By Susan Harman
Iowa City Press-Citizen
(Reprinted with permission of the Iowa City Press Citizen)
Michele Weiss anxiously watched her two sons play basketball on the floor of Carver-Hawkeye Arena.
"Aaron, you have to rebound for him," she said to the older boy.
"Yeah, yeah," Aaron, 11, said, barely turning from his two-man game with his 7-year-old brother, Jesse.
Weiss wasn't frantic. She passed frantic long ago on this road. But she was vigilant. Jesse was back in Iowa City to see how he was progressing from surgery for a condition called basilar invagination. As Weiss explained it, essentially the top two vertebrae in the spine compressed the brain stem. His symptoms were subtle: headaches; his hand went to sleep; he had trouble picking up his foot when he walked.
Today, Jesse was dribbling, with either hand, defending and shooting baskets with Aaron. He was careening around like 7-year-old boys do despite wearing a neck brace to stabilize his neck and head. Weiss fretted because Jesse was showing symptoms of problems again and there has been too much movement since the removal of a halo brace a couple months ago.
The family traveled from their home in Glen Rock, N.J., a suburb of New York City, to see Jesse's surgeon, Arnold Menezes, M.D., UI Hospitals and Clinics neurosurgeon and vice chairman of neurosurgery at the University of Iowa Roy J. and Lucille A. Carver College of Medicine, one of the few experts in the treatment of this rare condition.
This is the fourth trip to University of Iowa Hospitals an Clinics since May 2005 for Jesse and Weiss. Before Jesse's diagnosis and treatment, the family had no connection to Iowa. Weiss and her husband, Rob, are from New York and were educated in the East.
Yet somewhere along the road, Iowa came to mean more to the family than a distant place of flat farm fields and hospital rooms. That transformation had a lot to do with the occupants of Carver Arena next door to their temporary residence in the Ronald McDonald House.
Jesse's operation was in July. Bone from his rib was fused to the back of his skull and the top three vertebrae were fused together to form one functional unit. If it sounds scary, it should.
Following successful surgery, he was placed in a halo brace that made him look like a little spaceman. He and Weiss stayed for at least six weeks post-operation to watch for complications. Aaron was at camp, and Rob Weiss was working.
Formerly active and athletically inclined, Jesse wasn't permitted to move around much, and he couldn't spend time outside for fear of getting overheated. He and his mom had no car with which to get around and were faced with weeks of boredom, anxiety and stress. It was a perfect prescription for climbing the walls.
Instead they went over the wall.
"Aaron wasn't here, but both the boys are huge sports fans," Michele Weiss said. "This is what our odyssey was every day. We'd walk down across the street to Carver."
They were quite a sight alone in the seats.
"He and his mom came in and walked downstairs one day when I was out here shooting," said Iowa senior basketball player Justin Wieck. "He had this big thing on his neck, so he couldn't move his neck either way. They sat there for a while.
"When you see a kid like that, I just kind of went over there to talk to him and asked how it was going. They kind of took to me. We probably talked half an hour, 45 minutes. You could tell they were big sports fans, so I took him back and showed him the locker room. You could tell he was excited to be in here and have somebody talking to him."
Jesse was thrilled. Michele Weiss was grateful. The Hawks were hooked.
The two wandered up to the basketball office, and Iowa coach Steve Alford talked to them and let them know they were welcome at practices. At the team's first night practice, program administrator Jerry Strom gave Jesse an Iowa basketball book and told him to take notes, which Jesse did and handed them in. Assistant video director Jerry Palmer took them to see the football offices and meet some of the coaches and players.
The arena became a safe haven. The players and coaches adopted Jesse. He belonged.
"The expectation of inclusion is empowering," Weiss said of her son's experience. "They are kids still. They could be my sons. The guys have been amazing."
It wasn't just the men's basketball team. It was volleyball and women's basketball, too.
"We would take the bus and go to the mall at 11 because we had to get back for volleyball practice," Weiss said. "Our schedule revolved around their schedule. It really sustained us because we had nothing."
They attended every practice, and the players came to expect the two to be there.
"It was an automatic bonding," UI volleyball coach Cindy Fredrick said. "That's what a lot of people miss when they talk about student-athletes. These kids have a tremendous amount of compassion."
When the volleyball team ended its practices, the players huddled, turned and shouted: "Hello, Jesse." Fredrick right away understood Weiss's dilemma of being in Iowa for weeks while her other child was back home. The volleyball team chipped in for T-shirts for Aaron so he would feel included.
"It maintained my sanity," Weiss said. "Without them I don't know how we would have made it. The teams helped maintain some sense of normalcy in what was a chaotic, overwhelming situation."
Fredrick said it worked both ways.
"I think it's really been nice for us," she said. "Anytime you look at somebody that far away from home and what they're going through, your natural compassion says, 'You know, they could really use somebody to be around, to welcome them.' They are even going to my son's game (last Friday). You feel like they are distant family."
Alford always made the team available for them. When Jesse had an unscheduled trip back to Iowa City in October, Weiss said "they took care of him emotionally."
Jesse told the story of being in line for pizza at the mall and having someone tap him on the shoulder. It was Alford.
"He said, 'It's a 3:30 practice; don't be late,'" Jesse said.
Practice had begun as they tromped down the stairs at the arena.
"Out of the corner of his eye he sees Jesse," Weiss said. "He turns around and says, 'You're late for practice. I said practice is at 3:30.'"
Alford then held up a bag of Hawkeye apparel and said he was glad they finally made it so he didn't have to lug it all the way across the parking lot. You can bet Jesse grinned.
Aaron dubbed his brother "Herky in the halo." The family drove to Iowa's game at Penn State on Jan. 14, stayed at the team's hotel and, after calling Wieck for a chat, went out to dinner with the team. Palmer even got the squeamish Aaron to try calamari. They sat behind the bench for the game.
"We became huge Hawkeyes," Weiss said. "I've never seen a college team. I mean, we live on the East Coast. It's all NBA. My husband and I and the boys are mesmerized because we had a rooting interest. There's a relationship. They say, 'There's Adam, and there's Greg.'
"Jesse's ready to relocate."
Weiss said she wouldn't wish Jesse's medical condition on anyone. But she says the whole Iowa experience has changed her and her family. Last fall, Aaron and Jesse, still in his halo, had a car wash and raised $300 for the Ronald McDonald House. The moral imperative to be proactive in helping others less fortunate is not so abstract anymore.
Jesse isn't out of the woods with his medical condition. Iowa's student-athletes eventually will graduate and move on to their own lives. But for a moment, their lives intersected here and made an impression.
"He doesn't actively talk about any of the discomfort at all," Weiss said. "What's interesting are his memories of meeting everyone, being taken in, the friends he made here, and not the surgery."
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