I know it has been a long time since I have written anything. Apparently that is a trend with me. So just enjoy this bit of writing that you are getting and know that I appreciate you checking it out.
At least one day a week we try to do family movie night. More often then not it ends with everyone’s nose being buried in their respective devices and the kids headphones being back on both ears. Last night was different though. After doom scrolling through twitter I was noticing a trend of people that I respect praising this movie. And not just a few, it seemed like everyone. I was getting some serious Stranger Things vibes as far as the adoption rate of this movie. So, without warning I waited until the episode of Lemony Snicket that we were watching was over and I switched it without telling them what I was putting on.
Out of the gate this movie has my attention and my kids are starting to get interested as well. Kyler, who typically leaves the room while the opening title sequence is still rolling has taken his headphones off of his ears and is commenting on the movie.
30 minutes later I am laughing so hard that I am coughing. Kyler and Nevaeh are fully invested in this movie and actively trying to get everyone else in the house to come watch it. Sadly, Avi and Misty have other pressing matters they need to take care of, but have committed to watching it the following day.
Now, I should be clear about this, I have never seen Nevaeh walk up to another one of the kids and tell them they need to come watch a movie. It is that amazing.
Could it be because we relate to it because of the road trip aspect? Or the fact that Misty and I are starting to face the reality that Avi could choose to go to a college away from us? Or could it be the ultimate struggle of trying to get everyone nose out of their devices? Who knows, regardless it was good and it gets a “You have to watch this movie”.
So, life has been pressing on. It does not go on hold or on vacation for anyone or anything. Avi is still Avi. That kid is an absolute trooper. On Thursday night we had to sleep deprive him so that he could do an EEG on Friday morning. The kid made it to until 2:30 in the morning before he passed out and he has never complained about anything.
Some things have changed in the interest of being able to help Avi. We have installed cameras through out the house in the hopes that we catch an episode on them and we are able to use that to help the doctors know what is going on. A side benefit to these is it helps keep other kids honest about what they are doing or supposed to be doing. I didn’t think I would be the guy who installed cameras in his house, but here we are.
Misty and I are still struggling with this whole situation. It is bringing up a lot of negative emotions around the first time he had seizures and what we were dealing with all of the things that come with that. Everything from family saying that we were just not loving him enough to strangers coming to our house and making several hyper religious declarations. Then there was also the people that were negative and hateful. Lastly there was friendships lost because they did not know how to be supportive of us. We do not blame them for this, but know we mourned losing those friendships as well.
Now, like I said, life presses on. Misty and I are still in school and it is finals week for us and neither of us have been in the right mindset to do anything with that. So I will be spending today cramming all of my schoolwork into today. Misty’s grades are good enough that she could bomb and and still get an A. I am damned proud of her.
Nevaeh, my beautiful little bad ass. She got her green belt in karate this week and is still pushing hard in karate. The virtual sessions are bugging her, she really wants to spar in person, but she is killing it. She is loving drama and French class. I got the pleasure of showing her how to do “flybys” of the Eiffel Tower using the maps app on her iPad. She had to dress up for some drama class project for school and wore the above dress for the entire day because she felt bad that she could not wear it out and about due to pandemic. She is truly beautiful inside and out. We could not be more proud of her.
Kyler, he has been struggling with all of the recent changes. Not only is there the stuff with Avi and the cameras, but something that was in the works before all of this began was me changing my work schedule so that I could be there for his distance learning. With his ASD he really has some school issues that can be violent and destructive. It is manageable and will eventually go away, but right now he just needs some additional help and that is what I am here to do, help him become the good man that I know is in there.
Now, something about Kyler a lot of people miss is he is actually a incredibly compassionate person. He is also always looking for the next hustle. Sometimes those things work towards a common goal.
For example, he found out that people will pay real world money for pets from the game “Adopt me” in Roblox. So he has been working on it for months and coming up with ways to rope the family into working towards getting these pets so we can sell them. As an adult I look at the time vs effort reward ratio and I do not see that real benefit, but he is dead set that he can make thousands doing this.
This past weekend he revealed why he has been really pushing for this. He decided that he would follow in his big brothers foot steps and take Japanese as his second language in school. And he wanted to use the money from his hustles to take the family on this massive Japanese 3 week vacation. He was looking up flights and rental cars and packages. He literally talked to me for 3 hours outlining the details of it all yesterday. It was amazing to listen to.
Then one of his big schemes grumbled in the later hours of the day as the reality set in and he absolutely lost it. Before bed he went through and deleted all of his online games because he thought he got scammed. When in reality it was a built in limitation to prevent people from exploiting the system and disrupting the economy of the game. I felt so bad for him.
So today I am going to sit down with him and show him the realities of planning a trip like that. Complete with budgeting so that way we can save up for it. I do not want him to lose the passion he has for trying to help and find new things. As well as I want to show him that even though one part of a plan fails, it doesn’t mean that the whole thing needs to be scrapped. It just means that the plan needs to be re-evaluated and fine tuned in order to accommodate the change.
Here is what the upcoming week looks like for us.
I installed a bunch of Assassin’s Creed games so I can use the tourist modes to show Nevaeh the world virtually.
Avi’s EEG results will be back in and we will be able to get a better idea of what this is going to look like.
Planning a massive vacation for the future with Kyler and stressing the importance of a budget. (I am very excited about this).
No college for me this week!
Ok, I need to get to my coursework. Have a good one folks and know that this helps me.
I know I keep stopping and coming back to my various writing platforms. However, I think I am going to use this to deal with a fairly significant issue that is happening in my life that is going to be with me for the remainder of my life. So there will be plenty of content.
As I explained in the half-birthdays post we had almost lost Avi due to seizures. Well, guess what? The seizures are back.
On Saturday October 3rd, 2020 I went to go get my phone charging cable from Avi. Now, Avi and Kyler share a room. As such space is limited, so they have a bunk bed. Avi has the top bed. As I am walking in their room I notice Avi laying weirdly on his bed. His head (face up) and one of his arms was dangling off of the edge where the ladder is. Those of you who have hung out with him know that this kind of behavior is not unusual so I did not think anything of it.
I start to make fun of him a little bit about it, because this is the kind of household we have. Just as I think about taking a picture of him like this so that I have some evidence for his future spouse of his awkwardness some things start to kind of snap into place.
I am not noticing chest movements.
His skin is a little ashen colored.
His glasses are not sitting right on his face.
He has not moved since I walked in.
Queue panic mode. At this point I am thinking he is dead.
I start to say his name repeatedly, escalating in volume. I repeat his name about 3 times before I manage to cross the distance of the room. One last ditch yell in his face yields no response. Then I start to shake his shoulders and he becomes responsive.
He slowly pulls himself up fixes his glasses and goes back to watching a video on his phone as if I am not there. Pulling all of my skills at self discipline I put on a calm face and ask him if he was asleep.
He turns to look at me as if he had not realized I was there. And said that he had just been watching the video. I then proceeded to ask him if he felt tired, or was feeling weird at all. “Nope” and goes back to watching his video.
So, I grab my charger and leave the room. As soon as I am out of eye shoot I ran to Misty and explained what occurred.
Kyler also revealed that he had been in the room an hour earlier and Avi had been in the same position, but he had thought he had been asleep so he didn’t bother him.
Over the course of the next two nights and a visit to urgent care it looks like he is having absent seizures. Now, we had been told to expect the seizures to come back with puberty. So we had been looking for petite mal or grand mal seizures. What absent seizures look like are more “spacing out”.
Knowing this now Misty and I have been thinking about his past behaviors. Avi has been “spacing out” for a long time. We just thought it was a trait of his ASD combined with being a teenaged boy and always distracted. We never really dug into it. So we talked to him about it to find out a little more from his perspective what he sees and feels during these moments. For him, it is like he is losing track of time. One minute he is sitting at his desk preparing for school and the next minute his is 30 minutes late for school and he is not sure how that happened.
So the positive is he is not aware of anything abnormal happening. He feels nothing and for him he is able to pick up where he left off. More then likely this will be able to controlled via medication and therapy. We have appointments starting to roll in today to get this process going.
Emotionally, we (Misty and I) are really struggling with this. There is a lot of unnecessary guilty feelings. We know we have done nothing wrong and not catching this sooner is not our fault. That does not negate that these feelings are there. We keep telling ourselves that we are too busy, maybe if we had paid more attention we would have caught it sooner. However, the reality is we would not have caught this any sooner. I might write more on this later as I have a chance to process this.
Anyhow, I have rambled long enough. But this was therapeutic for me. And I should be clear, this was for me not you the reader. I do not mean this to be a negative thing, but this is more of a coping thing for me. If you got this far, thank you.
So, in our household we celebrate half birthdays. I know, we sound like overly indulgent parents. However, there is a really sad story associated with why we do this.
Back when our oldest boy was born we were over the moon. This little bundle of joy was everything a parent could want. 2 ears, 11 toes, 14 fingers, etc… Things were progressing. He had an awesome laugh. His smile lit our lives. You get the picture.
Now, I am the oldest of 8, if you include my step siblings. So I have been around kids my entire life. As such, I might be a little more perceptive into a child’s behaviors. I started to notice something about my little man. It just tickled at the back of my mind. Every now and then he would look up and to his right. It would only last about half a second. But it would happen a lot throughout the day.
At the time I was working from home, so I was always around the little guy and I could make my own schedule. So, I scheduled an appointment with his doctor. Took him in and explained what I was seeing. I was pretty much told to catch it on tape because the doc wasn’t seeing it and I was just being an over protective parent that is reading into things.
Ok, fair.
So I took the boy home and put a camera on him. Within the next day I had video evidence of what I was seeing. Here is the video. It has almost 100k views.
If you watch closely you will see that in the span of roughly 1.5 minutes he does this movement four times. He is also raising his arms.
So, armed with my evidence I take my wife and son back to the doctor. At this point I am not sure what the hell is going on, but I am nervous. My wife is optimistic. My boy is drooling and smiling.
In walks the doctor. I go to play the video.
He never saw the video.
My son had his first, of many, grand mal seizure.
The environment immediately changed.
The doctor scooped him up and ran out of the room with him. My wife and I are freaking out. We had no idea what had just happened. We our boy just… spasm and the doctor took him away in a rush.
It felt like an eternity, but in reality I am sure it was just a few minutes, but the doctor eventually came back. With a nurse holding our boy. I am sure we looked terrified. Because we were. And we had valid reason.
The doctor assured us that he was ok and gave him back to us. He explained what had happened and ordered a bunch of tests.
Over the course of the next few months we learned that what I had video taped is what is called a petite mal seizure. My boy steadily kept getting them. Up to 200 a day, with a few grand mal seizures thrown in. No one had any idea what was causing them. And it was a mixed bag of support that we were getting from those close to us. One relative just said we were not loving him enough. Another flat out did not believe us. Friends checked out of the friendship.
We got it, but it still hurt.
And all this happened before he was six months old.
Finally, we were told to not expect him to live.
I still fucking tear up. I am now. No one will judge you if you are as well.
So, the world faded to grey.
There was less light in it. Barely any color. Food was bland and very little joy to be had. Every one else’s world was progressing, but ours just stopped.
So we decided that if he wasn’t going to live he needed to experience what he could of life. At the time we thought we were being original. We celebrated his half birthday. We got him a little cake and had a little private celebration.
Over the course of the next few months things further de-railed for us. My job at the time was maintaining bingo machines for the various bingo halls in the states of Colorado and Wyoming. The majority of the time I was on-site I was alone. So I brought him with me, because to hell with being away from him for an instant.
My medical coverage wouldn’t cover the shots that were keeping him alive. So I talked/cried about this to the secretary I had to submit mileage to.
Being an awesome person she sent out a company fundraising email. Which got her in trouble. And earned me a personal visit from a VP. They flew out to talk to me. I didn’t know what about at the time. I was only worried about my boy.
So she took me out to dinner. In the middle of dinner she told me about the fund raising initiative. I was incredibly flattered and humbled, up until she mentioned the trouble the secretary got in. I still remember her exact words, “We only fund raise for these kinds of things once everything is done. You need to make a choice right now. Spending time with your son or your job.”
I gave notice.
I had no prospects. I had nothing lined up. But I was not going to miss time with my son for a fucking job.
I don’t regret that decision, but it helped speed up the inevitable. We lost our house. Declared bankruptcy. Lost a car. Everything was just gone. And we still needed this life saving medicine. That cost several hundred a shot. And he needed two shots a day
Walmart helped us out with a few doses. And evidently the doctor that figured out what was wrong with our son figured out a way to get the medicine converted by us administering it to him at home. I can now give shots in my sleep if I really have to.
As far as what was wrong, it was something called West Syndrome.
Once we figured that out we got him better. The world started to get some color back and he is a healthy teenaged boy in Karate class right now as I type this up.
We are still recovering financially from this ordeal, and I suspect we will never fully recover.
My previous employer no longer exists. I will never lose sleep over that.
And that, in a very long post, is why we celebrate half birthdays. We never know when the last birthday will be.
You know, these challenges are becoming incredibly taxing. I would really appreciate it if we could catch a break.
So, the reason for the title….
Now granted, we needed to change the tire anyways, we are just not in a financial position to do that right now.
Can I start a go fund me to help catch up with things? Not serious, we’ll maybe a little. I mean, I hear about people doing that all the time. However, I feel like that should be used for medical things. Not “I am down on my luck and could use a break “. Maybe I am wrong. If I am, let me know.
So, the reason for the title of the post is that 2 different living toy movies came out this past weekend. Toy Story 4 and the remake of Childs Play. Now, like any self respecting parent I went to see Childs Play.
Now, if you saw the original you remember that this is a horror film. Well, I am not sure the remake was that. Laughed throughout the majority of the movie. I mean, sure there was a lot of gruesome death and the movie played into our fears of the evils of technology being cloud based. And lets not forget the creepy property maintenance guy that should have had a background check done on him! BUT, the way they presented everything had me laughing more then anything.
When they were trying to teach Chucky how to make a scary face the animation was so bad it was comical. When there was a fruit involved murder, just the way it was presented was off the walls funny.
I am not going to spend more time on that because I will end up giving stuff away. Just know, I spent more time laughing then anything else at this movie.
Now, something else notable happened this weekend, I had to take my CPAP machine back so they could look over the data it saved about my sleeping issues. Now, I know a lot of people say they sleep better with these things. But I was not getting any more sleep then I was without it. And I kept the mask on most nights. Out of the 8 days I had the machine, I only tore it off one night.
Maybe they will figure out that I need surgery for this (which I am not opposed to) or they will tell me something else.Any way it goes, I am glad to finally be taken seriously about my sleep issues. They are killing me.
So, something else significant has happened since my last post. And in all fairness it deserves it’s own post, but I am already in this one. And just like Harold and Kumar, I have already gone too far and it is too late to turn back now.
This past Wednesday was my wife’s and I’s 15 year wedding anniversary. I know a lot of people did not expect us to make it this long. I am sure there are times when we didn’t think we would make it this long, but here we are. Still in love, still only want to kill each a few days a week. Three kids later. We have seen each other at our worst and at our best. We are not the same people that we were when we met, but if we were, I would say we were liars. People grow and change. We have chosen to grow with each other.
Note the choice part there. Marriage is a choice. At least for us it was. And every day we wake up and say, “Yeah, I still want my life with that person.” We struggle, but we never give up on each other. We are very fortunate to live in a time where we can be our own person and have this amazing life together.
I look forward to the next 15 years.
Ok, I have rambled enough. Let’s recap. I talked about the movie I saw this weekend, my sleep issues, and my wedding anniversary. I am sure I could toss in more in there. Like, Misty is rocking her college courses, our water bottles got stolen while Misty and the kids were at Hurricane Harbor (I was working), Nay and Kyler are killing it in karate, Avi and I are re-watching Avatar together, and I created a new team fitness challenge at work for peeps. But then this would be a much longer and rambly post.
So, as I have complained about before, I am averaging 4 hours of sleep a night and it has caused me a lot of problems.
Easy to anger
Exhaustion
Emotional
Random bouts of falling asleep
Lack of interest in things that I enjoyed before
Depression
Unable to read more than a paragraph in a book that I am interested in. The focus is just not there.
Etc….
I do not remember the last time I woke feeling refreshed or that in those 4 hours of sleep I don’t wake up at least 3 times on my own.
As a result I had a sleep study done and it turns out I have sleep apnea.
Now, I will admit that my first thought was “So what? Give me some pills and we will call it a day.” Turns out this is not the appropriate response.
For those that do not know, the simple explanation of sleep apnea is that you stop breathing while you are sleeping and your body wakes you up so that you can breath again. Now, you can not be breathing for a bit before your body triggers this.
For me, that sounds annoying at the worst. Turns out, that is not the right thought process. That lack of breathing and your body thinking that you are choking places a lot of strain on your body. It can lead to things like heart attacks.
Look, I know the body falling apart is what is supposed to happen as you get older, but I did not expect it to happen this soon as well as me needing to look like Bane just to sleep at night.
The appointment for that to happen is not supposed to be for a few weeks, so just a little bit longer until I can actually sleep through the night. When that happens I will make sure to post an update. Until then, maybe avoid me because I may not understand the words that are coming out of your mouth.
Well, I didn’t delete my facebook account, I just deleted the app. I have several third party sites that utilize my facebook account. So it is easier to just do what I am doing with Twitter and ignore it.
Now, with that being said, sleep is still an issue and I do feel a little bit of a disconnect with my family and friends. I have no idea what is going on with any of them. But you know what? That is ok. If I really need to know something I can just ask them.
Also, I experienced today something similar to the environment I am trying to avoid with the social media sites. I was in a team chat with my team mates in my texting app. There were no kids and it was by no means official. It was supposed to be a safe place to share things that we didn’t want on the work network. You know, building rapport. Which is hard to do when everyone works in other parts of the country.
I posted the following picture of iPhone background with the story of Avi, who is 13, seeing it and laughing his ass off.
Apparently that was inappropriate and I was reminded that some people let their 13 year old use their phone and go into their messages. This person also seemed very surprised that I would not let my kids use my phone.
I promptly left that room. Look, I am an adult, with a extremely dirty sense of humor. This picture is about as tame as it gets on my phone short of pictures of my kids. So if that is too much for people to handle, I don’t need to be associating with them. I have to censor myself with a lot of things and I no longer have enough fight left in me to add more to it.
Interestingly enough, I was immediately invited to a room that was created as a result of that conversation where it was no holes holds barred. Which is much more appropriate for me. As a result, in one hour I have felt closer to my peers then I have in the 3 months I have been in that other chat.
So, I know I have not been the best at updating this. Part of the reason for that is I was updating facebook more often. And now I am deleting my facebook account in a few days.
It seemed like the past three years facebook has become a hot bed of racism and sexism. I knew it was bad, but it seems to have gotten worse. Everyone gets offended by everything and everyone is very vocal about everything. Before there were shades of grey (more than 50) and now, I think I can count on one hand the number of friends that fall into the grey category.
So, I am deleting the facebook account. I left twitter three months ago. The account is still active, but I literally never check it. Occasionally I will log on to find out if xbox live has gone down, or what the next games with gold is.
Well, around the time I gave up twitter I also had a breakdown. Apparently it had been building over the past year and I did not see it. Misty did, but she thought I had it under control.
The thing about the mind is it can play tricks on you. This is not the first time I have broken down. Back when I was in the military I was married to a different woman and we had two very young children. As young couples in the military do, we fell apart. To the point where she took the kids and I did not get a chance to say goodbye. Now if she was going to be in the same area, or even the same state, it may not have effected me as much, however, she went half way across the country.
Shortly after they left I started hallucinating that the kids were running up and down the hall. I knew they were not there, but my mind was telling me otherwise. This led to a serious depression with suicidal tendencies. One of my peers in the military caught on and informed my supervisors. I was immediately taken to the hospital and evaluated. I was treated for several months and learned several coping skills to keep the depression at bay.
Fast forward to the present.
For the past year, my subconscious has been steadily tearing down the protections I had setup. I could not see it and Misty was kept in the dark. I can probably trace this bout of depression back to several failed promotion interviews. And when I say several, we are talking 17+ interviews. And when I asked for feedback on what could be improved to increase my odds for future positions, I would either get no response or incredibly vague answers. I started to fall into job burnout. I had no clear path on a promotion. I have been in my current position for 6 years and I feel like I have no options for future growth. I honestly feel like I will be in this same position until I retire or am let go.
How this round of depression was discovered was I had sent a email up the chain of command about something I felt was a serious injustice for me and several other employees. Several meetings and some very tough conversations later. it was agreed that I needed to take a leave of absence and get some help.
Now I have been going group sessions several times a week and I started medication again. I am now a lot better then I was 3 months ago. Better living through chemistry. I will be going back to work soon. Although I am still suffering one particular aspect that I very concerned is going to impair my ability to do my job.
And that is sleep. Since I have been away from work I have been getting an average of 4 hours sleep a night. And I do mean average. There are nights where I am only getting 3 hours of interrupted sleep a night and other where I am getting 5 hours of sleep, also interrupted. And all of this is with prescription sleeping pills.
A lot of the time I am incredibly dizzy and I have a lot of issues focusing. However, according to all the doctors, that even though work will cover the time off, the doctors are not willing to give me the time off to work on this.
So I have a lot of fear that I am going to go back to work and not be able to perform my job. Which will ultimately lead to me getting fired. Which would force my hand. I am really trying to hold off on switching jobs and losing out on the benefits that I have earned over the years. I need those benefits for my family. So, until I can find a way to provide for them, I am going to do whatever it takes to continue to support them.
Well, this has gone on long enough. I had not intended for this to be a novel. But hey, this is my blog and I can write about whatever I want.
Until next time, peace and remember that everyone is fighting a battle that they may not win. Be good to each other and lift each other up. It is my belief that we only have one life and that there is nothing beyond this. So every moment is worthy of kindness and compassion. Think before you post that hate filled comment on social media. Remember that no matter the race or sex, everyone is equal and worthy. Everyone makes poor choices, some more than others, but it is only helpful to lift each other up, not tear each other down.
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