Editor’s Note: This story was originally published in December 2020. By a wide margin, it is the most-read and most-shared post in this blog’s history. We present it again in honor of what would have been Darcie’s 56th birthday.
“There’s no greater feeling than winning a race.”
–Jeff Gordon, NASCAR driver
This is the story of a beautiful girl who won lots of races. It’s about a close family that grew around that girl and protected her, swords drawn. It’s about unconditional love, and a precious gift disguised to some as a burden. It’s a story that changed more people than we can count.
Darcie Beth Eklund came into the world three weeks early, on a Monday afternoon—Oct. 17, 1966—the day before her dad Bruce’s 23rd birthday. Paula was 21; they’d been married three years and Darcie was their second child. Bruce was working in Chicago that day and, because no cellphones existed then, he didn’t get the news until after Paula had delivered. He rushed home to Rockford.
Paula got to hold her daughter briefly that afternoon. Darcie weighed 8½ pounds and looked perfect. In those days, newborns didn’t spend much time in their moms’ hospital rooms. By the time Bruce arrived, the nurses had taken her to the nursery for the night.
The next morning, Paula’s doctor broke the news. Darcie had a tiny hole in her heart. She would have to stay in the hospital for a while and would need surgery if it didn’t close on its own.
There was more. Darcie was “mongoloid,” known more kindly today as Down syndrome.
“I’m sorry,” he said, and left the room, crying.
A hospital staff member came by and said: “If God is good to you, he’ll take her away from you.” She told Bruce and Paula not to even take Darcie home. Better to put her in an institution and leave here there.
“Get out of this room!” Paula shouted. “Don’t ever come back in here again!”
Disqualified. For the next 47½ years, that would be how the Eklund family rebuked any voice that tried to tell them the race they were running wasn’t worth the trouble … that Darcie’s life would never amount to anything. Disqualified. Those voices would never be allowed a spot anywhere near this race. Ever.
About half of Down syndrome babies are born with congenital heart issues. In the coming weeks, Darcie’s heart healed without surgery. “Prayers were involved,” Bruce says. With encouragement from their pediatrician, the couple told the hospital they were taking Darcie home, no matter what. She looked fine — “Like a regular baby,” Bruce recalls with a smile. Down syndrome, or that other ugly name? They didn’t even know what it was. Bruce couldn’t recall ever in his life encountering another Down syndrome person.
“They would just put them away,” Paula says. “There was no way I would ever leave Darcie or send her somewhere.”
When they brought Darcie home, she joined big brother Doug, who was 2. Bruce and Paula did everything new parents do with any baby. Nothing felt out of the ordinary. “She was a really cute little thing,” Bruce says. “She looked fine to us.”
At the suggestion of their pediatrician, they had Darcie tested when she got a little older. The woman who tested her told them: “She’ll never learn anything. All she’ll learn is where the bathroom is and where the exit is. She’s not teachable. She’s trainable.”
When Darcie was 3, Bruce and Paula enrolled her at the Barbara Olson School of Hope. Paula went every day, too, as a helper. That was when they began to truly understand how the mentally disabled community works — and the race that lay ahead.
After Darcie had been at the school a short time, Paula told them about the earlier prognosis.
“Oh, no,” they said. “She’s teachable.”
“My attitude is that if you push me towards something that you think is a weakness, then I will turn that perceived weakness into a strength.”
–Michael Jordan, one of Darcie’s heroes
Darcie did well socially in school. She did even better in sports. When she was 8, Bruce and Paula got her into the Special Olympics, and she immediately excelled. Running wasn’t her thing right away, but swimming was.
“When you’re in the state meet, you have to be 10 to compete,” Bruce says. “We didn’t know that at the time. She competed in Chicago when she was 8 years old on the swimming team, and won. But they wouldn’t let her go downstate because she wasn’t 10 yet.”
That wouldn’t be a problem for long. Over the decades Darcie collected hundreds of medals in swimming, then track and field, bowling, softball, you name it. She set state records. As a member of the volleyball team representing Illinois, she even competed in the 1999 World Summer Games in North Carolina.
If you’ve never been to a Special Olympics event, understand that competition is intense, but it is overwhelmed by love. After races, many of the athletes hug each other or run joyfully into the arms of family, coaches or volunteers. Darcie never ran short of people to hug after her events.
That’s another thing about the Eklund family. No one misses a game. Bruce and Paula counted it up recently, and they estimate they’ve attended 4,300 sports events for their kids and grandkids during their 57-year marriage. Darcie’s younger brothers, Derek and Dustin, even became Special Olympics coaches as they got older.
“Part of what Special Olympics is trying to do is break down stereotypes that still exist for people. There is still a lot of fear.”
—Maria Shriver, whom the Eklunds met during the World Summer Games
Darcie’s three brothers went to her Special Olympics events long before they realized anything was special about her. “All of the boys, sometime around when they were 11 or 12, asked us, ‘What’s wrong with Darcie?’ Bruce says. “It was the first time it hit them that she was different.”
The family always protected her fiercely. When necessary, the swords came out. Like when Darcie was 14 and in seventh grade at Lincoln Junior High.
“Some kid took her lunch from her in the hallway — which was a mistake for the kid,” Bruce remembers.
Len Guenzler, the principal, telephoned later that day.
“We have to suspend your daughter for fighting,” he said.
Darcie wound up serving in-school suspension, sitting in the principal’s office. What the school hadn’t expected was that Bruce would be sitting there with her.
“I didn’t say anything,” he says. “I just went and sat in the chair. About two hours later, Len comes out and says ‘What are you doing?’ I said, ‘As long as she’s here, I’m here.’ And he said, ‘Well, I think we could end this.’ So we went home that day and she went back to regular school the next day.”
Kids quickly learned that if they picked on Darcie, they’d soon face the wrath of her much-larger brothers. She thrived at Jefferson High School, where she could take all special-education classes (except for regular gym, where she did just fine). She was at Jefferson when Doug was on most of the sports teams, and later when Derek was. Their friends all knew Darcie. She was at every game, every practice.
Paula answered the phone one afternoon. It was Leonard Bell, a friend of Doug’s who would go on to play in the National Football League.
“I’ve got Darcie here,” he said. “Some kids were trying to harass her. The football team took care of her.”
“The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’
In the early 1980s, it was estimated that about 10 percent of the American population lived with a disability, including 3 percent with an intellectual disability. Bruce was sitting in church with Darcie one Sunday. As he looked around First Free’s full auditorium, a thought struck him: How in a church of 2,000 people is there not one other disabled person here?
When Darcie was younger, she went to Sunday School with the little kids. Now that she was a teenager, the church didn’t have a place for her. She could read at a third-grade level. She still loved to sing Jesus Loves Me with the kids, but she needed something different for church.
Bruce spoke with administrative pastor Jim Forstrom, and then the two of them met with four women from the church. All loved the idea of developing a new ministry for special-needs people. Jim did add a strong recommendation.
“He said, programs come and go in a church this size,” Bruce recalls. “One person is running it and they get tired, and then it kind of goes away. The only way this was going to work was if it was considered part of the ministry of the church, and was funded.
“So it got put into the budget. And it still is there to this day.”
The Eklunds invited some of the Special Olympics kids they knew, spread the word among other contacts, and First Free’s Special Ministries was born. Initially the church sent small teams to several group homes—RocVale, Walter Lawson, Milestone. But the volunteers were missing church with their families.
“We said, we need a place,” Bruce says. First Free’s gymnasium wasn’t being used on Sunday mornings, so the fit became obvious. The church would provide transportation to those who needed it. Ace Holsinger came with his guitar and led singing (and he still does). Jim Rosene, who is Bruce’s cousin and then was the children’s pastor, brought the puppet team.
“We’d make noise and play loud music, and they would just squeal. It was really awesome,” Bruce says. “We were the first church in Rockford to do this.”
Bruce and Paula still visit Special Ministries now and then (though the group has not been meeting during the pandemic). Some of the people they’ve known for a long time call them Mom and Dad. They do have to choose the best time to enter the gym, because so many people want to hug them that it interrupts the class.
“Winners, I am convinced, imagine their dreams first. They want it with all their heart and expect it to come true. There is, I believe, no other way to live.”
—Joe Montana, Darcie’s favorite athlete
Darcie stories would fill a hundred books. There was the time when Derek, who was terrified of snakes, came home after a date. He went up to his bedroom and pulled back the covers to find a rubber snake in his bed. The whole household heard him scream: DAR-CEEEE!
“And you could hear her in her room, giggling,” Bruce says.
Any time the boys had girlfriends at the house, she played to perfection the role of the annoying little sister, hiding behind the sofa. “Kissie poo, kissie kissie!” she’d tease.
Years earlier, one of Doug’s friends used to babysit for the younger kids, including Darcie. At the time, she had a pair of boxing gloves. Doug’s friend put one on and playfully tapped Darcie, who was wearing the other one. She hauled off and almost knocked him out.
“He never babysat for us after that,” Bruce says.
Sports were serious business. With all four of the Eklund kids, and later some of their kids, being good athletes, Darcie attended thousands of games including her own. She loved watching sports on TV, too, especially when a game was about to start. “If you were sitting on the couch watching a game and the national anthem came on, she would stand up,” Bruce says. “And then everybody had to stand up. That was her favorite song. She took it seriously.”
When Darcie latched onto a sports hero, you could forget about talking her out of it.
While her brothers liked the Minnesota Vikings, she loved the San Francisco 49ers and especially Joe Montana. Posters and plaques filled her room: Michael Jordan, Jeff Gordon, the Chicago Cubs.
She was a bridesmaid in all three of her brothers’ weddings, plus a few more. All three of her sisters-in-law treasured her, as did her eventual nieces and nephews. It was easy to forget that others didn’t always see Darcie the same way. Some of her employers made extra efforts to find the best situations for her. Others didn’t. Once at a restaurant where she worked, a couple of kitchen employees didn’t like her, and thought it would be funny to lock her inside a walk-in freezer for 20 minutes. Disqualified. Bruce and Paula quickly found Darcie a better place to work.
Dementia crept up in Darcie’s later years. The condition strikes about a quarter of Down syndrome adults. Bruce and Paula would awaken to hear her walking around the house in the middle of the night. They had to put locks and sensors on all the doors so she wouldn’t wander outside. Eventually, caring for her became more than they could handle alone. After a frustrating search, they found a great fit: Fair Oaks Health Care Center in South Beloit. Darcie quickly became the center’s most popular resident with the staff. When she became bedridden, she loved the musical TV show Glee, so the nurses would come into her room and sing the songs with her.
And let us run with endurance the race God has set before us.
Taken just before Darcie died. With brothers Dustin, Derek and Doug at the nursing center.
The song of Darcie’s life grew louder and more beautiful, even in those final months as she forgot how to walk or to speak coherently. Even as she couldn’t remember people anymore, not even her parents.
Fear or despair? Disqualified. Sad resignation? Disqualified. Near the end, Bruce and Paula stayed for a week at Fair Oaks with Darcie. Derek and his wife, Dana, brought in a La-Z-Boy chair, to go with the other one already in the room. Darcie would lie in her bed, Bruce and Paula in the chairs. They slept that way, all holding hands.
A Hollywood scriptwriter might have dismissed what happened the night Darcie died — Feb. 19, 2014 — as too good to be true. All three of her brothers were there, along with Bruce and Paula, Dana and her two boys. As they held hands around the bed, Darcie began to murmur. They listened closer. She was singing.
Jesus loves me, this I know,
For the Bible tells me so.
Little ones to him belong.
They are weak, but he is strong.
Then Darcie closed her eyes and ran her best race yet, into the arms of her Savior.
“Blessed are the pure in heart, for they shall see God.”
The funeral service at First Free opened, of course, with Darcie’s favorite song. The Star-Spangled Banner. The anthem was never sung with more gusto.
Darcie’s three sisters-in-law spoke. “How many people can say they lived their life with no regrets?” Dana asked the audience. “Darcie did.”
Cheryl, Doug’s wife, read Colossians 3:12 — “Therefore, as God’s chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness and patience.”
She turned to Bruce and Paula.
“You did a great job.”
Then, all of the Special Olympians present were invited to the stage. For several minutes, they just kept coming and coming. When all 45 of them finally settled, together they recited the Special Olympics Oath in Darcie’s honor: “Let me win. But if I cannot win, let me be brave in the attempt.”
It was one of those moments when the veil between heaven and earth felt especially thin.
After the service, Bruce lingered at Darcie’s still-open casket.
“It might be 30 years before I see her again,” he said. “I want to get one last look.”
“He said ‘Love … as I have loved you.’ We cannot love too much.”
― Amy Carmichael, missionary
‘We were the blessed ones’
If you tried to total up the impact of Darcie’s life … well, that’s like trying to measure a home run while the ball is still rising. Bruce and Paula still hear often from Special Olympics families, Special Ministries families, even Darcie’s nurses and doctors. They all want to talk about how Darcie inspired them.
Every room of the Eklunds’ home abounds with family pictures and mementos. What was once Darcie’s bedroom is now the dining room. A large photo portrait of her overlooks the table — a reminder at family gatherings that she is still very much present in all of them.
Today, prenatal genetic testing can reveal to expectant parents if their baby has Down syndrome. The abortion rate for such babies is about 90 percent. Couples who do have a special-needs child also face a high probability of divorce. After 47½ years of parenting Darcie, and now almost seven without her, Bruce and Paula just shrug. They disqualified voices like that decades ago.
“After Darcie passed away,” Paula says, “people asked us ‘How did you do that all these years?’ But she wasn’t a burden to us at all. We were fortunate that we got her rather than somebody who would not have wanted to take care of her. That’s the way we have always looked at it.”
“We felt like we were the blessed ones,” Bruce adds. “God gave us a mission, and he let us drag a whole bunch of people along with us.”
For a printable version of this story, click here.