How a Special Needs Family Found Community and Hope

By Joni and Friends|Published On: June 11, 2024|Categories: Family Retreats|

“Two are better than one, because they have a good return for their labor: If either of them falls down, one can help the other up.”
Ecclesiastes 4:9

There is no denying the importance of community. But for families living with disability, who often need the most support, welcoming community can be hard to find. Just ask Cindy, Charles, and their children Lena and Cyrus (lovingly nicknamed Zippy).

The Diagnosis

Cindy and Charles will never forget the appointment when they got the news. Their baby boy was at 21 weeks’ gestation and their daughter Lena was just over a year old. The diagnosis came as a shock: a rare muscular-skeletal disorder known as arthrogryposis. Affecting only 0.03% of babies, the condition causes chronic pain, difficulty breathing, and struggles with mobility.

Overwhelmed and spiraling in fear, Cindy couldn’t bring herself to research her baby’s condition for fear of what she would learn. But when Zippy was born, Cindy and Charles had to confront their fear. As a newborn, Zippy was stuck in his fetal position, too stiff to stretch out. Cindy couldn’t even place a finger in his hand because his fists were clenched so tightly. Worst of all, he was clearly in pain.

“I felt like I was constantly drowning…”

Doctors kept Zippy in the hospital for two weeks. And when he came home, life got harder. Zippy immediately began an intense regimen of therapies while the family struggled to adjust to the new normal. The isolation caused by the pandemic created even deeper feelings of loneliness because they were unable to see any of their family members or friends.

“I felt as if I was constantly drowning as I tried to figure everything out. Looking back, I realized that I was struggling with depression. We were very lonely.”
Cindy

Over time, the family slowly began to adjust. They learned how to make their house wheelchair accessible and how to work around Zippy’s five-day-a-week therapy sessions. While they managed to settle into a routine, they still needed community—a place to belong and be understood as they navigated life with disability.

Finding “People Who Really Care”

Seeking connection at a disability resource fair, Cindy and Charles met a member of the Joni and Friends team—a volunteer who offered to care for Zippy while his parents walked around to meet people. For Charles, this simple gesture spoke volumes.

He had a feeling that through Joni and Friends, they had found “people who really care.”

Cindy and Charles learned from another family living with disability about Joni and Friends Family Retreat. While they hesitated to register because of their heavy financial load from Zippy’s medical bills, they decided to learn more. And when Joni and Friends offered them a scholarship to attend Family Retreat, they eagerly took a leap of faith…

Arriving at Family Retreat

When they arrived at Family Retreat for the first time, Cindy and Charles were shocked by the excitement and warmth of the welcome they received.

“It surpasses words!” said Cindy.

After the first few days, shock turned into pure joy.

For the first time in years, Cindy and Charles felt like they could relate to people again. Building relationships, Cindy and Charles received wisdom and encouragement from other parents walking similar paths. They had found their community!

Of course, Family Retreat didn’t just impact Charles and Cindy. It also deeply affected two-year-old Zippy and four-year-old Lena.

“We loved watching Zippy and Lena engage in different activities. By the end of the week, they had made so many friends!”
Cindy

The couple describes the outpouring of love and compassion that Lena and Zippy received as a powerful testimony to the love of God. Throughout the week, Lena’s confidence increased. The siblings grew closer together and, upon returning home, immediately began to ask when they could come back to Family Retreat.

Lasting Hope

When families receive hope through the body of Christ at Family Retreat, the impact lasts, and multiplies. As Charles says:

“There is so much hope in seeing families who have not just survived, but who have found life and are thriving together. We were reminded that it’s not about just having children, it’s teaching them to understand that they can transform the world around them.”

You can make it possible for families living with disability to find hope, healing, and community through Family Retreat—and all our Gospel-centered programs and outreaches. Together we can move toward the Joni and Friends kingdom vision: a world where every person with a disability finds hope, dignity, and their place in the body of Christ.