Austin parents create daughter’s legacy in nonprofit Casey’s Circle

1:01 p.m Wednesday, June 14, 2017 Lifestyle

It’s a quiet Monday afternoon in May at the Thinkery, a time when it’s normally closed. “A happy very unbirthday to you,” says Marty Barnes as she greets families coming to the children’s museum.

About 50 families of children with special needs had the whole museum to explore, away from the typical crowds that can make the museum an overwhelming and unwieldy place for kids with sensory or mobility issues.

Barnes’ goal: To give kids who often don’t get traditional birthday celebrations a party complete with cake, snacks and presents — all with an “Alice in Wonderland” theme.

Marty Barnes and her husband, Tim, are the founders of Casey’s Circle, a local nonprofit organization named after their daughter Casey, who had a brain injury at birth. She had cerebral palsy, blindness and deafness, among other diagnoses.

Beth Shurtz brought her son Jack, 5, who has Down syndrome, and his sister Lydia, 7, who is neurotypical, to the Casey’s Circle UnBirthday Party. When she’s brought Jack to places like this in the past, often he can’t see everything he wants to see because the other kids aren’t moving at Jack’s pace, she says. Usually, she says, “it’s too much for him.”

At the UnBirthday Party, Jack got to play in the museum’s shadow box for as long as he liked without being moved along by other kids. “He got to experience it over and over again,” she says. “It’s so fabulous!”

Casey’s Circle is all about giving kids with special needs typical childhood experiences, from Christmas and Halloween parties to trips to a movie theater and birthday celebrations.

It’s all about parents being able to create memories for their children and “focus on their kids being kids first and not patients,” says Marty Barnes, 40. “It’s our goal to help families make sure that they are creating the memories and having the childhood that the kids deserve. We did that as best as we could with Casey, and I think it’s good to try to give back and help other families do that.”

Casey was the Barnes’ miracle baby from the moment she was conceived. Tim and Marty Barnes met in Austin at work in 2000 during the tech boom. He grew up in Northwest Indiana; she grew up in Georgetown. Their first date was a 101X Fest outdoor concert at Auditorium Shores.

The tech bust took them to Los Angeles in 2002, but they always planned to come back to Austin.

They never thought they would marry, but in December 2004, on a trip to New York, he put the ring in her ice skate. She was confused — someone else had left their ring in her skate, she thought.

Once she clued in, she said yes. They married the next October.

They didn’t know if they would be able to have a family. An earlier pregnancy had been ectopic and ruptured one of Marty Barnes’ fallopian tubes. She also had had a procedure to remove adhesions on her uterus.

She did get pregnant, and somehow, on that first ultrasound, the doctors were able to tell her that the egg had come from the ovary on the side without the fallopian tube. “We started calling her our miracle baby,” Marty Barnes says.

“I loved being pregnant,” she says. She didn’t even have morning sickness.

It was considered a high-risk pregnancy, but after multiple ultrasounds and careful monitoring, Barnes was taken out of the high-risk category during the third trimester. “There were no signs at all of what was going to happen,” she says.

On April 23, 2006, at 36 weeks pregnant, just three days shy of being considered full term, Marty Barnes began to feel an intense pain. They tried to time it, thinking it was contractions, but realized it was just one big pain, not a series of pains. They called the doctor and rushed to the hospital, which was just four blocks away.

Marty Barnes was whisked off to an operating room. Tim Barnes suited up for the cesarean section. “They never came back to get me,” he says. “I started asking what’s going on.”

Marty Barnes’ uterus had torn completely in half. The placenta had detached. Her baby was in her abdomen near her liver. Casey Barnes, it’s estimated, went 15 to 60 minutes with little or no oxygen.

She was born without a heartbeat or pulse. Her Apgar score (the score doctors give babies at birth) was 0 out of 10.

Casey Barnes was revived and sent to the neonatal intensive care unit. Marty Barnes was put back together and went to the intensive care unit. “I couldn’t see any of you,” says Tim Barnes, 44. He was given little information. “I didn’t know if Casey was a boy or a girl.”

Casey wasn’t supposed to live — doctors were honest about that. They didn’t really know what to do for her.

Marty Barnes remembers being jealous of the other mothers who were going home with healthy babies. “Why did this happen to my kid? What did I do?” she thought.

“I had a lot of guilt,” she says. “‘It’s my fault. I did this. I broke the baby.’”

By the time she went home months later, doctors had a better idea of how complicated Casey was, but they still didn’t know what to do for her. They sent her home with little help for her parents. (Later she would have regular nursing care.)

“They sent us home to die,” Marty Barnes says. “There was nothing they could do.”

“They were expecting her to not live at home,” he says. “When we got to a year, we had to come up with a plan.”

“Both of us from the get-go said, ‘We’ll find a way to do it,’” Marty Barnes says.

The Barneses never gave up. They tried everything for Casey: physical therapy, occupational therapy, craniosacral therapy, acupressure. “Anything we could do, we were doing,” Marty Barnes says.

Friends still don’t understand how the Barneses were able to do what they did for Casey. They use words like “amazing” when describing them. “They are really the best parents I’ve ever met,” says Val Zavaleta, who is now on the board of Casey’s Circle. “They truly put their daughter first. … It was really inspiring to me, just selfless really.”

The Barneses drove all over Los Angeles looking for the right doctors. They needed doctors who would be realistic but also optimistic. It was tough, though, because “there were no kids like her,” Tim Barnes says.

“Now there are more kids like her,” Marty Barnes says.

“Medicine is getting really good at saving lives,” he says.

At the time Casey was born, some hospitals were testing using cooling caps on infants with a brain injury to protect the brain and organs until the baby can be stabilized. Casey’s hospital wasn’t doing that yet. When Casey was born, they put her in the heat of the incubator. Cooling caps became the standard a year after she was born, and later, whole-body cooling systems.

The Barneses don’t hold out hope that everything would have been different with the cooling. “I think she would have been severely disabled still,” Marty Barnes says.

One day turned into one year. “Doctors would say, ‘I can’t believe she made it to the first year,’” Tim Barnes says. His response: “You can stop betting against her.”

“Every day was a borrowed day,” Marty Barnes says, because they had no idea if they would have three more days with Casey or 30 years with her.

They started focusing on really knowing their child, giving her the best experiences and focusing on what she liked to do and what she could do. They talked to her like a parent would talk to any child.

Rather than waiting for doctors to tell them about Casey, they began to tell doctors about her.

“You become the expert on your kid,” Tim Barnes says. “It’s a change of mindset.”

She could make her wishes known. Her parents knew that she loved to watch cartoons, especially “My Little Pony.” She loved music and to play on a guitar app on the iPad. She loved elephants and unicorns and butterflies. She loved pink and purple.

“She was all girl,” Marty Barnes says.

She was also a daddy’s girl. She would know when Tim Barnes turned the doorknob and came home from work. She loved to snuggle and rest her head on their arms.

When she was 2, Casey was stable enough for the family to move back to Austin. Here they were able to find doctors who understood them, who valued their input.

They made some gains with Casey, but each time she got sick and had to be hospitalized, she never fully regained what she had before. “You can only do that so many times,” Tim Barnes says.

Yet they began to believe that Casey would make it past 10 years old, the new bar that had been set.

They gave her all the experiences that kids should have. They dressed her up for Halloween and threw birthday parties for her. Her Make-A-Wish wish was to go see a movie in a movie theater. In 2010, she saw “Despicable Me” in a theater just for her, where she had room for all of the equipment that came with her.

“Marty and I are a different breed,” says Vanessa Ven Huizen, who lost her own daughter, Giuliana, in 2013. Giuliana was medically complex like Casey. “We know our kids’ days are numbered. We drew upon what to do to maximize their quality of life.”

People who don’t have experience with special-needs kids don’t realize how much those kids can experience, says Dr. Karen Keough, Casey’s neurologist. “They experience it differently than able kids who don’t have challenges, but it’s enjoyable in their own way. It makes it worth the effort.”

Part of giving Casey a childhood was enrolling her in activities. She was part of the 2 Dance 2 Dream dance group for children with special needs, and she joined a Girl Scout troop in the neighborhood.

Trixy Crowley was Casey’s troop leader. They found ways to make sure their meetings were accessible and that Casey was included. The girls took turns helping Casey with projects. She would give them verbal clues as to which colors she liked. If she missed a meeting, Crowley’s daughter, Ava, 8, would read about the badge to Casey to make sure Casey could earn it. “All the girls were willing to help,” Crowley says. “They would fight over her.”

“We’d always be a good Girl Scout to her even though she’s different than us,” says Crowley’s daughter, Berkley, 8. One thing Berkley remembers about Casey: “She was a diva. She always had cool sunglasses. She liked to dress up.”

As much as Casey got from being in the troop, the other girls were given a gift by knowing Casey.

“I’m so grateful that my kids got to know Casey and, through Casey’s Circle, other kids,” says Zavaleta, whose daughter Rachel, 8, was in Casey’s Girl Scout troop, and daughter Sara, 10, was Casey’s helper in the troop. “Growing up,” she says, “we had a child with special needs down the street from us, and I was scared to death of that child.” Her girls aren’t afraid or disrespectful. “Not very many kids their age are able to have an experience that gives them empathy.”

Along the way, Marty Barnes wrote about her experiences. She turned her pregnancy blog into a way to give their family and friends updates from the hospital. Soon she was sharing resources and advice with other parents of special-needs or medically complex kids.

Barnes began a group called CLU for inclusion. It was designed to give kids like Casey these typical childhood experiences. Then she connected with the founder of Mommies of Miracles, who lived in Ohio, and joined forces, helping to grow that website from 1,000 followers to 140,000 followers.

Mommies of Miracles started a Halloween program to bring awareness to people that not all kids could eat candy for Halloween. You could print out signs and register your house as one that had nonfood treats for kids. It later became the Teal Pumpkin Project from Food Allergy Research & Education.

Barnes held the first Christmas party for families with special-needs and medically complex kids in 2012. She worked her connections with the medical community to give her space. She got friends, family members and neighbors to donate things. Soon she was creating a Halloween party, then a movie party. The UnBirthday Party is the latest event.

Almost everything is donated, and people can make monetary donations, too.

“We’re serving a community that everybody loves,” Marty Barnes says. “You can’t look at a special-needs kid and not want to help them. It’s easy to get behind.”

The events have only grown. Last year, the Christmas party had 150 kids. “It was sensory overload,” Marty Barnes says, especially for the medically fragile kids.. She saw families having to leave. “I knew that if Casey was at that party, she would have left, too.”

They will now split it into two parties: one just for the medically complex kids, like Casey.

Barnes also started a bereavement group for parents who have lost children, because that’s a very real part of this community.

As Mommies of Miracles grew, Marty Barnes and the founder began to have different ideas of where to take it. Marty Barnes also found herself pulled in a different direction. By the end of 2014, Casey’s health was declining. “She needed all of my time,” Marty Barnes says.

They thought Casey would pull through. She had had bad times, scary times before. She always seemed to rebound.

One thing Marty Barnes always worried about was that Casey would tell her she wanted to stop fighting for life and that somehow she would miss the signal.

They also knew they had to get the timing of when to get her into hospice correct. Too early and she might not be able to get some of the treatments she was getting; too late and her death might have to be investigated for cause.

As Casey’s health really declined in March 2016, they knew it was time to call hospice. “We thought we had weeks,” Marty Barnes says. “We had 18 hours. She was waiting until we got into hospice.”

On March 10, 2016, Casey let them know. “She was nonverbal, but she was very expressive,” Marty Barnes says. “I spent 10 years terrified I wouldn’t know, that I wouldn’t recognize that and be able to respect her wishes.” Casey made herself very clear.

They stopped doing all the things they did to keep her alive. They sat with her on the couch, as they often did as a family, and held their baby. The hospice nurse told them what was happening to Casey’s body so they wouldn’t be scared.

Even though they had almost 10 years to prepare for Casey’s death, “You can never get prepared for something like that,” Tim Barnes says.

“She told us when she was tired and when she was ready, and we tried to respect that the best way we could,” he says.

“It was peaceful and respectful,” Marty Barnes says.

And then the house was hauntingly quiet. “It was too quiet. Our house was never quiet,” she says. There was always an alarm going off, always a machine on. There was always a nurse there, too. “Everybody else was gone,” she says. “It was just us.”

There are still days when the quiet is too much.

The hardest part was going to the funeral home. They had never left the house without her. They had never gone together and not taken the accessible van. “I can’t leave,” Marty Barnes says she remembers thinking. “This is where she always was.”

The funeral was hard, and then Casey’s birthday followed. They invited her friends over and released balloons. They got tattoos on their forearms where Casey laid her head. Marty Barnes chose a pink elephant, Casey’s favorite animal, with three butterflies to represent the three of them. Tim Barnes chose the cutie mark of Casey’s favorite My Little Pony, Twilight Sparkle, and this year added wings to it. And yes, it’s in pink and purple, Casey’s favorite colors.

Soon the Barneses became part of the bereavement group they had started for families in their network who had lost children. Soon they were included in the annual bereavement dinner.

What tears many couples apart has brought them together. Casey taught them how to work together. “Casey hated conflict,” Marty Barnes says. “We had to learn to communicate calmly.”

“All the small things people fight about weren’t an option,” Tim Barnes says. “You can’t be selfish.”

Friends and family continue to check on them and invite them to events, even though they know they might only come for a short time. They text them jokes to open when they need a laugh.

The thing that always gets them, though, is the innocent question, often asked in the supermarket line: “Do you have kids?”

They don’t know what to say. If they say yes, then people ask how old their kids are. “There’s no quick answer without creating that look of depression,” Marty Barnes says. And then people will respond when she tells them that her daughter died: “Oh, I’m so sorry.” “Then I’m forced to say, ‘That’s OK.’ It’s not OK.”

“We’re still trying to figure it out,” Tim Barnes says.

“It stops us in our tracks every time,” she says.

The best response has been, “What was she like?” or, “What was her name?”

“That’s the greatest thing,” Tim Barnes says. “We do like to share her story.”

Casey’s Circle is a way to never forget Casey, to continue the lessons she taught the Barneses. To give back.

It has helped give them a purpose.

“Marty has ideas that don’t stop, and they’re good ideas,” Crowley says. “Tim is the best supporter of her. He just lets her fluid ideas get going. He says, ‘Yep, I like it. It’s cool. What do we do to get it going?’ It’s really good teamwork. It’s their teamwork they used raising her.”

They picked up where they left off with CLU and Mommies of Miracles and formed Casey’s Circle, which is officially a nonprofit.

“What I’m certain of is the commitment they have to this process runs very deep,” Keough says. “This is how they are channeling the strong motivation they had to work for Casey. I see a sustainability here that people can’t always muster.”

They continue to gather volunteers, including the Girl Scout troop, and donations to build on the program. They always have what Casey would have liked in mind.

“They have a heart for it,” Ven Huizen says. “Marty has a passion for it. It’s needed. … She’s made something beautiful.”

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