A Special Gift

While leading one of the fastest-growing churches in the nation, Jeremy and Jen DeWeerdt were forced to re-evaluate their lives when their son was born with Down syndrome. What they discovered has since changed their community.

Blond wisps frame his little face. “Hi,” he mouths before extending his tiny fingers outward. Held closely by his mother, Paxton DeWeerdt steals the show. He giggles and recoils around strangers like any other 18-month-old.

But he’s not any other 18-month-old. He’s the third son of Jeremy and Jen DeWeerdt, pastors of Rockford First Church in Rockford, Ill. And Paxton, or “Pax” as they call him, has Down syndrome.

Down syndrome is a genetic condition that causes delays in physical and intellectual development. According to the National Association of Down Syndrome, one in every 691 babies in the United States is born with Down syndrome, making it the most common chromosomal disorder. Yet a 2007 New York Times article reports that 90 percent of the women who get a Down syndrome diagnosis never have the child.

Not even two years in the world, Paxton can’t possibly understand the buzz that surrounds him, but his parents do. In the time since his birth, he has changed their lives, their perspective and their ministry as leaders of one of the fastest-growing congregations in the nation.

At the Start

Jeremy DeWeerdt grew up in Rockford, about an hour northwest of Chicago. He intended to make his mark far from home, using his business background to catapult his career.

“I didn’t dream that I’d still be here,” says the Rockford native, who admits it took years for him to get his life on track with the Lord. “I thought I’d be on a trajectory out.”

But God had other plans. Shortly after earning his associate’s degree from the local Rock Valley College, DeWeerdt worked at a machine shop by day and assisted the youth ministry at his home church by night and on the weekends. It wasn’t long before he found his calling. At the time, the church youth pastor, Jeanne Mayo, and DeWeerdt spearheaded outreach initiatives that increased youth membership exponentially. DeWeerdt went on to launch Focus One (formerly called Rockford Master’s Commission), a post-high-school discipleship program that allows young adults to focus on their relationship with God and the local church and gain a heart for ministry.

Once he had committed to God and ministry (he became an ordained Assemblies of God minister), DeWeerdt was totally in. “I really thought that I’d do youth ministry the rest of my life,” he says.

So in 2007, when the church board approached DeWeerdt about taking on the lead pastor role, it took considerable thought.

He and Jen had some misgivings. They weren’t sure what they’d be getting themselves into. But in the end, they decided that they needed to do it. 

“This was more than a stopping place for us,” Jen DeWeerdt recalls. It was her great-uncle, the late pastor Eugene Whitcomb, who moved the church from downtown Rockford to its present location. “We felt that it was our church.”

On April 29, 2007, after a 92 percent favorable congregational vote, Jeremy DeWeerdt became lead pastor of Rockford First Church at age 37. He was the church’s sixth pastor in recent history and one of its youngest.

What DeWeerdt didn’t know was that he inherited more than history. The church was in dire financial straits and months away from bankruptcy. Moreover, membership had waned.

Turbulent times called for drastic measures, and the DeWeerdts watched as friendships fell to the wayside when they made hard personnel decisions in an effort to help save the church. Ultimately such decisions, among others, paid off—but at a price. 

“We felt like we disappointed them,” DeWeerdt says. “To this day, it still stinks.”

By 2009, after cutting more than $1 million from the church budget, Rockford First began to see a positive cash flow. From the pulpit, things also improved, as church seats started to fill.

Many new parishioners knew nothing about God or church. They appreciated DeWeerdt’s laid-back teaching style, emphasized by casual dress. DeWeerdt turned what had been a more traditional church-service format on its ear. The experience felt inviting, especially to the unchurched, who enjoyed hearing the Word of God taught in simple terms amid lively praise and worship music, thanks to big screens, big sounds and big, colorful spotlights beaming in every direction.

“I just believed that God would bless a church that was reaching out to those who were far from Him,” says DeWeerdt, who celebrated his sixth year as lead pastor this spring. Over time, attendance “tripled in growth,” notes Dan Valentine, senior associate pastor and executive director of ministry operations. (Valentine and his wife, Megan, are among the 14-person pastoral leadership team.) And last year, Rockford First landed on Outreach magazine’s Top 100 list as the seventh fastest-growing church in the nation. Such church vitality seemed like an answered prayer.

Yet God had more in store.

Birth of an Invitation

Paxton, who is the third son born to the DeWeerdts, was scheduled to be delivered by C-section in October 2011—the same week Jeremy was prepping to give a sermon on God’s supernatural power.

Months before Paxton’s birth, the DeWeerdts’ physician had mentioned the possibility of his having Down syndrome, but this was later ruled out, and the doctor told the couple he fully expected the baby to be “perfect,” they recall.

On delivery day, anxious chatter and the clanking of surgical instruments filled the air above Jen, who was prepped by medical staff for surgery. A curtain was pulled over the lower half of her body, and a giddy Jeremy prepared to take snapshots of his new son.

That’s when everything started moving in slow motion. 

Post-surgery, the baby was whisked away to be cleaned up, and sounds ceased as nurses and doctors hovered over Paxton like bees.

“We had concerns early on, and it looks like signs of Down syndrome,” the doctor told the couple.

Perhaps this information would not have been so jarring had the DeWeerdts known ahead of time that the possibility of Paxton being born with Down syndrome was a real concern. Stunned, grieved and confused, the parents didn’t know what to do. When the nurses prepared Paxton for the nursery, Jeremy followed along so as to prepare the family members that had camped out in the waiting room.

The mood moved from excited to sober and back. By the end of the day, the couple was physically and emotionally drained, and Jeremy recalls that when he finally collapsed, he went directly to a bathroom, near the nurse’s unit. 

“I sat in the corner and cried. I sobbed,” he says.

Both Jen and Jeremy were ecstatic about their new baby, but they had not planned for him be a child with special needs, nor did they know much about Down syndrome. Over the next two days, they hugged each other, cried together, snuggled with their baby and prayed to God.

By God’s grace, that Saturday—two days after Paxton’s birth—they found themselves at peace. 

“We woke up Saturday morning and knew that there was a reason for this,” Jeremy recalls. There was a realization that this was their “new normal.”

“We all kind of manned up,” Jen says. “There was a sense of this divine strength and grace—and the name Paxton means peace.”

Following that peace, Jeremy was convinced he needed to preach that Sunday. He and Jen prepared an announcement to be delivered as part of the sermon. In it, he told congregants that Paxton was a blessing, that the family did not expect to receive condolences and that the doctor was right: Paxton is perfect just as God made him.

“I wanted it to be a tone of faith and honesty,” Jeremy says.

After the church message that day, the couple sent out tweets and Facebook messages to friends around the globe. The outpouring of support overwhelmed them.

A Turn in Ministry

Among those who responded was Nick Nilson, the young adult pastor at Joel Osteen’s Lakewood Church in Houston who had previously served as pastor of Rockford First. Nilson shared the DeWeerdts’ story with Craig Johnson, senior director of Lakewood’s family ministry and the father of an autistic son. At Lakewood, Johnson had launched a new outreach program for children with special needs that later served as a blueprint for other churches around the world.

The program, called Champions Club, was designed to allow parents of children with special needs to go to church services while their children enjoyed lively interaction in an environment developed to provide sensory stimulation and spiritual growth.

Immediately, the DeWeerdts knew Rockford First needed such a ministry. Not only would they enjoy having the facility for Paxton’s use, but they wondered how many other parents in the community would benefit from such a place.

Says Valentine, “It was birthed out of their realization that some churches turn away these families. Some people are not welcome and are considered disruptive.”

Church leaders at Rockford First hired a professional design team and determined the church needed $100,000 to build a four-room facility to provide educational, physical, spiritual and sensory therapy in spaces replete with foam slides, iPad-guided Bible games, fiber-optic light threads, hammocks and more. 

The team wondered how they would pull off such a financial campaign in the middle of summer, when attendance is typically low, but within five weeks, they met their goal—with an additional $10,000 to boot.

By Oct. 7, 2012, a year and a day after Paxton’s birth, the Champions Club opened at Rockford First. It is now one of several churches through the United States, Europe and the Middle East to offer this unique brand of ministry. Weekly, more than 30 children, from birth to age 12, are serviced in the Champion Club rooms at Rockford First by one-on-one volunteers.

Already it has proven to be a special blessing. One mother, who once was sent to the back of a restaurant so that her daughter (who wore a safety helmet) would not disturb patrons, was relieved to find the program.

DeWeerdt recalls that she told him, “This is the first time my daughter was treated like a princess.”

“When you have a child with special needs,” he explains, “you might get a look or glance. But at the Champions Club, they are accepted with a smile and made to feel like a VIP.”

Jen says church members love to volunteer for the program, and a fifth room in the space is scheduled to be built soon for teens with special needs. The DeWeerdts are now looking to extend the ministry to the greater community and to partner with local organizations to reach other families.

All in His Plan

“Looking back now, Paxton’s changed thousands of people,” says Jen, who shares many of Paxton’s cute moments with other mothers of kids with special needs—some as far as Poland—via Instagram.

Brothers Caden and Connor have also fully embraced Paxton and work heartily in ministry with their parents and the Champions Club. 

“They have become much more passionate people,” their dad says of the two brothers. “They’ll notice if another family has a child with special needs. Their bandwidth of compassion has grown.”

Grappling with what being parents to a child with special needs meant for them, the DeWeerdts sought the Lord—and the revelation is still very fresh. Just the mention of their son now floods both parents with emotion. Their faces burn red with a love so deep they can’t even put it into words. Full of emotion, Jen says, “I call him the most divine thing that I’ve been a part of.”

“It’s damaged and challenged people who give hope to the world,” Jeremy says. “I used to hold up a sign at church that said, ‘No perfect people allowed.’ Well, we don’t look like perfect people or act perfect. This whole six years of ministry has been divinely orchestrated by God, and it’s so much bigger than us.”

Lisa Jones Townsel is a freelance writer and editor based in the Chicago area.