Nurse Embraces Gift of Giving : A Teen-Age Boy in a Wheelchair Called Out and She Was Hooked

On her first day as a nurse at Hylond Home for the severely retarded and handicapped, Kathy Jarosek was jolted to tears by the sight of the children--victims of accidents, birth defects, disease and battering. Emotionally traumatized, she planned to resign.

But the thought of leaving vanished the next day when Danny, a teen-age boy bound to a wheelchair by cerebral palsy, stole the nurse’s heart. He spotted her and joyfully shouted, “Jarosek baby is here!”

Now, nearly 23 years later, Jarosek is still here. She has tried to quit five times, usually to devote more time to her own three children. But it is no use--she always comes back to the children and adults she also considers her family.

“I couldn’t cut the strings,” Jarosek said. “One time I had a going-away party on Friday and returned to work on Sunday.”

Hylond, a single-story building tucked into a residential neighborhood, cares for those who are severely retarded and physically impaired from childhood. All 147 beds at the home are full, with residents ranging in age from 2 to 66.

It is the place that many of them will call “home” for the rest of their lives. In a way, it also seems like Jarosek’s place for life.

The much-respected Jarosek is part of a dedicated breed of care-givers, here and at other such facilities, that always manages to find hope.

“Everybody thinks it is a sad place. But there is nothing sad about it,” said Jarosek, who over the years has come to see the residents differently than a stranger would--through the eyes of a doting mother. She takes joy in her children’s first steps, even if they come at age 12.

“We have a 3-year-old who just smiled for the first time,” Jarosek said pridefully as she sat in her office, which is decorated more like a parlor with white wicker chairs, flowered wallpaper and Norman Rockwell prints.

Her office door is open for a curious child who may rove by on a tricycle, wheelchair or walker, and for staff nurses who often bring fussy or sick tots for Jarosek to cuddle between administrative duties. As director of nursing, Jarosek commands a staff of about 100 nurses and nurse’s aides.

Framed in her office hangs a “letter from Santa Claus to children” that epitomizes her philosophy and the attitude she expects from her staff. It reads in part: “I am the spirit of giving and it is not important that those receiving know where the gift comes from.”

Jarosek’s sense of fun is reflected in her ready smile and the Mickey Mouse watch--a gift from her husband, Gordon--that she wears at age 57. She eagerly points out her painted contribution to a hall mural of lively cartoon characters in the children’s wing: a duck on roller skates pushing a wheelchair.

But Jarosek has a tougher side. She demands harmony among her staff.

“That’s why she has three extra chairs in her office,” quipped Vivian Limas, a special education teacher, explaining how Jarosek will summon warring parties to settle their differences.

“I can’t stand dissension,” Jarosek acknowledges.

And she shows the residents enough regard to demand their cooperation. Even the developmentally disabled, she said, are able to learn that temperamental outbursts can’t be tolerated.

Jarosek, however, understands that tantrums may stem from a disabled person’s frustration with an inability to clearly communicate. So she tries patiently to determine what sometimes speechless children and adults want or need. She engages them in “20 questions” to interpret from a nod of the head or eye movement what they would say if they could.

She plays that game often with Laura, a vivacious 33-year-old woman who has lived at Hylond since she was 10 and has adopted Jarosek as her confidante.

At 7 a.m. every day, an hour after Jarosek arrives at work, Laura, who has cerebral palsy, wheels into the nurse’s office. If Laura’s head is hanging, Jarosek knows something is wrong and begins to guess why, waiting for a sign that she is close.

Jarosek’s efforts are well-rewarded. “She (Laura) tells me seven times a day she loves me and this is how she says it,” said Jarosek, thumping her chest near her heart.

Another of Jarosek’s “favorites,” she said, is a 14-year-old boy who had meningitis as an infant and smiles and coos when he hears her voice.

Hylond veterans like to remember the success stories: the children who came to the center in a coma-like state after a fall from a tree or cardiac arrest during a tonsillectomy but gradually revived through therapy and finally “ran out the door.”

But many more residents never improve. Some get worse. On a recent afternoon, Jarosek joined parents and friends welcoming residents who were returning in buses from a day at school or work specially tailored to their handicaps.

She left this happy scene briefly to visit another patient who had surprisingly survived into her 40s with severe hydrocephalus, a condition characterized by an abnormal increase of fluid in the cranium.

The liquid in her head, the size of a large beach ball, was causing her mental powers to deteriorate. As Jarosek stood by the woman’s bedside and took her hand, the woman asked, “Who are you?” Jarosek’s face fell. “Come on, you know me,” the nurse encouraged tenderly.

Jarosek also uses her compassion and ability to listen with the parents who frequently feel a mixture of guilt and trepidation in giving up care of their offspring to a facility.

“Dealing with people is her thing. When I first brought my daughter here, she let me cry on her shoulder,” said Lois Johansson, 76, who is battling cancer and wanted her severely disabled child, Susie, now 51, in someone’s care before she dies. So she brought her daughter to Hylond about two months ago.

Michael Cutchshaw, the administrator of Hylond and Jarosek’s boss, said she never gets rattled, despite everyone’s demands on her time. “You would never know it is a high-pressure job because she is always calm and relaxed and has a calming influence.”

Working with the severely retarded is not for everyone. It can be difficult recruiting nurses, Cutchshaw said, some of whom on their first day of work never return from their lunch break.

“People either love it or hate it,” said Jarosek, who is quick to praise the contributions of other longtime staff members at Hylond. One, Bonnie Fossum, the facility’s activities director, grew so attached to Jennie, a parentless child with hydrocephalus, that when the girl turned 18, Fossum became her conservator, taking her home on weekends and holidays.

Jarosek said she still has difficulty understanding the meaning of the suffering she encounters.

But, she said, “I have become more accepting. There is always a reason for everything, even if we don’t understand. I have learned from my clients patience and understanding and respect for all human life.”