When little bundles of joy are welcomed into the world, they become the center of their parents’ lives and everything revolves around them from that moment on. Moms and dads out there put their personal needs on the bottom of the list of priorities as their children’s needs become their number one concern.
Unfortunately, sometimes, no matter how hard they try, parents are powerless to help their children. Tragedies struck and their world bursts into pieces, like a shattered glass. The pain of losing a child never fades away and things don’t get easier as time passes by, they just learn how to live with their grief.
Jessica Brandes is an Oregon-based naturopathic doctor who has a heartbreaking story to share. She’s a mom of twins, Oliver and Wiley. Unfortunately, Wiley died in his sleep in 2019 as a result of what his parents believe to be SUDEP (Sudden Unexplained Death of Epilepsy).
The heartbroken mother shared her story on her LinkedIn account in hopes of making other parents realize just how important it is to make their children number one priority in life and spend most of their time by their side.
“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,” Jessica started her post.
“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 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 heartbroken mother continued.
Jessica then described a situation when she learned her son had some health issues. During a trip, he was asleep, and suddenly fell down experiencing a seizure.
She and her husband took him to the doctor who ordered an EEG. After they ran a number of tests, Wiley was diagnosed with Rolandic Epilepsy. The good thing was that his condition would be outgrown over time. He wasn’t given any medications and the only thing Jessica and her husband were advised to do was to keep his quantity of sleep as regular as possible as his condition was triggered by his sleeping cycles.
Family and friends were alerted of Wiley’s condition and they all knew what to do in case of a seizure.
“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,” Jessica wrote.
In the morning, when she realized Wiley had been sleeping for too long already, she went to check on him. Oliver was playing on his iPad while Wiley “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.”
Jessica called her husband J.R. and said the words: “Wiley’s dead.” In the next moment, she told Oliver that his friend was dead and people gathered in the house, after which the sirens followed.
First responders arrived with their equipment, but Jessica knew there was nothing to be done.
Because Wiley was a minor, police arrived and blocked the path to his room. When Jessica’s husband arrived home, he wasn’t allowed to enter and see his son. It took 2.5 hours for the police to investigate the place.
“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,” Jessica wrote.
“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 family of four is now learning how to be a family of three, and that’s heartbreaking. However, Jessica says their family and friends shouldn’t be afraid of mentioning Wiley whenever they want.
“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. 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,” this brave mom ended her touching post.
Rest in peace Wiley, you will be forever missed.
