Updated: December 9, 2013 10:47AM
Michael Kasper asked his mother a question she never wanted him to ask.
“Mom, am I dying?” the sickly teenager asked on his final trek to the hospital.
“No, I’m doing everything in my power to keep you alive,” she replied.
A second later, Michael asked his mother to stop the car again.
“You know, Mom, I don’t want to die before you,” he told her.
Rose Garneski did everything in her power to not lose her composure. She knew her son was dying. She’s known for almost a year, if not for all of his struggling years of life. Still, she reassured him once again.
Within hours, Michael would be dead, on his 17th birthday of all days, Oct. 28.
“I knew when Michael left home during his birthday party that he wasn’t coming back,” Garneski told me, staring down at her kitchen table and wiping away tears. “But for me to say those words to him, I just couldn’t do it.”
But she would end up doing it, just before he died, breaking a promise to herself and breaking her heart in the process.
“That’s something I’ll always have to live with,” she told me, her raspy voice cracking from emotion.
Michael was born with a heart defect and underwent the first of many surgeries at 2 months old. Early on, he was dubbed “the miracle baby” by doctors because he outlived their dire expectations.
His first life-threatening crisis came at just 2 months old, when he turned blue and raised a red flag for his startled parents. Other heart-related crises followed, eventually hurting his tender lungs.
“His lungs kept taking hit after hit after hit,” Garneski explained when I met with her and Michael’s father, Joe Kasper, at his Portage home.
Michael’s condition led to pulmonary hypertension, a chronic and incurable disease that can lead to right-heart failure. It can also mercilessly drain its victims one breath at a time, literally squeezing the life from them.
Michael would have needed a double lung transplant as well as a heart transplant to survive, but the older he got the longer the odds to receive such a miraculous gift. Plus, his frail body was increasingly too weak to undergo the procedure and a multi-year wait.
However, Michael lived life as best he could while not being able to play outside as long as his friends. And he only complained about his disease to his parents, rarely to his friends or classmates who never knew about his condition.
“He was always happy, always a smile on his face, always love in his heart,” his father said proudly.
A year ago, doctors told Michael’s parents that he had less than a year to live. Should they have told him this sad truth so he could live life to the fullest during his remaining days? Or should they keep it to themselves so he could life live as he had always done?
“We never told Michael,” Kasper said. “He was already living to the fullest.”
“We always told him he’s going to get better,” Garneski added. “That’s what a parent does, right?”
Yes, hindsight can be 20/20, but it also can be a crystal-clear regret that never fades away. Kasper and Garneski have since been ambushed with “what ifs,” “maybes,” and “could have, should have, would haves.”
“What if Michael had surgery earlier in life?” Kasper said.
“What if we told Michael the truth?” Garneski added.
They went from feeding their son with a baby bottle to feeding him air from an oxygen bottle until his last hours. Along the way they had to learn all the medical jargon, doctors’ lingo and heart-related vocabulary, similar to other parents of sickly children.
Michael attended only three days of school this year, his sophomore year at Portage High School. His parents finally went to the school last week to empty his locker.
Since his death, they’ve experienced a barrage of emotions: Grief, anger, sadness, confusion and warm memories of a boy whose battle cry was YOLO — You Only Live Once.
I noticed his YOLO mantra at his wake, on Halloween night, where hundreds of guests paid their respects.
“He did everything he wanted to do,” one of the mourners told me.
“He loved to ride his four-wheeler,” said another, pointing out Michael’s beloved four-wheeler parked outside the funeral home.
Inside, dozens of photos flanked his open casket, including a handwritten note from Michael to his father: “Dear dad, thanks for being there for me. Love, Michael.”
Since then, both parents are looking for a new purpose in their lives, a new cause in their son’s name.
Garneski is pushing for mandatory X-ray screening for babies with possible heart problems. Kasper is raising awareness for organ donation and for pulmonary hypertension, which rendered his son too tired to even play video games near the end.
At his 17th birthday party, Michael struggled to breathe and had to leave early.
At the hospital, with his vital signs dropping, he asked again: “Mom, am I dying?”
While holding his hand under the blanket, Garneski finally told her the truth, “Yes, Michael, but there will be no more suffering.”
Michael replied, “I love you mom… I think I’m just tired of being so tired.”
His father told him, “Just close your eyes, son. It’s time to go.”
A few minutes later, Michael died.
Garneski has been sadly, and unfairly, torturing herself ever since by second guessing her decisions during his last year and his last minutes.
“Did I make Michael go earlier than he would have?” Garneski asked, bursting into sobs. “I had him for 17 flippin’ years but if I could have him for just one more day, one more hour, one more hug.”
“He had such a big and giving heart but that’s what ended up killing him,” Kasper said.
Michael’s giving but giving-out heart prompted him to donate his eyes after his death.
Today, they are still viewing the world but from someone else’s face. His parents hope that those eyes are still seeing the beauty in everything and, someday, they hope to meet the person who now has a part of their son. Maybe the best part — his outlook on life.
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