JUDA — Doug Baum has had a year to put into words the constant grief he lives with each moment of every day.

“Miserable; 365 days of hell, that’s the best way to put it,” Doug said. “The knot in your stomach, the empty hole in your heart; it just wears on you.” 

Shelly Petit Kintop said the grief is exhausting. Both parents fought back tears as they talked about their daughter, Natalee, just days after the first annual anniversary of her death.

“I call it a ‘before Nat’ and an ‘after Nat’ life,” she said. “It is literal. There was life before Nat and life after Nat. There’s me before Nat and me after Nat. It is soul changing. Losing a child is soul changing, and you can’t fix that. You just have to learn how to live with it, and I think we’re still trying to figure that out.”

Baum said he was grateful for recent counseling which has allowed for a slight reprieve from the grief.

“It consumes you,” Baum said. “Your brain can’t go anywhere else. It’s just constant; I miss her, I miss her, I miss her. … From the instant you wake up, until the instant you finally fall asleep. It’s just there, and it’s awful.”

They acknowledged it was even difficult to walk into the Juda school building, where the piano recently donated by Green County Fall Nationals in Natalee’s memory is housed. Joann Hawthorn of the fall nationals, who has also known the family for nearly two decades, was the one to speak during the dedication at the Veteran’s Day service. 

“We remembered one special little gal,” Hawthorn said. “That was probably one of the hardest presentations I’ve ever had to do.”

A dedication to her life, with the help of local choirs, included the designation of the piano and a plaque to remember her love of music.

“She can live on for a long time every time someone sits down and plays,” Hawthorn said. “They can remember her and she’s a part of it.”

The death of the 15-year-old was unexpected. 

On the evening of March 26, 2018, Baum was in his garage when he heard his wife, Calli, scream. He rushed into the kitchen to find his daughter at the kitchen counter, clutching her head in pain. 

“Natalee was saying, ‘Dad, it hurts, it hurts,’ and was holding her head,” Baum said, choking back tears as he recalled the moment. “I asked her if she was all right, but she just kept saying, ‘It hurts, it hurts.’ … By the time I got her to the floor, she couldn’t talk.”

Natalee had suffered a massive rupture in the right side of her brain, causing it to quickly fill with blood. She was first taken to Monroe Clinic and then transferred to Madison. On April 1, Petit Kintop said they “had to let her go.”

Her parents would later be told Natalee had Moyamoya disease, a rare cerebrovascular disorder that largely impacts people of Asian ethnicity. According to the National Institute of Neurological Disorders and Stroke, the disorder is caused by blocked arteries at the base of the brain in an area called the basal ganglia. It was first discovered in Japan, where roughly 1 in 300,000 suffer from it. The name of the rare disease translates to “puff of smoke” and is a reference to the look of tangled, tiny blood vessels which form to compensate for the blockage.

According to Mayo Clinic, the first symptom of Moyamoya is usually a stroke. Another symptom is migraine headaches, which Baum said his daughter suffered from even in infancy. 

“And you feel guilty, because you should have continued doctoring but you simply took the migraine diagnosis and the medication worked,” Baum said. “You never heard of Moyamoya before, but I have guilt. … You shouldn’t feel guilty, but you do.”

Petit Kintop said upon researching the disease, they found Natalee had suffered its symptoms: migraines, speech issues and sensory processing delays. She said of all the things humans search online every day, she most regrets never typing “Asian female, migraine headaches” because Moyamoya may have been a result.

“We could have pushed more for answers and I think both of us really feel like we failed her that way,” she said.

But even Natalee’s primary doctor was uninformed on the rare disease, asking about it during the funeral, Petit Kintop recalled. Her mother recently asked whether a group should be started to raise awareness about Moyamoya. Baum said he had also been pondering the idea as a way to help other parents avoid what they’ve experienced. 

Hawthorn called the pair role models for their vulnerability and how they and their spouses have served as a support network for one another when the death of a child usually alienates parents. 

Natalee’s family has taken solace in the large outpouring of support that flowed freely even after their daughter was laid to rest at Greenwood Cemetery. Petit Kintop said directors from Shriner-Hager-Gohlke Funeral Home in Monroe said they had never seen so many people attend a service. Even in care, from Juda First Response to Green County EMS to Monroe Clinic and eventually at the UW Hospital, Petit Kintop said “everybody did everything they could.” A family friend, Jody Makos, was the Green County coroner at the time.

“What a horrible thing, but I don’t think we could have asked for her to be surrounded by more love for all of it,” Petit Kintop said. “You can’t thank people enough.”

Natalee was born in South Korea, just like her older brother Nick, though the two were not biologically related. Baum said the family joke about her adoption was that Natalee was flown over as a baby and thrown out of the plane, only to be caught by her dad.

As a teen, Petit Kintop said Natalee was starting to understand who she wanted to be in years to come, laying out her sophomore schedule to accommodate for Certified Nursing Assistant courses. Natalee loved running. Driver’s education lessons were underway and she was halfway to 16, eager to get her license.

Baum said he doesn’t begrudge other students for experiencing their own life events, but finds that he feels rage when he remembers Natalee won’t ever get to go to prom or take a car out on her own. Petit Kintop shared a similar feeling; anger at an unfair world.

“You really feel like she got robbed of all of that,” she said.

Supporters used Natalee’s love of Spider-Man — a subject of bonding between Nick and herself, much like music — to create T-shirts as a fundraiser for the family. Petit Kintop said the shirts are still worn regularly, proudly sporting #nataleebaumstrong on the back, just one of the examples which continues a year later. 

Many people thought of Natalee as a hero, her parents said. As the recipient of bullying due to her race, Baum and Petit Kintop said their daughter would stand up to bullies who targeted others. She was also an organ donor, something her mother said she felt Natalee would have wanted.

“She was always a fighter,” Petit Kintop said, noting Natalee had been born 10 weeks early and weighed just 3.5 pounds. “That’s why I always say she’s our sweet, sassy baby girl, because she was sassy. And she was full of sarcasm, but that’s what she needed to be. Now, we realize, she probably fought a lot more than we ever knew.”