https://www.linkedin.com/pulse/its-later-than-you-think-j-r-storment/
It's later than you think
J.R. Storment
President @ FinOps Foundation, Author of O'Reilly's FinOps book, Co-Founder @ Cloudability
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. Minutes earlier, I had admitted to the group that in the last 8 years I’d not taken more than a contiguous week off.
My wife and I have an agreement that when one of us calls, the other answers. So when the phone rang I stood up and walked to the conference room door immediately.
I was still walking through the door when I answered with “Hey, what’s up?”
Her reply was icy and immediate: “J.R., Wiley is dead.”
“What?” I responded incredulously.
“Wiley has died.” she reiterated.
“What?! No.” I yelled out, “No!”
“I’m so sorry, I have to call 911.”
That was the entire conversation. The next thing I know I’m sprinting out the front door of the office with my car keys in hand, running ferociously across the street and muttering “oh Fuck. oh Fuck. oh Fuck.”. Half way down the block I realize I don’t have the opener to my parking garage. Running back into the lobby, I all but shout “Someone drive me! Somebody drive me!” Thankfully, a helpful colleague did.
By the time I got home twelve minutes later, our cul-de-sac was packed with emergency vehicles. I sprinted through our open front door and ran straight towards the bedroom that the boys share. One of a half-dozen police officers there stepped in front of me blocking the way. When a child dies suddenly, it becomes a potential crime scene.
It was 2.5 painful hours before I could see my boy. 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.
When the medical examiner finally finished his work, we were allowed in the room. An eerie calm came over me. I laid down next to him in the bed that he loved, held his hand and kept repeating, “What happened, buddy? What happened?”
We stayed next to him for maybe 30 minutes and stroked his hair before they returned with a gurney to take him away. I walked him out, holding his hand and his forehead through the body bag as he was wheeled down our driveway. Then all the cars drove away. The last one to leave was the black minivan with Wiley in it.
A journal of Wiley’s we found the day after he died.
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. In each of these scenarios he was the boss. His brother (and sometimes us) were invited to work for—not with— him and were each assigned jobs. In the gallery scenario, Wiley informed Oliver that he would be manning the cash register.
Around 5 years old, Wiley decided he was going to get married as an adult. By 6 he had identified the girl, holding her hand at recess on the first day of kindergarten. Over the next two years as we moved from Portland to London to Hawaii, he kept in touch with her by handwritten letter. Not long before we moved back to Portland, the two agreed (by letter) to marry. She beat him to the punch and asked him. He accepted. Happily, he got to see her twice after we moved back to Portland in June.
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.
That evening Wiley got be bossy with the other kids (other than his mother, he was one of the most opinionated people I know) and started telling everyone they were playing the game wrong. I pulled him aside. I was stern with him. Too stern in hindsight. And I made him cry. It’s one of the last interactions we had and I’ve beaten myself up for it a dozen times. I can still see the tears rolling down his face and the protestations of “But you’re not listening to me. No one listens to me”.
A few hours later, things had calmed down. We ordered take out and Wiley ate his favorite meal: rice with yellow dahl. Then we put the kids to bed. I had a very sweet interaction with Wiley at bedtime and apologized for making him cry. We had a good snuggle and I went to bed myself.
About 15 minutes later, I was laying in bed and through the darkened room saw his half naked form—always impossibly tall and lean for his age— walking up the stairs to our bedroom.
“Papa, I can’t sleep.”
There was loud music playing outside from a neighbor’s party and it was keeping him awake. I walked him back to his room and shut all the windows. He said that was better. We had another quick snuggle and a sweet exchange. Then I went to bed for good.
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.
Late that morning, Jessica had thought Wiley was simply sleeping in. He loved to sleep, he loved his bed, and it had been a big week of late bedtimes and fun daytime activities with visiting friends. Eventually she got the sense it had been too long and went in to check on him.
He was cold. The Medical Examiner later estimated he had been dead for at least 8-10 hours by the time she found him, indicating he passed early in the night.
Last year, Wiley was diagnosed with a typically mild form of epilepsy called Benign Rolandic Epilepsy that is most common in boys between 8-13. It’s called ‘benign’ because it typically resolves on its own by the teenage years. Wiley’s was light: we only saw a single confirmed seizure occur. It happened about 9 months ago while we were visiting Portland from the UK.
All of the multiple pediatricians and neurologists with whom we discussed his condition said there was little to be concerned about. He had the “best” type of epilepsy and we should let it run his course. None mentioned what ultimately killed him. SUDEP is shorthand for Sudden Unexplained Death of Epilepsy. It’s rare enough that there is a philosophical debate in the neurology community about whether to proactively tell parents about it.
SUDEP is generally seen to be unpredictable, unpreventable, and irreversible once it starts. It can be tied to a seizure but many times the brain just shuts down. Statistically, it was highly unlikely to hit our son: 1 out of 4,500 children with epilepsy are affected. Sometimes you end up the statistic.
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.
I haven’t gone back to work yet. So, if you’ve emailed or messaged me, it’s likely I haven’t replied. When I do go back, I may end up declaring an email bankruptcy.
The big question is how to return to work in a way that won’t leave me again with the regrets I have now. To be honest, I’ve considered not going back. But I believe in the words of Kahlil Gibran who said, “Work is love made visible.'' To me, that line is a testament to how much we gain, grow and offer through the work we do. But that 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.
While I sat writing this post, my living son, Oliver, came in to ask for screen time. Instead of saying the usual ‘no’, I stopped writing and asked if I could play with him. He was happily surprised by my answer and we connected in a way I would have formerly missed out on. Small things matter. One silver lining from this tragedy is the improving relationship I have with him.
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. Oliver’s brilliant reply when we discussed the shape of our new family: “But Papa, the triangle is the strongest shape.” By some sad and beautiful irony, Oliver has met three sets of 8-year-old twins in our new neighborhood since Wiley passed.
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. So, after the first round of family visits after his death, I took Jessica and Oliver to REI to get gear and we left town quickly to camp near Mt. St. Helens.
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.
One of Wiley's happy times was listening to music and dancing. Damn, could that kid dance. He loved the Oregon Country Fair and the year before we left for London, we listened to a band there play a version of “Enjoy yourself (It’s later than you think)”. The words stuck with me that day three years ago and painfully so now:
“You work and work for years and years, you're always on the go
You never take a minute off, too busy makin' dough
Someday, you say, you'll have your fun, when you're a millionaire
Imagine all the fun you'll have in your old rockin' chair
Enjoy yourself, it's later than you think
Enjoy yourself, while you're still in the pink
The years go by, as quickly as a wink
Enjoy yourself, enjoy yourself, it's later than you think”
As my wife writes in her beautiful post (she’s always more eloquent than I am), All That Remains, “Please ask us about our son’s life and his death. We heal in small bits while talking about 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.
All That Remains
Dr. Jessica Brandes
Physician. Compliance and Regulatory Excellence. Population Health Integration.
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. 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”. We are grieving intensely, but one of the best things we can do is share our story with you. If you can handle it, please ask us about our son’s life and his death. We heal in small bits while talking about it. If you haven’t had a chance to meet with us in person, then read his story here.
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. He had the most gorgeous blue eyes; was tall with huge feet and seemed to be outgrowing everything within 2 weeks. He was mature and understood complex world concepts like religions and different forms of politics. He had been to 10 countries and had lived in London, UK for 18 months of his life. He had driven a car and kissed girls and fell in love with one. He never knew heartbreak and while we will forever know that pain, I think it’s incredible that he loved and never experienced the pain of romantic rejection.
The only clue we have for explaining his death began 9 months ago. We were traveling and he was sleeping in a strange bed in an Airbnb. My mother in law and I heard a significant thud and rushed into the room to see what had happened. He had fallen out of the bed and was actively having a tonic-clonic seizure. To our knowledge, this was the first of it’s 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.
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. When we asked about medication, they all said no. The side effects would be worse than condition we were treating. Since he was incredibly unlikely to have his life disrupted by this epilepsy, there was no reason to alter his life with side effects. His seizures were related to his sleep cycle and we vowed to keep his quantity of sleep as regular as possible so as not to trigger seizure activity.
We educated him on his condition, we told his babysitters and other parents when he had a sleep over. We were aware of status epilepticus and informed them all to call 999 or 911 in the event a seizure lasted more than 5 minutes. We had a seizure action plan filed at his school. We had never witnessed another seizure again.
9 months later, Wiley seemed to be sleeping quite late. I looked in on him and saw a peacefully sleeping child cozy in his bed after a long day of summer fun. He was not sick. There was no indication he was even slightly unwell. He went to bed tired and happy, well-fed having eaten his favorite meal and was sleeping next to his best friend.
I found him later in the morning after I became suspicious that “sleeping in” had lasted too long. 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 and I knew events would move very quickly. I started to call 911, but hung up because there was a more important call I needed to make.
I called my husband at work. We have a rule. 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. He did answer and I simply told him “Wiley’s dead”. I couldn’t sugar coat this and I didn’t have time to explain. I needed him to come home, and I told him I still needed to call 911. When I finished that, I knew I had approximately 4 minutes to explain to Oliver that his best friend had died and 15 people were about to swarm our home. I asked him to pick a location where he would feel safe. Then, sirens.
The first responders came rushing up the driveway with gear and equipment and I begged them to slow down. Nothing could be done, there was no rush and I didn’t want to scare Oliver. I also didn’t want Wiley to be an educational experience so I asked them to disturb him as little as possible while doing their job. None of us in the room expected anything different, but none of us wanted it to be true. They confirmed our son’s death using cardiac leads and slowly returned their equipment back to their truck because even an entire truck of life saving measures couldn’t be used to save this one.
Police arrived because any unexpected death of a minor is a potential criminal event. They barricaded our son’s room and guarded our property until their investigation was complete. This was the moment my husband arrived home; driven by a co-worker who did not know our family, but who quietly participated. He came bursting through the front door and headed for our children’s room, but was stopped by police and abruptly turned his attention to the scared, lonely boy outside. The process took 2.5 hours. 2.5 hours passed incredibly slowly while we begged for the ability to hold our son’s hand, body, touch his hair. We were finally granted this opportunity, but our time was limited. It was not the way a parent should have to see their child, but it was all we had. We held his hand and fixed his hair and kissed his head until our time ran out.
J.R. walked our son out of the house with the Medical Examiner and then one by one, the cars all drove away just as quickly as they had arrived leaving J.R., Oliver and I standing in our driveway in a completely different world then the one we had woken up to.
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. Wiley’s cause of death will take approximately 4 months to officially declare. There is no proof of SUDEP and so everything else even remotely possible must be ruled out. I take solace in the fact that it was peaceful. Wiley was warm and happy and asleep in his favorite place next to someone who loved him. If I were to design my own death, it would be exactly that.
The weeks that followed were and continue to be a dizzy blur of people, apologies, food and flowers. Our family of 4 now has to learn to be a family of 3. We’ve lost our son, and Oliver has lost his twin and his perpetual best friend since before birth. We’re going to work on this new life—how to live it as best we can. We are navigating uncharted waters and we will be for the foreseeable future. When you see us, don’t be afraid to mention Wiley. 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.
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. 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.
