The congregants gathered under the high ceiling of an old Methodist mission. Ozark limestone lined the long narrow walls, and the shotgun-style sanctuary was candlelit. While an already packed house filled to overflowing, the house band swung a soft tune. This was not a Sunday church service; this was a special gathering, an ecumenical Thursday night celebration. This was the release party for Matt Mooney’s new book, A Story Unfinished: 99 Days with Eliot.
Once the crowd was welcomed, readers took the stage. Snippet by snippet, they unpacked what began as a near-cliché love story—boy and girl meet, fall in love, get married, and begin working their way toward a middle-class American version of happily ever after. As it moved toward the perfect suburban ending, things went awry.
After five years of marriage, Ginny discovered that she was expecting a baby boy, and they named him Eliot. The pregnancy progressed normally, but just eight weeks before Eliot’s birth, the news came—he would have a severe, life-threatening birth defect. Though the young couple would hold out hope and pray that a faithful God would perform some grand miracle, on July 20, 2006, Eliot Mooney entered the world, bearing extra material from chromosome 18. Little is known about the cause of the genetic anomaly known as Trisomy 18, or Edwards syndrome, but the disease is ravaging and claims 91 percent of patients before their first birthday.
One after another, readers closed their books and, with tears in their eyes, exited stage right. Finally, Matt made his way to the microphone and surveyed the audience. He thanked everyone for coming and then turned to his dog-eared page. “Eliot lived only 99 days,” he said, “but they were full days. How do you measure a life? By years? By esteem? By productivity? We propose that Eliot’s life be measured by impact. Thus, his was truly a full life.”
I considered the statement. I’ve known the Mooneys for some time, and I remembered how they were spurred to action after his passing. In the months following their loss, the couple founded 99 Balloons—an organization that champions children with disabilities—and began rEcess, a program that provides a respite night for the parents of children with disabilities. I recalled their work with international special-needs orphans, and the partnership they initiated with local therapists who were traveling to assist underserved orphanages in Ukraine.
“We propose that Eliot’s life be measured by impact. Thus, his was truly a full life.”
And if the story had ended there, it would have been enough. The Mooneys’ story, though, was decidedly unfinished.
Matt finished reading and stepped away from the microphone. The house lights gave way to the projection screen above the stage. “I belong to you, you belong to me, my sweetheart,” the band sang as a video of the Mooneys’ older daughter played. Though Lena was diagnosed with global delays and multiple profound disabilities, the Mooneys adopted her from Ukraine in January 2012. Appearing joyful and resplendent on the video, Lena is the current chapter of the Mooneys’ narrative-in-progress.
A quiet joy came over the mission as the house lights brightened, and we were dismissed. But I was left with some nagging questions. After such a profound loss, why did the Mooneys begin working with children with disabilities? Why did they travel to a distant country to adopt a girl who would never live a fully independent life? After all, Ginny had given birth to two other healthy, beautiful babies—Hazel and Anders. They could have quietly mourned Eliot, could have tried their best to push through the pain and create a normal American life.
Months later, I arrive at their brown ranch-style house. Tucked away in a mature but understated neighborhood across from the University of Arkansas, the Mooney’s home conjures a warm sense of nostalgia. The landscaping is neat but sparse, and the grass, thanks to a late drought, crunches underfoot.
I’m greeted by Ginny’s voice through the door, and she tells me to let myself in. I walk past the recycling boxes and a pair of kicked-off high heels into an otherwise meticulous house, which is decorated with retro homages to the '50s and '60s. From their classic vinyl collection to an assortment of vintage film cameras, their style reflects a commitment to a simpler, less edited life.
Ginny is in the back, tending to Lena’s morning routine when I arrive. Hazel and Anders are playing tag in the yard, and I watch through the plate glass as Hazel grazes her brother’s squirming shoulder and the two collapse in laughter.
“Coffee?” I hear from behind. “I hope you like it bold,” Matt says. “They only had the Yukon blend left.”
We pour our cups, and Ginny and Lena enter from the back room. Lena’s legs wobble like a newborn doe’s, carrying her forward in a sort of stiff-legged shuffle. Halfway across the room, excitement sets in, and her gait becomes more pronounced. She is taking heavy, stomping steps when Ginny turns and says, “Quiet body, Lena.” The girl stops, slows, and eases back into her slower gait.
“It’s part of her sensory disorder,” Ginny tells me. “It is not an uncommon trait in children with severe autism.”
I watch as Lena makes her way to the couch and sits. She picks up a book, holds it three inches from her bespectacled eyes, and giggles at the pictures on each page.
Unsure of how to broach the delicate subject, I lumber into the conversation and ask the things that have been nagging me.
“It’s really a question of worth,” Matt says. “Even though Eliot failed to measure up to a single worldly standard, we knew he was a unique child of God. And after we shared his story, the parents of these children approached us. They’d share their feelings of loneliness, how isolating it felt to raise a child who doesn’t measure up to the world’s standards of worth.”
He rocks back in his chair, adjusts his cap, and looks up at the ceiling.
“Engaging these children through 99 Balloons seemed like a simple way of recognizing their worth, of spending time with the people Jesus would have valued.”
Matt tells me how the work of 99 Balloons led them to the Ukrainian orphanage, and how they began praying for a young orphan who was about to age out of the facility. The difficult truth is that once that happens, the child’s prospects are pretty bleak. “So when we heard about Lena,” Matt says, “we began to ask everyone we knew to pray that she would find a home. And then . . . ”
“I began praying for her,” Ginny interrupts. “And once I started praying for her, it was over.” Ginny breaks into a wide grin and leans into Lena, tickling her armpits until the child’s laughter fills the room.
“If Lena isn’t 100 percent of what God wanted for us in the beginning, then I don’t know what is,” Matt says.
Ginny nods, lets the words sink in. “I’m not a deep thinker,” she says, “not one prone to dissect theology. But as I see it, it’s pretty simple. I love Jesus to the point where my heart feels like it could explode, and Jesus would have spent time with these kids. He would have taken Lena in.”
“I spent 20-some-odd years trying to get God to show up. But I didn’t really meet Him until He blessed me with the things the world considered to be broken.”
She pauses to reach for a roll of packing tape on the nearby coffee table and begins to repair the tattered spine on one of Hazel’s books. Then she continues, “People sometimes ask whether I think Eliot will still have one small ear in heaven,” she says. “I tell them I hope so. Some folks might call that broken. I think Jesus would call that ‘unique.’ These children, they’re worth no less to Jesus than the kid next door.”
The parents are building on each other’s comments now, and their passion for the rejected things of men is palpable.
“You know,” Matt says, “if people would set aside the world’s definition of value, I think they’d be begging us to join in with these kids. And do you want to know the real secret?” he asks, leaning in. “They’d probably be a whole lot happier.”
He smiles and continues, “I spent 20-some-odd years trying to get God to show up. But I didn’t really meet Him until He blessed me with the things the world considered to be broken. It’s true what He said, you know: ‘Blessed are they that mourn, for they shall be comforted.’”
“Yes, it’s true,” I say. “But maybe there’s a corollary truth, too.”
“Oh, really? What’s that?” he asks.
“Blessed are they who have been comforted, for they shall bring comfort to others.”
I stand and leave the Mooney house, thanking them for their time. As I walk back across the dry grass, I consider Lena—how she is settling into a quiet body under the mature Arkansas oaks, and how her siblings are being raised to understand the worth of a life. I think about how Matt and Ginny have walked through mourning and into comfort. They are understated saints, the ones who take what’s considered broken and find the beauty in it all.