MINNEAPOLIS — Thani Cullen couldn't believe what she was seeing. But the words, though squished together, were clear. "God is a good giver."
They'd been written on an iPad by her 6-year-old son Josiah, born with a severe, non-verbal form of autism. And this, his first independent sentence, blew her away.
"It was in that moment that life shifted," Cullen recalls. "Those words took us into a whole new journey, and they became our thesis statement for life."
She understood that something rich was stirring inside her son's soul, and he was much more than the labels he'd been given.
Now 12, Josiah "is still very much affected by autism, it's still very hard." But she'll never see her son the same. "He's an amazing little writer. He's a poet," Cullen says, noting that she often displays his "quotes" and is constantly learning from Josiah and the way he sees the world. "He feels things just like everybody else does, and even deeper.'"
Cullen shares the experience in her book, "Josiah's Fire," that bears the subtitle, "Autism stole his words; God gave him a voice."
She says about 80 percent of parents of children with a chronic disease or diagnosis experience what's called "chronic sorrow." And many ask, as she did after her son's diagnosis, "Are our lives, our dreams over?"
But God, she says, gave her permission and a license to hope again.
"Through words in the Bible, we can find that when we make decisions, when we speak and talk and navigate life, there's an edge of hope about it," she says.
At the upcoming 11th annual Rest and Rejuv event for mothers of children with disabilities, participants will be treated to brunch, pampering and Cullen's uplifting words at Hope Lutheran Church in Fargo.
"Essentially the message I'm going to want to bring to these parents and caregivers is, 'Get your hopes up!' " Cullen says. "Despite everything, we still have a right and a way to construct the best possible life."
Brianna Schjei, West Fargo, attended the event in the past, and says she appreciated the chance to have a day "to not have to chase (kids) and worry about things."
As a mother of a 6-year-old diagnosed with autism, who also runs an at-home daycare to be home with her son, Schjei says she's "on" Monday to Sunday.
She encourages other mothers to attend, even if they feel reluctant. "It's always scary to go to things by yourself, but you can bring a family member, sister, or friend along," she says.
Judy Siegle, founder, says this event is her passion.
"I'm a quadriplegic myself. I broke my neck in a car accident at 18, and I had no idea the challenges families with disabilities face," she says.
Siegle says one of the most detrimental is feeling disconnected to their faith communities, because the challenges can be overwhelming. "A diagnosis is 24-7, and parents either divorce, or they're just exhausted," she says. "There are also the huge financial costs and feelings of being overwhelmed. We want these families to know we want them in our churches. We are all the body of Christ. The fact is that I need help, and God has another part of the body gifted to support me."
The event is hosted by the Inclusion Ministry Network that formed locally in 1999, and comprises many denominations.
"I feel so passionate that everybody needs to be at the table, and that in our churches, we need to make some accommodations," Siegle concludes. "This is a day for us to just love on these moms, with massages, mini-manicures, breakout sessions, and plenty of coffee and chocolate."
If You Go
What: 11th annual "Upheld" Rest & Rejuv event for caregivers and family of children with special needs, featuring Tahni Cullen
When: 6 to 7:30 p.m., Friday, Nov. 3, pop, pizza and a program for young adults, parents and caregivers; 9 a.m. to 1 p.m., Saturday, Nov. 4, brunch, breakout sessions, door prizes and pampering for mothers of children with special needs
Where: Hope Lutheran Church North, 2900 N. Broadway, Fargo
Contact: Register by Oct. 31 by contacting Cindy at email@example.com or (701) 429-1724
Roxane B. Salonen is a freelance writer who lives in Fargo with her husband and five children. If you have a story of faith to share with her, email firstname.lastname@example.org.