Fortunately, most of us never face the heartache of wondering if our child will live or die — or endure a lifetime of disability. Those parents who do offer us lessons in courage and strength. Their challenges should make us even more thankful that we’re blessed with a healthy child.
Recently, I saw an article in the Atlantic titled “Coping with Bad News.” It was about pediatric doctors at Johns Hopkins University who treat very sick children — “the ones with severe neurological problems that cause profound developmental delays, or with cancers slowly ravaging their bodies, or severe organ failures.”
They physicians said they struggle with how to counsel the families.
“When a child is dying … I need to be … calm and not running away, not engaging in my own emotional response in that situation,” said one.
The parents, of course, have an even greater task: receiving the bad news and coping with it.
“When a child is chronically ill, the whole family feels the pain, particularly the parents,” says an article in the New York Times titled “Love, Anger and Guilt: Coping With a Child’s Chronic Illness. “Mothers and fathers talk about the guilt, anger and sheer exhaustion. Brothers and sisters can feel neglected.”
Parents share their stories
The author interviewed five mothers of severely ill children. One mom, for instance, had a 15-year-old epileptic daughter who suffered as many as 80 seizures a day.
“It drains the family emotionally and financially,” the woman said. “You are at the hospital all day with one child and then you come home to two more children who need attention. You feel like a machine; you just keep going. I don’t think I slept well for five years. I just kept pushing.”
Another woman had an adult daughter who suffered trauma at birth and has never been able to talk or walk. She has the functional ability of a preschooler.
“I went through a stage when I was pretty mad at God,” the mom said. “I was literally suicidal for two to three years. … I never went back to work after Jessie was born. That was another stress in my marriage, going from two incomes to one. Plus, children like Jessie are really difficult to manage. She would have bouts of one to two hours of nonstop screaming.”
A third mother had an 8-year-old daughter with severe learning disabilities, obsessive compulsive disorder and attention deficit hyperactivity disorder.
“Very little is written about the mental devastation on the parents,” she said. “I went through a major depression when Rachel was diagnosed, and it forced me to look inward and re-examine myself. It forced me to re-examine my own abilities to handle stress and grief.”
All parents, even those with healthy children, face disappointment and despair in raising kids. I can’t imagine the far more profound challenges that parents of severely ill or dying kids face.
I commend them. Their struggles should make us all appreciate our blessings.