Couple Who Lost Their 8-Year-Old Son Encourage Parents to Spend More Time With Family

Courtesy of J.R. Storment

In 2015, a Pew research study showed that in nearly 50 percent of two-parent American households, both mother and father work full-time. When both of them are giving more than 100 percent to their jobs, as was the case with high-powered couple J.R. Storment, a tech entrepreneur, and Jessica Brandes, a physician, what happens to spending time with children?

For Storment and Brandes, when one of their 8-year-old twin sons, Wiley, suddenly died in the middle of the night, the parents realized just how precious and short life could be and how important it is to spend time with loved ones while they have it.

Both parents took to LinkedIn and shared their thought-provoking essays that are now serving as a reminder to all parents.

Wiley (R) at his first concert about three weeks before he died in his sleep. Courtesy of J.R. Storment

Describing Wiley, Brandes wrote in her post, “All That Remains,“ that ”He was smart, artistic, ambitious and funny, an incredible dancer, excellent taste in music and movies.”

Wiley being precocious for his age, dad Storment wrote in his post, “It’s Later Than You Think,“ that ”Wiley was obsessed with starting a business. 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.”

Though young, the happy and healthy boy had decided that he would get married when he became an adult at the mere age of 5. By the age of 6, Wiley had even identified it to be with the girl he had met in kindergarten. As the jet-setting family moved from Portland, Oregon, to London, England, and then to Hawaii, Wiley kept correspondence with her through handwritten letters.

In his short course of life, the little boy with the most gorgeous blue eyes had even traveled to 10 countries and driven a car.

However, the only dark cloud on the horizon was that Wiley suffered an epileptic seizure while the family was on vacation about nine months before he died. Wiley was then diagnosed with a “mild form of epilepsy” called benign rolandic epilepsy.

The condition is commonly found in boys between the ages of 8 and 13 and mostly resolves itself by the time they become teenagers.

The family, however, still “consulted with 2 neurologists in the US and in the UK... [who] told us he’d suffer no cognitive deficits, that he would outgrow his condition and that his prognosis was incredibly good,” wrote the mother of two.

As the parents were advised not to give Wiley any medication due to their side effects, the family hoped for the best and tried to continue their normal routine, while vowing to keep Wiley’s quantity of sleep as a priority so as to not let it trigger any seizures.

In August 2019, the family’s lives changed in an instant when Brandes went to check on why Wiley hadn’t gotten up and started to play, while his twin brother, Oliver, was sitting next to him with his iPad.

However, the moments that followed next were filled with panic, tragedy, and grief, as she first found Wiley’s feet to have an unusual color. “My eyes tracked up his legs as I pulled the blanket back and I traced the deep purple color of lividity,” Brandes wrote. The extreme color indicated that he had been dead for eight hours, and a medical examiner later confirmed that, indicating the little boy had passed away early the night before.

J.R. Storment with his wife, Jessica Brandes, and their twin sons, Wiley and Oliver. Courtesy of J.R. Storment

The mom of two then made an important call to her husband informing him that “Wiley’s dead,” before calling 911.

When Storment got the call about his son’s death, he had been in a meeting at his company discussing PTO (paid time off). “I had admitted to the group that in the last 8 years I’d not taken more than a contiguous week off,” he wrote.

Even the morning that Wiley died, Storment remembers work winning out over family. “I woke up for a series of back to back meetings. I did a Peloton ride, took an analyst call from my home office, one with a colleague on the drive to work, then the rest at the office,” he said.

However, in the wake of Wiley’s death, Storment added: “None seem that important now. I left that morning without saying goodbye or checking on the boys.”

While the parents said there wasn’t a kind of epilepsy that could explain why Wiley passed away, they believe that he had died of a phenomenon called sudden unexplained death in epilepsy (SUDEP).

Storment and Brandes were devastated by their loss but have become spokespeople for the importance of work-life balance.

Brandes wrote that when the life of a loved one ends, “there’s just photos and left over things and time is no longer available to you. It is priceless and should not be squandered.” She urges working parents to “take your vacation days and sabbaticals and go be with [your kids].”

Storment echoed the same sentiments as his wife. “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,” he wrote. “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?”

Illustration - Moni Stechova/Shutterstock

After facing this tragedy, Storment has realized not to take a single moment for granted and shares an instance of how he prioritized spending time with their other son, Oliver.

He concludes his essay by writing “[I] hope from this tragedy you consider how you prioritize your own time.”

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