The Hex

Most people awaken to the sound of an alarm clock set to a staticky radio station or the annoying beep of an alarm. Saturday morning, I was startled to death not by either of these, but Jack! Once Lee leaves in the mornings, he locks me inside our bedroom for safety purposes. Jack runs out of his bed at 8:15am & tries to kick the door down. I had just fallen back asleep from the noise the door makes when Lee locks it & boom, I thought someone was breaking in! After jumping out of the bed, Jack had already made it back to his bed, threw the covers over his head & went back to sleep. Was this a moment of sleep walking? Lord knows I hope that’s not something else new we have to deal with, I really feel it was his mischievous self playing a prank, he then ran back to his bed pretending to be asleep & fell back asleep in the process. Trying to kick down doors is not unusual for Jack, he often tries to be a Power Ranger whenever there is a closed door & slams his foot or body against the door-hard! Jack honestly thinks he is an actual Ninja…in some ways he is!

Not only was the above startling event just one thing that occurred on the same day, it was the first of many crazy things. I didn’t get to attend a really good friends surprise birthday party because of staffing issues at our business, this was even after I thought I had it planned out so well. Then another employee had a slight crisis & had to leave. An hour after that, someone left a small baggie of a white powdery substance at the cash register of our business. We have no clue if it was the contents of a teenagers Tide Pod, cocaine, or meth! There is some old Sicilian grandma out there that Lee or myself has double-crossed that has put a hex on our family & business I am sure of it! My famous saying & possibly one day my tattoo-“it’s always something”.

Jack monies us to pure death. I have to hide my Avon books because there would invariably be something in there he would have to have. It would be a pointless purchase, just clutter piled up in his room. Throughout the year, I have to sneak out trinkets, old papers, & such so the piles of junk won’t be so terribly bad. His bed at night is a total disaster area. It is littered with Power Ranger knick knacks, food that has been there all day, cords, Alexa, computer, mouse, stuffed animals & more. I feel like cleaning off his bed every night is like cleaning off the trinket/toy table from a rainy Saturday yard sale that wasn’t so profitable. This is a picture of all the bed clutter.

Now, he has gotten into selling on eBay. He sold some sort of Power Ranger key & of course I had to pay for the shipping because he has no money. He’s tried selling things in the past & thankfully he never sold anything until now. It is every single day that he wants something. Whether it’s $1 or more, Jack demands for things daily. Trying to explain to him that we don’t have the means to buy him junk everyday is a worthless task. Jack could break Bill Gates!

Jack had a seizure last week & it has upset his sleep pattern something awful. He was finally in a good habit of falling asleep around 11:30pm & waking around 11:00am. This was perfect! He was only a holy terror for less than 12 hours. Sleep has become an issue since the seizure, not going to bed until 2:30am & waking at 9:00am. In turn, his behavior is worse, sassiness is worse. The doctor suggested we add yet another medication to his already long list, but when I asked my fellow Dravet community, it was highly frowned upon saying it made their kids worse with behavior. Dravet is an evil illness. It shows absolutely no mercy. When Dravet rears its ugly face, it is in the form of such terrible, life-altering seizures in the first few months of life, later moving into such severe, life-changing behaviors that you completely forget the horrific start which were the seizures. We aren’t the only family in the shoes we are in. Many, many, many Dravet families experience the same issues. I’m not the only mother that has locked herself in a room because she felt threatened. We aren’t the only family that can’t vacation together because we live we an actual Dennis the Menace. We aren’t the only family that has considered residential placement for their child because it is too much for everyone. That still doesn’t bring any comfort to the situation, only continued heartbreak. In order for us to even be able to place Jack in a facility, he has to have psychological testing. I’ve had to reschedule his testing twice. Once was due to him having strep, the second reason is due to us obtaining legal guardianship over Jack, our court date fell on the same day as his scheduled test. The center that does the testing got attitude-ish when I canceled the first time, they really got testy the second. But I may have to cancel a third because he could & probably will refuse to go. Not only that, the testing can’t be done all in one day, even after I tried to explain & reason with those nuts his difficult situation, I was like, am I talking with Jack on the other end. Pure hard headedness! People suck!

Coleman publicly made the announcement last week he was accepting a position in Minnesota after spring graduation in 2020, this was after completing a summer internship there. He’s only 19 they say, how can you let him move so far away they say? I say, how can I not? The best motivator for your children is to have a Jack! If you currently have dead-beats living at your home, you are welcome to let Jack live with you for a few days, I promise that will be all it takes to get that dead-beat motivated to work & find a place of his or her own! Jack was a wonderful motivator for Coleman, we are eager to see what Ava does with her career. Although we are sad of course that we’ll be losing Coleman to Minnesota, we couldn’t be more proud. It’s wonderful to see your children blossom into successful people. We will take it any way we can get it! Meanwhile, if you need some motivation in your home, contact me!!!

Author: dravetsyndromeblog

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