Once a miracle baby, New Freedom 20-year-old to share invisible disabilities at TEDx talk

Valerie Kosson doesn’t have a memory of her birth, but she knows the story well:

“It was a life-threatening situation.” 

“I was holding onto life by a thread.” 

“I was truly considered a miracle baby.” 

Her story was chronicled by the New York Times and Huffpost. Her own mother, Robin Spielberg, gave a talk about it to a TEDx audience five years ago.

This time, Kosson took the stage in Lancaster to tell her own story - the tale of a little baby born too early and so tiny that her mother’s wedding ring fit around her hand. It’s what happens after the miracle, when that micro-preemie grows up to navigate a world of people who don’t know about her fragile start and don’t understand that the challenges didn’t end when she survived.

“They said she wouldn’t walk or talk,” Spielberg said. She could get cerebral palsy and would never be able to attend a public school, her parents were told.

She shattered all those theories. She learned to walk and talk and thrive so well that she eventually graduated magna cum laude from Susquehannock High School two years ago and played in the York Junior Symphony. At 20, she’s going into her junior year as a music performance major at Lebanon Valley College, where she plays the marimba  and sings in the choir.

But that’s what can be seen and measured. She also carries lifelong challenges that aren't apparent to her classmates, teachers, casual friends or complete strangers. They're called invisible disabilities.

Her fragile beginning

Spielberg and her husband, Larry Kosson, hadn't even considered names for the twin girls they were expecting in 1998. Spielberg wasn't  six months pregnant when she went into labor, she said.

One of their daughters, Clara Kosson, didn't survive, but Valerie did. To ensure that, a nurse put her finger on the scale to make Val 17 ounces, rather than 12. Babies at that time weren't given life-saving measures when they weighed less than 1 pound, Spielberg said. 

Their newborn lived in an intensive care unit with beeping monitors and bright lights. Spielberg, an author, composer and pianist, asked if she could play recorded music to her baby. When the music played, they watched her vital signs improve along with the babies in earshot of the sound, said Spielberg, who is now a spokesperson for the American Music Therapy Association.

Kosson's premature birth caused a number of issues to be revealed: epilepsy, traumatic brain injury, ADHD, problems with short-term memory, an inability to understand the passage of time, and no nerve endings in her stomach, which has meant no hunger signals, Spielberg said.

She has now grown out of the epilepsy, but her brain remains challenged. She sometimes doesn't understand a statement or a question, almost like a foreign language is being spoken. It doesn't make sense to her on first pass, which has been a handicap, on occasion, in school.

"You think I'm fine, but I'm not," Kosson said. 

Invisible disabilities

Kosson held in her tears recently as she and her mom visited the newborn intensive care unit at Johns Hopkins Children's Hospital. 

She looked at the tiny babies and knew that life beyond the hospital has great shining moments when gracious, kind, compassionate people lift you up, but she also knows what might await those fragile lives: There are dark moments, when the world occasionally feels like it's pushing you down instead.

In high school, Kosson went dark on social media for two years because she often felt left out, she said.

"My classmates laughed at me, dismissed me. They didn't care," she said. "They didn't include me in their groups."

For any teenager, those feelings of exclusion are hurtful. For a young girl with disabilities, they are just one more burden. 

To enter Lebanon Valley College, Kosson had to take the SATs, where strangely worded questions didn't compute in her head. She wrote a letter to the College Boards about the poorly phrased questions that left her with a low SAT score; she didn't receive a response, but she got into college anyway. 

"Fortunately, the admissions staff at LVC could see past my test scores," Kosson said.

'Have compassion'

It was sophomore year at LVC when Kosson felt the sting of a classmate's laughter. She had raised her hand to answer a question, eager to join the banter with her professor.

The answer was incorrect. No big deal for Kosson, but a classmate beside her laughed.

"I was dazed for the rest of the class," she said. Then, there were tears, a call to Mom, a talk with the professor; then, too defeated by the unkindness, she didn't want to participate in class. 

So, when she was asked to participate in TEDxYouth in Lancaster June 30, she knew what she wanted to say.

"Give more of yourself than you're used to," she wanted to tell her audience. "How do you know if someone you know has invisible disabilities? You don't. ... That's why it's important we have compassion."

Compassion. Like her music teacher from Southern York County Schools, James McGarvey. He built a platform for Kosson as a young girl, so she could play the marimba with ease. He is patient and kind to her, so she has invited him to hear her speech.

And there's her best friend and college roommate, Chloe Kline, who lifts her spirit in the toughest moments. "She takes the time to hear me and understand me," Kosson said.

Kosson notices each kindness.

She doesn't wish to tell every person she meets that she carries disabilities. She just wants to be heard and seen for the person she is: Valerie, the miracle baby whose name came from the word valor: courage.

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