LinkedIn is normally reserved for business stories and industry connections. However, two heartbroken parents have used the social media channel as a way to reach other parents who may also be struggling to find that work/life balance.

Both J.R. Stormant and Jessica Brandes have high-paced jobs. J.R. was the founder of Cloudability, a company he started eight years ago, the same year that he welcomed twin boys with his wife.

Jessica is a naturopathic doctor. Needless to say, both of them work long hours.

One morning, one of their twin boys, Wiley, was sleeping extra late. When Jessica went in to check, she found his twin brother Oliver playing iPad in bed with Wiley still under the covers.

She noticed Wiley’s feet were smudged with spots from under the blankets and immediately knew he was gone. The first thing she did was call her husband, who was already at work. She then hung up and called 911.

Wiley was just eight years old.

A vibrant, healthy boy

He was recently diagnosed with Rolandic Epilepsy, a form of epilepsy they’d been told was benign. However, other than that, he was your typical rowdy, vibrant, healthy little boy.

Doctors believe Wiley died from a rare condition called Sudden Unexplained Death of Epilepsy. As Jessica explains, “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 medical practitioner guessed Wiley died early in the night.

As you can imagine, the hole Wiley’s death left in the family’s heart is enormous. But through their heartache, both J.R and Jessica managed to find the words to remind other parents what matters in life. Our children.

In twin essays posted to LinkedIn, J.R. and Jessica tell two perspectives of their son’s death but offer a similar message to all those reading it – “if you are a parent and have the capacity to spend more time with your kids, do.”

You can read the full essays here (J.R.’s essay and Jessica’s essay) but we’ve also shared some of their stories and their poignant messages below*. Our hearts break for the entire family as they come to terms with life without Wiley.


Dad’s perspective: It’s later than you think 

“Eight years ago, during the same month, I had twin boys and co-founded Cloudability. About three months ago Cloudability was acquired. About three weeks ago we lost one of our boys.

When I got the call I was sitting in a conference room with 12 people at our Portland office talking about PTO policies.

By the time I got home twelve minutes later, our cul-de-sac was packed with emergency vehicles.

[Wiley] lay in his bed, covers neatly on, looking peacefully asleep. I put my hand on the glass and lost it. I laid down next to him in the bed that he loved, held his hand and kept repeating, “What happened, buddy? What happened?”

One of the countless difficult moments of this month was signing his death certificate. Seeing his name written on the top of it was hard. However, two fields further down the form crushed me.

The first said: “Occupation: Never worked” and the next: “Marital Status: Never married”. 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.

My wife is constantly reminding me of all the things he did do: 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.

And then he died in his bed overnight.

The evening before was normal. Wiley was healthy and engaged. We had friends with kids over for dinner. We all jumped on the giant trampoline that had been the first purchase for the house we had bought just a few weeks ago.

Around 5:40am, the next morning 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. None seem that important now.

I left that morning without saying goodbye or checking on the boys.

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.

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.

Work needs to have a balance that I have rarely lived. It’s a balance that lets us offer our gifts to the world but not at the cost of self and family.

Our family has gone from having two units of two (the parents and the twins) to now being a triangle of three. That’s a big adjustment for a family that has always been four.

I’ve learned to stop waiting to do the things the kids ask for. When we sold the business I gave each of the boys a $100 dollar bill. They decided to pool their money to buy a tent for camping. But we didn’t make it happen before Wiley died. Another regret.

Somehow, we got to the wilderness without enough cash to cover the campground fee and had a slight panic. Jessica then realized that Wiley’s $100 bill was still in his seat pocket. He got to spend his money on camping after all. Collectively, the family said a big, “Thanks, buddy” out-loud to him. It was one of many bittersweet moments we will experience for the rest of our lives. Each happy time brings with it the sadness that he doesn’t get to experience it.

Out of these ashes have come many new and restored connections. Thank you for being one of mine. And I hope from this tragedy you consider how you prioritize your own time.”


Mum’s perspective: All that remains

“I am a mother to 8-year-old twin boys, Oliver and Wiley. I am bound to this identity the same as I am wife, doctor, daughter, female. Things that are unchangeable in my mind.

Our son, Wiley, recently died. In general, he was happy and healthy and had been to his pediatrician, eye doctor and dentist all within one month of his death. He was smart, artistic, ambitious and funny, an incredible dancer, excellent taste in music and movies.

[One morning] Wiley seemed to be sleeping quite late. 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.

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. There was no emergency, no opportunity for intervention where I could have changed the outcome. He was gone.

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 are 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. 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.”

What to read next

*Please note: Jessica and JR live in America. We have chosen not to change the spelling of their stories.  

Author

Born and raised in Canada, Jenna now lives in Far North Queensland with her tribe. When the mum-of-three is not writing, you can find her floating in the pool, watching princess movies, frolicking on the beach, bouncing her baby to sleep or nagging her older kids to put on their pants.

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