Eight years ago, J.R Storment kick-started his tech company the same month his twin boys were born. Cloudability, his company is part of a dynamic industry that’s constantly growing. Storment spent a lot of time in the past years pushing his business forward, attending endless investor meetings, and having little time for his family.
Three weeks ago, just when his company was finally acquired, one of his precious boys died . Wiley died of unexplained complications from a benign form of epilepsy. He’d been perfectly normal during that time. Storment was deeply heartbroken by the loss of his son. He began to regret all the time he wasn’t there and all the things his ambitious boy didn’t get to do.
The day he lost Wiley
In a gut-wrenching post on LinkedIn, the Portland-based dad penned down an emotional letter to all parents out there . Losing a child is the worst kind of pain there is, and nobody deserves to have the guilt of the undone and their wrong choices heaped upon them. He urges parents to make out time for their children. The struggle for career success and financing the home should never top your list of priorities in life, because, as in his case, life can be really short.
His wife, Dr. Jessica Brandes, broke the terrible news to him on that fateful that day.
“When I got the call I was sitting in a conference room with 12 people at our Portland office talking about PTO policies. Minutes earlier, I had admitted to the group that in the last 8 years I’d not taken more than a contiguous week off.
My wife and I have an agreement that when one of us calls, the other answers. So when the phone rang I stood up and walked to the conference room door immediately.
I was still walking through the door when I answered with ‘Hey, what’s up?’
Her reply was icy and immediate: ‘J.R., 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.’”
The boy had been found lying dead beside his tablet.
Storment recalls that he had someone drive him home and the sight he met was one no parent should ever have to see. Dozens of emergency vehicles clustered around the house, and he couldn’t get through to see his son. The sudden death of a child would immediately become a case for investigation. The police didn’t let him through to see his son until two-and-a-half agonizing hours had passed.
“It was 2.5 painful hours before I could see my boy,” Storment wrote. “After an hour of waiting in shock out front, I told the armed police officers guarding the doors that I couldn’t wait any longer. They allowed me to go out to the deck facing the kids’ room to peer through the sliding glass window. He lay in his bed, covers neatly on, looking peacefully asleep. I put my hand on the glass and lost it. When the medical examiner finally finished his work, we were allowed in the room. An eerie calm came over me. I laid down next to him in the bed that he loved, held his hand and kept repeating, “What happened, buddy? What happened?’”
He held his own child through a body bag, caressing the child’s forehead as he was wheeled down the driveway to the black minivan. He watched his boy get sealed up and taken to the morgue, where he would be left till the day he would be buried. He couldn’t do anything other than to stare at the cars as they left, in shock and terrible pain, focusing on the black one carrying Wiley.
The Ambitious Life of Wiley
Little Wiley had already mapped out everything he would do with his life. He was a typical young man with but with hot business blood, and he wanted to take after his father as a tech innovator. Storment wrote that over the past couple of weeks after his son’s death, he’s decided that the two things he regrets the most are the things he wishes he’d done differently and the things he didn’t see Wiley do.
Wiley’s two greatest aims in life were to run a successful business and get married.
“Wiley was obsessed with starting a business,” Storment wrote. “One day it was a smoothie stand, the next it would be a gallery, then a VR headset company, then a ‘coder’, then a spaceship building company. In each of these scenarios, he was the boss. His brother (and sometimes us) were invited to work for—not with— him and were each assigned jobs. In the gallery scenario, Wiley informed Oliver that he would be manning the cash register.”
The young chap had found his wife at the age of 6 in kindergarten. While the family moved around from Portland to London, then Hawaii and back to Portland, Wiley and the girl constantly wrote each other. Before his death, he got to see her twice in June.
Nine months ago, after Wiley suffered the only seizure he’d ever had, he was diagnosed with Benign Rolandic Epilepsy, a type of epilepsy most common in boys between the ages of 8 and 13. It’s described as benign because it usually resolves on its own before adulthood. His parents took him to several neurosurgeons and pediatricians and they all said the same thing – there was little to worry about.
“None mentioned what ultimately killed him,” he wrote. “SUDEP is shorthand for Sudden Unexplained Death of Epilepsy. It’s rare enough that there is a philosophical debate in the neurology community about whether to proactively tell parents about it.”
SUDEP kills 1 out of every 4,500 (0.02%) children with epilepsy, and sadly, their precious boy was the one . He had passed 8-10 hours before his mother found him, which means he’d died shortly after he fell asleep.
In loving memory of Wiley
Storment has been thinking of not going back to work so he can spend more time with his family. He’s in too much pain from the loss of his child, and he wants to make it up to his other son, Oliver, and his wife for all the lost time. His wife keeps reminding him of all the wonderful things Wiley did get to do, from hiking in Greece to snorkeling in Fiji and even getting to kiss a girl or two.
Storment leaves parents with the ultimate advice.
“Many have asked what they can do to help,” he wrote. “Hug your kids. Don’t work too late. A lot of the things you are likely spending your time on you’ll regret once you no longer have the time. I’m guessing you have 1:1 meetings on the books with a lot of people you work with. Do you have them regularly scheduled with your kids? If there’s any lesson to take away from this, it’s to remind others (and myself) not to miss out on the things that matter.”
He urges people to ask him and his wife, Jessica, about the life and death of their son. It helps them heal to talk about it. Jessica wrote this post about Wiley; all that remains.
One of his most loving memories of Wiley was the boy’s love of singing and dancing. The kid loved the Oregon Country Fair and had been there before they moved to London three years ago. The lyrics of a song they’d loved, “Enjoy yourself (It’s later than you think),” has stuck with his father now.
“It is priceless and should not be squandered. Take your vacation days and sabbaticals and go be with them. You will not regret the emails you forgot to send. From now on, if you email or text me and my reply takes longer than expected, know that I am with the people I love sharing my time, creating my new identity and I encourage you to do the same,” his wife Jessica wrote in her post.
- Luke Kenton. Grieving father urges parents to put family life before their jobs in gut-wrenching letter after his eight-year-old son died suddenly in his sleep. Daily Mail. https://www.dailymail.co.uk/news/article-7436757/Grieving-father-urges-parents-family-life-jobs-death-son.html?ito=social-facebook. Retrieved 11-09-19
- Admin. Too many with epilepsy are unaware of this uncommon but fatal threat. Gainesville. https://www.gainesville.com/lifestyle/20170425/too-many-with-epilepsy-are-unaware-of-this-uncommon-but-fatal-threat?template=ampart. Retrieved 11-09-19
- J.R Storment. It’s later than you think. LinkedIn. https://www.linkedin.com/pulse/its-later-than-you-think-j-r-storment/. Retrieved 11-09-19
- Admin. Benign rolandic epilepsy (BRE). Genetic and Rare Diseases Information Center. https://rarediseases.info.nih.gov/diseases/10287/benign-rolandic-epilepsy-bre#targetText=Benign%20rolandic%20epilepsy%20(BRE)%20is,brain%20called%20the%20rolandic%20area.. Retrieved 11-09-19
- Jessica Brandes. All That Remains. LinkedIn. https://www.linkedin.com/pulse/all-remains-dr-jessica-brandes/. Retrieved 11-09-19
- Guy Lombardo. Enjoy Yourself (It’s Later Than You Think). AZ Lyrics. https://www.azlyrics.com/lyrics/specials/enjoyyourselfitslaterthanyouthink.html. Retrieved 11-09-19