For Ethan Parsley, complaining was never an option.
It was like he didn’t know how to gripe. Instead, he took everything as it came, relearning how to walk and talk after he suffered a stroke at age 11, enduring therapy whenever needed and relishing in the little things like high school dances, computer games and hanging out with friends.
When his condition worsened in 2009 and he knew he wouldn’t be able to complete the Race for Wishes that had become a tradition for his family, he decided to spend his graduation money on a three-wheeled bike and navigated the course alongside the runners with a smile.
“Most people complain so much that they don’t even notice they do it, and he just didn’t,” his mom Wende Parsley said. “I never heard him complain,” echoed his dad Chris Parsley, pausing before he finished his sentence. “And I complain a lot.”
The two talked one recent evening while Ethan’s younger brothers wandered in and out of the living room and said the Nov. 20 Race for Wishes this year means more for their family. Along with more than 50 friends and relatives, they’re walking in honor of the one they learned so much from.
Ethan passed away March 20 at the age of 19.
“He inspired a lot of people,” Wende Parsley said.
“Just to be better, I think,” Chris Parsley added.
When he was 11, Ethan’s hands suddenly started to shake. A slight tremor in his legs followed soon after, and despite test after test, doctors couldn’t tell his family what the cause was. They finally decided to perform an MRI, and eight months into the Parsley’s ordeal, Ethan was given a diagnosis — he had an arterial venus malformation.
Chris and Wende said they’d never heard of the condition and stared ahead when they heard the news waiting for an explanation.
The descriptions often were steeped in medical terminology or vague to the point they didn’t know what they were dealing with. Describing it now with the ease one rattles off his or her address, the Parsleys said the condition happens when there’s an abnormal connection between the arteries and veins that looks similar to a ball of yarn. It typically forms before birth, and in Ethan’s case, the lesion was in the center of his brain.
Doctors in Dallas told the Parsleys the condition was inoperable. They said their son might live until he was 20 and advised them to go home, to enjoy their time with him.
Chris and Wende, though, weren’t ready to stop trying that quickly.
They did extensive research, scouring the Web and other resources and eventually found doctors at Stanford University willing to try to remove the lesion.
Ethan went through radiation to try and shrink the area — a process doctors thought might be futile because it was so large, but an effort they wanted to complete just in case. Then he went into surgery.
As he was coming off the anesthetic, he suffered a stroke.
“He couldn’t eat, walk, talk,” Wende Parsley said.
“They didn’t know what to tell us. They didn’t know how much he would recover,” Chris Parsley said.
After more than a month at the Ronald McDonald House, the Parsleys returned to Midland.
Wende quit her job. Chris, having just sold his company, decided they would live off of their savings for as long as possible and committed to staying home, as well.
“God fixed it so we could do that,” Wende Parsley said.
With a scholarship from HealthSouth, they took Ethan to rehab every day.
Wende home-schooled him as he started regaining his abilities.
With each step, doctors and therapists were shocked by how much progress the pre-teen was making, his parents said.
Slowly, things started to return to normal.
Ethan wanted to go back to school, so Wende, a teacher, found Hillcrest School, where they applied, visited and quickly enrolled.
Executive Director of the school Betty Starnes said after Ethan finished his visit, one of her students came up to her and asked when the Parsley kid was coming back. He was the coolest student they’d ever spent a day with, the boy told her.
“Throughout his entire time here, he was always just so fun and so lively,” Starnes said. “He changed all of our lives.”
And while Ethan had his setbacks, his parents said he experienced high school like they had hoped he would.
“He had dates, he went to prom, we camped and traveled,” Wende Parsley said.
In 2007, after working with the Make-a-Wish Foundation of North Texas for several years, he was granted his wish to see the whales during migration, and he was sent along with his parents, brother and grandmother to Hawaii.
The foundation grants wishes to children between the ages of 2 and 18 who are living with a lifethreatening medical condition. Like his parents said was the case on Ethan’s trip, the organization works to provide families a break and give children who’ve often known more about hospitals than play dates the opportunity to just be a kid.
“Most people look forward to their next vacation,” Chris Parsley said. “These kids, a lot of them are taking their last vacation.”
Tina Corbett, the West Texas regional development director at Make-a-Wish, said they’ve granted more than 90 wishes in the area so far this year. The average cost of one wish in 2009 was $7,362, according to the Make-a-Wish Foundation.
Ethan was able to see the whales migrate like he had hoped. He also swam with the dolphins, went to a luau, rode horses and saw the area where “Jurassic Park” was filmed.
“He had a really great time,” Wende Parsley said.
On April 13, 2009, doctors found there was an aneurysm on Ethan’s AVM. He went through an embolism to slow the flow of blood through the legion and hoped the surgery would help prevent it from rupturing.
After graduating from high school in May of that year, Ethan went through intense therapy in Lubbock meant to teach him to live on his own.
He returned to Midland, moved into an apartment with a friend and dreamed of taking over his grandparents’ farm one day.
Three months later, he stopped by to see his parents one evening after mudding with his friends and headed to take a bath before joining the family.
When he hadn’t come out of the bathroom after several minutes, Wende Parsley went to check on him and found he had died.
In retrospect, Chris Parsley said they knew their son had been deteriorating.
They had never wanted doctors to try and pinpoint how long he had. No one really knows how long they have, and for Ethan, they didn’t want it to be any different, Wende Parsley said.
So they treasured the time he had, experiencing more moments of stress than most families but also finding more moments of joy.
“It made us better, I think,” Wende Parsley said. “It made our faith in God stronger.”
After Ethan died, notes of encouragement started pouring in. On a website dedicated to the 19 year old, friends, family members and even strangers posted prayers for the Parsleys and short stories about how Ethan had affected them. He was kind, humorous, loving, faithful and, more than anything, seemed to have a grasp most never find on what the purpose was behind his short stint on earth.
When they run — or walk as the case may be — next weekend, the Parsleys said they’re hoping to help bring a bit of hope to families like theirs.
Because even if it’s only a trip, for kids like their son the wishes typically are much more than that.
“I think compared to most kids, he probably had a better life,” Wende Parsley said. “His outlook was so positive.”
Kathleen Thurber can be reached at email@example.com.