Double-Edged Sword

It’s been around five months since Jack last had a big seizure, that time went by too quickly. He is giving me way too much material to blog about as of recent & I am not a fan! Jack’s break from the big seizures ended Thursday night, May 27. I wrote in my previous blog about how Jack’s appetite has increased dramatically since his hospital stay, we are unable to fill him up & that insatiable need for food is causing an increase in seizures. Little seizures build up to big seizures & it’s the big seizures that are problematic. As Jack had a few little ones early this week, I knew a big one was brewing. Sadly for us, a big seizure means Jack can become violent. Jack’s main caregiver called me around 7:00pm Thursday saying Jack had a little seizure, I came straight home from work. About 45 minutes later, he had a big one. I used a nasal spray called Versed that I had never used before to help counteract the violence, it is a newer prescription written by his neurologist to be used on an as needed basis, like during a big seizure. It basically is supposed to knock Jack out. Unfortunately, it didn’t quite do that without problems. When Jack seizes, his first instinct is to get up. He did just that & collapsed in the hall, thank goodness I was there to catch him. As he was lying on the floor, he slammed his hand down angrily-I knew that was a signal for trouble. I called our friend Jake VunCannon (who I know hates he ever laid eyes on us because we call him so often), to help me transfer Jack from the floor to the bed. While we were doing that, Jack tried to fight, swatting at us several times but the fight died down & he left us alone. After that, he went into a deep sleep for about 1.5 hours, thankfully.

Prior to the seizure Thursday, Jack had eaten a bowl of cereal, three large bowls of popcorn, & a plate of Japanese food. When he woke up after the seizure, Jack went straight to the kitchen to retrieve a bag of Cheetos. He ate the whole giant bag, another large bowl of popcorn & he’s eating another bag of Cheetos as I type. When I gave him his nightly medications, he was a bit irritable & bossy, definitely not the same cooperative Jack we’ve seen over the last few months. Seizures can change people. Jack actually went to sleep at a decent time, 11:30pm, but woke right back up at 12:30am. Now he’s in his room with his door closed & locked. I can’t tell you how long it’s been since he’s done that. We absolutely from day to day never know what to expect with Jack. Not sleeping has definitely been a problem & that alone can cause an increase in seizures, couple that with the increased appetite (that of a 1000lb sisters) & you’ve got a recipe for disaster. It’s 1:45am while I’m working on this blog. Jack is locked in his room as I mentioned, I don’t have a camera in his room, sure would love one especially at a time like this.

I had a dream the night before Jack had the seizure that he was in some kind of duress. The dream is foggy but I know it involved a bed & him fighting. I’ve been one to have dreams that come true, maybe it’s a way of God preparing me for the future. I looked to the Bible tonight before I started this blog because most of you know I struggle with a very real fear of Jack during his violent moments. He’s not been violent since January which may seem like a long time to you, but to me, it seems just like yesterday. I vividly remember each attack, what Jack was wearing, what I was wearing, the sheer exhaustion I felt just from holding him down to protect myself. In my reading of the Bible from Joyce Meyers interpretation, the word fear lead me to several chapters throughout. This one really struck me & has lingered on my mind.

I’m trying so very hard to face my fear. God has hardened me to our difficulties. I am a hard person, it’s difficult to get me to crack, but this is one difficultly I have yet to master. Am I to? God has told me to, why can’t I? I will continue to do the best I can until I can’t. I told Lee I would love to be a wealthy person for reasons no one else reading this has probably ever wished. When this happens with Jack, I’d hire a bodyguard to deal with him & I’d leave the house until Jack was better. But could we even get a bodyguard that would actually work? A little humor given the circumstances our nation is facing. I couldn’t let a blog pass without throwing in a smile. 2am is about my cut-off. Will Jack sleep tonight, who knows. He just rang his bell for me to wash the Cheeto dust off his hands & heat him some warm milk because he heard warm milk can help you sleep. I miss the calmness that our home was able to enjoy over the last five months, but that was because Jack was sick so I surely don’t miss that part. Now that he is better, he is sick in another way. What a double-edged sword. Until next time….💜💜💜

Author: dravetsyndromeblog

44 year old Mama of three kids, wife of a farmer, & business owner. View all posts by dravetsyndromeblog