The Storms

Why do I do this to myself? About three weeks ago, I posted a blog about how well things had been going with Jack. Right after I said that sentence, I also said that I would probably regret saying that, boy do I ever! It all started about two weeks ago. Lee was craving fish, so we made a trip across the Pee Dee River bridge for an outing with Lee, myself, & Jack to eat at Welika Lake fish camp. It’s a traditional fish camp a lot of 40 & over aged folks dined at as youngin’s on the weekends while we begged our parents for change so we could see a pack of Vantage cigs fall down from the cigarette vending machine & bask in the glory of the coolness of a York peppermint patty as an after supper treat. Although I detest smoking, the real treat for me was moving the knob to the correct pack of smokes. I still can’t believe little kids were able to do that. Memories! Any way, the spiraling of craziness started on this night. Our waitress happened to be one of our employees in the ice cream shop at The Berry Patch, she knew us & knows of Jack, Jack doesn’t know her but because she knew us, he immediately felt a comfort level of complete & utter freedom with her. Jack couldn’t make up his mind about what he wanted to eat, anything Lee suggested was wrong, I suggested the seafood platter, that was wrong. Jack ordered all kinds of stuff, then when Lee placed his order for the seafood platter, Jack then changed his mind to what I suggested he get-the seafood platter. He didn’t get a salad but I did. As I was preparing my salad at the bar, he makes a beeline to our waitress requesting a bowl so he could have a salad. I’ve mentioned before how we no longer eat meals at the table because Jack does not allow us to eat in peace-he talks constantly with a fork of food in his hand without ever placing it in his mouth. It’s amazing that the act of sitting at a table causes him to have diarrhea of the mouth, talking about crap (pun intended) that none of us have thought about in 18 years! It’s very frustrating & infuriating at the same time since we can’t enjoy the company of everyone at the table. A little while later, Lee sees someone he knows sitting across the restaurant & goes to speak to him. Jack tromps across the restaurant to where Lee is like he’s King Kong stomping, nearly running to see what Lee is talking about-just another excuse to not eat. The child is fascinated with food, but has no desire to eat it most of the time. Once back to the table, Jack kept talking to our waitress & even reached out to touch her on her back while she was with another table. When we scolded Jack for interrupting her while she was with another table, he blamed it on us saying we never told him that. He just acted plain weird from that moment on, Lee & I were concerned he was going to have a seizure or an outburst. After the food arrived, Jack picked up a piece of fish & held that same piece of fish in his hands only taking one bite out of it from the time he got it to the time we made it back to Ellerbe which was roughly an hour or so. We could not wait to get home, it was a mentally exhausting trip that I will never willingly take again!

Since the fish camp night, Jack has been waking up either really early and/or in the middle of night & then tries to get into bed with us. Sleeping with him is scary as well, he jerks all night long & tries to hit whether it’s intentional or not, who knows. I’ve had to start fibbing to him by saying I have been sick on my stomach, Jack is deathly afraid of getting sick. I’m considering purchasing some fart spray (excuse the language) from Amazon so I can have the smell to back up my claim! What really absolutely takes the cake & helps remind me to never say Jack has been doing well were the events that transpired from last Wednesday to current date. Jack had his yearly neurology checkup at Chapel Hill last Wednesday. I did not tell him he had an appointment until that day due to his hyperactivity. I let him wake up & have his meds before breaking the news, although I actually didn’t tell him. His caseworker who is a wonderful family friend & nurse called Jack to tell him he had to go. After much relenting, he agreed. His appointment wasn’t until 4:30 that afternoon, his caregiver went with us which was a huge blessing to me. We made a pit stop before the hospital at the Ronald McDonald House to drop off drink tabs that local friends save for us to donate when we go. Jack wanted to do it all by himself, he acted just like a four year old would, “all by myself” I’ve heard that from plenty of 4 year olds & he exhibited that behavior perfectly. The boxes were heavy & he kept dropping them, but no matter, I wasn’t going to flinch to help him. There was nothing I could do to stop him. He comes back after the first load & says they have T-shirts for sale inside & he wants one. T-shirts & hats are also an obsession of his, basically anything that costs money is! I told him no that I didn’t have any money. After multiple attempts of begging & even threatening, he finally gave up-or so I thought, more on that later.

A friend of mine & Lee’s has been in the hospital, in particular the ICU. I wanted to take her a treat from The Berry Patch because she loves our ice cream. Lee carefully packed the ice cream, we even included our homemade waffle cones. Jack has never met this lady before or heard us talk about her, knows zilch about her. We arrived at UNC at 4pm so I’d have enough time to run the ice cream upstairs & then back down for Jack’s appointment at 4:30pm. I pleaded with him to stay downstairs with his caregiver because the walk is long, long, long-he sits in his bed 99% of his days, I knew that would tough on him. Insistent he is, so there we went marching up to one of the many different ICU’s there. My friends Daddy met us at the locked doors that buzz you in if approved, there is also a sign on the door that says only two visitors at a time allowed. I went back with her Daddy, Jack & his caregiver stayed on the other side of the doors. Jack did not like this! He was determined to go in. I did not stay in the room more than five minutes visiting because I knew Jack would try to bulldoze in like the Roadrunner from Looney Tunes. When I came out, Jack was adamant that he was going to visit my friend. I told him she had to go to therapy. Of course that didn’t satisfy him so he suggested we go back after his appointment. I told him we’d see how she felt.

We finally made it to check in downstairs, the lobby was completely empty since it was close to closing time for clinic appointments. Jack had the huge waiting room alone. He honed on something new inside the waiting room, unfortunately. The picture of what fascinated him is below, it will help give you a size reference of the piece he became mesmerized with. That whole thing is a display of action figurines inside a locked case with a push button light to amaze the smallest or biggest of kids. On top of the case is a certificate telling about the man that made it & that he donated it to the Children’s Hospital. Well, guess what Jack did? He found the man’s phone number, called him, left a voicemail to see if he’d make him one. Now do y’all understand the addiction problem I say Jack has? Where on earth would we put such a monstrosity? He also asked the nurse if the man would make him one. I just so happened to be holding Jack’s phone while he was giving blood when the man called. I deleted the number & the message before Jack ever realized he returned his call. I sure hope he has forgotten about this case! Of course the doctor was running behind, we didn’t get out of his office until 7pm. I didn’t even get to discuss anything I needed to about Jack because Jack kept interrupting, now I’m going to have to email him & it’s hard to convey the troubles exactly via email. Jack of course asked about going back upstairs to visit with my friend & I told him we couldn’t she was still in therapy. After the appointment, it was supper time, Jack hadn’t eaten all day & he wanted to dine at a little pizza shop in the area. He wanted to go in & eat but eating with Jack is so stressful that I tried to encourage him to let’s get it to go & eat on the way home. To which his reply was, “don’t make me get upset”. Being pressured & threatened by Jack is nothing new as you already know, so of course we did what he wanted. I wasn’t about to start throwing punches with him at the pizza cafe parking lot. We didn’t get home until after 9pm. What a day it was!

Since our visit at UNC, Jack became obsessed with our friend that is in the hospital. I suggested he make her a card the night we got home from his appointment since he was upset he didn’t get a chance to go visit with her. Jack couldn’t care one iota about visiting with her. What this was about was control. He didn’t get his way, so he had to figure out some sort of way to feel like he was in control of the situation. He started talking about making the card first thing the next day. It was a very simplistic card, nothing that would take him longer than 15 minutes to make, but no, he had to take 3 days making it! It literally ran him crazy & made us nuts. He was preoccupied with calling the hospital trying to find her room phone number, he was not sure of her last name-I called everyone we knew & told them they were not to tell Jack what her name is. No one has as of yet. He made me draw the heart, made Lee sign it, everything he could of done himself, he made us do except for color it. His statement was that card was going to make her feel 100% better. He’s a healer now! The control for Jack was played out in the demands he made upon us from making the card, signing it, delivering it to her Mama so she could give our friend, & thinking the card was going to heal her. That made him feel powerful. He also called The Ronald McDonald House multiple times about buying a blooming T-shirt!

I call these periods that Jack goes through storms. It is so very difficult to be around Jack when he is storming, hard enough when he’s not storming. How difficult it is to like him when he’s like this. We go from him trying to break the bathroom door down when I’m in there, to unreasonable demands, to instantaneous gratification, the need to have foolish purchases, medication refusals, a sharp tongue, bullying, attempts to untie my robe, rip my shirt, & more-it’s unreal. A video of Jack just the other day while I was trying to get ready for the day. I am used to this behavior, but it is ALWAYS scary!

It is truly a lonely world when Jack is storming. We are afraid to walk by his room in fear he’ll ask us to buy him something or wash ONE T-shirt in the washing machine. We creep around the house fearful to move so he doesn’t notice but his room is in the center of the house, it’s impossible to do anything without him hearing or seeing us. Ava stays upstairs or in the living room with us, out of sight, out of mind-impossible to live fully in our own home. It is hard to like Jack, of course we love him, but he is so wild & unruly that liking him at times is difficult. We all know he can’t help his behavior. I think of football players when I think of Jack’s behavior. How many stories have we all heard about a player with head injuries that lead to violent outbursts, change in moods, or even murders? That is called CTE, chronic traumatic encephalopathy which stems from repetitive brain trauma. I’ve said the number of seizures Jack has had in a lot of my blogs, please do not think I am being facetious about that number. When the seizures began, he literally had 100’s a day. The 100’s were little seizures that are called myoclonic seizures, his head would drop & right arm would lose control. Jack was six months old when this started. Think about this time period, he was learning to crawl, his head kept falling over & his right arm lost control although for just a split second, it occurred in clusters of 100’s of seizures in a few hours time frame. This went on all day & night long ending in full-on seizures with all over convulsing multiple times a day. What a crucial time of brain development & his was hindered by seizing 24/7. This was Jack’s life for a straight 6 months, no medications helped, some even made the seizures worse if you can imagine such a thing. It wasn’t until Jack turned one that we reached a turning point when he started the ketogenic diet as treatment for seizures. No, this is not your meat & cheese diet many people are now partaking in for weight loss. This is a dietitian/doctor guided diet to make ketones. Ketones for some people help stop seizures. All of Jack’s meals had to be weighed in grams, toothpaste, lotions, shampoos had to be investigated for sugars-yes, they put sugars in that stuff & that could decrease his ketones which we didn’t want. The diet was successful for 2.5 years but suddenly the seizures came back with a vengeance. Where I’m going with this story is, I think Jack’s case is similar to the football players I’m talking about. His brain has had so much trauma, probably having close to 100,000 or more (I have no way to estimate, just a guess & that’s probably on the low end). It’s hard to like someone that causes so much pain, fear, & sadness even if it’s unintentional.

So much more has happened with Jack, but I won’t bore you any more with the details. What a whirlwind of a life. Now Ava has started blogging about our journey with Jack. I’ve encouraged her to start writing about her experiences on a personal level. Although we may seem like happy people on the outside, it is really, really hard on the inside. Ava touched on the fact that she can’t have friends over, how she has to sleep with her door locked, how we have to lie about things, hide her phone & computer. It’s so hurtful to not only have a child like Jack that suffers with so many things, but hurtful to see the side effects it has on your other “typical” children. Ava has had people say to her before that she’s snobby, stuck up, goes to a private school. The private school part is true, that was our decision as her parents & the best decision for us, but part of why I encouraged her to write was to let people know why she is like she is. She is hurting inside because of Jack & there is nothing we can do about it. Our hands are tied. I want people to understand her & our situation & not jump to conclusions about who she is as a friend/person. It’s not easy to talk about, but it’s easier to write about. I hope she continues to write & finds comfort through her writing. I spoke with the new case worker over Jack’s case about residential placement just last week, she said it could take a few years to find a place for Jack because he has significant medical & behavioral needs & that these places only take a few people each year & there are very fees facilities for people like Jack. Ava is liable to be grown & flown before we find somewhere for him. So what do ya do? Not much we can other than pray. There will be more journeys with Jack to come I know. Stayed tuned for more from Ava & myself, hope we don’t bore y’all!

Author: dravetsyndromeblog

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

2 thoughts on “The Storms”

  1. Amy please keep writing, you are an encouragement to me when I think I want to give up!i enjoy reading your blogs and I read Ava’s first one a few nights ago! I never knew there was such a syndrome until I started reading your blogs and you are an amazing woman to be able to do all the things you do and still have your sanity! You and your family will always be in my prayers!


  2. The heart breaking part of this story is the lifelong effect this situation will have on all of you ……. especially Ava and Coleman…… you and Lee have been and are so strong …. you walk where none of us understand …. prayer continues for all of you

    Liked by 1 person

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