Editor’s Note: This is part of an occasional series called “Enduring Legacies” about your recently deceased neighbors and friends. They weren’t famous. However, in their otherwise ordinary lives, they were extraordinary.
JACKSON TWP. – Love can be as complex as a lasting marriage of smiles and tears, anguish and passion, but as simple as a baby’s fingers wrapped around one of your own.
Love is roses, candies and a candlelit dinner on Valentine’s Day.
Or much less.
“We learned to celebrate the little things,” Nick Schoeppner explained.
“It changed our perspective,” added his wife, Hosanna Schoeppner.
Margot Schoppner: Margot Schoeppner obituary
Wonder Margot: Fundraiser Miracle Margot
Love can force you to make decisions you never imagined. And when it’s over, and the object of your affection is gone, however abruptly, that love is more than just a memory. It changed you for the better; made you appreciate life and see the kindness of others more clearly.
This is Margot Schoeppner’s legacy.
Margot died last month at Akron Children’s Hospital. She spent all but one of her 179 days there, most with a breathing tube in her lungs and a feeding tube to feed her. She was showered with love by her parents, Nick and Hosanna; loved the round-the-clock care from his medical team; and adored by people she had never met.
His obituary said:
“In her nearly 6 months of life, Margot has touched so many hearts and taught us so many lessons about what’s really important. Margot loved sleeping on mom and dad’s lap, having her unique little eyebrows rubbed , staring at the lights on her toys and licking anything near her adorable little tongue. Margot was a special baby and loved beyond words.”
In the end, the little things mattered the most.
Before all this, the Schoeppners had such plans for Margot, the newest addition to their young family.
Nick and Hosanna, both 32, met at the University of Akron. He grew up in the Sandy Valley area; she was from Holmes County. Both studied architecture and then went to Kent State University for graduate school. They had dated for years, then got married in 2016.
Nick had a design position at Goodyear Tire & Rubber Co. in Akron. The couple bought a repairman a few doors down from Lake Cable Elementary. They welcomed their first child, Ruby, into the fold in 2019. Hosanna took a job with nearby SoL Harris/Day Architecture.
Their path was new, fresh and clear.
They were thrilled to have a second child when Hosanna got pregnant in late 2020. They knew it wouldn’t be easy. Maternal and fetal screening had revealed a probable heart defect in Margot – although the issue was resolved with surgery after birth.
“At that time, I just thought, ‘Will she be able to play sports?’ and things like that,” Nick recalled.
Then came bad news, followed by much worse news.
Margot was born on July 16 at Aultman Hospital in Guangzhou. The Schoeppners soon learned that their newborn baby needed surgery to repair the damaged intestines. She was taken to Akron Children’s.
This operation was successful.
But Margot’s problems increased. A second heart defect was verified. Then a genetic test confirmed that she was born with trisomy 18, commonly known as Edwards syndrome.
Normally, babies each receive 23 chromosomes from the mother and father. But Margot, and other people with trisomy 18, end up with three, instead of two, copies of chromosome 18.
It affects about 1 in 6,000 babies born in the United States, according to the Trisomy 18 Foundation.
Unlike Down syndrome, also caused by an extra chromosome, babies with Edwards syndrome usually suffer from life-threatening medical complications in the first few months and years.
“Our goal has always been to fight for her, but always keep her comfort in mind,” Hosanna said.
Hosanna joined online support groups. She knew that only half of babies with Edwards syndrome survived birth. Many died within the first weeks or months. Even those who lived longer had developmental disabilities and needed home nursing care.
“It’s okay, we’re gonna love it anyway,” Nick told his wife.
“You don’t understand, she’s going to die,” Hosanna told her.
So the Schoeppners’ plans for Margot changed. It was no longer about looking forward to her first words or steps, or watching her go off to kindergarten and then graduate from high school.
“It was about getting through that day and then the next,” Nick said.
In September, they discovered that Margot had a liver tumor.
Margot’s very existence has been largely in the hands of her parents. Should they make decisions about how much medical intervention is too much? Is there even too much?
“We were in awe that she was even there…we’ve come this far,” Hosanna said.
“We were basically faced with two options: provide palliative/comfort care or proceed with chemo knowing that it would potentially be a very difficult road with only a slim chance of success,” Hosanna wrote on her Facebook page on September 22.
They struggled with choice. They prayed. They said they consulted the hospital’s ethics committee. They chose chemotherapy, but were prepared to quit if they believed Margot was in pain.
Before Margot was born, everything seemed so much more black and white. Hosanna said she never imagined making the medical decisions the couple eventually made, all in hopes of possibly bringing a severely disabled child home one day.
“No way,” she said.
But she and Nick had held Margot back for hours. Margot made eye contact with Nick. She had held their fingers. One or the other slept most nights on a couch in Margot’s room. They read to him. Ruby sang “Twinkle, Twinkle Little Star” to her little sister on Facetime.
They loved Margot.
“Quality of life is subjective,” Hosanna said.
For six months, the Schoeppners’ world was hospital, work and home. Nick and Hosanna’s parents helped out with Ruby’s duty, until Hosanna’s father, Tien Le, died in a car accident in November.
Outside the hospital, a host of relatives, friends, acquaintances and people the Schoeppners didn’t even know helped.
They mowed their lawn; meals and cards delivered; created a GoFundMe; someone, they don’t know who it was, paid for a cemetery lot; the funeral home would not accept payment.
There was also “Mums for Margot”, created by Katie Curtis, a former classmate of Nick. Curtis had hoped to raise $1,000; the effort grossed $6,000.
“A lot of people were crying when they were buying their flowers,” Curtis recalled. “They would buy for $60, give me $100 and say ‘keep the change’…the Sandy Valley community is very strong.”
The outpouring of love mattered.
Nick and Hosanna had always thought of themselves as kind and good people. Today, they said, they can and must give more. They want to be more like those who helped them.
Margot’s Last Days
By the time 2022 had rolled around, Margot had more bad days than good. Chemotherapy had prolonged his life, but the tumor on his liver had not shrunk.
The Schoeppners considered moving Margot to Cincinnati where a surgeon told them he could remove the tumor. After her recovery, she would likely undergo a second heart operation.
Again, Nick and Hosanna had to think again about some of these same questions. How much medical intervention is too much?
“I started wondering if all you want for your kids…is it for them or is it for you?” Nick said.
Margot, it turns out, made the decision for them.
Her condition deteriorated – she had become too fragile to be transported. Soon they should consider removing her from the ventilator to save her from a likely more painful death from growing cancer.
Again, Margot made the decision for them.
Margot died on Monday January 10. Two days later, Hosanna explained the ending in a Facebook post: how she prayed to God to take such decisions away from them, even if it meant stopping Margot’s heart.
The next morning, Margot’s condition plummeted. A palliative care team stepped in to make his impending death less painful. Nick and Hosanna told Margot how much she was loved.
Hosanna’s Facebook post continued: “Around 4 p.m. on Monday, Margot’s precious heart quickly slowed before beating for the last time as I told her it was okay if she had to leave now. We are deeply saddened, but I cannot Thinking of a better scenario for her to carry on…on her own, at her own pace, surrounded by those she shared her life with.And I don’t know how much clearer an answered prayer can be.