Upon returning home to Carmel, IN, the Bennett’s had plenty of time to reflect on their recent experience. While corralling four children - one with special needs - toting ski equipment back and forth, and dealing with the hustle and bustle of one of North America’s busiest ski resorts is not for the faint of heart, the memories that were made are irreplaceable. Even for Cecilia.
“She now talks about Colorado and skiing,” says Ellie. “She could be throwing a fit, but two days later she will say ‘I want to go skiing.’ “That’s just kind of how her syndrome and brain are, but I think she’ll have the memory of this experience forever.”
She may not have to hold onto these memories because if mom gets her way, there'll be plenty more reminders to add to the memory bank, as there will most likely be another trip to the BOEC on the horizon.
“For sure, one hundred percent,” says Ellie when asked if she would come back. “A lot of the apprehension about doing things like this as a special needs family is the unknown. Now that we know about the BOEC and how things are going to go, it just makes it so much easier in your head and to explain to your non-neurotypical kid.”
As the 2021-22 winter winds down, another trip to Colorado isn't necessarily feasible this year, so in the meantime, Cecilia will have to keep busy with kindergarten, slam dunks on her basement basketball hoop, swimming, riding her tricycle, and, of course, dancing like nobody’s watching.
As for the Bennett family, the status quo is still not on the agenda. While the three boys keep occupied with various activities in the Indianapolis suburbs, Billy is busy with his career in pediatrics and serving on the PMS Foundation Medical Advisory Committee, and Ellie has paused her nursing career to run her very own nonprofit, Cecilia’s Advice, aimed at raising money and creating awareness about Phelan-McDermid syndrome.
“I started Cecilia’s Advice so we could raise money for the PMSF for several things,” says Ellie. “Most importantly, though, is so we can collaborate with other specialties and physicians to raise money for research so we can figure out more about our kiddos. There’s no cure, so there’s a lot of research that needs to be done to figure out what goes on with them.”
While the PMSF and other medical centers around the country conduct their research and studies, those living with PMS and their families continue to live their lives the only way they know how. For the Bennetts, that means living life to the fullest and giving Cecilia all of the amazing experiences that she deserves. When Ellie thinks back to her family's BOEC experience, she urges others to do the same.
“I feel like anyone with any type of disability deserves an experience like any other neurotypical kid or person,” she states. “Take that leap even if it sounds like too much to do. They need those fun memories and those adventures and experiences that their brothers, sisters, or friends can do. I don’t know many places like the BOEC, you’ve done a fantastic job there.”