projects was in Fairhaven, Massachusetts. Two moms of children who had disabilities were working to build an inclusive playground at their sons’ elementary school. The boys used to go to the library during recess, sometimes sadly watching their classmates play outside. These moms had worked hard to raise the money needed for their playground and hadn’t yet raised enough. Amy sent a letter to companies within a 45-mile radius.

Hasbro responded and told her that joy was part of their company’s mission. The company helped Everybody’s Playground in Fairhaven complete their fundraising, and the playground opened in 1999. Hasbro then asked Amy if she had ever thought about creating a nonprofit organization dedicated to this cause. Amy said, “Yes! In my dreams.” Hasbro invited Amy to submit a grant. Amy remembers the deadline being what would have been Jonathan’s birthday and took this as a sign. In 1998, Hasbro awarded a significant three-year grant to support the launch of Boundless Playgrounds.

During Amy’s tenure as its executive director, Boundless Playgrounds helped 135 communities in 25 states develop their own inclusive playgrounds, generated interest and demand for inclusive playgrounds and developed standards for inclusive playgrounds. Over the organization’s lifetime, it helped hundreds of communities build inclusive playgrounds across the United States.

One of the most spectacular playground projects Boundless Playgrounds worked with in the early 2000s continues to help communities build inclusive playgrounds to this day. A California family whose child, Shane, also died from spinal muscular atrophy learned about Jonathan’s Dream. His family, Catherine Curry-Williams and Scott Williams, and friend, Tiffany Harris, developed Shane’s Inspiration, the first inclusive playground in the Western United States.

Today, Inclusion Matters by Shane’s Inspiration (inclusionmatters.org) has grown into a powerful worldwide network of inclusive, sensory- and literacy-rich playgrounds with more on the way. They also work with communities to bring social inclusion programs onto playgrounds and into schools. This nonprofit keeps the legacy of building inclusive playgrounds going and has expanded worldwide.

“Working on Jonathan’s Dream helped us find a purpose for our son’s short life,” Peter says. “Creating a place where kids of all abilities can play together keeps Jonathan’s memory alive.”

“We’re always carrying the inspiration and the legacy of Jonathan in our work,” says Tiffany Harris, co-founder with Shane’s parents of Inclusion Matters by Shane’s Inspiration. Harris says Jonathan and the Barzachs’ original mission will always exist.

“Whether it’s called Boundless Playgrounds or Inclusion Matters by Shane’s Inspiration,” Harris says, “the seeds she planted are so deep and spread so far that Jonathan’s legacy exists in perpetuity.”

The Barzach family likes to imagine that in Jonathan’s dreams, he would want playgrounds to be places where everyone, regardless of ability or disability, could celebrate life.

The grief counselor went on to say, “My normal response would be to hold her hand and say, ‘I understand the magnitude of this loss.’ I found myself saying in a strong voice, ‘You are going to make use of every part of your degrees and work experience to make meaning of this child’s life. He came here for a reason. He’s inspiring you for some legacy, some meaning. You need to find that. I’m sending you out on a mission to find the meaning of his life. What is he teaching us? What is his purpose?”

For three months after her son Jonathan died from spinal muscular atrophy, Amy says, “I couldn’t get out of bed, my heart was so broken.” Together with her husband Peter Barzach, they decided to do something for other children in Jonathan’s honor. On what would have been Jonathan’s first birthday, April 1, 1995, Amy and Peter brought in a musician to perform and gave books to every child in the hospital where Jonathan had been.

Seeing the smiles on the children’s faces inspired them to want to do more. They remembered seeing a girl in a wheelchair sadly watching the other children play on a playground she couldn’t get to or play on. If Jonathan had lived, Amy thought, he would have needed a wheelchair and been left out just like that little girl. At first, the family just wanted to do something simple by providing a piece of inclusive equipment in Jonathan’s memory, says Peter Barzach. “We never imagined it was going to be as much of a movement as it turned out to be.”

Amy worked in marketing and community relations for The Hutensky Group, a shopping center development and management company, and Peter worked as a general manager for one of United Technologies’ business units.

“You never really know the cards you’re going to be dealt and how you’re going to react. We were active in the community and volunteered with local nonprofits,” he says. “This was much more personal. It became a lot more than being involved. Jonathan’s life opened our eyes to a huge need, and we found meaning in honoring Jonathan’s life this way.”

The Barzachs held ‘dreaming and design’ parties where children with and without disabilities, including children who used wheelchairs or had other physical challenges, imagined their ideal playgrounds. One young boy, Matt Cavedon, designed a glider boat swing, saying, if he could make the boat move with his motorized wheelchair, maybe other kids would want to play with him.

Physical and occupational therapists, child development experts, parks and recreation professionals and doctors consulted, and the project benefited from working with a community build playground company that translated all of the ideas into the original Jonathan’s Dream. At the time, the only option for making an inclusive playground meant building it by hand out of wood and composite lumber donated by Hartford Lumber Company and Trex, the company that manufactured it.

Planning, fundraising, and project management with the help of a team of dedicated project leaders and more than 1,000 volunteers and donors resulted in Jonathan’s Dream opening on October 22, 1996, in West Hartford, Connecticut. It was one of the nation’s first inclusive playgrounds. From start to finish the project took 18 months.

The original Jonathan’s Dream was one of the first inclusive playgrounds in the United States when it was built in 1996. It included a treehouse where every child could be king or queen of the hill and get to the highest parts; a train, musical instruments, and swings with high backs to support children.

When Amy first approached the JCC to request permission to build an inclusive community playground on their campus, board members had a lot of questions. This was a very new idea and there were only a few playgrounds like this in the country at the time.

“The request prompted board members to ask, ‘What do you mean?’” says Joyce Mandell, a member of the JCC board at the time. Board members asked if focus groups had been done to see if the need existed. “We pictured a playground like this being at a hospital not in the community,” she says.

After the meeting, Amy invited Joyce to join her on a road trip to visit an inclusive playground at Boston College’s Campus School. They saw a glider swing designed so whole families could ride together (children who used wheelchairs could enjoy it and so could families with babies in strollers) and a sand box table that made it possible for children who used wheelchairs to comfortably play in the sand, Joyce says. The playground also included ramps and bridges that brought children with disabilities to the middle of the fun and easy-to-reach outdoor musical instruments. As they sat together on the glider boat swing that day, Joyce says, “We realized the playground would be fun for all children.”

That was all it took. “From that moment on, I carried the flag too,” Joyce says. When she returned home, she called her niece, a graphic designer, and asked her to design a logo to convey the concept of an inclusive playground. Joyce and Amy talked about including a grandparent in the logo to represent Jonathan’s Dream serving people of all ages in addition to all abilities. Joyce became a leading advocate, and the JCC board members became supporters too. The idea blossomed to build an entire inclusive playground complete with slides, swings, a treehouse, a train, and musical instruments.

The Americans with Disabilities Act (ADA) was signed into law in 1990 but its mandates took time to implement. And requirements for playgrounds outlined in the ADA called for them to “accessible” but not necessarily inclusive. As Amy points out, “A playground could meet ADA requirements but a child who used a wheelchair would have to use transfer steps to access the play structure. This means the child would have to leave their wheelchair on the ground. Since their wheelchair is their mobility, for most children who use wheelchairs, this is not a viable option.”

To get community buy in, people would have to be sold on the whole idea of inclusive playgrounds. Barzach talked to any group that would listen. “She’s the one who took the show on the road,” Joyce says. “She was the one who carried the load.” Amy says, “Joyce was someone I could always count on. She was resourceful and good at helping me explore options and figure out how to move forward,” Amy says. “Joyce and her family also became major donors and helped attract other donations,” she says. As word spread through the community and beyond, volunteers and funding came through.

Finally, in 1996, master carpenters and captains led teams of volunteers who gathered for five days in October at the half-acre site to build the playground by hand. Four-year-old Daniel Barzach, Jonathan’s older brother, served as the junior project manager.

Amy’s drive and vision helped her work through obstacles and her grief because “she could see Jonathan in every child,” says Sharon Massoth, the grief counselor. She processed her grief by giving children joy, by giving them a chance to be kids. Carrying out this mission “opened her heart and filled her heart,” she adds. “When your heart is broken, when you find that you can give other parents hope, that just opens your heart.”

When the original playground came down, they wanted to rebuild, but at that point, Amy had a full-time job and was raising three teenagers. In the fall of 2012, while driving her oldest son Daniel to college in Virginia, they talked about what losing Jonathan’s Dream meant to their family, and what they could do.

“I could tell she was gutted. Part of us had gone away,” says Daniel Barzach. “On that car ride, while I was driving, she ended up calling a bunch of people to get the seeds together to start planting the new Jonathan’s Dream.”

Amy realized Jonathan’s Dream needed an “honorary godmother” to be the lead project manager. She tried to imagine who the ideal person might be. She thought of Ronit Shoham, a local resident who had helped found the West Hartford Little League, a league where players got equal field time, and the Miracle League of CT, a not-for-profit organization dedicated to providing recreational and sporting opportunities for children with physical and/or cognitive challenges at accessible facilities.

“Ronit is someone who has the same kind of heart I do, someone who cares about fairness, who cares about inclusion,” Amy says. She left a voice message for Ronit and heard nothing for two weeks. She feared Ronit would turn her down but was finding it hard to say ‘no.’ “I was afraid Jonathan’s Dream might never come back to life,” Amy says. “And I didn’t feel like I had the strength to do it.”

A perennial volunteer, Ronit had made a commitment to her family to start declining more community commitments. Upon landing after a two-week vacation, she checked her voicemail and heard Amy’s request. “I said to my family, ‘OK, guys, listen to this message.’ They said, ‘You can’t say no to that,’ ” Ronit says.

They soon became friends. “It was a match made in heaven. Ronit is an outstanding project manager,” Amy says. “She makes things happen and she doesn’t give up, even though it took years. She cared about and respected my family’s perspective. And she is the person who made sure that Jonathan’s Dream Reimagined includes a bronze plaque with Jonathan’s photo and story on it. She was positive, determined, and extraordinary.”

Money was raised to rebuild the original Jonathan’s Dream through events big and small, grants from foundations and the State of Connecticut, and private donations. Comedian Billy Crystal, who is married to Amy’s cousin Janice, performed in Connecticut in 2017, and the event raised nearly $25,000. The PAC Group, LLC, donated the services of one of its employees, Tim McGinn, to serve as general contractor for the project. The Connecticut Doctors Orchestra put on a concert. There are so many people and organizations to thank (visit jonathansdream.org – 25th Anniversary section on the home page to see names of donors and where available photos of donor plaques from original Jonathan’s Dream and Jonathan’s Dream Reimagined).

Inclusion Matters by Shane’s Inspiration donated playground design services as a way of thanking Amy Barzach and the Boundless Playgrounds team for helping the nonprofit build its first inclusive playground in 2000. A newspaper story about Jonathan’s Dream led a California mom whose infant had died of spinal muscular atrophy like Jonathan did to connect with Amy; she told the grieving parents about a family support group, says the couple’s friend, Tiffany Harris, co-founder of Inclusion Matters by Shane’s Inspiration.

Amy and her team at Boundless Playgrounds advised Catherine Curry-Williams, Scott Williams, and Harris, on how to start their inclusive playground project. “Without Amy, there would be no Inclusion Matters by Shane’s Inspiration. She paved every step of the way for us to create the first playground, Shane’s Inspiration, and to move forward as an organization, which wasn’t our intention in the beginning,” Harris says. “If we had some presentation the next morning, and it’s 11 p.m. our time, we would call her and she would wake out of a dead sleep, and with all of her grace, all of her knowledge and all of her strategy, guide us forward.

“So, when she was ready to reimagine Jonathan’s Dream and came to us, it was an extraordinary moment to honor her, their family and Jonathan, and give back a very small portion of what she had given us,” Harris says. Inclusion Matters by Shane’s Inspiration, has built more than 75 inclusive playgrounds worldwide, continuing and even expanding on the work of the now-disbanded Boundless Playgrounds that Barzach co-founded.

The nonprofit organization has built inclusive playgrounds throughout the United States and in other countries, and more than 50 playgrounds are under development in the United States and internationally.

“The demand and the need are so great, there can never be enough organizations like Boundless Playgrounds to meet that need,” Harris says. Amy has had “an infinite impact in the world, in the lives of children with special needs and in the lives of returning wounded war veterans who can now play in the playground with their children.”

• The highlight of Jonathan’s Dream is the massive treehouse where children of all abilities can get to the highest places.
• For children with autism, sensory sensitivity or anxiety, the redesigned playground includes even more cozy spots, including hideaways below the treehouse, where children can sit and be alone in a quieter space, but still be visible to their guardians. At the far end of the playground is the labyrinth with a butterfly-shaped bench, a stone abacus, a children’s yoga panel and more quiet spaces to rest or step away from the sounds of chatter and laughter in the rest of the playground. There are colorful glass mosaics imbedded into the ground depicting natural creatures such as a frog, dragonfly, or fish. Children can stand in front of a mirror and see affirmations displayed on signs around themselves, such as, “Every problem has a solution” and “Whatever I do, I give it my best.”
• The pavilion is full of affirming quotes including one from a Raffi song, “All we really need is a song in our hearts,” and Mr. Fred Roger’s trademark, “You’ve made this day a special day just by being you.”
• The ground is covered in a smooth resilient surface that allows wheelchairs to maneuver easily and has layers of a resilient material to limit injury to anyone who falls.
• Underneath a large, elevated airplane, the surface is designed to look like an airport runway. The airplane play structure includes a support swing with a harness on one side and a disc-shaped seat on the other. Children who need back support can sit in the seat with sides, a back and a harness and fly, while their friends and siblings without disabilities can hop on a saucer-like seat and zip alongside them.
• The Music Central station nearby includes large pipes of varying sizes that children can tap on to create music, as well as the marimba from the original Jonathan’s Dream. Children who are Deaf can feel the vibrations from musical instruments in the playground.
• One of the slides at Jonathan’s Dream, a roller slide, is fun for everyone because it vibrates as people slide down it – even parents. It’s also a slide that children who have cochlear implants can use safely. Just like the original, Jonathan’s Dream Reimagined includes a treehouse that provides access to the upper levels for children who use wheelchairs.
• Former NBA player and UConn men’s basketball coach Kevin Ollie donated one of his “Kevin’s Kourts” inclusive basketball courts. The Bankshot court includes a variety of basketball play structure stations that allow players of all abilities and ages to play alongside each other.
• A rainbow-colored “buddy bench,” made of recycled milk jugs, is etched with a quote in memory of a boy named Buddy who had been part of the local Miracle League inclusive baseball team.
• A braille Little Free Library is located next to a typical Little Free Library, and both are filled with books.
• Near the entrance, a rock garden of Kindness Rocks greets visitors, with messages of encouragement and hope painted on rocks for people to take or leave.

Another sign that Jonathan Barzach’s legacy lives on beyond his short life, his sister Alyssa Barzach, a speech-language pathologist, designed a picture and letter board, AAC (augmentative and alternative communication) Core Board, to aid children who use augmentative devices to communicate. On the board, users will  find some of the most common nouns, verbs, adjectives, social greetings, and questions that children might want to use on a playground. The intention is to increase accessibility, connection, and friendships at the playground. Mary Ann Steadman, a speech-language pathologist, suggested this idea. These days, children use augmentative and alternative communication (AAC) systems, but the devices can be too expensive to bring to a playground where they risk getting broken.

Working with Perkins School for the Blind and CRIS Radio, a radio-reading service for people who are blind, or print challenged, the playground now includes a GPS-enabled mobile app that helps guide visitors through the different sections. Visitors can scan a QR code or download the app to trigger an audio description of the playground’s offerings. Because yellow is the most visible color to those with low vision, steps and elevation changes are marked with yellow strips.

A few months after Jonathan died of spinal muscular atrophy in 1995, Amy Jaffe Barzach and Peter Barzach started taking steps to keep Jonathan’s memory alive by building a place where children of all abilities could play together. Just before Jonathan died, a grief counselor suggested they come up with a project they could do in his honor, something they could tell him about while he was still with them. If Jonathan had lived, he would have used a wheelchair, Amy says. She remembered taking her two boys to a playground in 1994 and seeing a girl in a wheelchair sadly watching children play, her eyes sad and her chin quivering. The memory stayed with her.

Daniel Barzach remembers his brother smiled as a little baby. He remembers  Jonathan being sick and passing away, and his parents’ sadness. But, he said, “when I think back on that time, I don’t think about hospitals or death. I think of all things related to Jonathan’s Dream, the concentrating on something good.” Daniel remembers sensing his mom’s sadness and knowing his brother had a degenerative disease, but also her efforts to enjoy the time they had with Jonathan.

It was Daniel’s idea that the family take a trip to Mystic Aquarium shortly before Jonathan died so he could see the beluga whales that Daniel loved from the Raffi song “Baby Beluga.” The trip inspired the baby beluga slide in the original Jonathan’s Dream playground, which opened in 1996 and the beluga area in the new Jonathan’s Dream Reimagined when it was rebuilt in 2017.

If his mom hadn’t chosen to build an inclusive playground, she would have found some other outlet, Daniel says. “It became all-consuming for a while,” he says. “I think it helped both of my parents overcome their grief and channel their energy into something good.” After they successfully built what was one of the world’s first inclusive playgrounds for the general population, they formed a nonprofit called Boundless Playgrounds to  help more communities build inclusive playgrounds.

Michael Barzach, born nearly three years after Jonathan’s passing, says his family, having experienced loss before he was born, appreciated each other and their health.  “There was a lot of importance placed on being together and being grateful for what we have right now,” he says.

His childhood experiences of attending playground openings and playing with children of all abilities taught him compassion and perspective, and that there’s never a reason to look down on someone, regardless of their abilities, Michael says. He learned, “Everyone is a human being; just show kindness and compassion for everyone.” His older brother, Daniel, led by example, and “was a caring and nurturing person, he always had a deep sense of kindness and it showed when he was with us,” Michael says.

While his mother’s belief that we should “pay it forward” is ingrained in him, Daniel says, his sister Alyssa best emulates their mother. “My mom is an interesting combination of very compassionate but also very strong. I think she is just relentless about seeing the best in people, seeing the world for what it could be rather than what it is.”

Alyssa Barzach who was born in 1996, just before the one-year anniversary of Jonathan’s death says, “Growing up, honoring Jonathan’s legacy was in the forefront of family life more than grief and sadness. This allowed us to celebrate all the good things that came from his short life.”

Born into a family that valued public service and inclusion, she says, meant routinely connected with children who had disabilities, used wheelchairs or walkers, or had cognitive differences. Today, Alyssa is a speech-language pathologist at Boston Children’s Hospital, working with children in the Augmentative Communications Program, and with adults in short term rehabilitation centers. “It felt innate that I was going to go into a helping profession. She sees her work as a continuation of supporting Jonathan’s legacy. Her experiences taught her that just because someone has a disability or is nonverbal doesn’t mean they’re not intelligent; she sets high expectations for her patients and encourages them to reach them.

She and her brothers, Daniel, and Michael grew up with messages of patience and tolerance because everyone carries some unseen burden. Her parents taught her not to judge people or make assumptions based on appearances. They role modeled “seeing the best in everyone.”

Even though Alyssa was born a year after Jonathan died, his story and legacy are very much a part of her. “I love my brothers so much. I’m really glad the relationship has continued to thrive,” she says. “It’s strengthened because of our shared experiences being Jonathan’s sibling and with Jonathan’s Dream.”