Children live, in memories

Healing: Families return to Children's Center, where their kids spent their last hours.

May 19, 2000|By Diana K. Sugg | Diana K. Sugg,SUN STAFF

The first name was Leah Susan Ek Asplin, a high school junior who cajoled her father into going to an Orioles game after her first radiation treatment. Then came Harry Greenberg, a sweet baby who died of a cardiac condition, and Jeremy Scott Jones, a friendly 10-year-old who loved to play in his sandbox with his Tonka dump trucks.

One by one, their voices trembling, parents spoke the names of the children they had lost to accidents, cancer and other illnesses. Some could manage only a whisper; others simply wept.

They had come back to the site of their greatest sorrow, the Johns Hopkins Children's Center, for an annual tribute service Wednesday night. They wanted to remember their children, and to be with the people who knew them in the last hours of their lives.

"I just need to go back," said Jeanne Jones, a Pasadena woman who has attended every service since her son Jeremy died 14 years ago. "It hurts, but it feels good to be reconnected again."

These parents saved handprints, every get-well card, and sometimes, the sheets their child died in, unwashed and wrapped in plastic, like a treasure. They ache to touch their son or daughter again, to smell them. They try to recall a voice, a laugh. But they're desperately afraid of forgetting, and fear others already have.

Mothers worry that even their children's names are fading. So, the tribute's organizers created the ritual in which family members speak their child's name.

"You get very sad and lonely at not hearing your child's name anymore," said Patty Greenberg. After her 5-month-old son Harry died, the Pikesville woman wrote a letter to the Hopkins Children's Center in 1985 proposing they put together a remembrance.

The center has held one every year since, and it has become a powerful, healing tradition for families and staff. Nearly 270 people attended this year.

"Children fear being forgotten," Carol Billett,a pediatric nurse practitioner, told the audience. "We wanted you to know that we don't forget."

About 100 children a year die at the Children's Center, a fraction of the number who are treated there. Some parents come every year, driving in from all over the state. Many cannot bear to return, but send photos.

In the pictures displayed on easels, babies are bundled in pink afghans, boys are holding their birthday cakes, a girl is smiling on her piano bench. There are children hooked to medical equipment, or terribly thin, and still smiling. Looking at the photos and later hearing the roll call of names, families comforted themselves with the knowledge that they weren't alone.

"They're living with just such an emptiness that you can't possibly imagine, and they still have to work, take care of themselves, their other children," said Susan Scarvalone, the social worker in charge of the Hopkins service. "They have to find solutions, and it's not easy in a world where the death of a child is something you still don't talk about."

All those gathered this week had come to know intimately 8-East, the Hopkins pediatric oncology ward, or the seventh floor's Pediatric Intensive Care Unit (PICU). They had slept on pullout chairs, eaten hospital food and exchanged practical jokes with nurses. They endured their son's twice-weekly spinal taps. Jeanne Jones was there so much that when she went into labor early, nurses just shipped her to another floor to give birth to her baby girl. Oncology nurses celebrated with her.

"It was almost like getting a second family," said Jones, 46, who is still good friends with one of the nurses. "We were probably in there as much as we were home."

In the PICU, parents watched other children die, and sometimes knew that their son or daughter would be next. But many recalled convincing themselves that it wouldn't go that far. When the Make-a-Wish Foundation approached the Rev. David Asplinabout his teen-age daughter Leah, who had a brain tumor, he responded, "But that's for kids who are dying."

Asplin, 53, a Lutheran pastor in Sparks who spoke at the service with his daughter Elizabeth and son Peter, said this mind-set got him through, for a while. "It helped me be there, do my job, be a father," he said. "If I hadn't had the gift of denial, I'm not sure how I would have made it."

Like Asplin, parents remembered the most intense moments of their lives. Many families and longtime nurses reported that the children had spiritual experiences in their last weeks, talking to an angel at the end of their beds, or after a week in a coma, sitting up and singing a hymn.

Patty Greenberg and her husband watched their son's heart rate drop to nothing on the monitor. Diane Irwin heard her 4-year-old daughter Casey suddenly cry out "Mommy!" and moments later, die.

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