Throwing a Test and a Hit and Run

How would you like to have a limitless amount of confidence? An endless, extraordinary, 110% assuredness that you can fly an airplane without any training, you can defeat the strongest man/woman in the world, you could send a person to Mars without majoring in space studies? In some instances, that would be great, but it’s is a tough way to live & can be even tougher for the people living with you. It would make people not want to be around you. This explains Jack in a nutshell. He is so self-assured that he fell for the recent FedEx scam that was going around. He got a text from FedEx requesting him to call them about a package. He calls them without asking me of course, I hear most of the conversation. Jack tells the man he wants to setup an account, goes on with his address, email, then the man asks for a credit card. Jack gives him his Visa gift card number that doesn’t have any money on it, thank the Lord. The pretend FedEx people end up hanging up on Jack. His fears are null, he knows everything in the world. If he’s ever wrong about something, then his next answer was going to be whatever the answer was. His attitude is full of grandiosity, every bit of the confidence in the world is bottled in his DNA that has created a force so strong that Superman could not tear down all because of a number. That number is 18. Growing up & being active in sports, I thought a favorite shirt number had significance, that’s what major league ball players usually did. Their superstitions cause a lot athletes whether school, recreational, or college players think a special number help the athlete play a better game. Whether or not it does, that’s up for debate depending on who you ask. I was always number 7 because that’s the date I was born, I gave it up when I started playing softball as an adult since someone else wanted the number, which was fine. I’m easy going like that, I try to accommodate & help others. That’s really what life is all about in my opinion (I have some really terrible qualities, but this is my blog so I won’t slam myself too bad). Servicing others was a trait I learned in Girl Scouts & youth group. We were always collecting items for those without, picking up trash along side the road (this is where I got my largest scar), or visiting those in nursing homes that didn’t have family or friends. That last one struck a cord with me early on, I guess that’s why I have a soft spot for the elderly & older population. Most of my friends are way older (lol) than me, at least the ones I talk to on a regular basis. I’ve seemed to always have a connection with older folks.

The number 18 in a numerology sense is known to bring good luck. Some say living at a residence with the number 18 means you will prosper. I’d say living with a hellion (a.k.a. Jack) that is 18, means we will be miserable that has proven to be true time & time again. It wasn’t until the last three years that we became completely & utterly miserable in our homes. Years prior to current day, we didn’t lead such sad lives. Coleman & Ava needed us more for activities like for showing goats, 4H involvement, dance, sports & such, plus, Jack was more manageable physically & more compliant with requests & no where near as needy or strong as he is now. Lee & I had date night nearly every Saturday, that’s now changed. We rarely go out at night because he tends to have seizures during the evening hours now & gets more problematic at night, so we feel like at least one of us needs to be at home with Jack now in the evenings. Our anxiety is always through the roof if we ever go anywhere together. This has changed our lives tremendously. Marriage is tough for normal people, marriage can be a total train wreck for those with a special needs child, especially a difficult one like Jack. Often the sole care falls on one parent which can form resentment. We don’t have resentment for each other, only for our situation. We are ill & short with one another most of the time & probably come off this way to the rest of the world. Simply because Jack is 18, the world changed for him. In reality, turning 18 created an excuse for him to act the way he wants to & get his way. The other night, Jack requested yellow cheese to be brought to his lair. He loves to eat shredded cheese out of the bag. Knowing he wouldn’t eat the whole bag, I brought him the bag & a bowl to pour it in. He refused the bowl because he was 18. 18 year olds can eat like they want to & don’t need to be told how to eat. I tried to explain to him why it was nasty to eat out of the bag, he of course argued with me. I should of known better & not even suggested a bowl, what was I thinking? Y’all do not know how bad I wanted to cuss him out! After all that arguing he did, the cheese sat on his bed all night long, untouched.

Jack’s sleeping patterns have been disturbed for the last week. He’s been waking up shortly after falling asleep, in the middle of the night, & very early. Often times, disturbed sleep can be a predictor of an upcoming seizure, as well as are irritability & lack of appetite. The night after the cheese incident, I had already cooked supper. Jack states out of the blue that he wants the family to go out to eat. I tried to explain to him I had prepared a roast, green beans, & a kale salad for us. He got very upset, kept repeating “out to eat, out to eat” over & over. After I ignored his requests, he slammed his bedroom door. I called reinforcements in because I did not know what Jack would do next. When he doesn’t get his way, he often becomes violent. Lee’s Aunt & Uncle came & hung out with Jack. I knew I needed to stay away for a while, so I stayed in the living room while they visited. Jack seemed to be in a good mood after 30 minutes had passed so I went in his room. He came out & said he was upset with me. Talking very loving to Jack, I hugged him & told him I loved him & didn’t want him to be upset with me. Then I asked if he wanted us all to go to the Springhouse (a local pub), he agreed & was fine. Not knowing what was going to occur, Daddy came & picked up Ava. My parents were supposed to come eat with us, but we were afraid that would be too much. So no one got to eat the food I prepared. Jack wouldn’t of eaten it anyway because he doesn’t eat home-cooked food.

After getting home from his night out, Jack held me hostage in his room making me watch Scooby-Doo. Not that I don’t adore the gang, but I have other things I need to do. Jack is oblivious to it all except his needs. He thinks I have nothing to do but be his servant when I am home. Fetching this & that, watching whatever he’s in the mood for for the 100th time, listening to him sing, what have you. If he’s feeling adventurous, he’ll come into the living room with the rest of us, take the remote right out of our hand & turn the tv to whatever he wants, not caring about us at all. Not only does this disrupt our evening plans, but we are forced to leave the room except Lee or myself. One of us stays in there with him. If we don’t we are all targets, Jack sticks his feet all over us, even our heads, takes our blankets away, he’s just plain mean. This interrupts the family time we were trying to have with each other. This impacts our marriage & family unit. We are unable to share things about our day or enjoy each other’s company. I’ve never been in an abusive relationship with a partner, wouldn’t stand for it, but I do know what it is like. I’ve heard stories of women feeling scared to say no to requests or demands no matter how ridiculous or foolish they may be, walking on eggshells, apologizing for things you didn’t even do, afraid to laugh, scared to move, living in fear-that’s me. I am in an abusive relationship with my child, he is the abuser. Jack is the abuser of our home. He rules the roost, he is a bully. An 18 year old child tells us what to do & how to do it. It would be easier to kick Jack out of our home if he didn’t have a serious medical condition. There is no way on earth I would live in this type of fear if he were physically healthy. The abuser changes you. The abuser changes your outlook on life, your relationships with others, your relationship with God, your appearance, your interests, your leisure activities, your attitude, marriage, your motivation, your mojo, & so much more.

The icing on the cake after the above incident happened, I saw a picture of Jack’s former classmates from his kindergarten & first grade year that same night on Facebook. These classmates were all friends of Jack’s in school, he still talks about some of them to this day even though he hasn’t seen them in 10 years. These kids will soon to be graduating, their achievements in school & their personal lives are amazing, success is no doubt in their future & I couldn’t be happier for them & their parents, but I can’t help feel a huge pang of sadness. This should be our son, too. The pill would of been easier to swallow if Jack were well behaved with Dravet. The whole compilation of all the events in one night were too much. Talk about a night of frustration & depression. It’s amazing how one person with the same blood as Lee & myself has changed our lives. He is half of each of us, neither one of us are evil, nor have we done evil acts to bring this type of torture into our lives.

Let me tell you another story, this one is about divine intervention, this is simply an unbelievable story. Lee took Jack deer hunting this past year, Jack was able to shoot his first deer completely & utterly alone. He never once mentioned not being able to not see through the scope on the rifle well until about the first of January, note: he killed the deer in October. Suddenly, in January, Jack had a fit to go to the eye doctor. This was shocking to me because I usually have to bribe him to go anywhere. On the heels of a near outburst the previous night over eating out, I felt it necessary for Lee to go with us to his appointment at the eye doctor. Now there is nothing wrong with Jack’s vision at all, in fact, he has a very sharp eye, eagle eye is what we call him. When the tech & the doctor were asking Jack what letters were on the screen, he totally threw the test. If the letter were a “U”, Jack would say the letter next to it in the alphabet, “V”, a “Y” was a “Z”, which is pretty smart because I usually have to say the whole alphabet to get the next letter! If the picture was a dog, he would say horse even at the largest setting, plus, the dog was barking. It was very obvious he was there to get glasses without a need. The doctor talked to him & Lee about using a different kind of scope & was going to send us on our way without glasses. Jack was getting upset, you could tell by the look on his face. The doctor said no glasses needed & Jack started lightly kicking the doctors stool, that’s when I suggested glasses for the the computer only because I knew he was about to get violent. Thankfully the good doctor followed my lead & prescribed him a set of glasses. This has appeased him for now. The glasses he decided on are awful, but I don’t care. They look like something an 80 year old man from 40 years ago would wear. They remind me of an 80’s style pimp, he just needs a long fur coat to go with his new specs & he would be the John of Ellerbe. This is a picture of Jack & I at the vision center, he is worried to death about what I’m writing on those papers.

Back to the divine intervention part. While we were in with the doctor, one of our Berry Patch girls tried to FaceTime both Lee & myself which is unusual. Lee responded with a text that we were with the doctor. She started sending pictures of a vehicle that had crashed through our fence around the front of our business, she had the description of the people & a picture of the front of the truck, but no license plate. Said they were regular customers & they did not come in to report they hit it, basically a hit & run. Now we were in the next county over from The Berry Patch 30 minutes away to be exact. Jack wanted a happy meal from McDonald’s after his appointment. As we were pulling into McDonald’s, Lee says there is the truck that demolished our fence! And sure enough it was. I recognized both of them, the truck & picture matched our employees picture. I put my camera skills to good work & snapped a few pictures of their license plate so Lee can file a report if he decides to. What a coincidence that these folks hit our fence & we end up finding them! Never ever do we go to that side of the county unless someone has an appointment with the eye doctor & no one has had one in years, nor do we ever go to the McDonald’s there. I’d say that is a divine tale of divine intervention! The absolute craziest things happen to us!

So there you have it folks, our life synopsis. I don’t think any of you will be surprised by any of this. Every single one of these stories are true & have happened back-to-back, from one day to the very next day to the very next. We can be experiencing the absolute most heartbreaking day & there God is surprising us with something like the fence ordeal to take our minds off of our misery. The next step in this whole journey with Jack as I call it, is to get Jack’s psychological evaluation sent to the social worker, from there I am guessing we will being looking at homes. It’s so easy to type but so very hard to imagine. I guess the old saying is true, misery loves company-but in our case, misery loves crazy. Until next time!

Author: dravetsyndromeblog

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