Project Sleep’s Note: On March 19, 2016, Wendy O’Neal hosted her first NARCOLEPSY: NOT ALONE event with Project Sleep in Fultondale, AL. The event was called Dream Tracers – a play on the phrase “dream chasers” since it was an arts an craft event as well.
Everyone had a good time making their signs, learning about narcolepsy and reading Wendy’s captivating essay, “Dream Big: Jaedyn’s story” (shared below). Wendy reports, “It was an amazing day and I hope to expand each year!”
Dream Big: Jaedyn’s Story
Written by: Wendy O’Neal (Jaedyn’s Mom)
Edited by: DeCorey Hale
School was dismissed for the summer of 2013, on May 24th. My son, Jaedyn, stepped into the car and instantly fell asleep. I didn’t think anything of it, attributing it to the his busy day at school, nothing more. Little did we know this was only the beginning.
The next day we traveled to Pensacola, Florida, for our yearly family vacation. As typical with most young children and long car rides, Jaedyn slept the entire time down. After our arrival to our hotel and check-in, he began to laugh, then fell down right there in the hotel lobby. I asked if he was ok, and his reply to me was “yes, Mama, I did that on purpose”. I thought nothing more of it than a harmless prank (which I later found out was formally called cataplexy, which is the episodic loss of muscle function). Later that day, we finally made it to the beach, enjoying our family the sun and the ocean. We took a little break from the fun to cool off at the ice cream shop, where I watched in amazement as my son ate his ice cream on a stool with his eyes closed and head bobbing.
At this point I knew something just wasn’t right. We continued on with our day, heading back to the hotel to get cleaned up, before going to Chuck E. Cheese. My other son, Jaedren, thoroughly enjoyed himself, while Jaedyn, still tired from the day, mostly slept on my shoulder in the booth. All I could think to myself was, “this is one of his favorite places, and all he wants to do is rest. What is wrong with my son?”
On Monday, we headed back home to spend time with the family for Memorial day. While at my parents’ house, Jaedyn became very jittery, weak-eyed and started wobbling back and forth. We immediately took a trip to the emergency room. There, he was diagnosed with mono, because of a swollen spleen. He could not participate in any physical activities, which meant he would have to be out of summer camp for a month, until he was cleared. Thankfully, my mother was also on her summer break so she was able to take care of him while I continued to work during the summer.
During the month that Jaedyn was out of summer camp, he began to do strange things at night, such as talking in his sleep, and having hallucinations. He was also gaining a considerable amount of weight. I could not believe the extreme changes that were taking place with my son, right before my eyes. I just knew there had to be more to the story than a simple case of mono. That July, I scheduled him for a sleep study.
In July, after being cleared by the doctor of mono, his spleen going back to its normal size, and with his sleep study pending, Jaedyn happily returned to summer camp. Later that day, I received a phone call from the camp counselor saying that Jaedyn had fallen asleep in the pool! Luckily, at the time he was riding on the back of a friend. This was my moment of clarity; I knew there was in fact a bigger issue than what was previously diagnosed. With that said, the wait on the sleep study results became agonizing.
On the evening of July 23, 2013, I sat with Jaedyn as we listened to Dr. Makris explain to me that my son, my six year old baby, had narcolepsy, a chronic condition. As the doctor continued to talk and give us more information on the condition itself, he reassured me that everything would be just fine. But as a mother, all I could think of was the significance of this life-changing event on my young son, and our family as well.
Fast forward, almost three years later, and we are still on the road of understanding, continuing to learn about this condition daily and living a healthier lifestyle. Many people tend to think that narcolepsy means that “they just fall asleep”. But there is so much more to it. For Jaedyn, it meant a complete overhaul of his normal lifestyle. Among them being two to three scheduled naps during the day, taking his prescribed medication, and staying away from certain foods. All of these things have helped tremendously.
On behalf of Jaedyn, my family and myself, I would like to personally thank you for listening to our story. It has been a long road, but we are doing just fine, and to be able to tell his story is such a great relief for us. It is somewhat therapeutic to share with you, knowing we are now able to take this condition by the horns and not let it dictate our lives. Do we have all of the answers? No, of course not. No one does. But what we do have is our new life, our trials and triumphs, and how we rewrote the script. That in itself is enough for us. And if anyone sees our story and is empowered to take their life back, then we have indeed accomplished what we set out to do.
Additional Dream Tracers Event Photos: