Oliver and Wiley are 8-year-old twins. I’m connected to this identity as a wife, doctor, daughter, and woman. My inviolable.

Wiley died lately. Our culture encourages individuals to give this event room. It’s disrespectful to inquire about what occurred, so all you can say is, “I’m sorry.” We are saddened, yet we feel compelled to share our tale with you. Ask us about our son’s life and death if you can. While conversing, we heal. If you haven’t met us yet, read his tale here.

He was happy and healthy and had visited his paediatrician, eye doctor, and dentist one month before his demise. He was brilliant, artistic, ambitious, witty, and had great music and movie taste. He had beautiful blue eyes and tall feet and outgrew everything in 2 weeks. He knew religions and politics. He’d visited 10 countries and spent 18 months in London. He drove, kissed, and fell for a female. He never felt heartbreak, and while we will always feel it, I believe it’s remarkable that he loved and never suffered rejection.

Courtesy of Dr Jessica Brandes

Courtesy of Dr Jessica Brandes

The only hint we have dates back 9 months. He was resting at an Airbnb while we travelled. My mother-in-law and I heard a crash and ran into the room. He’d fallen and was suffering a tonic-clonic seizure. We’d never seen anything like that before. He recovered from the stroke with no recollection, so we contacted his physician, who ordered an EEG.

Wiley has Rolandic Epilepsy. This infantile nocturnal epilepsy is benign. We consulted US and UK neurologists. They assured us he would not have any cognitive impairments, would outgrow his illness, and his prognosis was excellent. They all said no to medicine. Side effects were worse than the disease. Since epilepsy was unlikely to affect him, there was no reason to give him adverse effects. We pledged to make his sleep as regular as possible to avoid triggering seizures.

We alerted his babysitters and other parents about his condition before sleepovers. We told them to contact 999 or 911 if a seizure lasted more than 5 minutes. We submitted a school seizure plan. No further seizures happened.

Courtesy of Dr Jessica Brandes

Courtesy of Dr Jessica Brandes

Wiley slept late 9 months later. I spotted a summer-weary youngster sleeping soundly in his bed. He’s healthy. He didn’t seem ill at all. He went to bed weary, joyful, well-fed and close to his best buddy.

I discovered him later in the morning after suspecting he’d slept too long. Oliver played on an iPad next to Wiley, and I was surprised he hadn’t woken up. His blanket-covered feet were mottled. That’s it. I knew what was next. As I drew aside the cover, I saw lividity on his legs. This hue shift meant my baby had been deceased for 8 hours. I checked for a pulse and was astonished by chilly skin. No urgency, no chance to modify the outcome. He was gone, and I knew things would become busy. I dialled 911 but hung up because I wanted to make another call.

I phoned him at work. Rule: We only call in emergencies. If not, the text will do. When one of us calls, the other always answers. I informed him, ‘Wiley’s dead.’ I couldn’t sugarcoat or explain. I advised him to return home and call 911. When I finished, I had 4 minutes to tell Oliver his closest buddy had died, and 15 people were coming to our house. I told him to choose a safe area. Silence.

I implored the first responders to slow down as they rushed up the driveway. No hurry, and I didn’t want to startle Oliver. I didn’t wish Wiley to be a learning experience, so I begged them not to bother him. We weren’t surprised, but we didn’t want it to be true. They verified our son’s death with cardiac leads and slowly returned their equipment to their vehicle since they couldn’t rescue him.

Any unexpected little fatality is a potential crime. They locked our son’s room and secured our belongings while they investigated. My spouse was driven home by a coworker who didn’t know us but discreetly cooperated. A fearful, lonely youngster greeted him as he raced through the front door, heading for our children’s room. 2.5 hours passed. We asked to hold our son’s hand, body, and hair for 2.5 hours. We had this chance, although it was brief. We had no other means to see our child. We kissed and held his hand till time ran out.

Courtesy of Dr Jessica Brandes

Courtesy of Dr Jessica Brandes

Just as they arrived, the cars all drove away, leaving J.R., Oliver, and I standing in our driveway in a very different world from the one we awoke to.

Wiley died of SUDEP (Sudden Unexplained Death of Epilepsy). If brains are the body’s computers, Wiley’s off. No warning or trigger. It just died, leaving no brain. Wiley’s cause of death will be known in around 4 months. Since SUDEP is unproven, everything else must be ruled out. Peacefulness comforts me. Wiley was warm, comfortable, and slept close to a loving person. That’s how I’d plan my own demise.

After that, the weeks were a jumble of people, apologies, food, and flowers. Our family of four is now a family of 3. Oliver has lost his twin and best companion since infancy. We’ll work on living this new life well. We are still in uncharted seas and will remain for some time. Mention Wiley when you see us. We adore him and always will, and we’re doing our best to honour the place he inhabited on Earth.

We’ve learnt that life is fragile and time is finite. We wished for many things, but especially for more time. Invest extra time in your children if you can. You have images and leftovers when it’s finished, but no time. It’s valuable; don’t waste it. Spend your time off with them. You won’t regret missed emails. If my email or text response takes longer than usual, know that I’m among the people I love, forging my new identity. I encourage you to do the same.”

 

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