Childhood Narcolepsy that’s his Diagnosis
Childhood Narcolepsy is the diagnosis that #TheBoy was given a little less than a year ago and we have just been dealing with it, trying to be normal…well as normal as we possibly could be given the circumstances. However, there has been an internal storm that has been brewing especially when I find myself explaining or listen to him explaining why he is so tired & why he sleeps so much. I feel a mini hurricane inside me when people mention his weight, which he is super sensitive about right now – and instead of going off…I find myself “calmly” explaining his story. Only to be internally flared up again when people give me suggestions on how to deal with his condition. More often than not, the person I am speaking to has no clue exactly what Narcolepsy is, let alone how to spell it; however many people become doctors, dietitians, and natural remedy specialists when I explain his situation. My blood literally starts to boil, but I grin and bear it because I know “most” people don’t mean any harm. In an effort to deal with my anger I have started this blog post 100 times over and I have debated pushing the publish button 101 times over, but I couldn’t. I guess I wasn’t mad or agitated enough, I guess I hadn’t heard enough snide comments or “remedies” from others. I guess I had to finally reach the point where I was tired of explaining, justifying and cringing at everyone knowing everything about his condition. I guess I had to stop caring about whether me telling folks how I felt came off as mean or not because NO ONE is cognizant that what they say hurts both his and my feelings. The truth of the matter is most people don’t know about Narcolepsy. What they know is from the movie of Deuce Bigalow. They don’t understand his diagnosis or how it impacts him daily. They don’t know the cause of it, hell no one knows the actual cause of it…not even his doctors.
While the clip above is not what my son goes through on a day to day basis, and is hyped up for comedic purposes in the movie. There are people who do suffer from Narcolepsy with Cataplexy, Cataplexy is sudden muscle paralysis of REM sleep occurring during waking hours. Which causes sudden loss of muscle tone that leads to a slack jaw, or weakness of the arms, legs, or trunk. So that means they can pretty much find themselves in a conversation and instantly sleep without warning. #TheBoy only suffers from Narcolepsy, which is a sleep disorder that has symptoms of excessive sleepiness, sleep paralysis, and hallucinations. Unfortunately, sleepiness is not the only issue or symptom of this rare disease. Other symptoms include excessive weight gain (in children), nightmares, and the inability to sleep at night. This is #TheBoy in April of 2015, this is 2 months before his symptoms started (symptoms started June of 2015). He was 6 years old, wore a 5T and was only 51 pounds.
This is my child now at age 7 weighing 90 lbs wearing a size 12 Husky in Boys. Doesn’t take a rocket scientist to figure out that he almost has doubled his weight in less than two years. He was officially diagnosed with Narcolepsy in May of 2016.
These pictures bring me to why my I damn near suffer from High Blood Pressure when I have to explain his situation to others. If there is ANYONE who notices changes in my son’s physical appearance or behavior guess what…IT’S ME!!! I don’t need you to point out anything to me about how he has “grown”, I see him every day, WE deal with the symptoms and repercussions of his ailment DAILY. Yes he has gained weight, but my son is not fat, he doesn’t need adults telling him how much weight he has gained (believe it or not at 7 he is very conscious of it.), he doesn’t need adults telling him that he needs to go on a diet, or joking about his weight…’cuz yes patting him on his stomach or taking food out his hand telling him that he doesn’t need it offends BOTH OF US. He doesn’t need that at all, nor does he deserve it. I don’t need anyone to tell me that I need to put him in extra activities because that will burn that extra weight off. We don’t need YOUR suggestions, I have EXCELLENT insurance and that’s why we see a Sleep Specialist just about every month. We don’t need sympathy, he just needs love, support and for you to allow US to educate YOU as we learn.
I get it, we are a society that speaks first then back track our words later, however we need to become a society that realizes that everything doesn’t deserve a snide comment, suggestion or solution, sometimes you just have to let people handle things on their own.
I truly can say more and go on and on, but I promised myself when I wrote this post for the 101st time, that I wouldn’t make those who prompted this post feel the way we do by their actions and saying more will reveal why this post came about. But now that I have told the whole world his diagnosis, I will continue to update you periodically on his ailment, treatments, and any progress that he has made. But know that I have a tough little Defensive End who is tackling this issue head on and ready to conquer it to the best of his ability.