I’ve never been one to go to bed before midnight. When Lee & I were courting (no we aren’t like the 19 Kids & Counting people, just country), he would always tell Mama & I that he had never seen people wait til midnight to start a project. I might start cleaning out a closet, type of paper, Mama might start making a dress or start a crafting project, all after midnight. Our second wind always hit after midnight & Lee would have just woken up from a three hour nap! He & I are wired so differently in the sleep department, although, Jack is slowly working on converting him to staying up later & later, unwillingly of course-that & Tony Soprano! We started watching The Sopranos back in January due to the urging of a friend. If Lee & I ever did get to watch tv together, it was something like Below Deck, Cougar Town (our fave), a food/farming show, or an occasional movie that often took literally two weeks to watch because of the time length. We are only on season three of the Sopranos, four months later! We can’t wait for Tony & his psychiatrist to get together…we hope!
I recently heard a term I had never heard before, revenge bedtime. I thought it meant possibly smothering an obnoxiously loud snorer of a husband with a pillow after years of pure torture, boy was I wrong! Revenge bedtime fits me to a tee. As I explained above, nighttime is when I start stuff, or possibly relax. I talk to two people on our landline phone only, Mama & my Aunt Dot, oh & an evil man from Social Security. This is almost every night & usually when all in the house have retired for the night, unlike my stupid-head that stays up til 2am every night. I also watch one of the Real Housewives shows, QVC or HSN, or read. I feel like I owe this to myself. The definition of revenge bedtime: doing things for yourself & yourself only after everyone goes to sleep. If you’re a Mama or a FHOH, you can relate. Doing these things makes me feel like I have a little peace in my soul. I make a claim everyday that my stupid-head is not going to stay up til 2, I will go to sleep when Jack does, but every single night, I sit or lie in the splendor of tv or a magazine. How big of an idiot am I to do this to myself nightly? A chronically stressed person such as myself needs sleep, but I’m not tired, at least at night any way, I save that strictly for daylight hours!
Not too long ago, there were mornings Jack didn’t go to sleep until 4 or 6am, most nights, he’s asleep by 11:30, & sleeps til 2pm now. My how the tables have turned. Do y’all remember how scared & terrified I was of Jack only last year? I prayed hard & y’all prayed hard that the violent streak that took over Jack would be removed from his body. Jack is doing wonderfully seizure-wise. He hasn’t had a seizure since January when he had his last violent outburst. It was then that we made yet more medication changes. But last summer, Jack fell into a low cycle. Not eating, not drinking, lack of zeal for things he once had a strong interest in. The chatting he once lived for is no longer on his radar. The online dating apps he partook in, no longer holds any zest. Watching inappropriate things doesn’t interest him any longer. I have to wonder if all of this is part of God’s bigger plan. The prayers for the violent acts to stop & crude behavior to stop I am claiming! But are the answered prayers a result of his lack of sparkle in life? I can’t be sure obviously, I can’t question what God has directed Jack’s body to do. We are truly living what a catch 22 is. Caught between a rock & a hard place is an appropriate title of one of the many books I say I’m going to write. A friend said to me that the things that have happened to Jack as of recent are both a blessing & a curse. She is right. A blessing that we no longer feel threatened, scared, chronically worried we might say or do the wrong thing to set Jack off. A curse in that he really just lies around all day.
So what is going on with Jack’s health is much of the same. Not eating a lot but more than what he has been, sleeping a lot, lying around a lot. We had a telehealth visit with his neurologist last week. His doctor suggested we talk to a nutritionist, we are also trying to get home health to come into the home to do some hydration therapy on Jack, outpatient bloodwork is allegedly going to take place (all if Jack agrees), & a plan to continue to taper/wean certain meds to make for a less out-of-it Jack. We were successful at weaning one of his behavior medications over a month ago, but it has not made any noticeable impact at all. It’s absolutely amazing how the medication this time last year was not affecting him at all, now basically the same doses of most of his meds could now be too much. I didn’t realize because of Covid (which is also another book title of mine) how much home health was backed up. After calling several agencies, we learned that they aren’t accepting new patients. I guess like all jobs now, businesses including healthcare are lacking employees. It certainly seems like things are so much harder now than they were last year prior to this Covid mess & I’m sorry if I offend you, but a lot of the suggestions & doings regarding Covid are downright stew-pid!
Last night & nearly every night this week, we’ve had a time with Jack & his bedding. A few months ago, I got Jack a new mattress. He spends nearly 99% of his days & nights in it & he needed a new one. He loved his new mattress, thank the Lord because he is one hard fella to please. This past week, it has seemed like Jack has been purposely sabotaging his new mattress. This is not our first rodeo with sabotages, Jack has done this with many an item that he has not fully been pleased with. So for three straight nights in a row, he poured water on his bed sheets at like 11:30pm. First night, I chalked it up to an accident, after the second night, I knew better. This meant I had to wash his bedding three days in a row. Fourth night, Jack peed on the bed. This was also intentional. After some pressing, it has come to light that Jack wants new bedding. Instead of talking to us about it, he figured he would ruin his & we would be forced to purchase new. What a cunning kid! Four nights in a row, wet bedding. I have been one tired Mama. Couple this with revenge bedtime & it’s a recipe for disaster!
The busyness of our season has begun strongly. I thought that busyness would bring about a new sense of energy to me, but I have been proven wrong thus far. I am tired in a different way than I have ever felt, like mentally & physically. I’m not myself & wonder if I will ever get back to the old Amy. My body feels out of shape, as does my mind. Just one example of the hurdles I have to battle every day with Jack. I about lost it on a man from the Social Security Review office recently, which he deserved every bit of it & more! What’s the one thing we are instructed NOT to do? Talk to people over the phone about social security, especially if the person is a foreigner. Man calls our house & leaves a message for Jack stating he is from the review office & needs to talk to Jack. Of course I am suspicious immediately. I call him back & left my number & told him to call me with any questions. By the way, this man’s voicemail is weird & super creepy. We finally spoke, I asked how I was supposed to know he was really from Social Security & the man got extremely offended & started yelling at me. I then reported him, but was assured this nutcase was real. I cooperated but was still treated like a piece of poo by this man. He told me Jack was going to have to an updated psychological evaluation, when I told him he had one, he screamed at me & said not from when he was four years old. Once he let me speak, I informed him that it was done last year. After faxing the evaluation to him, he then called to inform me that it was expired by two months & all he wanted to harp on Jack’s ADHD medication, not his actual diagnosis of a life-threatening disease that has caused irreversible physical & mental damage. He wanted me to take Jack to an appointed place for an evaluation, the one from last year showed Jack’s IQ at the level of a four year old, did they honestly think he could catch-up in a year & two months? I told the man that Jack’s health has significantly changed & they would have to send someone to our home to evaluate him if that’s what they needed. He claimed they did not do that. I showed my true colors to this man. If the Biden administration can send out abortion pills in the mail to women because of Covid (book title strikes again), then they sure as hell were going to send someone out to our home or a telehealth visit for an evaluation. I’m not sure what happened, but I got a letter in the mail a few days later stating that Social Security had decided Jack was still disabled…how very kind of them! The diagnosis of Dravet alone should be enough for these people. Now I know quite a few people on disability, we all do-whether or not they truly are, not for me to decide. But I can guarantee you none have been as harassed as we have since Jack was accepted in the SSI program at age 9. My goodness, we lost our home because we could not keep up with Jack’s medical bills, lost a vehicle, lost our self-worth. We owned a home but had to move into a two bedroom rental for five people, Ava slept in the laundry room. There are people that have it way worse than we ever did, but it was hard on us, a hard pill to swallow.
It’s now 2am as I close on this blog. I’m trying something new with Jack’s medication regimen. I’m not giving his nightly medications until 1:30am (pm meds in the am-we live an altered life for sure) to try to give him the full 12 hours spacing from his am to pm meds he needs to see if that will make a positive impact on his body. I feel like the medications were being given too close together. This only means my revenge bedtime process doesn’t start until 1:30am now, which means a 2:30am slumber time, or whenever Jack drifts off. As I lie in bed listening to the snoring of Lee, laughing with my girls (the Golden ones), I can only think this is the part of my day that is complete & utter bliss. It is the only time I feel completely happy. I don’t have anyone to answer to, I am relaxed, & our bed is so super comfy. I’d say revenge bedtime ain’t so bad…until those durn hormones wake me at 5:30am & I can’t go back to sleep & it all starts over tomorrow.