Serenity Now!

Where does one go for a little rest & relaxation, typically their home to binge watch Netflix or to grab a nap. Our homes are supposed to be our safe haven, the place you can truly be yourself, be the most comfortable. My current safe haven is inside my car at my home. I hate so bad that I can’t go inside my house & enjoy peace & quite. Jack’s morning a few weeks ago started off rocky. He was awake messing with something throughout the night (I have a hidden monitor in his room), then was up at 6:30am using the bathroom, then back up by 9:30am wild as a buck & running through the house like a Tasmanian Devil! The morning prior he tried to rip my bathrobe off of me. There is not enough coffee in the world to help get me through mornings with Jack. This particular morning, he wanted eggs & felt he could cook them all by his lonesome. As I was giving instruction on what to do, he reminded me that I don’t tell him what to do. 18 year olds don’t need telling anything. Now of course this IS the typical mindset of an 18 year old, most just don’t say it out loud to their parents. So after getting talked to like a piece of trash, Jack couldn’t cut the butter to put in the pan. Think about that a minute. This child who is literally strong as an ox could not figure out how to slice the stick butter to make it go into the pan, important side note, he was using a butter knife (I ain’t no fool). Then of course he needed help, go figure! An 18 year old actually did need my help is what I wanted to say & stick my tongue out at him, but again I reiterate…I ain’t no fool, that’s just asking for trouble. Next, Jack finds a duck call of Lee’s & goes outside in only a tshirt & underwear to call ducks. The temp at that time was around 40 degrees. Jack is oblivious to temperatures, often going places in 30 degree weather in shorts, tshirt, & sandals or barefoot. Then it was time for meds which he refused. It’s getting harder & harder to get morning medications in him. He’s like a bull in a china shop in the mornings & has a grandiose way of thinking that he’s all that & doesn’t need them. All of this in a mere hour!

Each of the above reasons are a list of many as to why Jack is under our legal guardianship, but it is amazing what all he can do. He is too smart for his own good. I kick myself every single day when I think of everything I did to help Jack’s enhance education. Not knowing what Jack had until he was at the age of 6 & even then there wasn’t a lot of information out there about Dravet, I did everything possible to ensure Jack received the best our area & beyond had to offer in helping him develop as normally as a child his age would. There were endless appointments with not one but two speech & occupational therapists, driving over an hour for sensory occupation therapy twice a week, same for biofeedback which was supposed to help treat seizures & behavior…didn’t help either condition, multiple tutors, therapeutic horseback riding, music therapy, acupuncture, the list goes on & on. I wish I would of had the insight then when I was running myself ragged shuffling three kids to & fro, I helped create a child that is really too smart for his & our own good. I worked hard on Jack in so many areas. Hindsight really is 20/20. I have to wonder if Jack would not be as intelligent without my efforts? He could honestly run a business of some sort I’m sure. He calls people all day long. Don’t ever let him overhear a conversation if it involves needing something, equipment not working correctly, questioning business hours, he WILL & does call them. It’s all day long that fella is calling someone. He’s been wanting a house key made, we don’t want him to have one due to the fear of him using it to leave. Lee talked with the local hardware supply & asked if they would tell Jack their key machine is broken. Every now & then Jack starts up about wanting a house key & starts calling the hardware store. Everyone in town has been warned, don’t tell Jack anything unless you have talked with us first! This is one of the greatest advantages of small town living. I really do love our hometown.

About two weeks ago I had a day without anything to do. The Berry Patch (our business) is slow this time of year, there is no need for me to be around right now. I have cleaned out some of Mama’s things over the last few weeks because organizing & clearing clutter is one of my passions. Morbid to think of, but Mama made the statement she wanted me to come help her get cleaned out before she dies so we don’t have so much to do when that time comes, the correct term for this is called Swedish death cleaning. Now I don’t think of it that way, I simply say I am only cleaning out! When I started, she got overwhelmed & told me to wait until she dies to finish-she can’t take it lol. No, she’s not sick, she’s a planner. I am forever selling her stuff on Facebook. People ask me all the time how big is my house, where do I get all this stuff? It’s all Mama’s! There is a lot more to clean out, but I didn’t want to do that on this day, wasn’t in the mood. We all have days when we don’t want to do anything, we all deserve it & need it. After Jack’s caregiver arrived & helped me get Jack more settled, I did a few errands & ate lunch with Lee. Since I didn’t have anything else to do, I sat in my car because going inside meant Jack would harass me or there wouldn’t be any peace, either he’s singing extremely loud or playing the TV loud. I’m thinking an RV in the backyard might not be a bad option, I would at least get to lie down, maybe take a nap. It’s pitiful actually when you think about it. Going into my home is not a place of serenity. I find myself screaming in my head far too often inside my own home like George Costanzas Daddy from Seinfeld, “serenity now, serenity now”! My car isn’t such a bad resting place though. At least I can listen to the radio, listen to the birds, but forget going to sleep. Going to sleep in a car is one thing I’ve never been able to do, must be because I’m not a man??? I have heated seats should I get cold. It smells nice-I’m really reaching here! It’s not home & it shouldn’t have to replace my home.

It’s days like that that I would not have a problem with sending Jack to a residential home of course this is said tongue & cheek. The other night he screamed at me from his room & said in a very angry tone, “Mama! I’m gonna get you”. Immediately my heart sank. My first thought was he found out about my blogs. This is like one of my biggest fears outside of Jack himself. Not sure what was wrong, Lee & myself reluctantly rushed to his bedroom. He was upset because I had fixed him Sunkist to drink when he requested Ginger Ale. A). He did not request any drink just asked for something to drink, B). He drank all of the Sunkist before he fussed at me. Jack is like the Queen Grimhilde (you know, who’s the fairest of them all?) from Snow White. We are forced to comply with his demands, forced to lie about situations like the poor mirror from Snow White. Jack sings songs & asks who sings it better him or Keith Urban, him or Lady Antebellum, him or Carrie Underwood. And if we don’t answer correctly, there just might be a “special” apple waiting for us…if you know what I mean, & unfortunately, there’s no prince to kiss & make it better. If anyone needs me during the week in the winter, you can find me in my car. Maybe I’ll start doing facials, mani’s & pedi’s in my car!

Most of my blogs are written over a period of 1-2 weeks. One reason is that I don’t have a lot of time to devote to blogging, another is Jack’s status is ever changing & there is so much to add each time I find a minute to sit down & concentrate on blogging, I also dislike writing. In school I would wait until the very last moment to begin working on a paper, even a research paper that typically takes weeks upon weeks to do correctly. I would rather of been playing in the gym, running errands for the teacher, anything but school work. I liked the socialization of school, just not the work. I didn’t get school work, diagramming sentences & word problems never made it into my skull. The teachers might as well of been teaching me Latin. If you ever find any typos, please forgive, I often write when a lot of you are asleep.

The above paragraphs all happened the second week of January, we are now entering week four of the new year (longest month ever), some positive changes have occurred that I am excited to report. A lot of people put down social media platforms, I, however will forever be grateful for Facebook. Because of Facebook I have been able to write blogs to keep those that are interested in our journey with Jack abreast, friends have been able to pray specifically for certain situations going on with Jack, & one of the biggest burdens we have had to face to date was just checked off our list because of a post I recently asked Facebook friends about. One of the hurdles we are challenged with in Jack’s care is getting him to the doctor, he flat refuses to go most of the time unless he is sick & really uncomfortable. I asked a few weeks ago if any of my friends knew a psychologist personally in hopes I could convince the doctor to come to the house & give Jack an assessment in the event we do place him in residential care. Jack has to have a psychological evaluation so the social worker will know what type of facilities to point us in for permanent care for Jack. The evaluation is a guide for the professionals. One dear friend of ours contacted her psychologist friend, placed me in contact with him, & the evaluation was completed! How amazing is that! This is something I have prayed & prayed over. Jack was very cooperative during testing, it went off without a hitch. Insurance didn’t pay since it was not an office visit, but it was worth every dollar-a bunch of dollars it was!

Later that evening after Jack’s evaluation was over & done with, Jack asked Lee to help him put his socks on-as smart as Jack is, even tasks as simple as putting a sock on is extremely difficult for him. Jack looked at Lee & said, “will you always be here to help me?” Talk about a reason to make you cry & make us feel like terrible parents for doing what we were forced to do with the evaluation. That morning prior to the doctor coming out to the house, Jack was a Tasmanian Devil. After the testing, he reached a level of calmness we haven’t seen a quite a while, keep in mind his calmness is not the same calmness you experience. He still called my name 5,000 times that day-when he is calm, he still worries the complete sanity out of me, but he was chill. We had to increase one of his seizures medications due to the increased seizures. The seizures he was experiencing prior to the medication adjustment have calmed as well, he is still eating like crazy which is great. I’m just not sure how long this medication adjustment will last with his increased eating, we may have to taper up again. Around the same time as his evaluation, Jack became obsessed with my “cuss-said” washing machine, suddenly he’s wants to learn to wash clothes which is not a good thing. Before you start messaging me telling me that’s a good start, teach him how, etc…don’t do it. Jack will not listen to anyone. He thinks he can go & put his clothes in during a cycle, paying no attention to what cycle the clothes are on. It is a fancier machine with electronic push buttons I guess that’s why he’s become enamored with it, but I’ve had it for over six months & his fascination has just recently begun. His mind…I would love to go inside of it one day. The lid locks once the machine is powered on (which I find silly by the way), so in order for him to open it, he has to stop the load. He throws in a shirt or a pair of socks. The other day he put in a pair of his pants while I was washing sheets. When I got them out, they were dry as a bone because they were put in during the last spin cycle. That boy is so infuriating! I told Lee I’m going to have to start washing a load of clothes at night after he goes to bed & hang them out in the mornings, start unplugging the machine & tell him something is wrong with it. He thinks he can wash one shirt & that be okay. The things this child gets into & obsessed with drives us nuts. What will he be obsessed with next, working at The Berry Patch? Yikes! He woke up at 8am this Sunday morning (01-19) & started calling everyone in the world. When I tried to reason with him that some people may be sleeping in, he simply ignores me & continues calling everyone. Jack’s birthday is not until August, he is already searching for gifts for his day of birth! Making lists & sending me suggestions. The Santa list will be sent soon! His mind is never at peace. As a result of his overworked mind, mine has now become a spin cycle, except I am thinking about what he may do next, am I prepared if he tries to start an altercation, are his meds fixed correctly, how will I convince him to take his meds, the list goes on & on.

There are so many prayers I have for Jack; no more seizures, no more violent outbursts, better reasoning skills, a calmer demeanor, & acting like Mickey Mouse instead of the Tasmanian Devil to name a few. I really don’t see how a group home will house him as active as he is, as medication resistant & sensitive as he is, as needy as he is. It hurts my heart knowing what they will have to do to contain him, but it breaks my heart too nearly every moment of day with him home because he can be so mean, sassy, disrespectful, & violent. As a result of this described behavior, Lee & I are forced to eat lunch out everyday. If we try to eat at home, Jack finds some reason to worry himself & us at the same time. It could be for batteries, a gift card, or he tickles us or give us knuckle sandwiches, there is always some type of annoyance. Sounds like a delightful way to eat lunch, right? His room looks directly into the kitchen & we all know the kitchen is the main hub of the household, if he sees you in there, he’s calling you or talking to you constantly even when his caregiver is in there with him. Just a few days ago, I was preparing to eat my lunch in my car in the next town over when I got a call about Jack, he had locked himself in his room because his caregiver couldn’t find a 9 volt battery that Jack required for his metal detector. My intent was to eat lunch in my car, return something to Belk (story of my life) & get Ava from school. Instead, I flew back home unsure of what Jack would do. Whole day ruined, but crisis was diverted, thankfully! This evening, Lee was supposed to bring Jack a lemonade from The Berry Patch (mind you he has three drinks opened already on his nightstand), Lee forgot. Jack got very upset, we really thought we’d have a fight on our hands. I went to console Jack & encourage him to go to Sonic for a lemonade, he could even press the red button I told him. He agreed. After getting his order placed, guess what the attendant said? We are out of lemonade-Berry luck at its finest was showing off! Surprisingly, I didn’t end up with a black-eye & he ended up with a sweet tea with lemon-how they gonna have lemon for the tea & not lemonade???

In my car I do can so many things. I can cry, sing, listen to my podcasts, pay bills, blog, eat, pray, pluck my eyebrows (best place for it), decompress, & achieve a smart part of “serenity now” all without leaving my yard. I’m thankful for my car even though it looks like a gypsy wagon & has a large crack in the windshield , it gives me solitude from a very stressful, hectic home. So if you see me sitting in my parked car doing any of these things, mind ya business 🤣! If the below statement isn’t true, I don’t know what is. Describes my life. I happened to see it on a friends Facebook page as I started writing this blog.

Author: dravetsyndromeblog

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

One thought on “Serenity Now!”

  1. I wish I could say the magic words to give you and Lee some comfort in regards to what, when, how on the group home…but there really are none….but I will come to you and listen and share how we navigated this decision for Noah, if you would like…and we can even sit in my car and do it…..I’m just a message away…..

    Liked by 2 people

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