Chronic Sorrow, Heartache Afflict Parents of the Mentally Disabled : Psychology: The sadness can hit any time and continue after a child dies. Some find ways to lessen the hurt, but most accept it as a fact of life.

Martin Levinson’s dreams were replaced with sadness when he learned his son Josh had a form of mental retardation called Williams syndrome.

Levinson, a pediatrician in Huntington Woods, calls his state recurrent acute grief. Family counselors call it chronic sorrow--the lasting ache that pierces the hearts of parents rearing impaired children whom they dearly love.

“It’s the grieving of a loss--not the loss of a person, but the loss of expectations. . . . There’s just a level of sadness that never goes away completely,” Levinson said.

Parents of impaired children still laugh, love their children and enjoy good times. But grief creeps over them unannounced.

“This response of chronic sorrow surfaces throughout the child’s lifetime,” said Kathleen Delp, a genetics counselor at Michigan State University.

Delp plans to survey 1,100 parents of impaired children to find out more about how the grief affects them. A survey of a small sample suggested the sorrow continues even after the child dies.

“They grieve the child because their whole life was oftentimes wrapped around that child, but they are still grieving on the other level,” Delp said. “They are still grieving the child that was never born.”

Levinson felt the stab of chronic sorrow when he watched his second son, Simon, toddle over to the stairs and quickly grasp how to hang on to the railing and step up onto the landing. It took Josh months to learn that.

“I cried, and I cried for a number of reasons. I think I felt some guilt, that I was frustrated with how long it took Josh to get to that point, and I cried with happiness that Josh had persevered and accomplished it,” Levinson said.

Josh, now 12, learned to walk at 2 and had trouble learning how to eat. He still has poor coordination, and reads at a second- or third-grade level.

“When he talks about what he wants to do with his life, I try my best not to show it, but it makes me sad, because you know whatever they (other children) say they want to do, they have a shot at it, and I know that he doesn’t have a shot at it,” Levinson said.

Well-intentioned family and outsiders can intensify parents’ grief unknowingly.

Michael and Freda Branch of Vicksburg were snubbed by a hospital program that gave gifts to mothers of healthy children as a reward for good prenatal care.

Their daughter Bethany was born with an extra ninth chromosome and didn’t qualify as healthy, even though her condition was not caused by poor prenatal care.

“Any time I saw somebody with a normal kid, it really hurt. A lot of times I said, I think this is so unfair. Why have I been afflicted with a child with a disability?” Mrs. Branch said.

Bethany is severely retarded and grows slowly. At 12, she is the size of a child half her age.

“I was going to have her taking music lessons and reading early. It’s like the child I had expected had died and we were dealing with this other one in her place,” Branch said.

Her sorrow lessened with the birth of a second daughter without trisomy 9-P. And she takes pleasure in Bethany’s other traits, such as her kindness.

Any milestone in a child’s life can spark episodes of sorrow. Watching others’ children go to kindergarten, get driver’s licenses or prepare for college can wound the parents of a developmentally disabled child, Delp said.

Sadness sneaked over a west Michigan woman as she watched a 16-year-old family friend talking about dating and driving. “It’s just not going to happen for Brian,” she said of her own 16-year-old.

Patricia, who asked that her real name not be used, has three children with fragile X syndrome, a form of mental retardation. The two boys, 16 and 13, are mentally retarded and have some of the characteristics of autism.

Her daughter, 8, has normal intelligence and is only subtly affected, although she could pass the faulty X chromosome to her children.

“You just can’t understand the rage I feel at times and wanting to have the same dreams for my children that you have for yours, and that’s just not going to be possible,” she said.

The family’s move from a small town to a larger city so the boys could obtain special education services ushered in a year of intense mourning, with periods of depression so deep that counselors feared she might need to be hospitalized.

“All of a sudden, I had children in Special Olympics and was seeing the reality of what this meant. . . . We were just no longer able to pretend anymore,” she said.

Raising the three strained her physical and psychological resources. For example, one son had a terror of getting his head wet and threw ferocious temper tantrums that turned the nightly bath ritual into a 90-minute battle.

Advice about taking things one day at a time was useless. “That was even too much for me. It was just, ‘If I can make it through this next hour,’ ” she said.

Patricia wrestled with guilt, blaming herself for her children’s impairments because the broken chromosome came from her. She told her husband he could marry someone else if he wanted normal children, but their marriage stays strong.

When Paul, 13, demolished two closet doors with a baseball bat, Patricia blamed herself. “I must not be doing something right or this child wouldn’t be acting this way,” she told herself.

The sorrow waxes and wanes, but Patricia has learned ways to beat it back. She forced herself to develop outside interests like craft projects to give herself a break from her children. Christian faith, exercise and sometimes just allowing herself to feel blue for a time help.

And Patricia now dreams cautiously about her children’s futures, hoping Brian continues to do well in his fast-food job and will someday be able to move into a group home.

While day-to-day struggles can be trying, thoughts of the future are even more daunting. “The real painful part for me now is indeed that--what’s going to happen? One day we’re not going to be here,” Levinson said.

He once convinced himself his sorrow was behind him, only to learn the heartache can rush back unexpectedly.

“This recurrent grief is really a way of life forever. I cannot imagine how this will ever end,” he said. “Clearly, I can function on a day-to-day level, but you never know when the pain is going to just choke you,” he said.