Faith Health Parenting

November is Epilepsy Awareness Month – My Son’s Story/My Story

This week my son and I stayed up all night long playing video games, eating junk food, and watching a marathon of Star Wars movies. No, I wasn’t getting him ready for college; I was depriving him of sleep. The next day he needed to sleep at the doctor’s office to be observed for an EEG test, which we call the “Silly Button Test.” But for that night it was some “me time with daddy.” It was one of those moments as a parent when you throw all rules out the window. The root beer floats flowed like a fountain and the two of us conquered the evil Empire by our far superior video game playing abilities. Luckily I’ve had quite a bit of practice at that. When it was time for some relaxing, we watched the Star Wars movies and had snacks. He was in heaven. How often do kids want to stay up with their parents but can’t? It was one of my favorite nights of being his daddy even though we were staying awake for such a serious reason.

My son is 7 now and for the past four years he has been fighting a battle with a form of nocturnal epilepsy. The first time I noticed it I was ironically playing video games with my brother-in-law. My son was asleep on the couch when he sat up and an amazing amount of drool poured from his mouth. His face contorted and twitched and he flopped back on the couch. After this happened the worst sound I’ve ever heard came from his body. It was a guttural cry. I’ve never heard any type of animal sound like that before. As I rubbed his head I talked to him trying to get him to come out of it. I prayed for God to intervene. He opened his eyes and looked up at me and struggled to talk. Nothing but a mumble came from his throat. Tears are welling up in my eyes as I type this. Seeing your little boy struggling is such a hard thing to go through. He came out of it and we went to the doctor. Later on he was fine and the next day we made a trip to see a Pediatric Neurologist. My wife and I were a wreck internally, but we stayed visibly strong. An anesthesiologist came in to put my son under to get an MRI. He got poked repeatedly, but the anesthesiologist ccouldn’t get his vein. I had a “Dad moment” as I reached over and put my hand next to the anesthesiologist and calmly said, “You better get it right this time.” And he did. Wyatt went to sleep and my wife and I kept our composure as we watched his little body enter the machine. We still had no clue as to what was going on inside his brain. Shortly after all the tests were done the doctor confirmed that he had nocturnal epilepsy. He would no longer be allowed to take naps during the day and had to start taking medication both in the morning and at night. A side effect of the medication was sleepiness, which made it extremely hard at first because he couldn’t take naps anymore. That night after my son went to bed, I finally broke down. I was uncontrollable as my mind automatically went to the worst possible scenario. Luckily for me I’ve got a great wife as a parenting partner who helped keep me strong during that time.

For the past four years I’ve learned to sleep with my ears open. There isn’t a sound in my house that gets by me during the night. His bed could creek the tiniest bit and I’m up and in there. There are nights that I hover over his bed staring at his chest to make sure that it rises up and down. It’s been rough at times. I’m amazed at those parents who’ve got children that have these sicknesses that say they are okay with it because it showed them a side of health, society, or themselves that they wouldn’t have ever seen before. They have used the circumstance to better their communities or help those that are going through the same thing. That isn’t me. I wish he would have never got this terrible thing.

There are times now that I feel guilty for the way I feel at times because there are other children that have it so much worse than my son. Some of the children that I’ve seen at the hospitals and doctor’s offices have been incredibly heart-breaking. My heart and prayers go out to them.  

So where does that leave me and why am I even writing about this? Sometimes blogging is about the blogger and that person getting through something. I’ve been attempting to get through something for four years now. For four years I’ve included in my daily prayer, “Please God heal my boy.”  In therapy a therapist usually says, “And how does that make you feel?” I’m sad, tired, upset, and heart-broken and it looks like I’ll be that way for a while. November is Epilepsy Awareness Month and I’m very aware. May God grant peace to all those that have loved ones who suffer from epilepsy. I pray that all those that are suffering will have healing and be free of the wars that go on in between their ears.

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4 comments

  1. Fortunately, my nephew has a mother and father to doing whatever is necessary to get him through this. He is a very blessed to have you for parents.

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  2. What touching prayers… I hope they come true for your family and our community experiencing epilepsy. It always breaks my heart to read essays from parents that watch their children seize. I was the child with epilepsy and can only imagine how much my parents suffered while watching me seize time and time again.

    If I could get one message to parents it is how the their children do not feel pain during a seizure. That is the one blessing-our bodies close out pain when we seize. It is much more painful to watch a seizure than it is to be experiencing one.

    I wish you only the best. You must be a wonderful daddy. May sleep come soundly and peacefully to your son. Warm wish to you all.

    Tara

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