Joy and the struggle that comes from adopting severely ill children

Karen Owens with her adopted son, Jayden, who has injuries from shaken-baby syndrome. The Owenses also adopted a girl with cerebral palsy after their son died.
Karen Owens with her adopted son, Jayden, who has injuries from shaken-baby syndrome. The Owenses also adopted a girl with cerebral palsy after their son died. (DAVID SWANSON / Staff Photographer)
Posted: November 23, 2012

BOYERTOWN, Pa. - Karen and Adam Owens know about loss.

They also know about love.

On Thanksgiving, they're grateful for the time they had with their son, Gavin, who died at age 3 in November 2009 of a rare chronic illness. He left them more than the memory of his brilliant blue eyes.

The skills that Karen and Adam learned while caring for Gavin convinced them that they could not only handle but embrace the challenges of parenting children who have profound medical conditions. Today, they and their 7-year-old daughter, Madison, will share a first Thanksgiving with new daughter Angela, 4, and new son, Jayden, 3, both adopted from the Philadelphia foster-care system.

"If not us, who?" said Karen, as Angela wiggled in her arms in the family room of their home. "We're very -"

"Crazy," Madison finished, planting a kiss on the top of Angela's head.

Crazy in the way that led Adam to run and bike a duathlon with Angela, who cannot walk, pushing her in a stroller and pulling her in a trailer. Crazy to start Chronically Cool Families, a support group for parents raising ill children, which meets monthly at the Alfred I. duPont Hospital for Children. Crazy to insist that children with severe disabilities can lead rich lives, and that their parents can find joy.

Karen, 32, is a creative-arts specialist at the Glad Tidings Church in Reading, and Adam, 32, works for Aetna Health Insurance. They had always thought about adoption, even when Gavin was alive.

He was sick from the time he was born in 2006, eventually diagnosed with mitochondrial disease, a fatal illness in which cells generate less and less energy, causing the body to fail.

Karen and Adam were beside Gavin always. At the end, Karen had her hand on his chest. She felt his heart stop.

In life Gavin was a laughing and lovely boy. And in loving him, parenting him, caring for him, Adam, Karen, and Madison were molded into people who were comfortable and capable around sick children.

Angela has cerebral palsy, Jayden a traumatic brain injury from shaken-baby syndrome. He's deaf and breathes through a tube in his throat.

Neither can talk. Both have severely limited vision. But both are so much more than their illnesses: Smart, active, and interested in the world.

Angela carries out full conversations on an iPad. Jayden is learning to communicate by finger spelling, the letter-by-letter form of sign language familiar to anyone who ever saw The Miracle Worker.

"People look at Angela and Jayden and think they're not there mentally," Adam said. "They're there."

Every year in Philadelphia, about 3,000 children enter the out-of-home and foster-care system. Nationally, 400,000 are in foster care, and for three-quarters the goal is family reunification. For 104,000, the aim is adoption, said Gloria Hochman, spokeswoman for the National Adoption Center in Philadelphia.

Generally those children are 5 or older, some of them 16 or 17 and still hoping for a permanent family. Many have physical or emotional problems that complicate efforts toward adoption.

"For many of them, we are pretty much the last stop," Hochman said. "If we don't find families, they won't have them."

The Adoption Center operates in Southeast Pennsylvania, South Jersey, and Delaware, working to raise awareness of foster-care children. Word is spread on Twitter and Facebook, through columns in The Inquirer and the Philadelphia Tribune, and at events where children meet families who are considering adoption.

Of course, people don't adopt out of sympathy. They adopt because they want to be parents. And because they believe they have something to offer - particularly so in cases where a child has serious health issues.

"These are parents who are choosing it," Hochman said. "They have thought about it, and they have searched themselves, and they have decided to do it. . . . They know there is value in their children, and value in parenting."

The center identifies the children to be profiled on the weekly NBC-10 program Wednesday's Child. In 2011, Jayden happened to be featured on the show, and the Owenses happened to see him. At the time, they were in the process of adopting Angela, but they also became interested in Jayden, who arrived home in February.

The children's future?

"Unlimited," Karen said. "They both have so much potential."

People said Angela would never go to school. Now she attends preschool three days a week. In just a few months, Jayden has become stronger and more focused.

He and Angela thrive from interaction - and their parents see that they get it, on weekends visiting friends' homes, strolling in the park, and taking trips to places like Philadelphia. On Thanksgiving they will visit the homes of family members in Montgomery County.

"I've seen what can happen with love and attention," Karen said. "I wish more people would adopt. All it takes is one person to say yes."


For more information on adopting a child, visit the National Adoption Center website at www.adopt.org.

Contact Jeff Gammage at 215-854-2415, jgammage@phillynews.com, or on Twitter @Jeff Gammage.

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