Everything & Nothing

What a day this has been! There are some days that we know from the time our feet hit the floor that life is going to be wacky. Today was that day for me. It all began at 6:24am with a telephone call. We have a landline still at our home & a man called requesting Lee when I answered. I had only been asleep roughly 4.5 hours at that point & was ill! I gave him a hateful “no”, he hung up on me. Turns out it was someone looking strawberries of all things. Who in the world needs strawberries at 6:24am! I was mad to say the least, when Lee got done with him, he won’t be calling our house ever again. This was the first indication of a bad day. A few hours later, late in the morning, we had a major issue at the Bermuda Triangle of dry land, aka The Berry Patch. To say I was surprised would be a lie. It has left Lee & I mentally exhausted. One day, not today, there will be a blog on it.

Things on the home front with Jack, have been festering to a head, it was only a matter of when. It’s been a compilation of several bits of crazy. Weirdness that can only happen to Jack & ourselves. I’ve written about Jack’s love of nail clippers. He loves them like Popeye loves Olive Oyl & spinach! He doesn’t love them because he loves to cut his nails, but loves them because he can’t stand unevenness or a snag of any kind. This boy could be the one to find a needle in a haystack! He goes looking for trouble & trouble finds him in all realms of the world, be it nail clippers or the internet. Every single night as I clear off his bed complied with every piece of junk, food & paper in his room, his nail clippers are amongst the pile. Take them away you may say, but we’ve tried. He demands their return & instantly. So we let him have at his nails & due to this, he now has an infected fingernail. An infection for Jack means a change of behavior, not just an ouchie. Lee has doctored on his finger for over a week now. Jack has also not been eating nor drinking. This has gone on for nearly 10 days now, maybe a little longer. Last night I spoon fed him a jello & applesauce just so he would have something in his belly. He is also not using the bathroom in either capacity. There is nothing we can do to make him eat or drink. We keep piling his required meds into his body twice a day, he is not voiding at all, everything is being held inside his little stick-frame of a body without getting filtered out properly. Jack goes through vicious cycles like these more often than not, but the finger infection has only added more stress to his body & mind. Not only worried about the above, Jack is extremely concerned about the government shut down. His birthday is in August, he is worried to death that Chuck E Cheese (aka Hell) won’t be opened by then. He is also picking out gifts & trying to plan who all is going to Hell with us. This is because of Dravet Syndrome. Jack doesn’t have a patient gene, he gets hyperexcited over holidays & special occasions months in advance (one of the reasons I loathe special events of any kind).

We’ve got three issues-the fingernail, lack of eating & drinking, & a government shut down. I sound like Columbo solving a crime! Jack has also been doing a lot of pretend sleeping. Pretend sleeping is an attention getter. I knew something was wrong, I didn’t know what until the next series of events took place which was some piece of trash Jack got tied up with on an app called Hangouts. Hangouts is an app you meet people on & message with. From what I see on Jack’s, it’s mainly people pretending to be someone that loves him & is going to marry him, all a scam of course. Last week, Jack’s Facebook was taken over by someone other than Jack. Upon investigation after Jack fell asleep the night I learned of his page being hacked, the pieces of the puzzle started coming together. I found conversations on Hangouts where Jack was being blackmailed by said trash. Jack apparently sent an inappropriate video to this person & now they are trying to blackmail Jack for money for their silence. What I DID find amusing about their conversations were as they were demanding money & telling Jack how they were going to ruin his life, tell the FBI & his parents, they asked Jack how much money he could give them, Jack said “$2”! Then told them $1 billion in a later conversation. I found it comical that Jack was toying with this trash. Posted below are conversations with “Nathalie”. This person is from another country, broken English is the first clue.

This is why Jack has been pretend sleeping. He’s been worried about this person. I can’t talk to him about it because he would know I was snooping on his phone. I was able to go on & block this person, hopefully they will stop soon. Prayer warriors, join us in prayer that this person with leave Jack alone & that this crook’s heart will be healed.

Now onto the events of tonight. This evening I came home early to have a fully cooked meal ready by 8pm (joke). As I was cooking, Jack began talking to Ava about a magnet on the refrigerator. Not knowing what he was talking about, I told her to ignore him & go upstairs. Next thing I knew, Jack came barreling out of his room & demanded a blue magnet, which was nothing more than a chip clip with a magnet on the back. Why he suddenly became fixated on this, I do not know, that’s just how his mind operates. I told Jack I thought the magnet broke. He stomped on the floor like he was King Kong, enough to rattle the whole house. I was so scared. There I was was in the kitchen cooking, two knives out on the counter, hot pans. I really didn’t know what to expect. Lee wasn’t home yet, it was only Ava & I. She is upstairs texting me scared about Jack wondering the same thing I was, is he going to fight? Luckily I found a blue clip in the ever famous kitchen junk drawer. Once I gave it to Jack, he tossed it on his bed like it was a piece of junk (which it really is). That blue chip clip was everything & nothing to him all in the same breath. He didn’t mention the clip again or even touch it again. I was able to get Jack’s mind on something else fortunately for myself. Going through physical rage with Jack is very draining on my mind & body. I honestly envision having a heart attack one day during one of his WWE moments, that is if he doesn’t kill me first.

One thing about Corona that we have enjoyed has been that Jack hasn’t been talking to as many strangers (minus the above mentioned) as he once was, plus, there are restrictions on things, but those restrictions are starting to make people with mental disabilities possibly become worse. There are so many different theories, suggestions, & guidelines for Covid-19, but there aren’t any for mentally unstable people & the ones that care for them whether it in the home or in a residential facility. Both parties are suffering due to Covid. In Jack’s case, it is making his anxiousness increase even though he didn’t really go a whole lot of places any way. We would go to a movie every few months or go out to eat, which I haven’t missed at all cause he acts so foolish, but it restrictions from the government are making him feel like he is grounded so he is rebelling. There are so many children, young adults, adults, & elderly mentally ill patients that can’t been seen by anyone other than employed people of their facility & that’s just not right. Covid is killing people indirectly with broken heart syndrome of that I’m sure. These are the things the news doesn’t report about. They don’t report about seizing children not being able to have their parent in the ER with them due to restrictions, I see this on my Dravet Facebook groups. No matter where you stand on Corona, that is ludicrous. As I was watching a special on autism today, a mother said about her autistic child that was 20 something & she was trying to plan for his future, she asked “who’s gonna love him when I’m dead?” Which got me to thinking about the unfairness of this pandemic. It has been the most unfair to the ones in nursing homes that had visiting family & those in mental/medical care that are not allowed any visitors whatsoever. I bet they wonder if their family is dead, how could they not know if their thinking capacity isn’t there fully?

What an evil world we live in. As I wrap this blog, I realize it’s not one of my lighter blogs or even something that has a crazy story. Maybe to you this blog is a crazy story, but to us, this is all too familiar that it’s like normal, daily life. It’s hard to believe that I once held baby Jack in my arms as he seized for an entire day & night only to repeat it again the next day constantly & thought that would be our only concern with him. Was I ever wrong! Now I look at his body, a bag of bones basically & think how I could best defend myself if need be, not whether or not he will have seizures. Seizures are the least of my concerns now. My worries now are his strength, fingernail clippers, fools he interacts with on the internet, & his lack of eating & drinking-in that order! Plus, it’s been raining so much I don’t know if the moon is full or not to bring on all this foolishness. Yesterday was basically a full day off for me at The Berry Patch, I needed to make a Sam’s Club run, Mama went with me. We had a good time looking at everything, talking, doing things that we normally do but haven’t in months. I kind of feel like when you play, you pay. Sounds unreasonable to type out but I think there’s some validity to it. The story will continue….

Author: dravetsyndromeblog

44 year old Mama of three kids, wife of a farmer, & business owner.

One thought on “Everything & Nothing”

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