Content note: This story discusses the sudden death of a child.
For anyone who has not endured the death of a child, it’s impossible to imagine how deeply affecting the experience is.
JR explains that he was at work in a meeting, and had just told colleagues that he hadn’t taken a continuous week off work in over eight years.
Then he got a phone call from his wife, Jessica Brandes.
Life shifts so quickly
The couple had an agreement that they’d never ignore each other’s calls, so JR answered and headed out of the conference room to take the call more privately.
“I was still walking through the door when I answered with ‘Hey, what’s up?’,” JR wrote in a LinkedIn-published piece about his eight-year-old son’s sudden death.
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Wiley and his twin Oliver were the couple’s only children.
“Her reply was icy and immediate: ‘JR, Wiley is dead.”
“’What?’ I responded incredulously.”
“’Wiley has died.’ she reiterated.”
“’What?! No.’ I yelled out, ‘No!'”
“’I’m so sorry, I have to call 911.’”
A completely unexpected event
In the time that it took JR to get from work to home, emergency services vehicles had swarmed the couple’s home. JR was prevented from entering the house, which had been declared a potential crime scene. (This is apparently standard procedure when a child dies suddenly.)
He had to wait over two hours before he was finally allowed to peer into Wiley’s bedroom from outside, through an adjacent window.
Later, JR and Jessica were allowed into Wiley’s room together, where they spent 30 minutes with their little boy, before he was taken away.
In his LinkedIn essay, JR shared more about the couple’s beautiful son, the circumstances around his death and what Wiley had hoped for and achieved in his life.
The grieving dad also explained that Wiley had shown no signs of being unwell the night before and that he’d rushed off to work the morning Wiley was found to have passed away, without having time to check in on him.
Jessica found that Wiley had died when she realised he seemed to be sleeping very late and went into his room to see if he was okay.
The medical examiner determined that Wiley had in fact died shortly after he went to sleep the night before.
Sudden Unexplained Death of Epilepsy
A year earlier Wiley been diagnosed with a typically mild form of epilepsy called Benign Rolandic Epilepsy. It’s most common in boys aged between 8 and 13.
The pair were told not to worry and that epilepsy usually resolved itself. Except in Wiley’s case, it didn’t. Instead, he experienced SUDEP – a Sudden Unexplained Death of Epilepsy.
“SUDEP is generally seen to be unpredictable, unpreventable, and irreversible once it starts,” JR writes. “It can be tied to a seizure but many times the brain just shuts down. Statistically, it was highly unlikely to hit our son: 1 out of 4,500 children with epilepsy are affected. Sometimes you end up the statistic.”
“Enjoy yourself, it’s later than you think”
The family are now facing putting their life back together as a family of three, as they come to grips with the loss of Wiley.
“One of Wiley’s happy times was listening to music and dancing,” JR says.
“Damn, could that kid dance. He loved the Oregon Country Fair and the year before we left for London, we listened to a band there play a version of Enjoy Yourself (It’s Later Than You Think). The words stuck with me that day three years ago and painfully so now.”
“Out of these ashes have come many new and restored connections. Thank you for being one of mine. And I hope from this tragedy you consider how you prioritize your own time.”
Enjoy yourself, it’s later than you think