A healthy work/life balance is something every parent struggles to have, but sometimes it isn’t always easily achievable. The demands of work sometimes seem more important than anything else, and in an effort to maintain professional success, our personal life often suffers. A successful Oregon couple who recently suffered a devastating loss is urging other parents to make sure they take the time to prioritize family because you never know when your world will be turned upside down.
J.R. Storment is a successful businessman whose company was recently acquired and his wife, Dr. Jessica Brandes is a successful naturopathic doctor. Together the couple is parents of 8-year-old twins Oliver and Wiley and the family of four currently reside in Portland, Oregon. The couple each penned their own heartbreaking letters, posted on their LinkedIn pages, detailing how the recent loss of their son Wiley has changed how they live, and how they hope their experience will change how others live. You will definitely want to have a few tissues handy before you read ahead.
In her post, Dr. Brandes explains that her sons were both happy, healthy and energetic young boys. She wrote that about 9 months ago while on vacation, Wiley experienced a seizure while sleeping. “Wiley was diagnosed with Rolandic Epilepsy. This specific form of nocturnal epilepsy is a “childhood” form and “benign”. We consulted with 2 neurologists in the US and in the UK. These highly trained physicians told us he’d suffer no cognitive deficits, that he would outgrow his condition and that his prognosis was incredibly good. “ They opted against medicating their son since the side effects of the medication would cause more harm than the medication would help. Since Wiley’s condition was so mild, Brandes and her husband committed to keeping Wiley’s “quantity of sleep as regular as possible so as not to trigger seizure activity. “
She writes that it was one morning, just a few weeks ago, when she realized her son was sleeping in quite late. After going to check on him she made the shocking discovery that her son was deceased in his bed. “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. 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.”
Brandes called her husband before dialing 911 — knowing there was nothing that could be done for her son — and knowing that she needed to tell her husband before anyone else. She then had to explain the heartbreaking news to Oliver and have him somewhere he felt safe in the house when the emergency personnel began to arrive.
Brandes explained that Wiley’s cause of death is suspected to be something called SUDEP. “We believe Wiley died of a phenomenon called SUDEP (Sudden Unexplained Death of Epilepsy). 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.” She added that while SUDEP is suspected, they won't have a definitive answer as to the cause of Wiley's death for four months.
The grieving mother wrote that one thing she wished she had done was spend more time with her young son. “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. 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 leftover things and time is no longer available to you. 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,” she added.
Storment echoed his wife’s thoughts, writing his own advice to other parents who ask how they can help. “Many have asked what they can do to help. 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.”
Brandes also asked that people not be afraid to talk to her and her entire family about Wiley. “When you see us, don’t be afraid to mention Wiley," she wrote. "We love him and always will and we are doing our best to hold on to the amazing and expansive space he occupied here on this Earth.”
Although the couple is grieving, they hope their loss will help encourage other people to realize that life is short and that it’s important to make time for the most important people in it. “Out of these ashes have come many new and restored connections,” Storment finished his post. “Thank you for being one of mine. And I hope from this tragedy you consider how you prioritize your own time.”
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