"I used to think Brad and I could get through anything," said Kim, 41, a former securities analyst who now stays home with her children, Kyle, 9, Luke, 7, and twins Mark and Mia, 5. "We were so close we'd finish each other's sentences. But our son Luke is severely handicapped, and the stress of caring for him is destroying us.
"We still don't know exactly what happened. I'd had a normal pregnancy, but during Luke's birth, something went horribly wrong. He was rushed to a high-risk infant ICU while doctors worked to stop me from hemorrhaging to death. At the end of the week, the doctors told us Luke was permanently brain damaged. He can't see, hear, think, or move; he's fed through a tube in his stomach. We read and sing to him, but I doubt he even knows we're there.
"We couldn't bear the idea of putting this poor defenseless baby in an institution, so we decided to care for him at home. We turned the downstairs den into a hospital room and learned how to clean his feeding tube, turn him every few hours, and suction his throat every 10 minutes. He gets seizures for no apparent reason, so we have to watch him 24 hours a day. After we battled the insurance companies, they agreed to cover 10 hours of home care daily; anything beyond that comes out of our pocket. One nurse comes from 9 a.m. to 5 p.m., and another from 11 p.m. until 7 a.m. The rest of the time, it's just us. Sometimes my mom comes over so I can go to a church fund-raising committee meeting or take the kids to activities. You need an air traffic controller to figure it all out!
"Given our situation, a lot of people thought we were nuts to have another child. But we always wanted a large family and needed more joy in the house. Before I got pregnant again, I made sure Brad understood how much help I'd need. He swore I could count on him. But once the twins were born — perfectly healthy, thank God — he forgot all about his promise. He started working even longer hours and stopped helping. I feel like I can't trust him to do anything right, even if it's just running an errand. As for Luke, if Brad says he'll watch him while I get the twins ready for bed, I don't want to come downstairs and find him passed out with a beer in his hand. When we tried it the other way — me watching Luke and him putting the kids to bed — it was utter chaos. Brad says the twins don't listen to him. Well, if he were more involved in their lives, they would."
"Brad and I met at a happy hour in New York City's financial district. I was working at a Wall Street bank and he was an associate at a law firm. I'd recently broken up with a long-term boyfriend and had no interest in dating, but Brad was smart and charming and clearly a rising star at his firm. After turning him down four times, I finally said yes. We'd been dating just a few weeks when I had a minor car accident that left me with a mild concussion. When Brad heard about it, he immediately took off work to be with me. That's when I truly fell in love with him. Within a year we were married. Six months later, we bought a house in the suburbs, and a year after that, Kyle was born.
"These days Kyle is my rock, even though he's only 9. When his dad is passed out on the couch he'll help with the twins without being asked, and he can make me laugh when I'm really down. But he can turn on a dime, going from sweet and loving to surly and obnoxious. His grades have slipped this year and his hockey coach has had to bench him several times for mouthing off to the referee. Plus, he and Brad butt heads all the time. It's not hard to see why — Brad's idea of a friendly game of catch is to criticize the way Kyle holds the football. My husband was a star athlete and Kyle isn't. Who cares?
"I'm also worried about the twins. When they write stories in kindergarten, the characters often get sick or die. We explain that we love Luke and that he's as happy as he can be, and that nothing will happen to them. But Brad and I need to do more to reassure them, and that's hard when we're not speaking.
"In the terrible year after Luke was born, when I spent most days in tears, Brad was wonderful, the one person who could comfort me. Now we're at each other's throats 24/7. I barely recognize the person I've become, screaming and cursing at my husband, often in front of the children. Something has to change, but nothing ever does. Oh, except for one minor detail: Brad just announced that he's lost interest in his job and is taking a leave of absence! Could there be a worse moment for such a major decision? The decision we should be making is whether to transfer Luke to a care facility. Sadly, we're past the point of having a civilized conversation about that or anything else."
"My memory of Luke's birth is blurred," said Brad, 41. "When a doctor tells you that, basically, your child will be a vegetable for the rest of his life, the words don't really sink in. I was on autopilot, dashing frantically between hospitals to check on my wife and son. I kept asking myself questions no one should have to ask — like, how could God let this happen? I had this crazy idea that if I prayed hard enough Luke's condition would improve. That didn't happen and never will. Now I'm afraid our decision to keep him at home may cost us our marriage.
"Initially, Kim and I shared Luke's care equally. But now everything I do is wrong. If I clean Luke's feeding tube or change his linens, she hovers over my shoulder to make sure I don't screw up. If I go grocery shopping, I'll invariably forget something or buy the wrong brand of detergent. There's no pleasing her, and the tension in our house is unbearable. Kim is sarcastic and coarse in front of the children. When did she learn to talk like a longshoreman?
"Believe me, that's not the woman I fell in love with. Kim was beautiful, smart, and full of energy. I'd dated enough women to know I wasn't going to let this one get away, so I pursued her until she agreed to go out with me. We clicked immediately; we used to have these marathon talks where we told each other everything. I could open up to her in a way I'd never been able to with anyone else.
"I realize Kim's just as angry as I am, but she won't admit it, even to herself. Yes, she has more to do than seems humanly possible, but she doesn't need to volunteer at every church event. She should use the time to take an art class or get a massage. When I point this out, she blows up, and we're smack in the middle of another battle.
"And it makes me livid when she says stuff like 'Dad's passed out in the den.' I've fallen asleep — I have not 'passed out'! So what if I drink a few beers? It takes the edge off if I'm watching Luke for five hours. She's turned the kids against me. Kyle doesn't even want to toss around a football with me anymore, which breaks my heart, and all three take Kim's side in every argument. Now, on top of everything else, I've lost interest in my profession. That's why I'm taking a leave of absence from my law firm, after killing myself to make partner three years ago.
"I know the divorce rate is sky-high among couples with handicapped children. I'm determined not to let that happen — our kids have had enough tragedy. Maybe the time has come to make the choice we've all been avoiding: to place Luke in a home. That's the elephant in the room."
The Counselor's Turn
"Few couples, even in the strongest marriages, are prepared to deal with the practical and psychological fallout of having a disabled child," the counselor said. "Overwhelmed and depleted by the relentless expense and responsibility of caring for their son, Kim and Brad couldn't work together to resolve even routine issues. They were unable to take any pleasure in their lives, let alone rekindle the spark that had brought them together in the first place.
"Initially after Luke's birth, Kim and Brad had turned to each other for solace and support, but by the time they came to me, their closeness had been shredded by bitter arguments and simmering resentment. During our sessions, we talked at length about the psychological toll of having a child with multiple disabilities. That process helped Kim realize that giving birth to Luke had made her feel damaged — 'like there's something wrong with me,' she said. To make herself whole again, she piled on challenges, running herself ragged to prove she was capable and dull her pain. Even her choice to have more children was, I believed, a way to validate her mothering abilities. Understanding all this helped Kim see that she needed to cut back on her commitments.
"Brad also felt like a failure. For the first time, this hard-charging, can-do guy faced a problem he could not fix. He coped by pulling inward, working harder, fading out of the family, and eventually numbing himself through drink. Although he insisted he didn't have a problem, the fact that he was unable to make it through an evening without several beers put him on the road to alcoholism. 'Nothing will change until you stop drinking,' I told him. I suggested he attend an AA meeting, but Brad summoned his considerable willpower and simply quit cold turkey. He hasn't touched alcohol in nine months.
"Kim and Brad were both angry but expressed it differently. Kim yelled, cursed, and tried to humiliate her husband. Brad's passive-aggressive style — promising to do something, then not delivering — was equally hurtful. 'Occasional disagreements in front of the kids are okay,' I said, 'but habitual fighting is not. You must become aware of how your behavior triggers your partner's anger — and change that behavior.' In time, Kim learned to count to 10 and ask, 'Will this matter tomorrow?' If the answer is no, she keeps quiet. (The extra time allows her to calm down.) As she became less sarcastic and argumentative, Brad became more willing to per form household chores without being asked."
"Next, I urged the couple to be more selfish. 'You need to take care of yourselves and your relationship,' I said. 'Otherwise, you'll be of no help to your children.' Fortunately, they had a strong network of friends and family who were willing — indeed wanted — to help. Calling on these people gave Brad and Kim time to sleep, exercise, read, or just take a stroll around the block together. Kim now squeezes in a beginner yoga class three times a week, and the couple has dinner out twice a month to give them a romantic break from their routine.
"Because they were so preoccupied with Luke, Kim and Brad failed to set reasonable limits for their other children. They especially needed to change the way they parented Kyle. The boy had been drafted into being his mother's rescuer (a huge, confusing job for someone his age) while worrying that he wasn't meeting his father's athletic expectations. Kim had to stop relying on and confiding in her oldest son — much easier now that her husband was more emotionally available — and Brad had to show his son that he loved him unconditionally. Brad now spends regular one-on-one time with Kyle, acknowledging his accomplishments as well as the compassion he shows his siblings. Working together, the whole family came up with a checklist of chores, bedtimes, and rules for TV, computers, and video games. By being careful to support the other parent, Brad and Kim have managed to lovingly enforce this new system, which in turn has created much greater stability in the children's daily lives.
"Finally, the couple felt solid enough to tackle the topic of Luke's future. They visited three facilities and were impressed with one that was a 30-minute drive from their home. After considerable anguish, they decided to move Luke there. 'We need to do this,' admitted Kim. 'Luke had become the most important person in the family, and that's unfair to the other kids.' The couple visit Luke twice a week and bring him home for Thanksgiving and Christmas.
"Wrenching as the decision was, Kim and Brad agreed that it made a dramatic, immediate improvement in their home life. Brad also made an important career change: He joined a three-person law firm in the next town, working on projects he enjoys. 'Our life will never be easy,' Brad said, 'but now Kim and I are on the same page, and that makes it a lot less hard.'"
Originally published in Ladies' Home Journal, November 2008.