For Caregivers
Tools & Tips
Jeanne Conder never goes to bed without turning on the baby monitor so she can hear the breath of her stepson, Jonathan, who sleeps in a nearby room. That vigilance still is not enough.
"You don't ever sleep the same," Jeanne said. "You never go into that deep relaxing sleep. You've been jarred awake by the most terrible thing there is. Then you start a journey you never imagined."
It began two years ago with every parent's nightmare, that middle-of-the-night phone call with the strange voice on the other line explaining that there's been an accident, it's your child, come to the hospital immediately. That was two years ago, before Jeanne and her husband, John, knew anything about traumatic brain injury and craniectomy and contractures and even simple stuff, like how buying white sheets and towels is the most practical thing because your 21-year-old is now incontinent and bleach works wonders.
Jeanne remembers it all, though. She remembers it so well that she now can't figure out how the heck she got through it, especially those first two months when no one knew if Jonathan would live, let alone speak or remember.That experience is partly why this past June she started a support group for moms of traumatically brain-injured children, which she has named MOM, for Mothers of Miracles. The miracle being simply that their children are alive.
This is not the way Jeanne envisioned spending her time. Nothing about her life is what she planned. She is 54. She's already raised two daughters.
She didn't even meet Jonathan until six years ago.
He grew up with his mother and stepfather in upstate New York. When he was 16, Jonathan said he learned in a "hurtful" way that his stepfather was not his biological father. His mother then handed Jonathan a letter from John, his biological father. A year later, Jonathan had moved in with John and Jeanne Conder. Jeanne quit her marketing job to be home for Jonathan, who had some learning disabilities. They got him help. He graduated from high school. Two months before his accident, he had moved into his own place and was working two jobs.
He was the passenger in a car leaving Mission Hospital in early June of 2002. The car was taking a left when a pickup truck driven by an underage drunk driver - who allegedly was celebrating the return of his suspended license for drunk driving - ran the red light and slammed into it. There was so much blood gushing from Jonathan's mouth that the first person on the scene, Jennifer Evans, told her mother she was sure Jonathan had died. But he survived. He lives once again with his parents. He attends Coastline Community College's Acquired Brain Injury program. He can use a walker. And a computer. And he thanks his stepmom. Thanks for lunch. Thanks for picking me up from school. Thanks for being there. Jeanne still is surprised by the words. The old Jonathan wasn't like this. This Jonathan can't thank her enough.
"Every day, when I pick him up from school, he asks how my day was," Jeanne said, smiling at him.
"Why wouldn't I?" he asks. "I think it's amazing that she sacrifices so much. They could've disowned me."
Not likely. They fought to keep him when his mother wanted him to go back to New York with her. They pushed for Mark Staffon to get the maximum jail time. He's currently serving six years. Now, she makes sure Jonathan gets the best treatment and the little things that make him happy. Like when he dressed as a pirate and went to a local haunted house for Halloween.
Jonathan's gratitude keeps Jeanne going. She honestly doesn't get those parents who resent their suddenly disabled child, who obsess over the loss of their former lives.
She looked at Jonathan shortly after his accident, lying in a coma with titanium screws in his head, and wondered how she was going to take care of him. She had no idea. But she couldn't not try. "Her first boy," her husband, John, mused. "Other people could've just stood back and looked at their lives and decided, `This isn't for me.' She didn't. That's why she's an angel."
Jonathan came home almost eight months after his accident. He lived in a hospital bed in the living room because they couldn't get him up and down the stairs. They had to take him to their church to give him a shower, as it had a handicapped stall. They moved into a one-story home that August where Jeanne is grateful for little things like tile floors.
"I feel like I've died and gone to heaven." Because, of course, it's easier to use a wheelchair and walker on the smooth floor than the carpeted one. Leisurely lunches with the girls are a thing of the past, as are quick weekend getaways to Northern California with her husband. Jonathan is their constant companion.
Friends - whom Jeanne now thinks of as "other" friends, meaning those who don't have children with traumatic brain injury - have gradually fallen away. Jeanne says it's because they'd like it to be over, for Jonathan to get better and for his parents' lives to stop revolving around him. These are small sacrifices.
"It's kind of a myth, that you're constantly yearning for what you don't have," Jeanne said. "We're grownups. Life is hard. Yes, your life changes. But you have to do good in this world. It could've been worse, which would be to deal with the senseless death of a boy in his prime. Is he different? Yeah. He'll ask things over and over and it'll drive you crazy. But how could you resent him? "It doesn't mean it's a bad life. It's just a different life. ... You just change what's important. We want him to be happy. He has enough to deal with."
Cindy Evans is the mother of Jennifer, the first person on the accident scene. Jeanne asked to meet Cindy when Jennifer spent time in the ICU visiting with the Conders in the days after the accident. A friendship grew. Cindy Evans, who has since moved to Santa Barbara, calls on the phone every day. She is Jonathan's closest friend and Jeanne's confidante.
"Does she get frustrated?" Evans says of Jeanne. "Yes. Does she cry? Yes. But does she also feel joy and love? Yes. She lets herself feel all that she's supposed to be feeling. And she does it with such dignity and grace, you want to be like her. I have not known anybody like Jeanne Conder in my whole life. She's really grounded. She knows who she is."
Jeanne would laugh at that, because she says she's still trying to figure out who she is. She is defined by her role as caregiver, but there's more to her. She loves reality shows, her favorite, fittingly, being "Survivor." She loves to laugh. In the hour or so before a photographer was due to arrive at her house, she said she was working on her "desperate-housewife sassy-at-home ensemble."
Her support group has become a creative outlet, where she uses her marketing background and skills to make brochures, business cards and the logo: a butterfly emerging from open hands.
She claims if you'd asked her 10 years ago if she could do what she's doing now, she'd have said no. But then Jonathan points out that this is the same woman who once, through Project Cuddle, took in a pregnant college student who'd been kicked out of her home by her parents and helped raise her baby for a year.
Jeanne, a grandmother, is now literally raising another child, one she met when he was almost an adult. She delights and amazes at everything Jonathan accomplishes, no matter how seemingly minor.
She'll tell you with an abundance of maternal pride about something funny he said or how he holds her hand and throws her kisses or how he can, with her gentle suggestion, go from his wheelchair to his walker and come into the dining area for his meals.
She, too, has learned to say thank you.
Now, she simply wants for Jonathan what every parent wants. For him to be independent, to drive again, to get married and have children. She refuses to set limits on what he can accomplish. Besides, it's all she can do to focus on the day-to-day. She and her husband have been together for 20 years. These were supposed to be the blissful post-children years. To John and Jeanne, they are blissful, though there is no guarantee Jonathan, now 23, will ever live on his own. "This is our time," John said. "We're enjoying it. Jonathan is an incredible person. These kind of events bring out the best in people, or the worst." In Jeanne's case, he adds, "It's bringing out the best."
Reprinted with permission. © 2004, The Orange County Register (Santa Ana, Calif.).