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'I've cried with many families': Navigating life after a child has died

Buffalo News - 5/17/2023

May 17—Zachary Liberatore was a gifted high school quarterback who struggled with mental illness and died from an overdose at age 24.

Cooper McGrath, a playful 2-year-old, died from a brain tumor.

Morgan Rokitka was delivered stillborn, never to meet her siblings.

Each of them left behind crestfallen parents. Such losses also pose a conundrum for groups designed to support families as they work to save those touched by tragic illness and circumstance.

"When kids and families are in the fight for life, the bases are covered," said Jonathan McGrath, Cooper's dad. "But in the wake of a loss, you've got a family with a broken heart, looking for guidance, looking for resources."

The P.U.N.T. Pediatric Cancer Collaborative and Erie County Department of Mental Health aim to grow support for grieving parents in Western New York, including this weekend, when they host grief support programs they hope will lead to more related services.

Three international leaders in bereavement will come to the region to give professionals and families more tools to address grief in healthy, meaningful ways.

One-hundred educators, mental health specialists, first responders and funeral directors quickly maxed out capacity for the first daylong program on Friday, "Grief-Informed Best Practices: Supporting WNY Families Through Loss." Space remains available for the second — "Carrying Grief, Navigating Life After Your Child Has Died" — from 9 a.m. to 3 p.m. Saturday at the M Hotel, 2040 Walden Ave., Cheektowaga.

The program for grieving parents "goes beyond cancer," said Gwen Mysiak, executive director of P.U.N.T. It is designed for those who have lost a child to any cause, including illness, traumatic loss and homicide, she said. Register at give.classy.org/wnygrief.

The first part will cover general themes and coping strategies. The second will break those who attend into groups divided by origin of loss.

"That's where we're hoping to build peer-support networks, where the people with them started the journey from the same place," Mysiak said.

Both programs are free, thanks to sponsors that include the New York Life and Rich Family foundations, as well as community donors who gave money to P.U.N.T. last summer after the death of Luke Knox, the brother of Buffalo Bills tight end Dawson Knox, who played the same position at Florida International University and died unexpectedly last Aug. 17.

More than $200,000 in "Luke's Legacy" funds have been steered toward several of the nonprofit organization's efforts, including the weekend symposium.

Former Bills Pro Bowl punter Brian Moorman, and his wife, Amber, founded P.U.N.T. in 2004. Mysiak left a job as communications director at WNED-TV in 2012 to lead the organization, after the nonprofit helped support her family through the death of a cousin's son from cancer.

As she continued that work, she learned that by age 60, nearly one in 10 parents will experience the death of a child and that 1 in 15 children in New York State will experience the death of a parent or sibling by the time they turn 18.

"Both surviving children and parents are at higher risk of depression, anxiety, suicide, job disruption, marital disruption, early mortality," Mysiak said. "The physical effects of unprocessed grief can be lethal."

This is why understanding grief and the thoughtful support of others is so important, said Monique Mitchell, director of training and translational research at the Dougy Center, who will help lead both sessions. The nonprofit runs the National Grief Center for Children & Families and training programs across North America.

Addressing loss

The golden rule of grief support: No parent wants their child to be forgotten.

"People think it's too painful," Mitchell said. "It's actually more painful if you don't bring it up. For most parents and most caregivers that I've spoken to, their biggest fear is that their child will be forgotten, so do not forget their child. Say the child's name. Ask them about some of their favorite memories. Even if it's through a conversation or acknowledgement or symposium like this, it's powerful."

Other misconceptions also surround grief, she said.

"One is that there's a timeline for your grief," Mitchell said. "That child will always be your child, so to tell somebody, for example, 'It's been a year, aren't you over that yet?' is fundamentally and intrinsically against any understanding of what love means and connection means."

The immediate aftermath of a loss also isn't the time to talk with others about losses you have suffered in the past.

It's also not the time to get tied up in knots trying to express your condolences. "People should do the best they can," McGrath said.

"Social support is one of the biggest protective factors for someone who is grieving," Mitchell said.

Sometimes, she said, that means crying with someone, or sitting quietly nearby and saying nothing at all.

Common themes

Grief comes in layers. It differs over time — sometimes from hour to hour, or in the same week.

"There's days where you can live with your grief pretty functionally and then there's days it just gets you in a vise and you can't look to the left to the right," said Mysiak, of Lancaster, who lost her 52-year-old husband, Tom, unexpectedly last September to a heart attack, six months after two family friends lost daughters in a car crash.

Mental health counseling can help, as can continuing to honor someone who has died by raising awareness about what contributed to a death and working with others to address the root causes.

Jennifer Liberatore, of Orchard Park, started the Zachary Liberatore Foundation after she lost her oldest of four sons to an accidental opioid overdose.

Zach had severe obsessive-compulsive disorder that he and his family tried hard to manage after he was hospitalized at 16, when thoughts of suicide overwhelmed him for the first time.

Sports helped at Canisius High School — including two undefeated seasons as quarterback in 2012 and 2013 — but the condition worsened once Zach went to college.

Psychiatrists struggled to find the best combination of medications to calm his mental illness, which also caused physical pain they tried to quell with Opana, a painkiller so potent the FDA took it off the market in 2017 because its risks for addiction outweighed its benefits.

"It was debilitating," his mother said. "If you're a parent, and if your child has a broken arm, you know what to do, but it's so hard to know what to do when you have a child with mental illness."

Zach died in October 2020. A counselor, as well as a friend who lost her son to a college hazing several years earlier, helped her navigate the intense sorrow of the next several months and the lingering sadness and determination that drives her to keep memories of her son and his life's lessons alive.

The foundation has raised almost $200,000 in less than two years for the Oishei Children's Hospital Psychiatric Clinic's OCD program.

Jennifer Liberatore, a yoga instructor and Reiki master, also began teaching a grief yoga class. She and several others who attend the classes will attend Saturday's program.

"This has all helped me move through grief so that I could not only move forward, but have joy again," she said, "because I know that's what Zach wants."

'Every situation is really unique'

Dr. Denise Rokitka, a pediatric oncologist at Roswell Park Comprehensive Cancer Center, was 39 weeks into a pregnancy that had no hitches until she woke up on a Friday night in October 2008 and didn't feel her baby moving. She delivered a stillborn daughter, Morgan, early the following morning.

"I went home very quickly. I just did not want to be in the hospital," said Rokitka, of Elma, who was in the third year of her medical fellowship at Roswell Park and now runs its Pediatric Cancer Survivorship and Long-Term Follow-Up programs.

"There are things that people say all the time, like, 'Everything has a reason,' or 'This is God's plan,' " she said. "There are lots of things that people say to try to make you feel better that aren't really all that helpful. I'm not sure if there are specific words, because every situation is really unique and every family is unique."

An online support group helped her persevere after the loss of Morgan, her second of four children, including the fears she had while carrying her youngest children, now 13 and 11. So, too, did "legacy building" items, including a clipping of hair, a footprint and small stuffed animal, similar to keepsakes Roswell encourages families to preserve.

Tears help, too.

"I've cried with many families," Rokitka said.

Going forward

Bereavement runs on a personal timetable, said McGrath, of West Seneca, whose second-oldest son got sick in March 2021, shortly after his wife, Ashley, learned she was pregnant with their third child.

The couple, their oldest son, Henry, and Cooper were having lunch in March 2021 when Cooper vomited, hardly uncommon for a 2-year-old. He got groggy that night and lethargic the next day. He ended up at Oishei Children's Hospital, where doctors discovered a malignant tumor the size of his father's fist in the left side of his head, and performed surgery.

"From there, it was just chaos," Jonathan McGrath said. "We did everything we could, including putting him into a medically induced coma to get things stable, to get the pressure down. He had a hemorrhage and there had been so much brain damage that we essentially lost him. At the time, we were just in the dark, stumbling around, trying to figure out our lives."

Cooper died 60 days later.

"When your child is gone," his father said, "they fill up your car with all the stuff you've had in your hospital room and send you on your way, and you're on your way home with one less kid, an empty car seat and a broken heart."

The family remains grateful to a pediatric intensive care nurse who cared for Cooper, even coming in on her days off.

"P.U.N.T. became a lifeline," said McGrath, who has since become a development director for the organization.

The nonprofit organization paid the mortgage for the McGraths while Cooper was hospitalized. Mysiak also connected him with a dad who lost a young daughter to brain cancer. The two men continue to talk almost every day, and regularly with several other fathers the group has helped through hard times.

"The biggest, hardest thing is to say I still need a lot of help," McGrath said. "I still need a lot of people to talk to me every day. At the end of the day, the worst thing that could happen has happened. The second-worst thing is you don't remember your child, you don't commemorate them, and you don't continue their legacy however you can."

Understand and address grief

Ten core principles involve recognizing what grief is and how best to support people who are grieving, including ourselves.

1. It is normal: Loss is normal, inevitable and universal, but people are built to adapt to it and function healthfully.

2. It is complex: It's complicated because people and relationships are complex and complicated.

3. It is individual and communal: Acknowledging both buoys healing.

4. It is disruptive: It challenges our identity, relationships, beliefs and assumptions about the world and our role in it.

5. It is relational: Having people who care and support us after a loss helps us navigate the changes in our lives. Feeling heard and having people to share with helps us know we are not alone in our grief.

6. We are equipped: Experiencing loss and grief can make us feel helpless or out of control. Choosing our own healthy responses, rather than what others tell us to do or not do, can help us regain a sense of balance and a healthy identity.

7. We have tools: Paying attention to our physical, emotional and spiritual needs will help us cope with all the changes that happen after a loss.

8. Grief is person-centered: The intensity and experience of grief are unique for every individual.

9. It is dynamic: Its nature cannot be fully captured by stage, phase or other prescriptive models. There are no universally acceptable or "correct" ways to grieve.

10. It is nonfinite: Loss is interwoven into our identity, so is not finite. Grief doesn't have a magical end point. We can grieve someone throughout our lives.

Source: The Dougy Center

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