Even during tragedy there is light
If life was fair, Carson Robbins would be finishing up his freshman year at the University of Cincinnati. He’d be living with two of his best friends and getting ready to celebrate his 19th birthday. He’d be going to parties, having fun with his friends, and enjoying the type of freedom kids away from home for the first time enjoy. However, as we all know, life is rarely fair.
It has been almost a year since Carson Robbins died following a brief but debilitating seizure condition. His death came last April, just a week before his 18th birthday. The Tippecanoe High School senior was a scholar athlete, a football player, and a wrestler. He was also a brother, a son, and a friend.
“He was funny. He was really funny. He wanted to get you laughing. And I think that is one of the things that has helped is just listening to everyone’s stories and funny memories that he’s left them with that I didn’t even realize,” said Carson’s mother Carrie Robbins.
“He really did draw a lot of people together and that’s what I try to remember. ”
“He loved life so big. He was a loyal friend and brother; he was mischievous and fun. He certainly wasn’t perfect, but he was perfectly ours and we miss him so much, every single day,” Carrie said.
His friends say he was the definition of fun; the life of the party and a friend to everyone.
“Carson was always out to help everybody. There was not a stranger to Carson. Even after a loss or a hard day, he had a smile on his face and always knew how to make somebody’s day better,” Gordon Haas said.
Gordon Haas was one of Carson’s best friends. They were teammates on the football field and more like brothers off it.
Haas says some of his favorite memories include teaching Carson to fish, having bonfires, and singing karaoke. But his absolute favorite memory was when he had to fire him from his landscaping business.
“We were doing a job and it had to be done that night and he said he needed to run to the store for his mom. It had been like an hour and a half. I finally looked at his location and he’s at Ducky’s, eating ice cream with his girlfriend,” laughed Haas. “He was calling me and saying can we still be friends? I said yes, you just can’t work for me.”
It’s one of Carrie’s favorite stories, too.
“There’s nothing like being fired by your best friend because you are a crappy worker,” Carrie said laughing.
Both Gordon and Carrie say despite that business disagreement, their friendship never faltered. She says Gordon is a part of the family and he still goes on family vacations with them.
“Carson’s parents especially and brothers are like my second family. They were at every game I had and every accomplishment, they were there for me. So even though he’s not there they are still my family,” Haas said.
Carson had been a healthy teenager leading up to his death. And certainly nothing could have prepared his family for what was to come last February. Doctors would later diagnose him with something called NORSE, which stands for new-onset refractory status epilepticus. According to the Epilepsy Foundation, it is a rare condition in which patients suddenly experience continuous seizures. His mother says it came on without warning. She would learn after his death that it was more than likely triggered by an everyday virus.
“It was some sort of virus that typically he could have fought off but for whatever reason he couldn’t. There’s no reason why it happened. It was just some virus that attacked and wouldn’t stop attacking,” Carrie said.
She says Carson had been a little under the weather the week before his first seizure. He had a headache and sinus pressure but nothing too alarming. She gave him medicine and at the time gave it little thought.
“He didn’t feel good, but it didn’t keep him down either. He was at the basketball games. We had senior night for wrestling. I can look back in pictures from senior night and I can see now in his eyes that he didn’t feel good but again it was nothing,” Carrie said.
Then on Friday, February 10, 2023, Carson began texting her from school.
“Carson had texted me and none of the text messages made sense. He was already at school, and I was getting ready to go to work. And I got all these gibberish text messages. I would respond a couple of times and when he would respond back it would be gibberish. And so, then I was really starting to freak out.”
She called the school nurse to check on him but before the nurse could call her back his friends were texting her that Carson was acting weird.
Carrie picked up her son from school and took him to the emergency room at Dayton Children’s Hospital. Doctors ran all sorts of tests and couldn’t find anything wrong. After several hours they were getting ready to discharge him when he had his first seizure.
She had no idea that would be the last night she would ever speak to her son.
“Early that Saturday morning was when he had his second seizure and then they couldn’t get them to stop and that’s when they put him in a medically induced coma, and he never woke up. The last time I ever talked to him was February the 10th,” Robbins said as she choked back tears.
Carson died on April 14, 2023, just over two months after being hospitalized.
NORSE is a condition that doctors don’t fully understand. According to a publication from the Yale School of Medicine, it tends to affect healthy young adults and children with no history of epilepsy. The National Institutes of Health says the mortality rate for NORSE is 16-27% and those who do survive often suffer brain damage.
“Some people can keep it under control. In Carson’s particular situation, they were never able to get the seizures to stop. So, when he started seizing in February from the time he passed in April, he never really stopped having seizures,” Carrie said.
Carrie still wonders if she could have done more to help him. The logical side of her knows there was nothing else she could have done but, as a mother, the “what if” weighs on her.
“I struggle with could I have done more? I know there was nothing we could have done different, but I wish there was,” Carrie said.
She also worries about the toll Carson’s death will have on her other two sons. Carson was the middle child. His older brother, Mason, is now 21 and his younger brother, Jackson, is still in high school. Jackson also plays football for the Tippecanoe Red Devils and wears the number 8 to honor his brother. It was the same number Carson wore and has become synonymous with Carson’s fight.
“He wanted to be number 8, he wore his brother’s headband every football game. He made those choices to be close to Carson. Those are things he wanted to do to honor Carson,” Carrie said.
Carrie says while the last year has been rough her two sons are taking Carson’s death miraculously well.
“We will never be the same again. We are just, as a family, finding a way to move forward in many ways that would make Carson smile,” Carrie said. “Carson would expect us to pick up the pieces and keep doing what we need to do. They talk about him regularly. We’re just constantly still remembering when Carson did this. If Carson was here right now, he would do this. They talk about him in the present. They share past stories.”
Carrie says the biggest takeaway is that even during tragedy there are bright spots. She credits friends and the Tipp City community for getting her through the past year.
“It just makes my heart explode. There’s so much love for him. We’ve really experienced the good of our community,” Carrie said. “We’ve really been touched by a lot of good. I’m very grateful for that.”
She says the outpouring of support and love hasn’t stopped in the months following Carson’s death.
“They say you lose your loved one twice. When you lose them and when everyone forgets about them and forgets to say their name. And I can say we are so blessed that people talk to us about him all the time and this community and you writing this just keeps his light alive and that just really means a lot,” Carrie said.
One bright spot for Carrie is keeping in touch with Carson’s friends. They text her life updates and memories of Carson. And while for many parents that would be difficult, Carrie says she loves hearing from them. Two of Carson’s best friends are now at the University of Cincinnati, where Carson wanted to go. In fact, the three had planned to live together.
“They sent me pictures of move-in day and just said we really miss Carson, he should be here with us playing flag football,” Carrie said. “They’ve done really good about keeping in touch with me, which I really do appreciate. Just having them reach out makes me feel a little closer to him.”
Haas says it has been tough but he’s trying to work through the pain.
“I’ve accepted it a little bit more but it’s not easy. Every day gets a little bit better,” Haas said.
Carson’s legacy lives on in another way. He was an organ donor. His heart is now beating in a stranger’s chest. Carrie says she doesn’t know the recipient’s name but says he’s a teacher from the East Coast. She knows he was in his 30s and was doing well shortly after the transplant.
One day she would like to meet him.
“If that opportunity ever came up, I’d love to meet the person who received a part of him,” Carrie said.
After Carson’s death, Carrie went back to work as a teacher’s aide at Nevin Coppick Elementary School in Tipp City. Even a year later, many of her students ask about Carson.
“Today I had a first grader ask me about him,” said Carrie. “He said, ‘didn’t Carson give a heart to someone?’ And this little first grader said, ‘it is like he sacrificed himself for another person.’”
Becky Gulden is the news director at Dayton 24/7 Now and a regular contributor to the Tippecanoe Gazette.