Wrestling with reality
Tom Musick
Contributing writer
Editor's note: This is the first of a three part series examining the life of a first-grader with special medical needs in Champaign schools.
Eight-year-old Aarron Cozad steadies himself on his family's small brown dining table in Champaign. The professional wrestling fanatic clutches his ragged Elmo doll as he slowly bends his knees and eyes the couch shoved against the wall several feet away.
With determination, he launches his 3-foot-6, 35-pound body across the room. He crashes knees-first into the couch, squishing Elmo as he extends his arms to avoid a face plant.
Sensing that Elmo is on the verge of defeat, Aarron springs off of the couch and readies himself for a knockout maneuver — the daunting "pile-driver." Aarron squeezes Elmo's head between his legs. With a leap, he kicks his legs in front of him, lands on his butt and smashes Elmo's head against the brown wood panel floor.
Aarron is accustomed to fighting. He has fought all his life to survive.
Doctors have operated on Aarron 35 times. They removed his left kidney at age 3, and his right one functions at 35 percent.
Adding to the problem, Aarron's urethral valves were turned backward at birth. Surgeons repaired them; but urinating is difficult, and he can't fully empty his bladder.
He requires a catheter to be inserted in him five times a day to drain his urine — including twice at school. His friends and family worry about his chances for a long life, but they are comforted by the fact that he has made it this far.
"He's everything to us," says his mother Teresa, who ignored doctors' advice to have an abortion after Aarron's medical problems were detected during pregnancy. Doctors gave Aarron a 5 percent chance to survive through his first night.
At his family's small home on Park Street in North Champaign, he bubbles with activity, racing around the house and climbing anything in sight.
"He needs that release of energy," says Bob Hasty, Dr. Howard's school student services coordinator. "He's all boy."
Hasty catheterized Aarron once a day last year and twice a day this year. He often allows Aarron to practice wrestling moves on the soft mat in the room where he works.
Sometimes Aarron's energy can turn into recklessness. Last fall, he suffered third-degree burns on his legs after he pulled over a pot containing hot water while playing in the kitchen.
Dr. Churphena Reid, a pediatric urologist who Aarron visits several times a year in Peoria, says that one in 30,000 boys is born with posterior urethral valves. Aarron's hyperactive behavior — on the playground, in the gymnasium or at home — isn't dangerous despite his medical problems, she adds.
"We want him to lead as normal of a life as possible," she says.
Struggling for normalcy
Beyond catheters, medication and doctor's appointments, Aarron's days resemble those of most children his age. Teresa wakes him up at 6:30 a.m., fixes breakfast and prods him to get ready for school.
After draining Aarron's bladder with a catheter, she drops him off at Dr. Howard and drops his sister Erica, 15, off at Edison Middle School before going to work at Wal-Mart in Champaign.
After school, a next-door neighbor picks up Aarron. Erica watches him until their mother returns after 5 p.m. Erica catheterizes him at 4:10 every afternoon, and Aarron receives the same treatment from a parent at 8:10. Bedtime is 9.
Depending on the amount of urine in Aarron's bladder, catheterization takes between five and 10 minutes. A soft tube is lubricated and inserted through a small hole about three inches above Aarron's navel. The tube runs through his urethra and into his bladder, draining the urine into a biohazard bag.
"Sometimes he does good, sometimes it's painful," Teresa says.
Erica, who won't give shots, calls her brother "my little tiger."
"He's a little cutie," she says, while Aarron protests. "If he wasn't here, I don't know what I'd do."
"He changes a lot of people," Aarron's father Tim says.
Teresa trusts Hasty to catheterize Aarron at 9:45 a.m. and 1 p.m. every school day. Lakisha Brown, who temporarily replaced Hasty for two months while he went on hiatus, was also trained to use a catheter.
A family's journey
Teresa is grateful to Hasty and Brown for the care that they've provided. Her interactions with public aid officials have not been as warm, she says, though Aarron's expensive catheter supplies always have been funded.
"I go through every month fighting public aid on these syringes," Teresa says. "It ain't like (it) is new."
She would not be able to afford the catheter supplies, which cost about $200 a month, if public aid ever failed her. Expensive surgeries — like a $50,000 kidney removal — are also paid for by public aid.
Still, money remains tight for the Cozad family.
"It's hard for us at Christmas," Teresa says. "We're not upper-class people. We make enough to pay our bills and get by."
Her husband Tim works at the Super Wal-Mart in Savoy, and he says the company helps provide gifts during the holidays.
Despite the physical and economic hardships, Aarron is undeterred. His enthusiasm helps his parents cope with the stress of caring for and worrying about a sick child.
With a penchant for hyperactivity, it's no surprise that Aarron's favorite celebrities embody speed and strength. He met his favorite wrestler, The Rock, at Assembly Hall last winter. Aarron gleams as he displays a tattered photo that shows the two together.
"I was the only one who met him," Aarron says. "Not my mom, not my dad, not anyone."
One of Teresa's co-workers arranged the meeting after winning a radio contest on WIXY-FM. Teresa smiles while she describes all the hearts Aarron has stolen among her co-workers and friends.
"There are people at work, who…" Teresa says, struggling to find the words. "Aarron is it."
Talking about his hero is too much. Aarron races to his room to find his portable CD player and comes back blasting the rock music that professional wrestlers enter the ring to. The headphones engulf his ears and mat forward his short brown hair.
Doctor visits to Peoria and St. Louis have forced Aarron to miss significant amounts of class. He had to attend kindergarten twice, but is adjusting well to first grade, says Sarah Iehl, his teacher.
"He's very energetic," says Iehl. "He plays with everyone."
Principal Christine Brinkley lauds Aarron's zeal for living.
"This little guy is such a champ," Brinkley says. "Sometimes I sit in private and think about all the hardships he must face. Some days, you know he just doesn't feel good."
An uncertain future
But Aarron is able to conceal his illness from classmates, who know only that he leaves class twice a day with Hasty.
"He does not give the appearance to kids that, 'I'm so sick,'" Brinkley says. "You never hear him complain."
Dr. Reid says that while Aarron realizes his body has a problem, he does not understand the seriousness of his condition.
"They really don't understand the gravity of it until they go through puberty," Reid says.
As an infant, Aarron reaching puberty seemed impossible to those who loved him.
During one of Teresa's sonograms, doctors discovered problems with Aarron's kidneys and urethral valves.
"It was upsetting," Teresa says. "I cried and I cried. All they would say was he wasn't gonna make it."
Concerned for his wife and unborn child, Tim drove Teresa from Champaign to Peoria and back often during her pregnancy. The Cozads say they were determined to have Aarron and hope that he would have the strength to survive. Their wish came sooner than expected — doctors decided to deliver Aarron two months premature.
"They called at 2 p.m. and said to be in Peoria by 4:30," Teresa says. "We got there at 4:35. He was born at 5:07."
Tim and his father accompanied Teresa to Peoria but expected only more tests. As they sat in the waiting room, doctors and nurses rushed to and from Teresa's room. Teresa laughs now as she thinks of her husband and father-in-law slowly realizing what was happening.
Aarron, born Dec. 14, 1994, weighed four pounds after doctors drained one pound and four ounces of excess fluid. Teresa says doctors found "27 things wrong with him" at birth, including seizure disorders and respiratory problems. He spent two months in an incubator in the intensive care unit of St. Francis Hospital in Peoria.
"He's died three times," Teresa says. Aarron, listening nearby, perks up.
"I have?" he asks. His mom explains how doctors resuscitated him each time.
Aarron's condition was so precarious that doctors turned to an experimental strategy to help him survive, Tim says. They gave Aarron doses of nitrous oxide gas to help build and strengthen his lungs.
The treatment had been tried on two children nationwide before, Tim says. Only one survived.
"We had no option," Tim says.
Reid also reconstructed Aarron's bladder to enlarge it. The surgery, combined with catheterizations, helped prevent urine from backing into his weakened kidney.
"(His bladder) was the size of half a lime and very thick-walled," says Reid. "It couldn't stretch like a balloon," as bladders normally operate.
Until he was about 3 years old, Aarron went to Peoria two or three times every month for medical visits. While he goes only once every six months now, the gas and hotel costs add to the financial burden on the Cozads.
"It's a lot of miles and it hits you in the wallet pretty good," says Tim.
Doctor visits have cost Aarron valuable class time, but he is catching up quickly. His academic and social progress encourages his parents, as well as faculty at Dr. Howard.
"He wants to please a lot," Hasty says. "He likes to hug a lot."
Significant obstacles — including a kidney transplant — block Aarron's path to a long-term recovery. Reid says his age, small size and medical background will make finding a compatible donor for Aarron difficult.
"He's just got so much stacked against him right now," Hasty says.
Even if a match is found, problems will continue. Reid says standard medicine given to keep him from rejecting the new kidney could stunt his growth.
"He's going to have problems all of his life," Reid says. "The long-term goal is that he grows through adulthood. He should be able to grow up and get married."
Aarron's family focuses only on the present.
"We don't plan ahead," Teresa says. "We can't. Because we don't know what's going to happen to him from one day to the next."
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