- Associated Press - Friday, September 25, 2015

WESTON, Mo. (AP) - In a 100-year-old farmhouse north of Weston, Grace Cogan clunks away on a Smith-Corona manual typewriter in a tiny space her dad carved out beneath the stairs.

She calls it her “writing room.” Grace is 14. She has a cigar box full of old corncob pipes, and she’ll tell you her favorite quote comes from Thomas Jefferson: “I cannot live without books.”

Same with Grace. The proof is scattered about and most often beneath her nose. Her favorite book is “To Kill a Mockingbird,” a story she regards so highly she would never presume to see herself in the metaphor.

But Grace Cogan is a mockingbird, the Kansas City Star (https://bit.ly/1KuB8nT ) reported.

Full of flight, full of song, innocent.



When she was born 14 years ago, the nurses dried her off and wiped away skin. She had a genetic disorder called Goltz syndrome, or focal dermal hypoplasia. Doctors told her parents she might not live the day.

Ask those in her family now about Grace and her 22 surgeries and all the hospital stays, and they’ll come to a point where the voice breaks and then goes quiet. Hand up.

Well, not Grandma. Sandy Ryan’s voice broke, but she plowed ahead talking about how a family came together to help a little girl who fought to live through the bad days and then came the good day this summer when Grace called from the University of Maryland to tell her grandparents she’d finished fifth in the country for National History Day competition.

“I couldn’t see her but I could tell her face was lit up,” said Ryan, who lives in Platte City. “That girl does not give up. We knew she would do something great.”

When Grace was little her mother, Kelly, read Little House on the Prairie books to her. Her dad, Brian, upped the ante with historical novels like “The Red Badge of Courage.”

Then Grace, despite severe vision problems, started reading on her own, her nose from that point on typically buried in a book. That’s where she sees most clearly.

Stories come alive to the point that whatever her charted vision, she tags along at night with Scout and Jem and Dill when they run to the town square and find Atticus sitting outside the jail.

Maybe because of those early books or maybe because of where she lives - the farm house that’s been home to five generations of her father’s family - Grace came to love history.

“I know this house from the stories,” she said. “It’s alive to me.”

She wrote a book about it: “The Historical House.”

The Gettysburg Address hangs on the wall in her bedroom. David McCullough books sit on her bookshelf. Grace and her dad found the 1940s Smith-Corona typewriter somewhere and gave $10 for it and found someone to fix the broken carriage return.

Her mother calls Grace “an old soul.”

Grace, who just started the eighth grade, has a map of Benedictine College on her desk. She’s learning all the buildings and plans to attend someday.

“My brother says you can almost see this house from a certain spot on campus,” she said of the school in Atchison, Kan., a few miles to the west across the Missouri River.

She has detached retinas, glaucoma and coloboma, a hole in part of her eye.

“She could lose her vision tomorrow,” her mother said. “She knows that.”

She does. And she keeps reading and writing, pecking away on that typewriter, learning that map and smiling.

Grace hasn’t been able to be a regular kid. She can’t go to public school, and her friends tend to be friends of her two older brothers who, by the way, are her heroes.

That’s why an even bigger day than the Maryland trip came in May when Grace competed in the state leg of the history competition at the University of Missouri in Columbia where Jack, 19, and Jacob, 21, attend college.

She had cheered for them when they ran cross country at West Platte High School and won a state championship. She’d always wanted something like that for herself.

On that day in Columbia, it was Jack and Jacob’s turn to watch her. And after she won, they lifted Grace high on their shoulders and she towered over everything bad that had ever happened to her.

“I could feel their proudness and I’ll never forget that feeling,” she said of that day. “It was hard for me. I just looked around up there and said to myself, ‘I have done this.’ “

___

Kelly and Brian Cogan had no warning anything was wrong when Grace was born.

Then an ambulance whisked their newborn baby to Children’s Mercy Hospital. Goltz syndrome affects the skin, skeleton, eyes and face. Kidney and gastrointestinal problems also occur.

“Absolutely not,” Kelly answered when asked if she’d ever heard of the disorder.

The diagnosis came fast only because a dermatologist at the hospital had seen a recent case in South America.

“It was touch and go for a while,” said Ryan, the grandmother. “We didn’t know if she was going to make it. I think we all thought that if we get her home, she’ll be OK.”

Grace made it home but was often sick. Her brothers were just little guys. Kelly, a teacher, and Brian, a heavy equipment operator, both worked. Grace had lots of doctor appointments and surgeries, some of those in Detroit, and they couldn’t fly because of her eye problems.

Kelly’s father, Larry Ryan, volunteered to go along and help drive. He also helped get Grace to school every day at the Children’s Center for the Visually Impaired in Kansas City, more than an hour away.

“He was spending the day so he ended up volunteering there,” Kelly said.

Other family members pitched in, too.

“It was definitely a group effort,” Brian said.

Despite Grace’s fragile health, the family watched her grow into a sponge for things to learn.

“Even as this little bitty thing, she wanted to know how things worked,” said Joyce Burch, Brian’s sister. “She was so curious, and she always had a book.”

Jack remembers a Christmas when his dad brought home a complete set of TV’s “The Waltons” and they all binged on the show about a family living through the Great Depression.

“I think that really got Grace into history,” Jack said.

Grace ended up corresponding with Earl Hamner Jr., the show’s creator, and his photo now hangs in her room, making her perhaps the only 14-year-old girl in the country with an autographed picture of Earl Hamner on her wall.

Family trips to historical points were also part of the deal and almost got to be too much for Kelly. When Grace wanted to see Gettysburg, Kelly told her and Brian that she was “about historied out.”

So did they go?

“Heck yeah, we went,” Kelly said.

“Huckleberry Finn,” ”Unbroken,” ”1776.” Pat Conroy books and on and on, Grace read and read.

She was scared. Her parents hold nothing back about her health. Reading calms her. Doctors’ waiting rooms, long drives to appointments.

“I know to always have a book with me,” she said.

And what do the brothers think of how Grace deals with the life given her?

“Brave,” Jack said quickly.

Lennie Medcalf, who served as Grace’s private teacher, said that to say her time with Grace has been a joy would be an understatement.

“It has been an amazing journey and adventure,” Medcalf said. “And I look forward to seeing this world with Grace Cogan in it.”

___

The cluttered shelves in the old hardware store in Weston practically dare someone to look for something not there.

Then in comes a girl looking for Wite-Out.

The little bottle and brush to paint over typos? Who buys Wite-Out?

Who else? Remember that old typewriter?

Grace was in the store that day with her aunt, Joyce Burch. For years, the two have spent a day together each week. They take day trips, make jelly, go somewhere that has a piece of history lying about or just wander through that old Sebus Brothers True Value hardware store.

“Tuesday is our day,” said Burch, who first touched her niece in a hospital incubator the day Grace was born.

The most recent Tuesday began with homework followed by the first chapter of “The Grapes of Wrath.”

Kelly Cogan, a former public school teacher, says Grace reads and does research at a college level.

Her National History Day project: “Paving the Moral Path - Frances Perkins’ Leadership informing a Legacy for Worker’s Rights.”

Grace also volunteers at The Farmers House, a working farm in Weston for persons with developmental disabilities. Kelly is program director there.

Grace has fun, too. She plays piano and loves musical theater and performing. In January, the family is planning a trip to New York to see “Les Miserables” on Broadway.

Grace would like someday to work in theater. If not that, she wants to be an author, probably writing about history.

She may even come back home to the house on the hill, the one where you can see the old tobacco barn through the trees.

Her mom and dad would probably be glad to let her have her room back. It’s got all her things, including a copy of “Go Set a Watchman,” Harper Lee’s continued tale of Atticus Finch.

Grace pursed her lips for that critique: “It’s no ‘To Kill a Mockingbird.’ “

That from a mockingbird, Grace Cogan, full of song, always.

___

Information from: The Kansas City Star, https://www.kcstar.com

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