Grieving parents turn pain of losing child into activism

(MCT) HACKENSACK, N.J. — Forty years ago, Rosemarie D'Alessandro's 7-year-old daughter, Joan, was raped and murdered by a neighbor while delivering two boxes of Girl Scout cookies to his home — three doors down and across the street.

But it was a phone call 20 years later — when she learned the man responsible for Joan's death was up for parole — that thrust the quiet Hillsdale, N.J., homemaker into the role of forceful victims' advocate and helped her to make some sense of the unfathomable.

Today, D'Alessandro's story is well-known. She has worked tirelessly for the past 20 years to pass a cadre of state and federal versions of Joan's Law — which carries a mandatory life sentence for anyone convicted of sexually assaulting and killing a minor younger than 14. But she's not alone.

Earlier this month, the families of victims in Newtown, Conn., marked the one-year anniversary of the massacre of 20 schoolchildren and six adults with quiet, private memorials. Elsewhere in the nation, there are people who have experienced the unimaginable — losing a child unexpectedly from violence, suicide or accident. A few of them have come out of it like D'Alessandro with a new purpose in life, hoping to reverse what seems to be a profound injustice.

"It's really hard because after you lose a child, you feel like your world has crumbled," said Joyce Davis of Warren Township, N.J., whose 4½-month-old son, Garret, accidentally suffocated between a mattress and the mesh siding of his crib. "You're not ready to face the world. You're not ready to fight for anything but your child or your family."

Davis said she was so "angry" after Garret's death in 2000 that it was five years before she decided to take action. Her deep depression was taking its toll on her family, so much that one of her daughters didn't want to go to school one day because she knew Davis would be home crying.

It was then that she pulled herself together to make sure what happened to her baby would not happen again, and to show her three daughters that she could heal, too, even after years of grieving.

Davis' husband already had been researching crib safety issues relentlessly as the products they purchased had no warning about accidents readily available. The couple then took the reins of Keeping Babies Safe, a foundation established after a similar situation, to make information about consumer products easily available and to donate cribs to families in need. The couple also lobbied to pass a national crib safety law, which was signed by former President George W. Bush in 2008.

Deborah Carr, a sociologist at Rutgers University whose research focuses on bereavement, aging and end-of-life issues, said in all deaths of loved ones, people often go through a period of depression then tend to bounce back. But when the deaths are premature or traumatic, the response can be more extreme — and some say such experiences can never be overcome completely, she said.

"Often, your worldview changes, and everything you believe shifts," Carr said.

Peggy Frazier O'Connor, a film producer in Texas, is working on a TV series called "In Search of Steel Magnolias," which tracks the lives of women who overcome tragedy to help society. As Joan's baby sitter, she also has partnered with D'Alessandro to create a short film to teach lawmakers about Joan's Law in hopes of expanding it across the country.

O'Connor said families or individuals who go through such trauma can crumble. But the women she is featuring — including D'Alessandro — have not only recovered but made great accomplishments, often with no experience or funding behind them.

"Women are doing amazing things with little to no assets, or turning tragedies into triumph," O'Connor said.

For the first three months after Joan's death, D'Alessandro said she could not listen to the radio; hearing the slightest detail would cripple her, the pain was so indescribable. She poured her energy into raising her four other children, all the while battling a chronic medical condition that often left her fatigued. D'Alessandro quickly threw herself into creative endeavors — turning the location where Joan's body was found into a prayer site, a project that the mother found highly therapeutic — and over time learned to ease the anxiety of an overactive mind by writing down everything she aspired to do on small papers strewn across her desk.

D'Alessandro, trained in special education, said she knew nothing about working to pass laws or keeping criminals in prison. She also did not realize her purpose immediately but was eventually moved to spare another family from the wrenching pain of sitting through a spate of parole hearings — each time reopening old wounds.

After learning her child's killer could be set free, D'Alessandro made hundreds of calls to state lawmakers and circulated a petition to keep Joseph McGowan in jail. McGowan's parole has been denied four times so far. Ironically, McGowan does not fall under Joan's Law because he was convicted before the bill was signed in 1997.

"I never thought that I would become a child advocate and a victims' rights advocate. I just did it because it was the right thing to do," said D'Alessandro, who is working on an amendment to Joan's Law to keep murderers of minors younger than 18 imprisoned for life.

Joe Clementi said he could not sit by and remain silent after his son, Tyler, committed suicide. Too many people had stood idle after the Rutgers University freshman was bullied by his roommate, who streamed an encounter between the Ridgewood, N.J., student and another man over the Internet.

Eventually, the roommate, Dharun Ravi, spent 20 days in jail, convicted on numerous charges. But the Clementis believed more should come of the horrific tragedy.

"Once something like this happens to you, it's hard to get something else to bother you," Clementi said.

Clementi said his family's activism did not stem from a history of advocacy — he is head of Hawthorne, N.J's Department of Public Works, while his wife is a nurse at The Valley Hospital — but rather from a need to prevent more suicides. Clementi said the organization's mission stems from Ravi's trial, which highlighted there were plenty of bystanders who were aware of what was happening yet remained silent.

"There were so many bystanders, so many ways that he could've gotten help, but he didn't — and that's failure on several levels," Clementi said.

The Tyler Clementi Foundation addresses the issue of bullying and seeks to turn bullying bystanders into "upstanders" — people who speak out when they see something wrong. The organization is also working with colleges to ensure they have anti-harassment policies.

Jan Withers, national president of Mothers Against Drunk Driving, who lives in Maryland, has worked with numerous families and individuals who lost loved ones to drunken driving, after becoming involved around 1992, when her 15-year-old daughter Alisa was killed by an underage drinker who chose to drive after consuming numerous beers. Through her work, Withers has learned that people often do find the inner drive to make a change, though they have no previous lobbying or advocacy experience. Withers herself was a Mary Kay cosmetics sales director before her daughter's death.

"They come from all walks of life, and most of us have never ever done any kind of legislative advocacy of any kind," Withers said.

Jim and Karen Zilinski of Warren Township, N.J., have successfully lobbied to get automatic external defibrillators in every school by next year.

The couple's 11-year-old daughter Janet — who had no known heart condition — died unexpectedly at cheerleading practice from sudden cardiac arrest in 2006.

After relentless research and multiple pathological reports, the Zilinskis, who also have a son, learned that sudden cardiac arrest — when the heart beats so irregularly that it cannot properly send blood throughout the body — in children was more common than they realized.

"We decided — not even two weeks later — we cannot let another family go through this. It was excruciating pain, and it still is seven years later," Zilinski said.

The Janet Memorial Fund raises money to buy the devices for schools and train individuals in CPR. So far, 130 AEDs — almost $200,000 worth — have been donated to schools across the state and around 3,000 people trained in CPR.

Six years after the Zilinskis lobbied to make the devices mandatory — which included countless trips to Trenton — Governor Christie signed the bill.

"Maybe we were naïve, maybe we were too stubborn for our own good, but we saw something that had to be fixed," Zilinski said.

Paula Danzinger, William Paterson University's director of professional counseling, said there is no way to predict whether someone, even years after an incident, will start a foundation or push for legislation in their child's or loved one's name. Some choose to handle losses privately, Danzinger said.

How people grieve and react to such losses also can vary within families. If the differences are too great, it can lead to disruptions or schisms within the family.

"Individuals have different levels of resilience. They make meaning out of their lives in different ways," Danzinger said.

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