Inclusion Matters

article by April Clark Honaker
photography by Kelly Moore Clark

The Sirmons are working with the City of Monroe  to raise  money for an inclusive playground at Forsythe Park.

When Hillary Sirmon was pregnant with her third child Benjamin, she always felt like something was different. It wasn’t until Benjamin’s dramatic delivery that she and her husband K.C. quickly realized how fragile his life was. It took some time to figure out what was happening, but eventually a diagnosis was made. Benjamin was born with a rare genetic disorder called DNM2 centronuclear myopathy.

The disorder allows for normal brain development but interferes with muscle development and results in severe progressive muscle weakness. Few children diagnosed with the disorder live beyond age 10. After receiving the diagnosis, Hillary said, “We knew we wouldn’t have him for long, but we also knew there was nothing we could really do to help him, so we just wanted to make him happy.” 

Hillary said when they were bringing Benjamin home from the hospital, the doctors made them feel as though their goal should be only to keep him comfortable and that they could not do much more than that, but he lived until a week after his third birthday and the Sirmons took him everywhere. Germwise their choice could have caused problems, and it did. But Hillary said, “I just felt like I would rather him have a full short life than a restricted long life at home, so we took him everywhere in that wheelchair, and he loved it. He loved every bit of it. He loved being around his siblings, and we took him to all the games and the zoo, and he loved every minute of it. And I’ve definitely seen in our communities the impact that Benjamin has made on other people, and if we’d have kept him at home that wouldn’t have happened.”

When Benjamin was about six months old, Hillary was taking him and his older sisters to the playground. As she watched his sisters play, she realized that when Benjamin was old enough to begin playing alongside them, they would have a problem. The average playground simply was not accessible to children like Benjamin.  

Hillary was unwilling to accept that Benjamin would not have a place to play and was determined to solve the problem. At the time, the Sirmons lived near New Orleans, and K.C. is from St. Charles Parish, so they decided to contact public officials there to ask if they raised enough money to buy an all-inclusive playground, they could install it. The parish was supportive, and over about seven months, Hillary was able to raise the funds for the playground, which was then installed in Destrehan, Louisiana.

Features of the playground included wheelchair ramps and color coding for children with visual difficulties, as well as special features for children with Autism. Unfortunately, right before the playground was finished, the Sirmons moved to Monroe. Hillary said they had not planned to move here, but K.C. found a job here after finishing medical school.

Around that time, Matt West of the West Monroe Civitan Club contacted Hillary. He was working to raise money for Civitan Smiles Park at Kiroli Park, so Hillary joined his efforts. It was helpful to have another similar project to turn her energy towards since her dream of watching Benjamin on the playground in Destrehan were never realized. 

Unfortunately, Benjamin passed away before the Smiles Park playground was completed. Even though Hillary was never able to watch Benjamin play on either of the playgrounds she worked so hard to help fund, loving Benjamin changed her and K.C. “He’s definitely changed our lives,” she said, “and made us look at things a little differently. I think K.C. and I both look at our kids a little differently. You look at the way life happens a little differently, knowing that you’re completely out of control of anything, and you just take it day by day and enjoy every minute while you can because you never know if it’ll be there tomorrow.” Losing Benjamin has also filled her with a desire to help other children with disabilities and their families have the opportunity to experience what Benjamin never did.  

Shortly after his funeral, Benjamin’s family and community donated $25,000 toward Smiles Park, which resulted in a play area and pavilion in the park being named after him. 

Hillary has continued to find ways to honor Benjamin’s memory, which led recently to her interest in the playground at Forsythe Park in Monroe. A couple of years ago the condition of the Forsythe Park playground started to weigh on her heart. She felt there were safety concerns and that the park was in dire need of updating. When this park started weighing on her, Hillary went to the City of Monroe and asked what the plans were for the playground. She was left with the impression that the City was trying to get grant funding and was working on plans to update the park. Then, several months passed and Hillary found herself starting to wake up every night around the same time. “It was just Benjamin pulling, going, ‘Come on. You’ve gotta do it. You’ve just gotta do it,’” she said.  

Shortly thereafter, Hillary called the City of Monroe and set up a meeting to present a plan similar to the one she had presented in St. Charles Parish. They agreed to let her move forward. Hillary was excited because not only would her efforts to raise funds for an all-inclusive playground at Forsythe Park benefit children playing there, but they would also offset some of the funding for other playgrounds in our area.  

Hillary is now working with some of the same people she worked with in Destrehan. Julie Smith was instrumental in designing the playground there and works as a project manager now for Struthers Recreation who is designing the new inclusive playground at Forsythe Park. Although plans are not complete, Hillary has begun raising funds to make sure the installation happens. She said her background, not only as Benjamin’s mom but also as a pediatric physical therapist, has been useful in communicating the needs of the park.

The budget for the project is currently between four and five hundred thousand dollars. In addition to being all-inclusive, the playground will be designed to blend into the natural environment of the park in a harmonious way. According to Hillary, the City of Monroe is using a company called Carbo Landscape Architecture to help design all the parks. “So we’re working together with their vision, the City’s vision, and what I know we need in an inclusive playground, where it will be beautiful and fit into the community and into Forsythe Park, but meet the needs of all the kids and adults as well,” she said.

The plans for Forsythe Park’s inclusive playground will be the result of extensive collaboration, and Hillary said the plans will be like a puzzle piece into Carbo’s larger design for all the parks. 

The Forsythe Park playground project will be Hillary’s third inclusive playground project. Although the budget for the project is large, Hillary is confident it will happen. Each project is a fulfilling way to remember Benjamin.

 “I think the playground thing, although it’s never easy, is my technique for grieving,” Hillary said. “It just keeps my mind busy. Starting all this up again…it’s amazing, and I love it, but it does bring up raw feelings sometimes. You kinda go back through that whole grieving process again of sadness and anger, but I know it just helps me, and it helps me keep him alive for my kids.” 

For Hillary, inclusion has always been important. Even before she had Benjamin or any children of her own, she was working with children with special needs in her career as a physical therapist. She has also spent time petitioning the school board to get wheelchair seating and ramps at the high school stadiums at Neville, Wossman, and Carroll. Her efforts have also led to a communication board for nonverbal children being placed on the playground at Lexington Elementary, so children can select pictures to let others know what they want.

Hillary said all of these efforts are not only a distraction for her and a place to focus her energy. “They also give meaning. They give meaning to his life and a purpose,” she said, “and I think it’s just great for the kids to be able to still feel connected.” Benjamin has four siblings, Lennon, Isla, Rush, and Kateri. 

In addition to changing Hillary and her husband, Benjamin’s life made a huge positive impact on his siblings. “My children are very compassionate,” Hillary said, “and they’re just very thoughtful of others.” At times, Benjamin’s siblings would have to help Hillary perform CPR or administer other life-saving medical care. “They definitely saw things that most kids would not have seen at their age,” Hillary said. “It’s not common to have a two year old help save someone’s life, but it just changed them in such an amazing way, and I just really feel like every kid should have that opportunity. There’s no better place to learn about other people at that age than on the playground.”

Hillary said her experience as Benjamin’s mom really opened her eyes to the financial stress that many families face when caring for a child or loved one with a disabling medical condition. Benjamin was dependent on a ventilator, and his nursing care cost over $20,000 a month. To help care for him, Hillary was unable to work full time, and her husband was in medical school. When Benjamin was about six months old, they started earning just enough income that Benjamin no longer qualified for disability insurance income, which paid for virtually everything, including nursing care and therapy. 

With the loss of this support soon coming to an end, Hillary said they would go to the state capitol and speak to lawmakers to try to get better services for kids whose families had some income but not enough income to support a child who is seriously ill or on a ventilator. When she was giving these talks, Hillary said, “I always felt like if I could reach kids now, to have them understand the needs of other people, then maybe I wouldn’t be up here in 30 years still fighting for the same thing for my child.” 

So this experience was also part of the underlying motivation for the playgrounds. “If I could teach these kids when they’re seven or eight, I wouldn’t have to be at the state capitol anymore in 30 years. Those kids would be in positions to make a difference.”

Hillary’s hope is not only to have this project fully funded but also that in the future communities will begin to think about ways to make playgrounds inclusive at the moment planning begins. She said that working hard to see inclusive playgrounds brought to life hurts because Benjamin was never able to play at one, but at the same time, she said, “Seeing other kids be happy, and seeing life made a little bit easier for some of the kids that may struggle is so rewarding.” 

It will also mean the world to her to see her kids’ faces light up when they play at the new Forsythe Park playground for the first time. “When you lose a child, you don’t want them to be forgotten–by anyone–so anything I can do to keep his name alive helps me grieve but also know that he did have a purpose. There was a real purpose for those three years and not just for my family but hopefully for the community as well. It’s nice making other kids’ lives that are kinda challenging sometimes a little bit easier and a little happier.”

For those interested in donating to the Forsythe Park playground project, the John Clarke Perry Foundation, which is a local nonprofit that provides support to families with children in need of life-saving medical treatments, is serving as fiscal agent for the project. Checks can be mailed to 4213 Adaline Lane, Monroe, LA 71201, or donations can be made online at johnclarkperryfoundation.com. When making donations for the playground project, please include the word “playground” in the memo line of your check or in the comments when donating online.