Heartbroken Couple Urge Parents To Prioritise Their Kids After Son Dies In His Sleep
A devastated couple have written poignant open letters to other parents following the sudden death of their son three weeks ago.
While both Dr Jessica Brandes and J.R. Storment recall the loss of eight-year-old Wiley from their own perspectives, their individual posts share the same message at their core: put your loved ones before anything else in your life.
In their separate accounts, the couple write how, before his untimely death from epilepsy, Wiley was a "happy and healthy" child, a keen dancer and a budding businessman with plans to launch his own technology empire later in life.
Channelling their raw emotions onto the page, the couple explained that they were hoping to heal "in small bits" by speaking about their loss so openly.
Including a family picture from happier times, in her letter, All That Remains, Jessica wrote: "Our son, Wiley, recently died. Our culture is trained to give people space around an event like this. It's considered rude to ask what happened and why and so the only words left are 'I'm so sorry'."
The Portland based doctor then proceeded to pour her heart out as she got painfully honest about the moment she discovered her son Wiley had died in his sleep from Benign Rolandic Epilepsy.
The parents believe their son passed away as a result of a SUDEP (a sudden unexplained epilepsy death).
Heartbreakingly, Wiley's twin brother Oliver was sat playing on his iPad in the bed next to him when Jessica made the discovery, and in the traumatic memoir she recalls how she had just seconds to let her husband J.D. know, call the emergency services and also ensure her little boy wasn't scarred for life.
"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," she recalled.
"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 eight 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."
Recalling the horrific moment in his own LinkedIn memoir, It's Later Than You Think, technology exec J.D - who hadn't missed more than a week of work in eight years - wrote of his shell-shock when he received Jessica's call, and how he dealt with the grief that followed.
"It was two and a half painful hours before I could see my boy," he said. "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."
J.D. painfully remembers that when he was finally allowed to see his son, he laid down next to him and kept repeating: "What happened, buddy? What happened?"
Two unquestionably tragic reads, both J.D. and Jessica's letters explained that they were telling their story for an important reason.
Urging people to evaluate their priorities and cherish every moment with their families, Jessica signed off: "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 left over 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."
Meanwhile, J.D. advised: "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 then shared the lyrics to a song Wiley had loved when he was alive.
They poignantly concluded: "Enjoy yourself, enjoy yourself, it's later than you think".
What is Benign Rolandic Epilepsy?
Benign Rolandic Epilepsy is a nocturnal epilepsy that causes seizures in young children between the ages of three and 12, but often resolves naturally with age.
The seizures are usually no longer than two minutes in length, and present themselves through drooling, twitches and stiffness of the face, as well as tingling on one side of the mouth.
While Benign Rolandic Epilepsy itself is not thought to directly cause SUDEP, in more severe cases the throat can be affected, and sometimes both sides of the body can react, causing jerking movements in the arms and legs and even less of consciousness (a tonic-clonic seizure), which can be fatal.
Featured Image Credit: LinkedIn: Dr Jessica Brandes