Nina's gift


BRATTLEBORO -- Jan Ori knew she would have to return to Middleton, Wisc., every year on July 1 to honor and memorialize the life of her daughter, Nina, who died that day in 1989 of a brain tumor.

Nina was 12 when she died and her death broke up Ori's marriage, and it broke up the rock band she played in with Nina's father, Mark Wiley, and shattered her world, leaving her little reason to remain in the Midwest.

So when she set out to move to Vermont less than a year later, following an old boyfriend who had made his way to Putney, Ori promised herself to always find time in her schedule to visit the memorial stone in Parisi Park that overlooks the softball field where Nina used to pitch.

She went back in 1990 when the stone went up and hundreds of friends showed up to remember Nina. She drove out five years later with her then-infant son, Max, who is now 21, and who has also returned each year with his mother. And for a quarter-century, four of Nina's friends have also tried to make the annual pilgrimage.

For 25 years Emily Ruzicka, Heather Walsh, Rhea Vedro and Amy Richardson have made it a priority to meet Ori on July 1 at the stone, which is inscribed with a poem Nina wrote a month before she died. They met there to grieve in those first few years when they were in middle school and high school and the pain was still raw. They went back during college to drink wine, and to talk about the boys they were dating and the classes they were taking; when adulthood and parenthood were both still on the horizon.

And they returned this past year, for the 25th anniversary of their friend's death, with their own children in tow. For Ori the four women, who are all now in their late 30s, have grown to be close friends, and they have provided Ori with a bittersweet taste of what it is like to watch a girl grow into womanhood.

"I am so filled and happy to be with them at every single stage of their lives, but I have to be honest," Ori said, fighting back the tears. "There is a part of me that gets jealous. It is hard to watch them grow and turn into beautiful young women with families and children and know that Nina never had a chance. It always makes me wonder what kind of woman Nina would have become. Where she would have studied and what kind of mother she would have been. We'll never know."

For the four friends, who watched Nina slowly deteriorate as the tumor ate away at her brain stem, the experience forged a bond that keeps them close to this day.

"We are really very different people and we may or not have remained close through all of these years if we had not gone through that transformative experience," Vedro said about watching her friend die. "But these friendships have endured and that is the gift that Nina gave us."

One horrible second

Nina was the pitcher on her softball team and she came home from school one day saying that her left arm was sore. Sitting in Brattleboro last week, Ori held her own arm up, massaging the spot where her daughter said the pain was. They called a friend who was a doctor and he was perplexed by the injury which did not appear to be a sprain or broken bone. He recommended that Nina get an MRI, which Ori thought was way out of line for something as common as a sore wrist.

Nina pitched in the game that night and her team won.

The next day a doctor read Nina's MRI and told Ori that her daughter had an inoperable brain tumor.

"How can you go from a sprained left hand to an inoperable brain tumor in 24 hours?" Ori asked. "But life can go like that. It can turn on a dime. Your life can change completely in one second, in one horrible second."

The tumor that the doctors found was attached to Nina's brain stem. As it grew it affected Nina's motor skills; her balance, her arms and legs, and eventually her voice, swallowing and breathing. But in those final months Nina's soul and heart, her mother said, remained active and spirited.

"Her body was dying but her mind wasn't dying, her heart was not dying," Ori said. "It didn't ever affect her, her personality. So Nina kept growing. She grew into a 12-year-old, and her friends kept growing with her."

Richardson said Nina was a free spirit who could rock hoop earrings and a hip hairstyle at school and then strike out the side during her softball game later that same night.

The purple house where Nina lived with her parents was filled with artists and musicians. Ori's band, Figure 5, whose album was produced by Butch Vig, the producer of albums by Nirvana and Green Day, would be practicing in the basement.

Richardson said Nina never lost her spirit or her fight, and she credits those six awful months, when her friend was slowly dying, with strengthening the love she shares today with the other women.

"Jan showed Rhea and I how to put in her feeding tube. I was 12. It was scary but I wasn't scared," Richardson said. "We'd go in every night. One of our parents would drive us to the hospital. It became normal."

The four friends spent the next six months visiting Nina in the hospital, smuggling in her cat, bringing her jewelry and clothes and trying to do the things teenage girls do in spite of the fact that one of them was slowly dying.

Before she was admitted to the hospital, Nina's motor skills were slowly failing, and while she was confined to the hospital bed the cancer completely stole her body functions away until she was communicating by blinking her eyes.

Ori said Nina's friends remained brave and positive beyond their years.

"People get afraid of these things, like brain tumors," she said. "These girls never saw the disease, they only saw Nina. If people had abandoned her or not had the love for her they did, she might have gotten depressed. She might have given up, but she didn't give up."

A part of Nina in all of us

None of the four friends remember when exactly it became a non-debatable tradition to visit Parisi Park, which is outside of Madison, on July 1.

When they were still teenagers living there it was easy, and it made sense. Then came college, relationships, marriages and divorces, children and careers, and through it all July 1 remained circled on the calendar. But the love and friendship these five women share span the years and distances between them.

Ori attended their weddings and counseled them through crisis and trauma. Walsh's mother abandoned her and she said Ori was a mother-figure to her. Richardson flew out to Vermont when she was 17 so Ori could help her pick out her prom dress. Vedro attended New York University and regularly visited Ori in Putney where she was living. Last year Ruzicka came out with her two-year-old son Dash.

"Jan saw a part of Nina in all of us," Richardson said. "Jan wanted us close and wanted to watch us all grow up."

"To just be with them as they grew into the adults that they are now, and to be with them as they become wives and mothers and lawyers, that's when we know we're with Nina," Ori said. "She is still with us and always will be. That love lasts forever."

Ori has a photo of herself and Nina, and in it Ori is about the age the four friends are now, and Nina is about as old as Walsh's oldest daughter.

"It's a powerful thing to have that benchmark in our lives," Walsh said. "I try to imagine going through something like this through my daughter's eyes, or how it was for Jan, who was my age when it happened."

Ruzicka said that over 25 years the annual gathering on July 1 has changed from a day of sadness and grief to one where busy parents and business owners can relax and simply enjoy the moment.

"It's not heart wrenching anymore," she said. "Being 12 and 13, that was so long ago. We all came through something that was incredibly hard, and we came out closer to those people on the other side of it."

But for Ori every year it gets hard around the date. She looks forward to the trip and she aches for the daughter who was taken from her. At the 25th anniversary celebration this summer Ori wondered how long it would last. She knows that as their children grow life will become more complicated.

More than anyone Ori knows that life can be unfair.

"You know, 25 years is a long time, and I asked them if we should stop," Ori said. "But they wouldn't have it. They said that they would be carrying me here one day, and that's probably the way it's going to be."

Howard Weiss-Tisman can be reached at or 802-254-2311, ext. 279. Follow him on Twitter @HowardReformer.


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