Jun 29, 2015
It's graduation day at the Kadish house, and everyone in the family is ready to pile into two different cars to get to Loveland High School's ceremony at the Cintas Center.
Everyone, that is, except Ethan.
Ethan must stay home with a nurse while the rest of his family watches his 18-year-old brother, Zakary, on his big day.
"It sucks that he can't be there," Zakary says minutes before posing for family photos in his cap and gown. "It would be great if he could be there, but realistically it couldn't happen. It's been a period of just – adapting."
This June 29th marks two years since Ethan Kadish was struck by a bolt of lightning from a clear blue sky while attending a Jewish summer camp near Indianapolis.
And though he continues his recovery from the injury that nearly killed him, Ethan's progress has been far slower than his parents expected in the beginning.
Ethan still can't walk or talk or go to the bathroom on his own. He eats through a feeding tube in his stomach and must be pushed around in a wheelchair.
When he's not in the hospital, his days are filled with therapies and doctor's appointments and being moved from his bedroom to a front room of his Loveland home.
Ethan's world, once so full of possibility, has become small.
All the while, his brother and sister and former classmates continue to grow and change and reach milestones.
Zakary graduated from high school and will leave for college in August. Elyse, 12, will move up to Loveland Middle School in the fall and a few months later will start studying for her bat mitzvah. Ethan's old friends are learning to drive and texting girls and going to dances.
It has left his parents, Scott and Alexia Kadish, striving to celebrate the accomplishments of Zakary and Elyse all the while being draped in a sort of sadness for Ethan.
It reminds Alexia Kadish of the book Tuck Everlasting about a boy forever stuck as a teenager.
"Ethan is like Tuck in that," she said. "Everyone else around him is changing and growing and doing what they should be doing, and yet I still envision him as 12 going on 13. And when we get together with friends who include his group of friends and I see them growing and changing and doing, it's just a stark reminder of what we're still facing."
Not that the Kadishes need any reminders beyond the everyday that is Ethan. He was their outgoing, popular boy who arrived at summer camp in 2013 as a baseball player and a lover of Broadway musicals. He left camp clinging to life.
Scott Kadish estimates Ethan has spent 289 days in the hospital since he was injured.
That's 289 out of 730 days total – or roughly 40 percent of the last two years.
Over the past 12 months alone, Ethan has been admitted to Cincinnati Children's Hospital Medical Center fives times.
He was there in January for abdominal surgery and went home in early February, only to be readmitted four days later. He went home on Valentine's Day.
Ethan was back at Cincinnati Children's in April, the same month Zakary found out he had gotten a big scholarship at Washington University in St. Louis and decided that's where he would go to college this fall.
He was still in the hospital the night of Zakary's senior prom.
Ethan came home in late April, only to be readmitted two days later. He returned home again May 11.
Most recently, Ethan was back in the hospital June 18 and came home June 20 after just 42 hours.
Ethan has recurring problems with his gastrointestinal tract that cause pain in his gut, trouble digesting his liquid nutrition or both. The surgeries have removed obstructions in his bowels. But each operation that Ethan has can create scar tissue in his bowels, which can lead to more problems later.
Scott Kadish has heard that patients like Ethan lose three days of recovery for every day they stay in the hospital.
If that's true, Alexia added: "Ethan needs two and a half years."
That's not to say the Kadishes haven't seen progress over the past year.
"If we look back one year ago, he is truly more present today than he was," Alexia Kadish said.
He recognizes songs and voices and responds to requests such as "open your mouth" or "look at me."
"We're grateful for that," she said. "That's indicative of opportunities for growth."
The Kadishes seized those opportunities during the months that Ethan was home from the hospital and stable, using donations made for Ethan's ongoing medical care.
Scott and Alexia took Ethan to the Carrick Brain Center in Atlanta last summer for special treatments that they hoped would help in his recovery.
Last August, they went to the Rehabilitation Institute of Chicago for more expert recommendations and advice.
Their attention turned to Ethan's back in November after it became apparent to them that his curved, twisted spine was causing pain that was interfering with his recovery.
The Kadishes traveled to Philadelphia in November for three weeks of treatment at the Myofascial Release Treatment Center in hopes that the soft tissue therapy could help relax and stretch his muscles.
"We feel like it made a great initial difference," Alexia Kadish said. "And then, unfortunately, in early January he was hospitalized again for nearly five weeks. So all of the great differences we saw were somewhat ripped away."
That's how it seems to go with Ethan. Hope and progress dashed by setbacks and pain.
His sister, Elyse, talked about what life is like with Ethan the day she left for camp.
It's her third summer to attend URJ Goldman Union Camp Institute, the Reform Jewish summer camp in Zionsville, Ind. Her first was in 2013, the year Ethan was there and got hurt.
"It's kind of sad really because we used to do a lot of things together," said Elyse. "We would just play in the basement together and do things like that. And now we can't really do that anymore."
Elyse said she thought a lot about whether to go back to camp last summer, the year after Ethan was injured. She had made good friends and wanted to return, she said, although she was "cautious."
"I was really paranoid," she said. "Whenever I felt a drop of rain, I was like, 'Oh my God, I need to go inside.'"
The Tuesday morning that Elyse was scheduled to leave, her stuff for camp was piled by the front door hours early.
She rushed around, instructing her mom and dad about how to baby Cincy, the family's West Highland Terrier, and counting down the minutes until it was time to leave.
All the while, home health nurse Caleb Hagan stayed with Ethan in a sun-splashed room at the front of the house where Ethan's therapy table and equipment are kept.
Before they loaded up the car for camp, Alexia and Scott Kadish told Elyse how proud they were of her.
"You have done a really good job of being able to continue your life forward, and it's OK to feel sad that Ethan is not in the same place," Alexia told her. "But that's not going to hold you back from living your life."
A few minutes later, Ethan smiled broadly when his mom cajoled Elyse into posing with him for a picture.
Alexia Kadish rubbed the top of Ethan's head and said goodbye, assuring him that she and his dad would be back in a few hours.
Ethan smiled and groaned a happy sound and then stayed behind while his mom and dad drove his little sister to camp.
It's another sad reality for the Kadishes, having to leave Ethan behind.
Supporters around the world have donated hundreds of thousands of dollars.
They have a whole team of friends – a group of more than 500 people known collectively as "Team Ethan" – who have helped with meals and hospital stays and looking out for Zakary, Elyse and even Cincy when Scott and Alexia have been busy caring for Ethan.
Supporters across the country and around the world have donated hundreds of thousands of dollars toward his medical care. The family's out-of-pocket and uninsured expenses for Ethan's care range from $150,000 to $300,000 annually.
This year the Kadishes decided to re-engage with their extended family, too. Scott, Alexia and Elyse flew to Seattle in March for a niece's bat mitzvah. Zakary left town, too, to go to his scholarship interview in St. Louis, and met the family in Seattle afterwards.
Alexia's mother flew into town to stay with Ethan, who also had his home health nurses to care for him. His primary day-time nurse and three night nurses work different shifts throughout the week, with one of them there between four and eight hours each day.
The trip went well, and Ethan did fine.
The Kadishes' niece, in fact, set up a laptop on a chair in the synagogue so Ethan could watch the ceremony through Skype.
"She could see Ethan the whole time that she was participating in the service," Scott Kadish said. "And he seemed to really respond as well. That was very special."
It was also especially difficult.
For Alexia Kadish, leaving Ethan behind felt like leaving a piece of herself.
Without him, the family is not complete.
But the family can't always wait for him, either.
Zakary will go to college.
Elyse will go to middle school.
"It's a reminder that life is continuing so we either make the train or we don't," Alexia Kadish said. "We choose to continue."
In his own way, Ethan continues, too.
His legs are getting longer. A mustache keeps trying to grow on his upper lip. And more and more, he seems to recognize voices of distant friends and relatives and songs from his past, before the lightning strike.
It's not where he should be a few weeks shy of his 15th birthday.
But it's where he is.
And his family remains confident that there is more recovery to come.
"I feel like we have continuously had to lower the bar over the last two years," Alexia Kadish said.
Not that she and her husband are expecting less from Ethan, she said, but they understand that progress is coming much slower than they had hoped.
All they can do is wait and try and laugh and cry and hope – sometimes all on the same day – and love each of their children for who they were, who they are and who they can become.
To help fund the hundreds of thousands of dollars of ongoing care for Ethan each year that isn't covered by insurance, go to http://jointeamethan.org.
WCPO reporter Lucy May and WCPO photojournalist Emily Maxwell are following the progress of Ethan Kadish as he continues to recover from being struck by lightning on June 29, 2013.
This is their fifth installment.
To read their earlier stories go to www.wcpo.com/ethankadish