Riding Out the Storm

It’s been a while since I’ve blogged. Since my last blog, Jack was on a binge of uncontrollable eating, not sleeping, wanting anyone he knew to buy this & that for him, placing ridiculous food take-out orders without consulting with Lee or myself first, talking 200mph, & anything & everything he was doing was all in excess. All classic bipolar behavior symptoms. This story is nothing new to those of you that follow Jack’s journey. Finally, there was a halt & all the ridiculousness calmed down significantly just recently, but with the calmness, another type of storm brews. As I have talked about numerous times in the past, there is no happy medium with Jack. It’s either he is high as a kite or down really low or sick or plagued with seizures. So after his high period, we have yet again entered the low phase/seizure phase. The low phases are characterized by lack of eating, sleeping way too much, lethargic even after sleeping 16 hours, not calling anyone. When Jack doesn’t call people, it is very concerning for us. He goes from calling me 20 times a day to now nothing at all. As much as Lee & I welcome a more relaxed Jack after his high, we certainly don’t want this. As worrisome, annoying, & downright scary behaviors only a few years ago & into last year with Jack, neither one of us want this. Only a few years ago Jack was expecting a person he was being catfished by to move in with us & sleep in his bedroom. Thankfully, Jack has not been interacting with anyone online in quite sometime. That has been a major blessing for us. He went from forcing us to buy gift cards that he claimed were for himself but actually for the catfisher multiple times a week to now asking for a card for himself occasionally so he can purchase a Blue’s Clue dvd or some other novelty. That transformation has been amazing to watch & we are forever grateful for the change every single day. I was sick each & everyday that Jack awakened wondering what kind of trouble he would get in. There was the time he called a taxi to go to Dollar General, tricked his caregiver & actually got into the taxi & started down the road. The time some of the evil people he was in chat rooms with kept calling 911 on Jack & when I got home, our house was surrounded by two cop cars & there was nothing wrong-talk about a heart stopping moment. By the way, Lee was home with Jack & was totally unaware of the police outside & their lights on! Or the time Jack came out of his room saying vile, disgusting things to me that he had never heard before nor knew the meaning of all because some of the people he was in a chat room with told him to do that to me. We have been through the terrible teenage years with a teenager that never leaves the house! It is absolutely unreal to think of the evil Jack has gotten into without leaving our abode.

The lethargic stage Jack is going through can also indicate seizures. Jack’s entire infancy, childhood & preteen years were nothing but seizures. Once he was able to get on the only drug made for Dravet (at that time), the seizures lessened, more importantly, the drug was able to stop the prolonged seizures that landed us in the ER many, many times. That drug has been a blessing to us. Jack began going through puberty at the young age of 8, which is when we saw a huge increase in the violent behaviors. The tendencies are still there for the behaviors, but I think because he has gone through puberty, they are of a lesser degree, but still as powerful. We are fully aware & mindful that the threat of an increase in the violence can come back at any time, but we are hopeful that they won’t & pray daily that those urges will forever be released from his body. Getting back to the lethargic stage, it is hard to differentiate between tiredness & seizures sometimes. It can be both or one or the other. There are times that Jack’s seizures aren’t so clear cut & I am afraid that is what is going on now. Having a seizure or seizures makes him tired as you can imagine. Just after Christmas, Jack began having a lot more seizures & was being violent afterwards which unfortunately is one of the sad side effects for some that have epilepsy. We increased some of his medications & he settled down seizure-wise for a minute. Now thanks to the “honeymoon phase”, he is starting to have more of the little, odd seizures now. Seizures are tricky. The smallest of movements that can appear normal to most people, are detected by excellently trained Mama’s, as in Jack’s case. Seizures are sneaky. I know there can be trouble on the horizon when Jack starts sleeping too much. Little things like trembling of the head for just a split second or a fluttering of the eyelids let me know something is up & yet another storm is brewing. He floats between a conscious/semi-conscious state when he’s like this.

I’ve suspected seizures for a few days now. Last night it was confirmed with longer moments of what I described above along with staring off & a curve of Jack’s lip that’s not normally there. I emailed his neurologist immediately, now we wait to see what the next plan is. Could be days before I hear back from him. In the meanwhile, I gave a bolus (extra meds) of one of his seizure medication. It is so sad to me every time we have to increase one of Jack’s meds which has been frequently over the last year. For the longest time, Jack was on a steady dose of meds & it worked as good as it could-meaning he didn’t have the types of seizures I’ve just described. The amount of medications he takes breaks my heart. Pill after pill after pill & swallows them all at once. The bad part about it is, Jack can’t function without them. The amount of seizures he has with the meds is ridiculous, so without, I can’t even imagine. Y’all be praying that the seizures will cease & Jack will have a rejuvenated spirit. Dravet is an ever-changing disorder. What’s the same one day, can be turned completely & utterly upside down the very next day. I can kiss Jack goodnight & end up in the ER two hours later. The evolving of Dravet is never ending. Whether it’s seizures, behaviors, GI issues, bone issues, & so much more, the change of patterns hit so quickly that you never see them coming. Some parents of Dravet kids say the ages of 6 months-2 years old were the hardest seizure-wise or from puberty-the end of puberty. So far, all ages have been the worst for Jack. We expected to see a calming in seizure activity as he entered the young adult stage, that hasn’t been the case so far.

I’ve got a neat little story to share with y’all that I know God had a hand in. Sunday afternoon, there was a homeless man with a large cart walking through Ellerbe. He hung near The Berry Patch but never came to our place which is surprising to me since it is the Bermuda Triangle of Dryland. That evening, Jack & I wanted to ride to Dairy Queen (yes, we go to other ice cream places lol). Jack brought his wallet. I questioned him to death wondering why he would bring it, but he never gave me an answer. He knew I would pay for his food & we weren’t making any more stops-for one, he was in his bedroom shoes. It was dark when we left, at the exit ramp at The Berry Patch, the man had setup a tent right there on the side of the road, more like the shoulder of the road. It was a very dangerous spot actually I thought to myself. I planned on getting him a hot meal from Dairy Queen & drop it off to him after we got our food, it was a very cold night for us Carolina people, around 30 degrees. When I started to place our order, the employee said their credit card machine was down. Well, I never have cash-ever! Guess who did, Jack! How unusual it was that he would bring his wallet with him knowing that I was paying. Jack said I could use his money, but was very hesitant about me doing so. He didn’t seem to understand clearly why I needed the money & that I would pay him back as soon as we got home. He is very tight! I then decided it best not to get the man anything to eat because Jack was already getting annoyed with the fact that I was having to use his money & that may of rocked the boat. After we got our snacks, Jack ate a little, his appetite isn’t a tenth of what it was, we headed back home. I looked for the man & his tent when we got back to the area, he was gone, the tent was gone. Not that a few dollars would of made a difference to me if I would of used my money or Jack’s, but I have to wonder if this was God’s plan. Maybe He knew I was going to try to help this man & that’s why DQ’s credit card machine was down & maybe that’s why Jack brought his cash. Maybe this man would of been up to something strange if I would of stopped. It definitely was a moment that made me think about how powerful the presence of God is.

As I type this blog, I am in bed where I usually am during blogging sessions, I’ve wound down from the day as much as I can, I lie in bed worried about Jack. I am down. Worrying about his constant seizure state, then what if the seizures incite violence, worrying about his overall well-being brings me to a low. Typing the last sentence of the above paragraph helps comfort me though. God is never far away. We’ve seen many changes in Jack through prayer & I am going to hold on to that belief that this phase will be healed quickly. It’s impossible for me to be anything but on edge all the time. It is truly hard to be the person I know that God expects me to be with all that goes on with Jack, whether that is a friend, Mother, wife, daughter, employer-it is dang hard. I make mistakes, we all do. I don’t blame the mistakes on Jack circumstances but do think the stress of the situation attributes to a lot of the things I feel bad about at the end of the day. The worrying is pointless, why I don’t know this by now I’ll never know. I’m trying hard to remain like Joseph, being faithful that God is going to pull us through this situation. Thank you for reading & thank you for your prayers.

My heart yearns to see this precious smile on Jack’s face again. This was several years ago at Disney when we took Lee’s aunt Vickie for her first trip along with Mama (her second & last trip), Coleman (who is there now on business-that’s what they call it nowadays???), Ava, Lee & myself. We love Disney, but it’s too hard to take Jack & too much on him. Only a few years ago we went & went all day & into the evening, riding most rides with him. It is one of my most favorite pictures of Jack. Now the trip didn’t end up so well. When we tried to wake Jack to head back home on the last day, he erupted like a volcano & fought Lee, but this will be a forever favorite smile of mine.

Author: dravetsyndromeblog

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

4 thoughts on “Riding Out the Storm”

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: