Sharing the Love
Chuck and Gerry
Chuck DiCosimo remembers the difficulties that came with raising a child with special needs.
“You have to relearn all the things you do on a daily basis because you never know what to expect,” Chuck says of the challenges or phone calls that might come from school.
For four decades, he and his wife, Gerry, have been parents to and caretakers of Christine. She was diagnosed with Prader-Willi syndrome as a child, a condition that leaves her with an insatiable hunger.
“It’s pretty difficult for most people to think about going through their day and starving every minute of the day,” Chuck says. “Think about what it’s like when you haven’t eaten in a day or two and that’s what you feel like all the time.”
Christine copes by keeping busy, which in turn keeps Chuck and Gerry busy. It’s been a rewarding experience, but one that can also put a strain on a marriage.
“I think it’s very important for the caregivers to be involved in a support situation, because when you raise a family of special needs or medically compromised individuals, the stress is enormous,” Gerry says. “Sometimes it can take hold of your life and you don’t even realize that you’re only living to take care of someone.
“It’s very important you give time to each other and to yourself and you’ll become a better care provider because of that,” she says.
As longtime caregivers, they understood that importance and sought to give back at David’s Refuge, where they volunteer as a host couple.
“We went there with the intention of helping other people … and just meeting people with all their unique needs, it was just a blessing,” she says. “It helped us in many ways to understand that we weren’t alone and what we did matters.”
“I truly felt like I was living in another world and I never realized how many people were living in that situation,” she says.
That’s the work of David’s Refuge, which offers a setting for parents of children with special needs to rest, reflect and renew. The mission is about much more than a weekend getaway, though.
Host couples like the DiCosimos continue meaningful connections with fellow parents and David’s Refuge events bring families and the community together throughout the year.
“It’s about building communities,” she says. “Families are getting to know one another and it just grows and grows.”