When Marty Barnes was pregnant with her daughter Casey in 2006, everything was going as planned. But then out of the blue, three weeks before her due date, Barnes’ uterus ruptured, endangering her life and creating a profound birth trauma for Casey. Due to severe oxygen deprivation, Casey was born with HIE – Hypoxic Ischemic Encephalopathy, along with cerebral palsy and lack of basic reflexes including the ability to swallow, gag and blink.
Although doctors predicted Casey wouldn’t last the night, she was a fighter. “We felt that if she were fighting, we’d be right there fighting with her,” recalled her mom. Casey lived almost 10 years, passing away in March 2016. The effect her birth and her life had on Barnes and her husband Tim is impossible to overstate. “I had tremendous guilt in the beginning, even though there was nothing I could have done differently to change the outcome for Casey,” said Barnes, 40, a resident of Austin, Texas. “Every parent of a special needs child goes through a lot of anger, a lot of fear and confusion. For the first two years we were in survival mode, just trying to keep her alive and happy.”
Trained in IT, Barnes and her husband turned to the Internet to find things they needed that didn’t exist at the time. They created forms for consumer reviews of medical products and compiled a home modifications catalog geared to the needs of complex kids and their families. “There were plenty of reviews for TVs, but none for suction machines. There were lots of holes that we were constantly trying to fill.”
What had started as a pregnancy blog to share information with out of town family members evolved into a place where loved ones and friends could get updated on Casey’s life and condition. “We just couldn’t tell the same sad story over and over again. It was critical for us to stay positive,” Marty said. Because of its specificity to HIE, other parents came across the Barnes’ story, and the circle widened.
Barnes maintained http://caseyscircle.org/ throughout Casey’s life, initially as a way to help other families facing complex special needs and after Casey’s death, as her ongoing legacy. The organization is now a 501(c)3 non-profit, with Barnes continuing to dedicate her time to helping other families make childhood memories with their complex needs kids.
“We wanted to take Casey to the movies, to dance class, to girl scouts – and working with her palliative team, we learned how to modify the world and our environment so she could have fun and be a kid. Now we want to help other complex kids make those same wonderful memories we have,” Marty shared. Educating people to think of children with special needs as kids first, as people, is a big part of her mission.
In 2012 Marty hosted the first holiday party for 20 special needs children. In 2016 more than 150 children attended. This year, it will take two parties to share all that love and joy. Barnes also organizes Tuesday Talks, which are monthly parent training meetings to address the wide range of issues facing special needs families.
Although it seems that Barnes and her husband might need to take some recovery time after losing their daughter, she says that isn’t the case. “We feel like we have a lot of big ideas,” she said. “Every day we want to stay focused on making Casey proud and making life better for other children like her.”