In the intricate fabric of life, there are threads of resilience, hope, and love that interweave with the unexpected challenges that come our way. The entry of epilepsy into our lives was abrupt and uninvited. It was a day that began like any other, with no warning signs or premonitions. Yet, in the blink of an eye, epilepsy had firmly planted itself on our radar, forever altering the course of our family’s journey.
This is the story of my son, Jordan, who, at the tender age of three, embarked on a journey that would test the strength of our family and reveal the extraordinary courage of a little boy who faced epilepsy with a smile.
It all began on a seemingly ordinary day when Jordan was just a curious and energetic three-year-old. His laughter filled our home, and his boundless curiosity led him to explore every nook and cranny of the world around him. That night, he was nestled on the couch with his grandpa, their eyes locked on a Baby Shark special. The room was filled with the joyful sounds of laughter, and everything seemed perfectly ordinary until our reality was turned upside down.
In an instant, Jordan let out a cry of distress and his tiny body began to convulse, each muscle twitching uncontrollably. Panic and confusion permeated the whole house as my mind raced, searching for answers, but finding none.
Jordan’s face began turning blue as he began to convulse for another minute and then fell unconscious. I dialed 911 in a trembling hurry, and soon, the living room was filled with the sound of sirens as paramedics, firefighters, and police officers arrived at our doorstep. My heart pounded with worry as they rushed us to the emergency room.
In the hospital, Jordan remained unconscious, on the sterile white bed as medical professionals worked tirelessly. The room was filled with the beeping of machines, the hum of fluorescent lights, and my racing thoughts. As Jordan underwent bloodwork, CAT scans, and MRIs, I wracked my brain, trying to piece together what could have triggered this nightmare.
The pediatricians explained that Jordan had experienced a seizure. At that point, there were three possible outcomes: Jordan might wake up and be his normal, cheerful self, running around as if the seizure had never happened. Secondly, he might wake up, but not quite be the same, the seizure having left its mark. The third possibility was the one that haunted my every thought: that he was already in a coma, but the doctors recommended that we cross that bridge if that dark reality unfolded. In those agonizing moments, we were left clinging to hope, praying for that first glimmer of consciousness that would reveal the path that lay ahead for our precious little Jordan.
Five devastating hours stretched into an eternity, and every minute felt like a lifetime as I cradled Jordan in my arms on the hospital bed. But then it happened. Jordan stirred, his eyelids fluttered as he woke up, looking puzzled by the commotion and wondering where we were. To our astonishment, he seemed as if nothing was wrong. His smile, though still weak, radiated innocence and joy. Tears of relief streamed down my face as I held his tiny hand, I thought the nightmare was finally over.
It was this very night that the word “epilepsy” made its unexpected entry into our vocabulary. As we sat in the sterile hospital room, the doctor gently delivered a brief explanation of epilepsy and seizures, all the while hoping that this was a one-off experience for Jordan, a solitary storm in the otherwise calm sea of his childhood. I hung on to the doctor’s every word, jotting down potential triggers for seizures, determined to reshape our lives significantly.
We left the hospital, eager to put the nightmare behind us, only to be thrust back into the grips of fear when, not even four hours after getting discharged, Jordan endured another seizure. The terror was as fresh and chilling as the first time. The feeling of powerlessness washed over me like a tidal wave as I watched Jordan’s body convulse, noting every agonizing detail — the time, the symptoms, and every piece of information that might provide insight. A single minute felt like an eternity. Returning to the hospital because of Jordan’s second untriggered seizure, he officially received the diagnosis of epilepsy.
Our lives became a revolving door of hospital visits, tests, and uncertainties. We were pushed onto a path we never wanted to take but had no choice then to follow. Jordan began seeing a remarkable pediatric neurologist who introduced us to the incredible organization Epilepsy South Central Ontario, where we embarked on a journey of learning, understanding, connecting and coping.
Despite everyone’s persistent efforts, Jordan was deemed medically resistant. Every medication
introduced held the promise of relief, only to be shattered by yet another serious seizure that sent us rushing back to the hospital. We explored every recommended avenue, subjecting Jordan to numerous tests and genetic screenings, and each time, the conclusion was the same: he was the picture of ideal health. Epilepsy, it seemed, had simply chosen him. It was a mystery without answers.
After enduring more than a year of debilitating grand mal seizures, CBD oil was introduced into Jordan’s treatment regimen. It was a pivotal moment, one that brought us to the hospital on June 1, 2022, but also marked the beginning of a new chapter. Since that day, he hasn’t experienced another seizure. Over a year has passed, and Jordan is thriving. His young, resilient brain has been catching up, and he is now on the path to wellness.
Slowly but surely, he has been weaning him off his medications, and now only takes one. Our lives have returned to some normalcy, but the shadow of fear always looms in the background. We have learned to cherish each moment, to celebrate every achievement, and to hold onto hope, for in the face of uncertainty, we’ve witnessed the remarkable strength and resilience of our son, Jordan.
Now, at the age of five, Jordan has faced the challenges of epilepsy head-on, and he has shown us the remarkable strength of a child’s spirit. I want to share our story, not as a tale of sadness or despair, but as a celebration of the courage, determination, and love that have defined our journey. It is a testament to the bond between a mother and her child, the unwavering support of family and friends, and the hope that, even in the face of uncertainty, life can be beautiful and full of joy.
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