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"Our Son Is Disabled and It's Tearing Us Apart"

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Her Turn

“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 be — it was utter chaos. Brad says the twins don’t listen to him. Well, if he were more involved in their lives, they would.”

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