Pressing Reset

I’m from the south, I most often say ‘mash’ for the proper word ‘press’, so forgive my grammar faux pas. What does ‘mashing’ reset on your life look like? For some, it could be a mini vacation, a day at the spa, or a fishing trip. For others, it could be a day spent entirely alone & in complete solitude. A girls night out could easily reset the mind of a stay-at-home Mama or simply a night of uninterrupted sleep on freshly laundered sheets might do the trick. I personally don’t get much of an opportunity to press reset due to our home circumstances, but I will have to say that I most look forward to 12:30am every night or morning however you refer to that time every single day because I get to watch my favorite girls, The Golden Girls. Unfortunately for me, the Hallmark network will soon be airing Christmas movies 24/7 & my girls will be on hiatus until next year. I have a serious love/hate relationship with Hallmark. I for one dislike movies, especially silly & extremely predictable ones. All the Hallmark movies are the same. Please do not come for me about this statement Hallmark Christmas movie lovers! I know there is a strong following for this genre, but you secretly know I am speaking the gospel here.

As I digress about my Hallmark rant (you know I had to slide at least one in), I’d like to tell you about Jack & his reset button. His reset button is not like anyone else I know of. Guys Jack’s age would typically workout, play a video game, hangout with friends, or sleep for eight hours, wake up to eat then go back to bed for another eight hours to ‘mash’ reset. Jack was not afforded that luxury. Why am I even talking about a reset with Jack you may be asking? Well, it’s one that we have to deal with more frequently as of late than we want to. My blog followers know that Jack had a hard time with seizure control earlier in the summer-he was eating a ton & also seizing a ton & getting injured as a result of the falls from his seizures at times. Jack’s doctor & I made some medication changes to help & the frequency of seizures soon calmed down. Around the time of Jack’s birthday which was a little over a month ago, Jack fell into one of his eating strikes. During these cycles of non-eating, Jack is often very calm, not irritable nor hostile which is great for us considering the behaviors we have had to deal with, plus we are not running to Pekin Wok everyday to get 10 orders of Chinese food.

Jack hasn’t had a big seizure also known as a grand mal seizure since July (knock on wood) when medications were increased. If you’ve ever been a newlywed, you know what the term “honeymoon phase” is-life is blissful & wonderful for a while, until your husband leaves his dirty clothes all over the house, tracks mud all through the house because he refuses to take the time to take his shoes off at the door, or refuses to help with the dishes. Or the wife could secretly hide packages in her trunk to hide the fact she spent a few extra dollars or invite company over after the husband has had a long, exhausting day at work, or the wife could have totaled her Suburban by hitting a light pole at Food Lion. These may be facts taken from the writer of this bloggers own personal experiences. In the epilepsy world, the honeymoon phase is also a wonderful, short-lived moment of bliss that ranges from about 4-6 weeks after the date of medication increase or a new start of a medication, then reality settles in & it’s often in an angry, spiteful way-much like a marriage lol. I’m not saying Jack is experiencing the honeymoon phase, but it certainly looks like it could be swinging that way to me. I have been dealing with enough signs for 19 years to know what we could be facing & that is either an increase in meds yet again or opening up to yet another medication. The latter route is not an obtainable option either. Do y’all remember years ago when the diet pill Phen Phen was on the market but had to be taken off due to heart problems? Well, that same drug has been shown to help Dravet patients with seizures & is working very nicely. There is one caveat, Jack would have to have regular heart screenings & echos to monitor for heart issues & he is not going to be down for that. We can’t even get him to shower or brush his teeth. Phen Phen, when given in lower doses helps reduce seizures in Dravet patients. I would be delighted if Jack would take it, but he would never agree to the frequent screenings.

Jack’s body is currently trying to press reset by having a big seizure. How do I know? He’s been waking up early, waking through the night, increased eating, not going to bed at a decent time (I’m blogging at 1:45am awaiting his slumber), jittery, getting out of bed first thing in the morning (which is never a good thing), & wallering around (also a southern term that I couldn’t find the spelling to). One of the more major & scary examples of him needing a reset, is having little seizures aka, myoclonic seizures. His head will drop for a split second or his arm will tremble for just a moment. These are all predictors of a grand mal on the horizon, much like the aftershocks of an earthquake, he has aftershocks before the earthquake so to speak. It’s so odd how his mind/body operates. When his appetite increases, he doesn’t sleep. He is unfillable, but it somehow messes with his sleep pattern which is truly an oddity to me. I can’t imagine how Jack must feel inside his mind as his body prepares for a big seizure. He paces the house, he can’t sleep, thoughts are jumbled, & has little seizures & perhaps even seizures that we can’t see. As upset as he makes us at times, we can’t help but be sympathetic towards him at the same time. He didn’t ask for any of this, for some reason, he was chosen.

So many of you ask about Jack’s health status all the time, so I thought I’d give a little update on what we/he are currently dealing with. Jack is on a Mexican food kick now & Dixie Burger as well, breakfast, lunch & dinner. His appetite has significantly increased, he went from absolutely nothing to everything. He may be coming out of the honeymoon phase which is scary for all of us, & his behavior has been wonderful for the most part. He is sassy & demanding at times, but that we can deal with that & happy to deal with it given the alternative that we have had to suffer through. Who knew marriage & seizures had so much in common? We are blessed to be in this calm behavior stage we are in & pray that it will last forever! Send out prayers that Jack is not entering the honeymoon phase, please! Below is one way Jack presses reset, he got a haircut a few weeks ago & it made the world of difference!

Author: dravetsyndromeblog

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

6 thoughts on “Pressing Reset”

  1. Amy, we are sending prayers that Jack will stay in the honeymoon phase and be happy all the time and that he understands his parents are trying to help him and do what is best for him! Always in our thoughts and prayers! I love your blogs! You are so good with writing! I’m still waiting on your book to come out!

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  2. Prayers are being answered. I believe Jack is going to be alright. Amy, Lord in heaven knows you can only take so much . I wish it was possible for me to live near Ellerbee . I would help you and your family have more time together. I wouldn’t mind sitting with Jack for a few hours. All things are possible with the help of our Lord and Savior. Love and prayers.

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  3. yes, you spelled wallering…correctly…..Yes, I know the honeymoon phase well, OH MY, I also know that some folks will not understand the fear of a long time without a seizure and the fear of the seizure that is to be……Hang in there sweetie, you may bend, but you will not break, it will just feel like you will…..still here to talk anytime you need….Things will change ..some…as he ages….but that is another story for another time….

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