@story MARCUS COKER
@image MATT AND GINNY MOONEY
It’s a Tuesday in Fayetteville, and Matt Mooney, thirty-four, sets down his Starbucks cup and leans forward as he begins telling his story. His wife, Ginny, thirty-two, is at home packing for their trip to Ukraine. They’re leaving Saturday and won’t be back for over a month. When they return, they’ll have another child, a five-year-old girl who can’t speak and can’t walk. Her name is Lena.
Lena has lived most of her life in an orphanage, in a facility for special needs children. “She’s not the first in line to be adopted,” says Matt. “We know it won’t be easy, but we’re ecstatic. We’ll take her for who she is because we believe absolutely in these kids. We see things differently. We can’t help but see things differently.”
At one time, the thought of adopting a special needs child would not have occurred to Matt and Ginny. Just six years ago, they’d moved to Fayetteville, Matt was in law school, and Ginny owned a jewelry business. And Ginny was pregnant. But Eliot, their first child, changed everything. And as Matt says, “Nothing mattered before Eliot.”
Ginny was thirty weeks pregnant when they found out. There’d been a test, and the doctor called to confirm the results. Their child had Trisomy 18, also known as Edwards Syndrome. Trisomy 18 is caused by a chromosomal defect. Upon conception, a child receives twenty-three chromosomes from each parent. The chromosomes form pairs, giving the child a total of forty-six chromosomes in each cell. Trisomy 18 children, however, have an extra eighteenth chromosome. The syndrome occurs in one in every three thousand live births and is the second most common form of trisomy, second only to Trisomy 21, known as Down syndrome.
“We knew what that meant,” says Matt. Trisomy 18 is usually fatal, and most of the babies die before birth. Of those that are born, the majority live only a few days. “Friends don’t know whether to throw you a shower or not. It was this weird dynamic of preparing for our first child and also being told to prepare for his death. Our prayer was that he would live long enough for us to get to know him.”
Eliot Hartman Mooney was born on July 20, 2006, at 4:59 p.m. He weighed six pounds, had an underdeveloped lung, and a hole in his heart. He required an oxygen tube and spent his first thirteen days in a neonatal intensive care unit. After that, he went home with Matt and Ginny. “He was sick,” says Matt, “but his life for the most part was very normal.”
Matt dropped out of law school for a semester, and he and Ginny worked in shifts to take care of their son. Eliot required feeding through a tube every three hours, and each feeding took an hour and a half. Meanwhile, friends and family showed up with food for Matt and Ginny. And every single day, Eliot had a birthday party at 4:59 p.m.
Eliot lived for ninety-nine days, and passed away on October 27, 2006. At his memorial service, Matt, Ginny and their loved ones released ninety-nine balloons in celebration of his life. Matt says, “By all accounts, Eliot’s life would have been a nightmare scenario. But having lived through his life, I can say that it was wonderful and it was beautiful.”
Both during and after Eliot’s life, Matt and Ginny kept a blog, which has since been archived at ninetynineballoons.com. “We wanted people to know what was happening without having to pick up the phone forty times a day. The blog led to making a video. We’d taken thousands of pictures and hours and hours of video. We didn’t say it at the time, but we knew, well, this is precious. It might be all we have.”
Matt and Ginny worked with a friend to produce a six-minute video that tells the story of their son. They posted it online, and the response was overwhelming. Matt and Ginny began to hear from many people they’d never met. “I think people are drawn to Eliot. They connect with him in a way that we can’t sit across the table and talk about. Maybe they’ve lost a father, or have a special needs kid. Maybe they just connect with staying up to care for someone, or simply understand grief.” Eliot’s video was so compelling that Matt and Ginny were invited to share their story on both The Oprah Winfrey Show and The Today Show.
When Matt’s asked why so many have responded to Eliot’s story, he pauses and smiles. Then he says, “Well, first of all, I think he was beautiful. He taught us the absolute worth and beauty of every person. I think God wanted to tell a story of Himself, and He chose to do it through our son. All that Eliot’s life was is more clearly what all of our lives are. None of us are guaranteed another day. We knew that with Eliot, but it’s true with all of us.”
In the last five years, a lot has happened for Matt and Ginny. Matt graduated from law school, and the couple had two more children, both of whom are healthy. And as a way of helping special needs kids and their families, Matt and Ginny started a new project. “We started 99 Balloons out of our desperation, the void. We didn’t need anything to remember Eliot, but we felt like we had learned all this stuff and we wanted to do something to live out the things we had learned.”
At first, 99 Balloons was simply a blanket organization for a program called rEcess. (The capital E is in honor of Eliot.) rEcess takes place once a month and is a night when families with special needs children can receive respite. The program usually takes place at a church, and families are invited to drop off their special needs children and their siblings for a few hours. The kids can rest, play games, and make crafts. rEcess not only gives families a night off, but it also provides a starting point for special needs families to build a community of support.
“We have great volunteers, and I love pairing them with kids. A lot of times high school and college students are kind of about themselves or what they’re wearing, and this is a perspective-changing deal, guaranteed. Because these kids don’t get to care about what other people think of them. Their vulnerability is out in front of them, and everybody knows it. They live with that reality, and that’s pretty beautiful, but most of us hide our vulnerability at all costs.”
rEcess has been so successful, that Matt and Ginny have started helping other churches and groups start their own respite nights. Currently, there are three in Northwest Arkansas. Matt now works for 99 Balloons fulltime, and is increasingly focused on serving special needs kids both locally and globally. “We’ve become aware of the plight of special needs kids internationally, and it has become a driving force of all we do, to make others aware of special needs kids in other countries. Unfortunately, they are often neglected, pushed aside, or thought of as cursed.”
99 Balloons has established relationships with special needs groups in Haiti, Guatemala, China, and Ukraine, which is how Matt and Ginny learned about Lena. For the last year, they’ve worked to adopt her, and the process is almost complete. For Matt, the challenges of adopting a special needs child are worth all the effort. “Our decision-making process looked like this: Is Lena supposed to be our daughter? Our answer was yes. You can worry about how you’re going to pay the doctor bills, but what we learned with Eliot is when it’s your child, you figure all that out.”
As Matt finishes his cup of coffee, he talks about how he and his wife have been changed. “I think we’ve learned to see beauty in the last places that people would look for it.” And then he says something we could all be reminded of every single day. “I’ve learned you don’t have to live up to some false standard to be loved, because love has no requirements.”
For more information, including a video about Eliot, visit 99balloons.org.