By Kathy Chaffin
Salisbury Post
WOODLEAF ó Standing beside the 11-foot Christmas tree in their beautiful country home, Mary and Brian Nance and their two daughters appear to be a perfect family.
Mary and Brian are an attractive couple, and 9-year-old Peyton and 13-year-old Spencer are beautiful. You can’t tell by looking at them that their hearts are broken.
It is only when Brian asks if it’s OK for them to hold a photo of 14-year-old Seth that the true picture unfolds. There are two photos of Seth within arm’s reach.
He selects one, then at his wife’s suggestion, sets it back down and picks up the other. In the photo, Seth’s smiling face looks almost angelic against a background of white.
An angel figurine is attached to the other side of the plaque-style frame. It is one of four angels that set on the corners of his casket after his March 15 death.
Peyton wrote about Seth in a letter to Santa published in a special section of the Post on Dec. 12.
“My brother, Seth, now has everything he could possibly want in Heaven,” she wrote. “Now, he is running and playing with Jesus. He doesn’t have cerebral palsy anymore.
“I know he would want you to give all of his toys to very special and sick children. I know this because he had a compassionate heart.”
This is the story of Seth Nance’s life and death and his family’s first Christmas without him. Not once in his 14 years was Seth able to speak or write, but his very life left behind a legacy of love.
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Mary Fraley and Brian Nance met on a blind date, marrying two and a half years later, in 1985. She was a pediatric nurse at Rowan Regional Medical Center, and he worked for Food Lion.
The couple wanted to build a house before starting a family, so they worked hard and saved their money.
Mary was about a month pregnant when they moved into their new brick home at the end of a tree-lined drive off Cool Springs Road in October 1991. Their first child, Seth Zachariah Nance, was born on June 5, 1992.
A placental abruption caused him to go without oxygen at birth, Mary says, so Seth came into the world clinically dead. “He was resuscitated,” she says, “and from the lack of oxygen, he had cerebral palsy.”
A disorder resulting from damage to the brain, the cerebral palsy caused Seth to have seizures at birth, followed by infantile spasms which had to be treated with injections for several weeks before subsiding.
Mary’s experience as a pediatric nurse had given her the skills she would need to take care of her son. She quit her job, working part time as a home health nurse whenever Brian, her mother or her sister could take over.
Though he could smile, laugh and eat, Seth wasn’t able to speak, walk or run like other children. “He was 100 percent dependent on us,” Brian says.
Mary says she believes he understood a lot about what was going on. “He just couldn’t express it,” she says.
Almost a year and a half after Seth was born, Mary became pregnant again. Spencer Danielle Nance was born Aug. 30, 1994, followed by Peyton Brianna almost four years later on May 22, 1998.
“They would snuggle up with him,” Mary says. “it was almost like they sensed from the very beginning that he was special.”
As Seth got older, his condition began to worsen. At around age 6, the seizures returned, and the Nances set up a bed for him on the floor of their large family room.
It wasn’t unusual for one of them to lie down beside him on the twin-sized air mattress surrounded by stuffed animals and toys. Mary or Brian slept in the room with him so they could check on him hourly during the night.
“He had a great little place when it was fixed up,” his father says. “I was a little envious sometimes.”
The Nances had a wheelchair for Seth, but they hardly ever used it. When he wasn’t on his pallet, Mary says he was on someone’s lap.
Mary’s parents live just down the road, and her mother would walk over every evening and rock Seth to sleep.
“Now that he’s passed away, I think it’s hard for her to come,” Mary says. “It just hit her really, really hard. It was like that was her purpose in life.”
Seth loved watching television, and the Nances bought an 82-inch home theater set just for him.
His favorite show was “Barney,” his family says, but he also liked the “Home Alone” movies and watching sports with his father.
When he was around 8 years old, Seth had to have a feeding tube inserted into his stomach. “It had gotten harder for him to eat because of the seizures,” Mary says, “and he started to lose weight.”
Seth never weighed over 50 pounds, Brian says.
Spencer and Peyton were very protective of Seth and always understanding of the time it took their parents to care for him. “They never had a harsh word to say about Seth,” Mary says. “It was just like he was the perfect little brother.”
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Seth’s health continued to worsen. It became difficult for him to breathe, and he had to be put on oxygen.
As sick as he got, his mother says, he never cried.
He was too weak to cough enough to clear his airway, so Mary and Brian had to suction him through his nostrils to keep him from developing pneumonia from secretions.
On a good day, Mary says, they only had to suction him 10 times. On a bad day, he had to be suctioned several dozen times.
Despite their best efforts, Seth developed pneumonia over and over again.
“As soon as he got over it,” his mother says, “he would get it again.” Though they were able to manage most of it at home, the hospital visits became more frequent.
On March 11 of this year, Seth began showing signs of a stomach virus. “He had vomited, which was somewhat unusual for Seth,” Mary says. “Then again, sometimes a child with reflux can throw up.”
When he vomited a second time, she says she began giving him very small amounts through his feeding tube every 10 or 15 minutes so she could keep him hydrated.
That was on a Sunday. The next morning, Mary took Seth to see Dr. Paula Franklin of Cleveland, who had been his pediatrician since he was about 10. She said they could hospitalize him or Mary could bring him to see her every day.
Mary opted to take Seth home, and when she took him back on Tuesday morning, he seemed to be doing better.
“He had stopped vomiting and stopped having diarrhea,” she says. “We thought he was on the mend.”
On Wednesday, though, Mary says Seth seemed more lethargic than usual. “It was hard to tell if it was seizures or high ammonia levels,” she says. “I just knew as the day went on that he wasn’t responding as he should.”
That evening, Mary and Brian called the doctor and asked her to admit him to Davis Regional Medical Center in Statesville. “We were really hoping to get some fluids in him and that he would start perking up,” she says.
On Thursday, Mary says she tried all morning to get Brian to go home, but he didn’t leave until around 11:30.
Shortly after that, when Mary noticed blood while suctioning Seth, Dr. Franklin decided to move him to the intensive-care unit. They were on the elevator taking him when Mary looked down and commented on his color being bad.
She looked closer and realized that Seth had stopped breathing.
Looking back, Mary says she thinks Seth waited for his father to leave so he wouldn’t have to see his only son die. She also believes that the way he died was an answer to prayer.
“I always prayed literally that if and when it was his time to go, that it would be peaceful and that he wouldn’t suffer,” she says.
After struggling for air so many times in his life, Seth left this earth breathing easily.
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The Nances were determined to make Seth’s funeral at South River United Methodist Church in Woodleaf a celebration of life. They picked out songs that had meaning to the family, and friends at the church did a Powerpoint presentation using photos of Seth with the family.
“It was a real tribute to him,” Mary says.
The Rev. Billy Towery read an essay Spencer had written about him a couple of months before for the West Rowan Middle School PTA’s annual Reflections writing contest, and she and Peyton released white doves as symbols of peace.
The family used the memorials they received in Seth’s memory to put up a Noah’s Ark at the church for the children to play on.
Since then, the family has grieved in different ways.
Mary still sleeps on the couch in the family room, and some nights, she says she still wakes up every hour to check on Seth.
Their pain was deepened when the family’s 8 year-old Great Dane, Harlie, had to be put to sleep in May, followed by their Dalmatian, Abbie, in November.
To keep the family going, she says she reminds them all that the separation is just temporary. “We’ll all be together again one day,” she says. “Faith is what gets us through it.”
The family believes Seth tried to reinforce that message when they went on a Disney cruise at the end of July.
Spencer and Peyton had been wanting to go to Disney World for years. “They never complained about not getting to go,” Mary says. “They’d say, ‘OK, can we go to the Disney Store?’ ”
When they flew into Orlando, Mary says someone approached them and said their limousine was ready. “I said, ‘No, we didn’t order a limousine.’ ”
As it turned out, Disney was doing a promotion where a million families were given free limo rides, and the Nances were one of them.
The limousine ride was nice, they say, but it was what happened on the way to the hotel that helped their hearts begin to heal.
They saw a plane writing in the sky, the first time they’d ever seen sky-writing, and the words were: “Trust God. Love God. Jesus.”
“It was like Seth was saying that to us,” Mary says. “It was perfect.”
When they arrived at the hotel, the Nances were told their room had been upgraded to a $700-per-night accommodation.
There was no explanation as to why, but they like to think Seth had something to do with it.
This Christmas is especially difficult for the family. The Nances put a white memorial stocking for Seth on the massive rock fireplace in their family room.
And to ease the pain of not being able to include his name on their cards, they inserted two Christmas poems ó “Merry Christmas from Heaven” and “My First Christmas in Heaven” ó with an angel sticker with the words “From Seth’s Heart to Yours” on it.
Seth enjoyed Christmas, his family says.
“We would always hold him up to the tree,” Mary says. “You could see the reflection of the lights in his dark brown eyes.”
Spencer and Peyton helped him unwrap his presents by putting their hands on his and actually tearing the paper. “He would grin and he thought it was fun,” Mary says. “Some of the later years, he didn’t feel that good.”
Every Christmas Eve, the family wrapped Seth up and carried his suction and oxygen machines to the home of Brian’s mother, Meredith Nance.
The family spent Christmas morning at home before heading next door to Mary’s parents, Dortha and Spencer Fraley.
The Nances plan to make today as festive as possible, but say their thoughts will be with Seth and his new home in Heaven.
Spencer wrote about his new home in the essay contest, which won first place in the county. It’s called “My Favorite Place.”
In Heaven, she wrote, Seth “will be able to run and play and do all the things he can’t do now. … He will be able to tell me all the things he couldn’t tell me but wanted to. We will have so many stories to tell each other.
“He’ll be big and strong and will never need his oxygen. … When we’re reunited with the ones that we love, it will be like Christmas every day.”
In her letter to Santa, Peyton asked for a star to be named after Seth, who always looked up at the sky.
“Every year when you fly your sleigh past his star, you’ll be thinking of him,” she wrote. “It’ll be the brightest star in the sky.”
Contact Kathy Chaffin at 704-797-4249 or kchaffin@salisburypost.com.