Ian Jerome didn’t choose his disability. The disability chose him.
But Ian didn’t let Duchenne muscular dystrophy define his existence. Wise beyond his years, Ian’s strong will, constant thirst for knowledge and positive approach to life left a lasting impression on most everyone he met.
“He refused to accept his fate as a disability,” said Waterloo School Superintendent Jim Helton, who first came to know Ian as a seventh grader when he was Waterloo Junior High School principal. “He argued, ‘I have a different-ability.’ It was that ‘different’ that I loved.”
A 2008 graduate of Waterloo High School, avid St. Louis Cardinals baseball fan, former Republic-Times columnist, music lover and enthusiastic learner, Ian died last Wednesday at the age of 23.
“Learning to live in this world involves falling down often. In order to fully appreciate life, you must know what it is to hit bottom,” he wrote in a July 2008 column for this paper. “Life often throws things at us that we can’t understand. For some reason, I still believe that everything happens for a reason.”
A large gathering of family, friends, former teachers and others whose lives were touched by Ian’s presence gathered Monday at St. Paul United Church of Christ in Waterloo to pay their final respects during a fitting baseball-themed celebration of life — on the Cardinals’ opening day of the new season.
Attendees wore Cardinal red, as Ian would have wanted, and “Take Me Out to the Ballgame” was played. So was the song “Stairway to Heaven” from his favorite rock band, Led Zeppelin. Typical stadium food was served following the service — hot dogs, nachos and popcorn.
“It was really nice,” said Gail Lambert, who served as Ian’s caregiver the past three years. “There were a few tears, but mostly it was a joyous occasion. That’s the way he wanted it.”
Lambert’s husband even made a special urn for Ian’s cremains to be stored — bearing the Cardinals logo, of course.
Duchenne muscular dystrophy is a recessive form of muscular dystrophy that affects around one in 3,600 boys and results in muscle degeneration and eventual death. The average life expectancy for patients afflicted with DMD is around 25.
The son of Michael and Angela Jerome, Ian was confined to a wheelchair most of his life. His motor skills deteriorated over the years to the point of making even the most basic of life’s tasks too difficult to perform.
“It happened so quickly. It just threw everybody off,” Lambert said of his death, adding Ian recently attended classes at Southwestern Illinois College in Red Bud until declining health forced him to discontinue.
Michael and Angela’s second son, Jeremy, was also diagnosed with DMD. Lambert said Jeremy, now 16, “is hanging in there pretty well” despite losing his older brother and hero.
Ian’s sister, Rebecca, works at Oak Hill Care Center in Waterloo.
In the days since Ian’s passing, many who knew the young man have offered kind words of reflection.
“In my 15 years of working with high school students, I’ve never met any other student who had such a wonderful thirst for knowledge the way Ian did,” school social worker Jean Hentis said. “His sense of humor and unique sarcasm were what I liked best.”
Waterloo School District Wellness Coordinator Kelly Lerch got to know Ian very well through his high school years.
“No matter what his limitations were, Ian kept going,” she said. “When he had a friend, it was a friend for life. When he touched a life, it was forever changed.”
Jonathan Naber, who attended WHS with Ian, graduating one year earlier, posted on Facebook that Ian “inspired me as the most resilient, courageous, and kind-hearted person I have ever met. You were a great lab partner, scholar bowl captain, friend, and light to everyone who had the pleasure of meeting you.”
As Ian would write in that same July 2008 column referenced earlier: “Life is a roller coaster and we are merely riding once. So make the best of the time you have, and always remember when life deals you a crappy hand, play it until the end.
“And that is the way I see it.”