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Sean Kirst: After hardest loss, WNY parents heal in community

The plastic bin is in the front closet of the Blasdell apartment. Patty Diacumakos uses it for storing precious artifacts of a life that lasted seven years. There is a blanket, some handmade Christmas ornaments, even a small dress worn to a family wedding.

A few years ago, for reasons she finds impossible to fully put to words, Diacumakos felt the need one day to pull the bin out of the closet. She opened it up and began sifting through the contents, where she found a handmade card she had forgotten.

Her daughter Marina, a third-grader when a brain tumor took away her ability to speak, loved to draw. She created a card from an old manila folder that said on one side, “Dear Mom.” Flip it over, and Marina wrote:

"I love you. What will you do without me?"

For Diacumakos, it dissolved any barrier of time. More than 20 years after Marina died of cancer of the brain, the grief – as if brand-new – washed across her mother. Staggered, she remembered the one place where she could always find a reprieve, the gatherings that allowed her to hang onto sanity.

The group was called Compassionate Friends of Western New York, and it brought together people who had lost children or grandchildren, whether by accident, illness, addiction or other causes. The reason did not matter. Joined as strangers, the members soon were confidants.

For a while, Diacumakos was a regular. But she had a job and three other children, and then she moved away and lost touch with the group. While she eventually returned to Erie County, by the time she pulled the card from the bin she had no idea if the program still existed.

“I think the biggest fear we all have is that our child will be forgotten,” she said. Her daughter’s card made her realize how much she missed others who understand. After a couple of calls, she learned the Western New York chapter no longer convened, that it had gradually fallen into dormancy.

Diacumakos decided to revive it. She turned to people she trusts, and looked for help from Compassionate Friends in Rochester. Over the past few years, the local group gained new strength. This month's gathering is at 7 p.m. Tuesday at the Amherst Lutheran Church in Williamsville, where the members welcome anyone who has lost a child or grandchild, be it decades ago or in the recent past.

“For a long time, you feel like you can’t breathe, like you can’t go on,” Diacumakos said. “I needed to know some other mothers and fathers were breathing again.”

One of her first contacts was Connie LoVallo, a high school friend and a fellow hairstylist. In 1981, LoVallo’s 3-month-old daughter, Katie Lynn, was accidentally struck and killed by a van driven by LoVallo’s husband at the time, now deceased. He was moving the vehicle at a park, during a camping trip. The baby was in a stroller, and a blind spot cut off her father's view.

“It haunts me even now to turn right,” said LoVallo, who saw it happen. The meetings, at the time, helped her survive. When Diacumakos contacted her again a few years ago, LoVallo realized how much she needed the warmth of that community.

The two women found their way to Tammy Schueler, whose daughter, Alix Rice, 18, was struck and killed in 2011 by a drunken driver. Schueler had traveled as far as Batavia to find Compassionate Friends gatherings, and she agreed to join LoVallo and Diacumakos for lunch.

“I just loved them,” she said. In a sense, that conversation – in which they talked about their children and their lives – was their first true meeting before they re-established the larger group. A Facebook page triggered new interest, and the numbers at each session seemed to grow, bit by bit.

Tammy Scheuler, at the Alix Rice Skate Park in Amherst, named for her daughter. (Robert Kirkham/News file photo)

Now, they might greet 10 people or the crowd might climb to 30. The regulars include Glenn Aronow, a Lockport man whose daughter Melanie, 18, was killed in 2016 as she walked along a Wheatfield road. The driver, later convicted of imprudent speed and unlawful possession of marijuana, also struck and killed Quience Harper, 18.

“She was a warrior,” Aronow said of Melanie, who weighed less than four pounds when she was born 10 weeks early. She fought through it, he said, to become someone “who really made a difference in a lot of lives.”

Aronow describes the eight months after her death “as just a haze in the morning and every night.” Finally, in seeking a way back, he began looking for groups to help him find a means of confronting such grief.

The Compassionate Friends offered communion even traditional counseling did not provide. At the meetings, every attendee has a chance to speak, and Aronow took comfort in hearing other parents share their trials or gradual progress in daily life. Before long, he was running the group’s Facebook page and helping to set up before meetings.

“Without a doubt,” he said, “you are in a group with people who know what you’re going through.”

Patty Diacumakos, reads the back of a card written by her 7-year-old daughter Marina, shortly before she died from a brain tumor. The child wrote, "I love you. What will you do without me?" (John Hickey/Buffalo News)

Schueler said Aronow is one of several new members helping to change an unspoken tradition: Historically, she said, their Compassionate Friends groups consist mainly of women. She believes that begins with some cultural myth about male stoicism, even if fathers face the same unbearable sorrow when a child dies.

The group has also made a difference for Dennis and Joan LoCurto, whose son Michael, an Erie County planning administrator and a former Common Council member in Buffalo, died in 2017 from illnesses related to a heart and liver transplant.

While Joan is grateful for all the counseling she and Dennis received, she said the Compassionate Friends appreciate an especially subtle and unending level of pain. "It's not just the immediate loss," Joan said. She spoke of how everyday events and milestones will always be reminders of family moments they will never witness, even the quiet gift of seeing where a son known for his civic sensibility might have gone with his career.

LoVallo, who lost her daughter 38 years ago, said there are people she loves, people close to her, who ask why she returned to the group. They wonder if attending will only rekindle grief and trauma, making it more difficult to move beyond old wounds.

To Diacumakos, LoVallo and their friends, those well-intentioned questions miss the mark. A parent, they say, never fully moves past the death of a child. Instead, the best hope lies in somehow meshing that truth with your daily rhythm. Once that happens – once you learn to work and laugh and function again – there are always others, parents new to such a loss, who need you to help prove they can move beyond despair.

Within days of losing Alix, Scheuler started taking long and furious bicycle rides, trying to find peace in all that motion. What she gradually discovered, she said, is that “you’re never going to be the version of yourself that you used to be,” but there are healthy ways of rebuilding a foundation.

They all wish there was no need for their group or for their meetings. “We don’t want people to be able to join us, ever,” said LoVallo, while Diacumakos knows the cost of entry is that question without end:

What will you do without me?

Once a month, around a table, they seek answers in each other.

Sean Kirst is a columnist for The Buffalo News. Email him at skirst@buffnews.com or read more of his work in this archive.

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