Lunar Eclipse Tales

It’s 1:07am the night of the January 2019 lunar eclipse & I’m still awake awaiting Mr. Sandman to sprinkle Jack very heavily with his magic potion. Sleeping pills were given at 10:45pm, nearly 2.5 hours, he’s still wide awake. Ava has the day off of school tomorrow in observance of the Dr. Martin Luther King Jr. holiday. Sadly, she has a dentist appointment at 8:45am, 7:20am will be here before I know it & the “butthead” as I am currently referring to him as, is still wide awake. Having left his room finally at 1:00am because I told him I was going to bed (with hopes he would settle down without my presence), Jack got the space heater that we use in his room during awake hours to help heat due to his lack of moving around. He closed his door & put the heater directly in front of his bed that is made of pleather. After hearing the commotion, I tried to reason with him about the fire hazard that poses with the heater being so close. His response was he is almost 18 & I better plug it back up-hence the name “butthead”. How frustrating it is to be arguing with this child at 1am in the morning when I’m supposed to be in the bed being lulled to sleep by Lee’s snoring. He compromised by allowing me to plug in the heater & leaving it where it was originally (in a safe place).

Jack’s nightly routine has now developed into me watching the 1970’s version of Superfriends with him from 7pm until his sleep medication catches up to with him. Watching Superfriends now isn’t near as entertaining as it was on Saturday mornings when I was 10 years old with a bowl of Captain Crunch cereal in my Coca-Cola nightgown! How I wish things were different. I look back at photos of my younger self as a baby & child & think I didn’t know what I was in for when I grew up. It’s as if everyday since Jack was born 17 years ago has been a day of suffering. Of course there have been many wonderful memories made watching Coleman & Ava grow up, but none of those moments have I nor Lee or even Coleman & Ava been able to fully enjoy due to the stress Jack puts us through. This stress is NOT of his doing I know, but it is very real & present every moment of our lives. Whether it’s the worry of seizures, violent outbursts, getting mixed up with the wrong people online, & more, our lives are 100% consumed by these thoughts if we are trying to make good memories. No joy can be experienced to the fullest.

Just last week while we (the family) were at one of Ava’s basketball games 35 minutes from home, Jack’s helper was texting me nearly the whole time about Jack talking with some even bigger “buttheads” online. They were calling Jack all sorts of names like retard, etc. I was sick. This is why I hate for Lee & I to be out of town at the same time, we never know what is going to take place. It’s so hard for me to fathom that Jack has gotten tied up with such people. For one, he can be a really sweet & caring child, secondly, he is mentally disabled, & thirdly, because he’s my baby. It hurts so bad to hear the vile words these people spew being tossed around to your child like it’s a joke. These people also tell Jack they are coming to see him & ask him to go outside & wait on them or ask him to take pictures of the yard just to mess with him. So not only do we have to worry about of the above, but I’m constantly fretting about Jack going outside & us not knowing it. Life sucks so bad!!!

As I sit here having a pity party for myself, I am also pitying myself for having to take Ava to the dentist. Not because of that, but because ANYTHING I do requires an act of Congress to plan. Lee will have to come home when I leave to stay with Jack until Mama gets here. Then I’ll have to worry about Jack being wild in the morning because he acts like a bull in a china shop. I just want to be able to do things like normal people. I would so love to fall asleep in my bed when I get tired, but no, I have to wait on Jack to fall asleep, clean off his bed, unplug that blooming heater, plug up the monitor that I’m no longer able to plug on his nightstand because he says he’s almost 18. I now have to plug up the monitor behind his clothes basket & unplug every morning before he sees it. What a life! People say, I don’t know how you do it, or put him in a home. I do it because there is no other choice currently. And we learned in December 2017, that placing him somewhere is not easy. Because Jack has both severe mental & health impairments, places are extremely limited. I have filled out more paperwork since Jack’s hospitalization in 2017 working towards getting mental health care than the White House & nothing has still gotten done. I have meetings that are hours long just to get him in the system. My name has been signed more times than I can count in the last 13 months & not one thing has been done & this is with multiple facilities. Having mental health issues is a problem, trying to get help for those mental health issues is an even bigger problem. I get so tired of these meetings, paperwork & signatures & nothing moving forward, but I don’t want something major to happen in Jack’s care & it be questioned whether or not I signed him up for this or that. I’m told by doing all this, it will make placement easier when it comes to that, somehow, I highly doubt that.

It’s now 2:05am. I think it’s safe to enter his room & disarm the thing. Tiptoeing is the way to go tonight. Some doubt the power of the moon phases, Jack is living proof that the moon can change a persons behavioral patterns. All was good with his sleep until tonight. Oh well, Jack is currently on a new music kick, I finally have a child who appreciates the good vibe Jimmy Buffetts song Margaritaville emits. What I would give to be wasted away in Margaritaville! So, while I’m having my pity-parties, at least I’ll have good background music to carry me through. I want to ask also, that you please not share my blog posts publicly, I am always worried that Jack will see them. If you feel inclined to do so, please do it in a private message. Thank you!

Author: dravetsyndromeblog

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

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