Parents will do everything to give their children a comfortable life. Sometimes that includes spending most of their time working. And though it is done out of love for their greatest treasure, time lost cannot be regained. This is what J.R. Storment, a tech mogul, and his wife Jessica Brandes, a naturopathic doctor, realized after losing their precious 8-year-old son.
The hardworking parents together with their adorable 8-year-old twins, Wiley and Oliver, form a picture-perfect family. They filled their home with warmth and happiness. They traveled and explored the world altogether, sharing an awesome adventure. But one day, their world turned upside down when Jessica felt the cold, lifeless body of Wiley in his bed.
The pain brought by Wiley’s untimely death is unimaginable. The family lost a loved one and recovering from such heartbreaking loss takes time. But as a way of healing, J.R. and Jessica decided to share their regrets and realizations in a detailed open letter uploaded on their respective Linked In profiles.
“He was smart, artistic, ambitious and funny, an incredible dancer, excellent taste in music and movies.” The mourning naturopathic doctor said, giving a vivid description of Wiley in her open letter. “He had the most gorgeous blue eyes; was tall with huge feet and seemed to be outgrowing everything within 2 weeks.”
Jessica also revealed that a month before Wiley’s unexpected death, he had visited his pediatrician, eye doctor, and dentist and each check-up showed a healthy result. In addition, her son was vibrant and showed no sign of being sick. Wiley went to bed tired and happy after sharing a hearty meal with his loved ones.
Thus, when Wiley did not get up early in the morning, Jessica simply thought that he must have been tired after playing all day long with his friends. It was by the time Oliver was playing beside Wiley that Jessica felt something was wrong.
“Oliver had been playing on an iPad next to Wiley and I found it strange that Wiley had not woken up and started playing as well.” Jessica recounted.
“He was under a blanket and his feet appeared mottled. That was the moment. The moment I knew what was coming next. My eyes tracked up his legs as I pulled the blanket back and I traced the deep purple color of lividity.” The naturopathic doctor continued. “This extreme color change indicated to me my son had been dead for at least 8 hours. I felt for a pulse and somehow felt surprised by the cold skin I touched. There was no emergency, no opportunity for intervention where I could have changed the outcome. He was gone…”
After discovering Wiley’s cold and lifeless body, Jessica quickly called 911. But she dropped the call and decided to tell the heartbreaking situation to her husband, J.R, first.
“We never call unless it’s incredibly urgent. A text will suffice if it isn’t. So, when one of us calls, the other answers—no matter what.” Jessica shared.
“He did answer and I simply told him, ‘Wiley’s dead.’” It was after the call that Jessica called 911 again to inform them of the situation.
“When I got the call I was sitting in a conference room with 12 people at our Portland office talking about PTO policies.” J.R. recalled on his own emotional open letter. “Minutes earlier, I had admitted to the group that in the last 8 years I’d not taken more than a contiguous week off.”
J.R. knew that his wife wouldn’t call him if it is not an urgent matter. So even if he was in the middle of a meeting, he excused himself to answer the call. He knew it was an emergency, but he did not expect the kind of news Jessica delivered.
“J.R., Wiley is dead.”
Overwhelmed by the heartbreaking news, the devastated father quickly went home. J.R. was welcomed with emergency vehicles. He immediately ran straight towards the twins’ bedroom but was stopped by police authorities. Apparently, Wiley’s sudden death could be a potential crime scene and so he had to wait for the investigation to be done. J.R. wanted to see and hold his dear Wiley, but the best he could do was watch his lifeless body from afar.
Once the medical examiner completed his investigation, J.R. and the rest of the family were finally allowed to come in.
“An eerie calm came over me. I laid down next to him in the bed that he loved, held his hand…” J.R. recalled. “What happened, buddy? What happened?” He repeatedly asked.
“The only clue we have for explaining his death began 9 months ago… He had fallen out of the bed and was actively having a tonic-clonic seizure. To our knowledge, this was the first of its kind and certainly the first one we had ever witnessed. He recovered, as most people do from a seizure with no memory of the event whatsoever and we immediately visited his pediatrician who subsequently ordered an EEG.” Jessica shared on her own open letter.
The 8-year-old Wiley was diagnosed with Benign Rolandic Epilepsy. It is a mild and non-threatening form of epilepsy that manifests to children between 6-8 years old. Seizures typically occur during sleep. But the condition usually clears on its own when the child reaches his teenage years.
Jessica asked the neurologists if her son needed any medication and they all said no. The naturopathic doctor took precautionary measures and kept Wiley’s sleep pattern as regular as possible to keep his seizure activity at bay. She also informed Wiley, his babysitter, and other parents as well about his condition so they will know what to do in case it happens.
“We had a seizure action plan filed at his school. We had never witnessed another seizure again.” Jessica added.
But none of their emergency plans were able to help them save Wiley’s life. What they did not know was that 1 out of 4,500 children affected with epilepsy may suffer from Sudden Unexplained Death of Epilepsy.
“We believe Wiley died of a phenomenon called SUDEP.” Jessica said. “If you think of brains as being the computers of the body, Wiley’s just turned off. No known trigger, no warning. It just shut down and without a brain, there is nothing.” The mourning mother explained.
Signing Wiley’s death certificate pained J.R. even more. It did not only show that his son is no longer with him. It also reminded him of the things Wiley did not have any chance to do- adding insult to injury.
“…Two fields further down the form crushed me. The first said: ‘Occupation: Never worked’ and the next: ‘Marital Status: Never married.’” J.R. said. “He wanted so badly to do both of those things. I feel both fortunate and guilty to have had success in each.”
“Over the last three weeks I have come up with an endless stream of things I regret. They tend to fall into two categories: things I wish I had done differently and things I’m sad not to see him do.” J.R. confessed in his open letter.
Each time J.R. thinks about the things he wished Wiley was able to do, Jessica comforted with the great things Wiley accomplished.
“Wiley went to 10 countries, drove a car on a farm road in Hawaii, hiked in Greece, snorkeled in Fiji, wore a suit to a fantastic British prep school every day for two years, got rescued from a shark on a jet ski, kissed multiple girls, got good enough at chess to beat me twice in a row, wrote short stories and drew comics obsessively.”
If there’s one thing J.R. is regretful of, it was not having the time to check on his twins and say goodbye to them before attending his meeting.
“I woke up for a series of back to back meetings. None seem that important now. I left that morning without saying goodbye or checking on the boys.” J.R. sadly admitted.
The people around J.R. sympathized with him and offered help in any way they could. But instead of asking for assistance, J.R. encourages other parents to start spending more time with their children.
“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,” J.R. advised.
“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?” The mourning father asked.
“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,” J.R. said, hoping others would learn from their experience.
Jessica agrees with her husband. On the open letter the naturopathic doctor penned on her Linked In profile, she emphasized that life is vulnerable. Our time is limited, and so every second must be cherished.
“If we’ve learned anything at all, it’s that life is fragile and time really can be so cruelly short. We wish a lot of things were different, but mostly we wish we’d had more time.” Jessica said, sharing her realizations. “If you are a parent and have any capacity to spend more time with your kids, do. When it ends, there’s just photos and left-over things and time is no longer available to you.”
“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.” The naturopathic doctor added, sharing her final thoughts.
As of now, the tech-mogul, the naturopathic doctor, and Olver are taking their time to heal from the pain of losing their beloved Wiley. The hardworking parents are also spending more time with Oliver and are working on improving their relationship with their only living son, Oliver. After all, they may be professionals, but none of their titles matter more than their precious sons- Wiley and Oliver.
Time is the most precious resource that we have. Once spent, it cannot be taken back. So better spend it with the people who matter the most. You may read the full content of J.R. and Jessica’s emotional and heartbreaking open letter on their respective Linked In Profile.