What’s Next?

We’ve got a very sick boy. For those that don’t know, Jack was discharged from UNC Saturday afternoon. I begrudgingly took him home. Jack was in no condition to be discharged. This story is sort of long, so please bear with me. From the moment the team started treating Jack for the malnourishment with new medications, that child slept from sun up to sun down, which I voiced my concerns about every single day. The meds in my eyes were defeating the very purpose of why Jack was admitted to the hospital. Jack’s constipation problem was finally addressed with prescription strength medication & boy did he poop! He pooped three times & the last one was tremendous, like it clogged up the toilet for real! That was Thursday. I noticed on Thursday he seemed to be very sluggish by then, could hardly walk, had the chills, he also developed a cough but not terrible. One of the Dravet issues is not being able to cough like we all do, so it didn’t sound that bad to me, I honestly thought it was acid reflux. Friday evening his temperature was 99.1, for Jack, that’s a fever. I called one of his docs in & voiced my concerns about the excessive sleepiness & fever, I was reassured it was a side effect of the new medications. He did not eat all day Thursday, nor Friday which contradicted our hospital admission, they also stopped fluids Wednesday to see if his thirst would come back-it didn’t. They said we could leave Saturday afternoon, he could not even stay awake in the wheelchair to go downstairs to get the car. It was awful. I then had to pick him up & load him in the car because he couldn’t walk. My thinking was, I am getting this child home & going to quit these new medications & rehabilitate him myself. I had the prescription for the constipation which I think that was the crux of his whole problem with not eating or drinking. By that evening of his hospital discharge, Jack deteriorated rapidly. His breathing was very labored, he could not hold his eyes open & had a fever. I called 911. FirstHealth of the Carolinas EMS, FirstHealth Moore Regional Emergency Department, & Ellerbe’s volunteer rescue team were all amazing. The ER jumped right on Jack & began working. His blood pressure was extremely low, dehydrated, & oxygen levels were in the 60’s. Thankfully, Jack did not fight like we thought he was going to on the ride there. There were a few times in the ER he slapped at people, but we were able to calm him down. I knew when I called 911, he had pneumonia. Where it came from, not really sure. I’m not so sure he didn’t have it coming in. People with Dravet are more likely to develop aspiration pneumonia which we don’t know that he did aspirate, but it’s a possibility. Jack’s blood pressure has remained extremely low, more than likely linked to his dehydration, he is getting lots & lots of IV antibiotics, & his hemoglobin is very low & he will possibly have to get blood in the morning. On top of all that, Jack is having a fit. He tried to fight several times this morning with Lee, has tried to pull out his IV, complaining about the itchiness of the tape around his arm for the IV, ripped off his saturation monitor & heart leads, & will not leave his oxygen mask on. He is very, very ill both physically & mentally. Ill as a hornet & is a ticking time bomb.

Saturday night, or Sunday morning rather, Jack didn’t get settled & asleep until 5am. Moore county transferred him back to UNC. The ER doctor wanted to know why we wanted to go back to UNC since they sent him home with pneumonia, I said yes I want him to. I was proving a point to all of his doctors. They all poo-pooed what I was telling them, I knew Jack was sick & something was wrong & I was sure to tell them all. I was so very exhausted & still am. When we went home Saturday, I didn’t rest, I had too much work to do. Lee came up Sunday evening so I could go home & sleep in our bed. Unfortunately, I did not sleep well. I let Teddy sleep in mine & Lee’s room. That didn’t go too well. I heard every movement. He was up & down all night. I finally let him out at 7am & then slept well until 10:30. I had things to do at home, shower, had to go to the grocery store twice for Berry Patch supplies, do a few things at The Berry Patch & Lee is texting me constantly telling me about Jack trying to fight, pulling everything off, just out of sorts. So here I sit yet again in this thing they call a bed.

Jack had a really excellent day Sunday. He ate a huge lunch & supper. His eating has continued to improved markedly. The amount of stimulation in his room is a lot. So many doctors, nurses, respiratory, lab, housekeeping, it’s around the clock. I’m like Madea or actually my Aunt Sue, knock on that door one more time & I’m gonna get my pistol! I’ve talked with the team about not coming in so much but it’s hard to do when you have such a sick child. I know they are doing their job & helping Jack as best they can, but Jack won’t let them. It’s getting frustrating for me as well. I’m constantly having to bribe & beg Jack to not take something out or off. It is all too much for my mental status. I just don’t understand why one person has to have so many troubles & then on top of all that, he has to be violent. Seems so unfair & cruel (now you see why cruel & unusual circumstances is the name of my blog site). And then when Jack does get to come home, it’s going to be so very difficult because he’s going to have to have follow-up care. I don’t know how I will get him there. To top things off, Chapel Hill was under a tornado watch this afternoon. Which I didn’t care, I wish it would of blown me away from all of this! Jack doesn’t want anyone else but me. I’m the only one he requests when I do get to step away. I stay hungry, can’t do a lot of GrubHub type of deliveries because Jack doesn’t want me to leave to get it now that he is staying awake more than what he was last week. I come to all my friends & ask that y’all keep praying that a calmness will take over Jack’s body. That he will be accepting towards treatment & not put up a fight of any kind & keep his IV in. I’ll keep y’all posted. Thank you all of loving & praying us through this most difficult journey.

Update

First of all, I’d like to thank you all who have text, messaged, & most importantly prayed for Jack. The whole experience of watching Jack fall into malnourishment has been so heartbreaking. And while some may question why it took so long to get Jack medical help, sadly, Jack didn’t want it. Although Jack is mentally disabled, he is still very much in control of his body & shows that control in violent acts if things do not go his way. While it may of looked like I was busy working or going out to eat, I was working behind the scenes trying to get Jack in-home help. I exhausted every in-home nursing care facility in our home country & surrounding ones. I had been begging his doctor for something for constipation for a long time outside of what you can purchase over-the-counter & got absolutely no where with that. When you have a person that flat-out refuses to go to the doctor, your hands are tied & that broke our hearts each & every day. We kept hoping & praying for a break in the bad cycle Jack had entered. This hospital stay has been rough! I have been the main one up here with Jack, the one making all of the medical decisions, the one that looks like a crazy Mama to the doctor team that rounds every morning (more on that below), and the one the sleeping on a horrific bed. The burdens I have had to bear alone have been so hard. I have cried myself to sleep every night only to wake up & cry more. But I never let Jack see me cry because that makes him upset.

In years past when Jack has been a patient at UNC, it was much more manageable for us. Visitors were allowed freely & that allowed me some respite time away from the room, and I also had support from the visitors when discussing health needs & concerns about Jack with the doctors. Now thanks to Covid, that hasn’t been possible. Lee is busy running the farm & business, but he’s also the second allowed visitor. He was able to come for several hours Wednesday to see Jack which Jack enjoyed. The charge nurse allowed my sister Jodie to come & relieve me for the night Wednesday. It was very much needed. I was able to get home & talk with Ava some, play with MY dog Teddy, dip strawberries, & play a literal secretary at my desk for about an hour. I enjoyed the normal-ness of my daily routine, but the house felt so very weird without Jack there. I can’t recall a time in the last 10 years that Jack wasn’t there. Sure, there were times he’s visited at Mama & Daddy’s or Aunt Vicki’s, but not for the whole night. It was sad. Of course I felt guilty for asking Jodie to stay & for leaving Jack, but I was about to have a breakdown from the stress. It was literally Monday-Wednesday nothing but doctors rounds, meetings with doctors in conference rooms, a palliative care meeting, on & on. On top of all that, it was the feeding of Jack that took hours, holding his cup, taking him to the bathroom, figuring out what he wanted to order from room service which was so complicated, and changing his clothes about 7 times in one day because he got a speck of water on them.

That takes me to my next point. As soon as we got to the hospital, labs were ran & the bombarding with the doctors started, but I’m glad we are here because that’s what Jack needed. Almost immediately, the doctors started talking about feeding tube placement either in the nose & possibly more permanently in his belly. A little back story, back in 2017 when Jack was admitted to UNC the last time, he had to get a nose feeding tube. He was admitted for being repeatedly violent & was malnourished at that time (both due to the trial he was on through UNC for prescription medical marijuana). The tube was to give him meds because he was so violent & kept having seizures. Jack remembers that particular incident very clearly & talks about it still to this day. He was traumatized. As the doctors kept talking about the tubes & harping on them, I felt boxed in a corner. No one wants Jack to be helped as much as possible than us, but if it’s not comfortable for Jack, then I’m not going to allow anyone to do anything that he’s not comfortable with. I kept telling the doctors that Jack would not have either, he strongly said no to the nose feeding tube when I talked to him about it Monday night & I didn’t even bring up the belly one. Jack doesn’t leave things alone. He picks strings on shirts & in a day, there won’t be a shirt. An ant bite looks like a gunshot wound in less than two hours. I had to change his clothes 7 times in one day due to a drop of water on them. This is something that we as his parents know he would not tolerate. Each time I told the same group of doctors no, I felt shamed even more each time. I then got called into the “principal’s office” by three doctors for a meeting. Basically they were telling me that Jack had to have a feeding tube. I came out of that meeting even more upset than I was originally & feeling like the worse kind of Mother. Yes, I realize a feeding tube would be the best option for Jack, I’ve said it many times in my blogs, but I know my child. I called Mama that night upset & told her they made me feel like I have Munchausen’s by Proxy.

The next day, I had another meeting with the Palliative Care team. These group made me feel very comfortable in our discussion & not judged at all. They work with patients & their families that have chronic diseases to manage care. During our meeting, I had to relive Jack’s whole story which included the violence on his part. That is always an upsetting part to discuss because I am so traumatized by his violence. After our discussion, I told the team I didn’t feel like Jack had been given a chance before jumping to such drastic measures like a feeding tube. I feel like Jack’s main issues causing the lack of food & liquid intake are the severe constipation. They agreed that we need to address that issue in a more aggressive measure other than what I was doing at home. They also put him on an appetite stimulant four times a day but it makes him so sleepy, he sleeps all day & all night which I addressed with the team today. I have never felt so bad as a parent before in my life, but I will say I am still confident with our decision. After giving prescription strength meds, Jack used the bathroom twice last night, which is a huge deal for him. It still seems crazy to me that the team jumped to one drastic measure before addressing the root cause or really listening to what I was saying & know about my child. They also began an appetite stimulant pretty quickly, but there is one problem with it, it makes him so sleepy. Jack came in fatigued, but with this, he sleeps all day & all night. At least someone is getting some rest! The nighttime routine on this particular floor is no different from daytime, they come in all the time, carry on laughing & talking in the halls, changing trash bags. Ugh, kill me now! It would be way more beneficial for me to be a man in this current situation given they can sleep through anything! The team keeps talking about how much Jack is sleeping. I’m like he’s being given this stimulant which is also an antihistamine four times a day, what do you expect? I mean I ain’t got a medical degree but that’s obvious!

Jack is enjoying his nurses & they have been super sweet to him & us. He’s been cooperative for the most part except for the second day, he was done! With the bribery of the money, that has helped. One of the worse parts of this stay has been sleeping in a bra. You never know who’s going to pop in, so I’ve got to be ready at all times. Our prayer needs at this time are for the stimulant to do its job, that we can get the timing right so Jack doesn’t sleep so much, he will start being thirsty again, can use the bathroom regularly & of course get to come home soon. Again, thank you all for the prayers, keep them coming. Apologizes for typos & such, I am very sleep deprived!

Misery

I don’t know when I’ve been this miserable! if you’re reading this, then you probably know Jack is in the hospital at UNC & I am his plus one. For several years now, Jack has been chronically dehydrated. When he was younger, he used to drink all the time, he loved sweet tea, water, & of course Pepsi. As he has aged, the need for food & liquid has drastically decreased, which is why he’s now an inpatient. Surprisingly, Jack handled the news extremely well about needing to be admitted. We arrived around 6:30pm Monday evening, finally getting settled in his room around 9pm. I was able to order Jack a plate of food before the dining service closed, I didn’t order me anything because I kept thinking I would be able to run down to get a snack. The nurse/CNA we had were not great, they were not helpful at all to our needs for food, water, getting things for the room. Prior to Covid, parents could get their own linens & we had access to a small kitchenette with a fridge for drinks, food storage, snacks, microwave & such. Now both have gone away. I had to ask for bedding for this make-shift of a bed, then, only getting one thin, hard blanket. I spent what time I did lay on that thing freezing to death. There was not a washcloth nor towel in sight. I’m not expecting the Four Seasons, but damn, we are being admitted to the hospital for several days, we need something to wash our tails with! The nurse tried twice to get an IV started, then a more experienced nurse stepped in & got it right away. Every nurse goes through this, but Jack ain’t the one to play with! The nurse also forgot everything we asked for. Then she’d come in his room with 1/2 his meds & say they were waiting for the rest. Very unorganized & chaotic was our first night.

Fluids were started shortly after the IV. Getting Jack to the bathroom in our caddy-corner suite is something else. I have to unhook the O2 monitor, unplug EKG, hang those wires around his neck, try to hold him up and the IV pole is something terrible. He stops & inspects every single thing from the bed to the bathroom. He doesn’t want any help getting his pants up & down, so that takes even longer, plus he has to pee in a basin which makes it overly complicated for him because he is consumed with it being something different & unusual. I wanted to scream to the top of my lungs while doing all this. In years past, it wasn’t so bad because Jack was more steady on his feet & a lot smaller. Now it’s basically like a taking a tall octopus to go potty! And the bed I mentioned above, is going to kill me. It is a beast to fold out, I nearly slammed the nightstand through the wall (after getting mad with the bed) last night trying to make room for it. Once the bed is fully extended, the bathroom door can’t be opened so I have to push it in. It seems like that would be some type of hazard. Because the bed head cushion is elevated so high, when I did sleep, both of my arms kept falling asleep something awful. One of the worse aspects of the whole ordeal outside of Jack being sick, is there is a constant ringing outside. Since we arrived, there has been a noise that sounds like a work truck in reverse beeping nonstop. I mean it has yet to shut up. I would love to have a Carrie Underwood moment with whatever that is with a Louisville Slugger! Why do I have to be a hound dog? Sleeping conditions have to be exactly perfect for me to slumber, no light of any kind, no noises at all, & definitely no hard sheets or blankets. I see, hear & feel everything. Not only all that, I never get cramps in my feet, but last night, one foot cramped up so bad every time I moved.

The plan with Jack thus far is to start an appetite stimulant, hydrate, & meet with nutrition. A lot of Dravet kids have feeding tubes which would make Jack’s life so much easier & healthier, but he’s not going to do it. He already semi-refused a nose tube, he remembers having one years ago & it traumatized him. Like Lee says, Jack can get an ant bite & he can make it look like a gunshot wound. There is a risk of Jack developing something called Refeeding Syndrome. It occurs when the body is introduced to extra calories after being in starvation mode & can mess with the electrolyte balance in his body. Labs are drawn every few hours to assess this & try to avoid this syndrome. Jack also has anemia which is coming from a folate deficiency, that is also a very favorable Dravet illness as well.

When we have done hospital stays with Jack in the past, they were more manageable & doable because of his size, no Covid restrictions plus, I was younger. Now I’m a middle-aged 40 year old who is extremely hormonal & irritated with everything & can’t deal with this as well as I used to. Humanity & common sense have faded with the Covid virus. It has made things that were not once so complicated, extremely difficult to impossible. But that’s a soapbox that most don’t want to hear about. Right now, I’m thankful Jack ate all of his green beans & broccoli he ordered last night & a cup of grits this morning. Lee is having to make cobblers & chocolate covered strawberries Lord help him. This has always been my job. He has also had to do the running that I normally do for the business bless his heart. I left a list of Amy’s Commandments with the produce ladies, one of them was “don’t burn the place down” lol. We have really good employees on both sides & it’s so helpful knowing they have things under control in my absence. After all my complaining & ranting, I am thankful Jack is at the hospital, but it’s scary at the same time. With Dravet comes along extreme sensitivity to medications, I am very worried about the appetite stimulant causing either seizures or behavior issues. Which may be what we are dealing with now. I may be bringing Jack home against hospital orders today. He has pulled out his IV intentionally, will not get another one. He’s asleep now. He is very agitated & irritable. So if y’all hear I’m home, you’ll know why. As much as I am miserable, Jack is even more so.

Necessary Evil

Ever been caught between a rock & a hard place? Well this is me almost every single day, mainly with the circumstances involving Jack. We are going to need your prayers more than ever. Many of you know I took Jack for blood work at our local hospital earlier in the week. The results were then sent to Jack’s neurologist at UNC. A few days later, the results came back & it revealed Jack is dehydrated which I knew already & is anemic which he has been for years now. The problem with his lab work, is there isn’t anything we as his parents can do to treat either in the home. With most people, you could say “you’ve got to drink more & eat more red meat & vitamin C foods”, but with Jack it’s not that simplistic. He doesn’t want to drink hardly anything & y’all know how hardheaded he is, it’s his way or the highway. We could treat with iron supplements & I have, but they make constipation even worse for Jack & this is a huge problem for him as he doesn’t poop regular or irregular at all, goes about once every 2-3 weeks. This is a literal catch 22. This is one of the reasons why I have been working on getting a home health agency to come into the home, they could help hydrate Jack & keep a general eye on his health & do labs if needed. We have searched this whole county & surrounding ones for an agency to help us with Jack. They all are not accepting new patients unless he was in the hospital. This gets me to our next rock & a hard place. I mentioned how difficult it has been to find a home healthcare agency that was accepting new patients. They will not accept new patients at all unless the patient has been in the hospital-hence our problem! Jack’s neurologist wants him to be admitted to the hospital for a stay so that home health can be established. They wanted us to come in Friday, April 30, but we had another issue (of course). I took Jack to the bathroom around 1am on Thursday night, Lee was in there helping me with Jack, I stepped out to shut down the house for the night & Lee starts yelling for me to help him, Jack is attacking Lee. He is kicking him, swatting at his head. I go in, grab Jack’s arm to stabilize him because he is so unsteady & thankfully I was able to calm him down. The attack came out of left field. Neither of us knows why Jack did this, it came out of the clear blue. I’ve been trying to wean Jack off one of his medications because he hasn’t needed it, it’s an ADHD medication called Concerta. I’m not sure if the wean attributed to this, it certainly could of, it’s a possible side effect, if it was just him doing what he does, or if a seizure is looming. After speaking with UNC again, it was decided it would be best to put Jack back on his daily dosing of Concerta & wait until Monday. We are hoping over the weekend, he will be calmer & not take the news of a hospital stay in an insane manner

We are skeered, not scared to break this news to Jack. He was a willing participant in having bloodwork for his doctor, but asking him to go into the hospital is a whole other ballgame. It’s nearly a two hour drive up there, he could show out from the one stoplight in Ellerbe all the way to the hospital. I absolutely dread it & even more so with these crazy Covid restrictions. I’m going to be the one at the hospital with him day & night, only one person at a time is allowed to come in. Jack can’t be left alone without a familiar adult with him at all times. I’m sure I will come home with many crazy Covid tales to tell.

Jack had been doing so well behaviorally for so long, mainly because he has been too weak to cut up. I finally just this week had gotten comfortable enough to begin sleeping with our door open & unlocked again. Since 2016, we have slept with the door closed & locked, not anything that Lee & I have ever been completely comfortable with, but were forced to because of safety. So after two nights of sleeping with the door back open, it is now closed & locked again. None of this news with Jack is surprising to us. We all know the struggles he has with eating, drinking, refusing to take medications, refusing to go to the doctor. It was a miracle that he went to get his blood drawn, it cost me a meal from Zaxby’s which he only ate 1/2 of & a Nintendo Switch game that set me back around $100 total. Whatever it took! Jack would of never gone to get his labs done if he would of known what the outcome was going to be, of that I am certain.

Preparing for blood work!

I am absolutely dreading telling him Monday. He could go crazy, he could say yes & half-way into the drive, he could demand to go back home, but what I really want y’all to help me do, is pray that God will grant Jack with a peaceful heart & reaction & willingly go & accept what he needs to do. If he refuses to go, we will just keep on doing the best we can at home like we’ve been doing. The part I dread most outside of breaking the news to Jack, is the sleeping arrangements at the hospital. If you’ve never been in the hospital with someone else or yourself, you’re blessed. IV poles beep all the time, people in & out of the room at all hours of the night, doctors start their rounds with the roosters & that’s when I’m just getting into a deep sleep. They want Jack to be alert & if you try to wake him, he can be combative. Y’all just don’t know how badly I am sick about this stay. I don’t even have any decent pajamas to wear! I own one nightgown & it has little holes throughout. The upside of him going into the hospital (if he goes), is he will be able to have a thorough checkup, all medical questions that have been worrying me hopefully will be answered, & of course, he will be hydrated & home health can start. Please, I plead with you all that pray, pray that Jack will take this news well, react peacefully, & willingly go. I think I may tell him the doctor has a $100 gift card waiting on him when he gets there!

Revenge Bedtime

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.

Pray, try, cry, repeat

It’s been a while since I last blogged about the goings-on’s with Jack. The last time I wrote, I talked about how Jack was in a particularly worrisome state, sleeping most of the day & night, not eating, drinking, nor taking his medications regularly. It truly was a very scary, dark time for us because we didn’t know what to expect from day to day. The very fact that Jack didn’t receive medical intervention is an absolute miracle. He would never willingly seek medical treatment, it would have to be a forced situation & that could get very ugly-very quickly. Several years ago, Jack became combative when Lee tried to urge Jack to shower after not having stepped in a shower in nearly two months. Jack went ballistic by tearing down everything in his room & then started an altercation with Lee. After 30 minutes of trying to get Jack to calm down, we had to call 911 for medical help. Because Jack was tied down & unable to be unrestrained, the attempted attacks went on all night long & into the early morning hours until he had worn himself out. The multiple emergency medications didn’t even touch him. Plus, they caused a life-threatening and what could of been a life-altering response a whole day later as a result of one of his seizure meds not mixing well with the emergency medication, but it had to be done because he was so forceful & full of rage. All because of a shower we spent days in the kids intensive care unit & several on the pediatric floor at Chapel Hill. We went racing up the road in an ambulance that night with nothing packed at all since we were in such an emergent state. And to top things off, I started my period once we got there & had to ask a male nurse for products since the durn gift shop was closed! Periods always come at the most inopportune times-if you’re a male or my child, sorry that I just made you uncomfortable! You’ve not lived until you have taken a shower in an intensive care unit facility. The shower was for anyone staying there so it was a shared shower, “ugh” is all I can say. I had no flip flops to shower in so I wouldn’t get plantar warts or athletes foot which I didn’t, terrible, awful shampoo & conditioner because my options where limited & my hair was so knotty, had to get right back into my day clothes & we all know that trying to put a bra on a damp body is worse than trying to put on jeans that are two sizes too small. Not to mention the shower was in a scary hall, but I didn’t care, I experienced silence those ten minutes, no beeping monitors, no IV getting kinks, no one opening the door to do a new assessment. So now, we suggest a shower instead of urging. If he says no, we don’t revisit the subject or push it on showering or anything else. Thank goodness he’s a cold-natured fella & doesn’t sweat! The point of this whole story is to explain why we won’t use forced medical intervention unless absolutely necessary.

My last post was also about dealing with some bits of depression. What a struggle it is to see your child fight to live each day. Now Jack doesn’t know that is what he is doing because of his mental disability, but we know. Finding the courage to go out into the world each day takes a lot out of me. It would be so easy to do if we didn’t have a business. A business that depends on me each day. Most everyday I leave the house, Jack is still asleep. A year ago & even into early last year, I would never leave the house until he woke up. Then, he woke at normal teen hours & would be wild as a bull in a china shop. He would try to pull my clothes off, aggravate every nerve in my body from putting a wet, dirty mop on my head to hitting me. It was like being tortured by the most misbehaved kid in third grade times 1,000. As Jack grew & his strength grew, the threat of violence on his part became something I was fearful of day in & day out. Fearing my child was not anything I ever thought I would encounter with my kids. As Jack’s needs changed medically, his demeanor has changed, basically he hasn’t had the energy to get out of bed since January.

During this change in Jack, lent was growing closer. Having never participated in lent, I began to wonder what I could do to grow in my relationship with God. How could I show God my devotion to Him? The answer was simple & one that most of us could do without, social media. At night, I would often get on Facebook & scroll aimlessly for hours when I couldn’t sleep. For lent, I decided to go off social media from 10pm-10am everyday, I also decided to give up Pepsi. I never drank them a lot, but they were definitely a special vice when I was struggling even if it was only a 1/2 can, I savored it. Now 10-10 off social media doesn’t sound like anything, but it is to me. It allows me to read my Bible every night, that time is carved out for me, something that I wasn’t doing & any downtime I had to be spent with God had been replaced with social media. I would go off of it completely if we didn’t have a business.

My whole life, I have wanted a worn Bible, worn from reading the word of God, & worn for learning how to apply the word of God to different life situations. I’ve tried to read the Bible many times, I honestly could not grasp it. I sat in church unable to relate to stories in the Bible often times because I had not completed the book. Before lent, I dug out Joyce Meyer’s most helpful book pictured below. If you have struggled reading the Bible yourself, I highly suggest this Bible, it has helped me understand everything that I am reading. I have become fascinated by God’s word. There is so much in only the few completed chapters I have read that relate to my life. The Bible is so much better than any novel I will ever read or have read.

Moving forward, Jack is again not doing well. His neurologist is working on getting a healthcare team to come into the home to help with needs that he refuses to go to the doctor or hospital for. Needs like hydration therapy, Jack doesn’t drink hardly anything at all. I think if he could get that, he would feel so much better & more energized. Also to do labs if needed & they are needed. And possibly be seen by a physician when the need arises. I was contacted by hospice today about his needs, which is a hard pill to swallow. I know he isn’t in dire straits yet, but to even have that associated with Jack, has brought me down to a new low. Now I don’t know that hospice is the right fit for Jack, maybe home health care is best, not sure at this point. We are looking into different options. Jack has little to no desire to do anything now. I successfully weaned him off of one of his behavior meds. I was hoping that it would of made a positive impact on his health, appetite, & lack of energy but all has remained the same. But I am thankful that it’s one less pill he has to swallow. This whole paragraph is the reason why my shirt is wet, wet from tears. Most days, Jack doesn’t wake until 2:30 or 3pm, sometimes naps a few times throughout the day & evening even after sleeping so long, gets up to pee once a day & then right back to bed. He’s not on his phone any more, not playing games or watching tv. The sad part of it is, I have to go to work everyday, do errands, & life. When I leave the house each day & he’s still asleep, a bit more of my heart breaks. I check my phone constantly for news from his caretaker to see if he’s up yet, has he taken his meds, what’s his mood like. It would be so easy to crawl in bed with him & just hold him & not leave his side. Throughout all the violence, meeting strangers online, being catfished, food demands from all over totaling sometimes $100 worth, the attitude, & having us buy gift cards for the catfishers, that Jack has done, I never wanted to see him get low like this. The spans of lows are longer lasting than they used to be which I’m told is a Dravet thing. He is resilient if nothing else.

As I dry my tears from my face & shirt, I look to God for relief & answers. I pray for Jack to be reenergized constantly. I am reminded of different biblical beings hardships. I try to remind myself that Jack does this often, that he is going to be okay. Then I cry again. Pray, try, cry repeat.

The “D” Word

Being a caregiver is never easy, even with the best of patients. There is always work to be done for that person. Meals to be prepared (in our case, takeout to pickup), extra cleaning to do, medication organization, companionship, & so much more. Personal time for yourself as a caregiver is often fleeting. Ugh, I never thought I would feel the way I currently feel on a continual basis. I’ve been through some hardships lately, not only with Jack either. Some things that have changed me & not for the better I don’t think. I’ve always tried to live my life on the lighter side, finding funny moments in almost every situation, even funerals at times (I know, I’m terrible). I am so not the person you want to be sitting beside in church or anywhere a straight face is required & expected, just ask my Mama & sister, they’ve been privy to my hysterics more than once at a funeral or during a church service. Once, Coleman was in a Christmas play where he played a very country bumpkin part. He got so tickled during the play while saying his lines & started laughing hysterically & so did I. I couldn’t even get a straight face long enough to give him the evil eye to straighten up! The whole church was rolling by the time Coleman & I got to laughing-they were laughing at us & I wasn’t even in the play! When you have someone you take care of daily, particularly your child, life can get rough. You all know the demons we deal with caring for Jack. The trouble he has been known to get into online, his medical issues, violent outbursts, & his fierce lack of compliance with going to the doctor, & some of these issues have been going on for nearly 20 years. Couple that with the other issues I’ve had outside of Jack & that equals a recipe for the dreaded “d” word-depression. This has literally taken everything good & fun out of me. I don’t like feeling this way. I’ve felt it before, but never for this long. When Jack was younger & dealing with so many seizures & other health problems, I could get over things quicker because I had two other small kids to tend to. Now, Coleman is gone, Ava is older & does for herself, so the only two things I have to worry about tending to is Jack & our business, oh, & where Mama & I are going to eat. Things settle in my mind & stay there now, often replaying in my head way too many times a day. There are no tiny little feet puttering around to keep my mind busy & active. There is Teddy the dog, but as fun as he can be, he’s also annoying because he is still a puppy & puppy’s are into everything which only makes me irritable when I’m trying to do other things around the house. I think way too much. I hurt way too much. Things I would normally laugh & smile over are no longer thoughts I have. I don’t even order from QVC or HSN any more! Some people lose weight when depressed or overly stressed, why can’t that be me?

As Jack’s medical needs have increased, I spend more time with him than ever. I also spend a lot of time trying to find remedies for his ailments since he refuses to go see a doctor. I reach out to friends on Facebook in the Dravet forum often to get advice. If it’s not his medical needs taking priority, it’s his behavioral needs. I am spent, mentally tired, drained, broken even. I don’t like physically talking about my feelings, I don’t even like writing about them, but for some reason this was laid on my heart to do so. Maybe to explain why I’m different now. I understand the life of a real writer, when something pops into your mind, you have to get it out there. I’m no real writer, but I’m the pencil behind a absolute tiring, no holds barred reality story that I think people need to hear about. We all go through moments of sadness, grief, depression in our lives. Perhaps talking about it can make someone else feel more normal. Really, the stress of Jack’s situation is getting to me. Makes me ill as a hornet because every single day, he has a new demand. Examples of this past weeks demands:

Monday: Wants me to order a piece for his guitar. Also demands to go bowling but they are closed. Questions me to death about the bowling alley as if he worked for the FBI!

Tuesday: Wants me to buy a $30 Amazon card. Calls Lee at 3:30 & tells Lee he is showering to come home & help him. Interrupts Lee’s farming activities.

Wednesday: Demands for me to go to the post office at 12:30 to retrieve his package but they are closed for lunch. So he calls the post office relentlessly until they answer while they are on their lunch break, talks with the post master & convinces her to let me have his package even while they are closed. That’s after I’ve already made it to Rockingham by the way to get supplies for the Berry Patch for the week.

Thursday: Refuses to take medications because he threw them up the day before. Have to find a creative way for him to take them now because he thinks the meds are making him puke (when it’s actually acid reflux). I also get his nurse case manager involved to talk to him about the importance of taking his meds.

Friday: Demands to go eat at Taco Loco for supper. All the while he has a ton of food in the fridge from various restaurants that he has yet to touch all week. Sits down to order like he’s Hugh Hefner with all the money in the world & eats nothing, plus places several to go orders.

Saturday: Calls a young lady that he went to church with to see if she’ll come visit with him that he’s not seen in 10 years. Then calls me while I’m working demanding to go bowling, again. When I told him I was unable to take him today, he told me he was upset with me & hung up on me. Now I’m worried about repercussions of not taking him. Told him I would on Sunday. He’s also demanding his allowance two days early & he does nothing to earn one, oh & asking for a raise in his allowance.

Sunday: I’ve made a promise to go bowling. It’s Saturday as I type this so there is no telling what the day will bring. He will be interested in throwing a few balls down the lane but will gravitate to all the games & want more money.

This is one of the larger reasons of my stresses. The demands are relentless, ongoing, & outrageous. I want to stand in the middle of the street & scream until I can’t speak any more. He has zero regard for our time, our finances, our patience. It is so frustrating to deal with this day in & day out, day after day. Not to mention his sleeping issues, potential for violence, seizures, & general poor health. I’m tired. Don’t alert mental health officials, they won’t do nothing any way, been there with Jack but make me fill out a bunch of papers, or tell my Mama, she knows. I’m not dangerous, only venting. Once the Berry Patch gets up & running & busy, things will get better. Summertime is my favorite season. Hopefully, it will be just what the doctor ordered. In the meanwhile, if you hear or see me screaming in the street, it’s okay, I’m only having a moment.

Female Head of Household (FHOH)

I sit in Jack’s room on Thursday afternoon February 25. The sun is out which has been somewhat of a rarity in the southeast & perhaps the United States. It is also warm outside. I would love to be outside today, the weather forecast for the next week is nothing but rain. Jack hasn’t been well. In my last post, I touched on the fact that Jack was in a state of seizures. The good news is Jack isn’t feeling well, the bad news is Jack isn’t feeling well. I think he might have a little bug (which I hope that’s the reason) & the bug may of generated the seizures & it is not from Dravet in & of itself (or could be a bout of acid reflux). He’s had several bouts of loose bm’s & that alone is not anything he’s dealt with since he was a young boy in elementary school, Jack has also thrown up several times today. If he would go to the doctor, the list of maybes could be easily cleared up. It’s so sad knowing there is help out there for him but he won’t seek it.

When Jack is sick, he is extremely needy-much like most of the male species & he only wants me. Again, fitting for the male species, they typically only want the female head of the household (FHOH). The FHOH title has few benefits. In fact, I can only think of one, caring for your loved one & that’s it. Jack is driving me nuts during this sickness. It is hard being the only one that can comfort him. If he’s not in a full-on sleep, I have to be in his room. More precisely, sitting right beside him. It’s been a full 24 hours since Jack has had any of his medications, so nothing to offer support for his behavior has been taken. He tried to take meds earlier this afternoon, but threw them up. He didn’t take them last night because he slept from 9:30pm-12:30pm the next day. From what I can tell, the seizures are somewhat improved. Jack has been wanting me to lie beside him in the bed & I did until I couldn’t take it any more. He was being aggressive to me by squeezing my legs as hard as he could with his, squeezing my fingers, acting like he was sawing my arms off. It is beyond frustrating. I want to take care of him & help comfort him & he wants me to, but he doesn’t know how to accept the comfort I think. Then I have to make-up a lie in order to get up from his bed & sit in the recliner in his room. Today it is, “I need to sit in your recliner so I don’t catch what you’ve got & that I’ll be able to take care of you”. I am held hostage during his awake hours. I’ve had enough of NickJr! Paddington Bear, Bubble Guppies, all the infomercials of which Jack wants it all. Yes, they have infomercials on kids cartoon networks. Jack has already started on his Christmas list for this year. What makes it even harder, he won’t use his voice. He points & air spells things for me to figure out. Talk about frustrating. I’ve got taxes that I need to get busy on. Farmers, for some silly reason have to have their taxes ready by March 15 & I am way behind. Usually I’ve got it all tallied up, not this year.

I still have yet to hear from Jack’s neurologist. Email them they say, it’s a quicker way to get a response. I’d hate to see it if I called. Maybe writing a letter & mailing it would produce a faster turn around time! I’ve always tried to be sympathetic to medical personnel. We’ve been in emergencies with Jack ourselves so we know what takes priority, but this is ridiculous. He has drifted off to sleep, I’m afraid to move out of the recliner since it is a little noisy when I get up, so I’m hostage once again & he has the remote! The progression of Dravet seems to get worse every year. I was surely hoping that Jack’s young adult years would be smoother sailing but it seems like that isn’t going to be the case. His health needs are becoming more frequent, his neediness for me alone is something he is truly dependent on & obsessed with. It’s hard for me to believe anyone would be obsessed with me lol. It’s usually just weird men that are obsessed with the unusual earrings I wear. As badly as Jack wants me & only me whether he’s sick or not, he still wants a caregiver with him at home as well. He gets upset if no one comes to the house to watch him. This is strange to me. He stays calling me all day & asks me to leave, but wants me home at the same time. All very confusing & taxing to my mind. If Jack didn’t have the aggression, our lives would be so much better & more relaxed. I simply don’t understand why he has to have that trait. Because of the aggression, we often feel like we need at least two people in our home depending on what type of mood Jack is in. One to call for help & the other to hold him down. I have prayed for the aggression to be released from his body more than anything I’ve ever prayed for in my life. I figured I’d do a little blog while I sat in the recliner since I didn’t have anything else to do. To all of you FHOH’s, my hats off to you!

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.

Prepping for Hibernation & a few other things

In elementary school, most of learned about hibernation. When we think of hibernation, we often think of bears. A bear packs away the food prior to winter in order to store calories to make it through the cold winter days & nights. When I learned about hibernation in school, I did not realize I would later live with a bear that practices hibernation at various times all through the year! Jack has eaten more of my home cooking over the last two weeks than he has in 3 years! I’ve made three tremendous pots of chicken & dumplings in 5 days. All we hear Jack say is “dumplings, dumplings, dumplings”! He has literally turned into Jethro Bodine! I only wish we had the clout & house the Clampetts had & of course that cement pond, & who could forget the wooden stick Granny threatened to beat Jethro with all the time-that might come in handy when dealing with Jack & Lee from time to time. Wouldn’t mind having Mr. Drysdell as a neighbor either! As Jack began eating his way through our house, I thought he was eating to become stronger, I only wasn’t sure how the strength would come into play. He really was frail prior to his increased appetite, when you sustain on only a cup of applesauce a day, what can you expect? I thought to myself many times as Jack’s eating increased, that he was eating for an attack. Turns out I was right.

Jack has a hard time, finding middle ground is not something his life was designed to do. He’s either plagued by the seizure monster, not feeling well, or into something that causes trouble. These are three circumstances that I have had to accept being his Mama & that wasn’t an easy feat. I am a fixer. I want to help people the best way I know how & fix their problems. This holds true for not only our kids, but for everyone. If there is something I can do for someone, I’ll do it if it will make their life simpler. I can not fix Jack. I’ve tried every homeopathic remedy along with every medication there is. I could absolutely kick myself for falling behind on what was a near disaster this past weekend. In fact, I have made a note to myself as a reminder that when Jack’s appetite increases so drastically, that I need to make medication changes to compensate for the increased caloric intake. When I tell y’all he has eat, he has EAT! Since Christmas, he has woken up everyday eating chips of some kind. He is currently on a Chester’s Cheese popcorn kick, eating three large bags a day plus plain Lay’s chips. They must be only Lay’s, his extravagant self gets that from me, I’m a Lay’s girl. I bet the inventory takers at the Ellerbe Food King, Dollar General & Family Dollar wonder why the sudden increase in Chester’s Cheese! He wouldn’t touch cheese puffs in the past because they turned his fingers orange, now he can’t get enough & three bags a day aren’t enough. There is cheese dust all over our house. I find it on various things like my dresser, the soap dispensers, my clothes-I am his napkin! He is also on a Fiji water kick, the expensive square shaped bottle. There is some evidence that Fiji water can help some that suffer Dravet syndrome & other epileptic type syndromes, something about the silica in the water drawing out aluminum in the brain. He ironically & suddenly got on a Fiji water high the day after his seizure/aggression troubles, so there’s that expense now. This is his trashcan in his room in less than three hours, and also a picture of him laid up on the bed eating them without a care in the world other than when the next bag coming.

Last Sunday, I put out an urgent prayer request for Jack on Facebook. He had three grand mal seizures & tons of little ones in less than 10 hours on that day. It’s been years since Jack has experienced violent & multiple seizures like that. The first one, he went to sleep right after for about an hour which is the ideal situation for him for recovery after a seizure. Some people experience aggression after these types of seizures which is what happened following the last two. Right after the second grand mal, Jack walked into the kitchen & collapsed. After grand mal seizures, Jack is disoriented, weak, & loses his ability to speak for about an hour. If there is ever a time for him to be violent, it is after a grand mal, but it is still extremely scary. After he collapsed, Jack started kicking the floor like he was trying to knock a hole in it. It was Lee, Ava & myself home with Jack during that time. He then started grabbing everything that was in site, knocking over barstools, kicking the trashcan, throwing the rug, etc. As we called for backup in case he got even more out of hand, we let him has his fit without intervening because that could possibly mean we or he would get injured. As backup made it to the house, we had a porch full of people waiting to help restrain Jack if needed. He finally came back to himself & immediately started crying. Jack hasn’t cried in years. This was heartbreaking because I knew then he didn’t realize what he was doing in that moment but as he was coming out of it, there was some recollection about what he had done. About four hours later, he then had yet another seizure. This one, I stayed in his room with him during the whole event. He was on his bed, wanted to get up right after the seizure occurred but I was able to get him back down, but sure enough, he kept raising his fist like he was going to hit me. I talked comforting & quietly to him & he would put it down, only to lift it again a few seconds later. This went on for 30 minutes. At that moment, I was as spent as Jack. My heart was breaking because I didn’t know what the night had in store for us. I called Lee’s sister to come spend the night with us in case Jack had to go via ambulance to the ER to break the seizures and/or violence so she could stay home with Ava. After calling the peds neurologist on call at UNC, we decided it best to give extra meds to help get us through the night & avoid a trip to the hospital during this pandemic. I prepped myself to be ready for a hospital visit, laid out clothes to slap on quickly, shoes out, medication list out, dishes put up & clothes put away. With Covid restrictions & my nerves tore slam up from the threat of violence on Jack’s end, I told Lee he would have to be the one to go in with Jack through the ER. I can’t face that aggression alone. I handle all the medical stuff, but I absolutely didn’t want to have to go through that, it scares me beyond belief.

I ain’t gonna lie, our night was tough! Jack was awake at 2:30am wanting to get in bed with us.I always deny him sleeping with us, it’s worse than sleeping with a bed of wild hogs, but I couldn’t this time because of the predicament he was in earlier. So it was Lee, me in the middle & Jack in our king sized bed. Of course being a man, Lee slept, I did not. Jack was on me like white on rice. He tossed & turned, kicked, thrashed, sat up, talked, you name it, he did it. Finally not able to take it any more, I kicked Lee & myself out & gave him the bed to himself. I slept about an hour & a 1/2 that night. Scared to be at home with Jack alone the following day, Lee stayed home most of the day with us & his caregiver was here as well. Jack made it an entire year without a violent outburst, his last one was Christmas 2019 right after a seizure. There’s that to be grateful for. None of what we do as parents & caregivers to Jack would be possible without the help & support of family & friends. Mama came to get Ava, but little did I know she was having an active angina attack on her way over to our house. I felt so horrible! Lee’s Aunt Vicki & Uncle Chuck came to help support us, & Jake VunCannon came for backup. I can deal with almost anything I have learned, but the one thing I can not deal with is the violence from Jack because I have learned first hand just how threatening & dangerous he is & can be. I get the phone book out & start calling people when I think he’s going to be violent if the opportunity arises for calls.

I did increase one of Jack’s main Dravet medications & that is always an adjustment to his body & to us. I say to us because the transition on his body affects the way he acts, moves, behaves. This week has been anything but easy. He fidgets constantly, moving from one end of the couch to the other, one room to the other, putting his feet ON not IN your face, doing annoying things, still eating everything. He’s been calling in orders at Number One Diner, La Cabana, demanding for us to take him to the Mexican Hardee’s (that’s La Cabana for the non-locals). Jack’s OCD is at an all time high, he is loosing everything but yet goes nowhere, he’s wanting me to buy him everything under the sun, & he’s been waking up in the middle of the night every single night. We’ve had to put up the coffee pot (Jack was making coffee at all hours of the day/night), my Alexa is hidden (not really sure where, now), the neck massager gone because he wouldn’t leave alone, & so much more. We really have had a stress-ladened week. The good things are he is eating & pooping, the bad thing is everything else! I have to leave my own house just to get some peace & even then it’s not true peace. My time spent away is texting Lee asking about Jack, or Jack calling me, or worrying about whether or not he’ll have a seizure & what will Lee do for backup. It really is a tough situation. We absolutely 1000% could not do it without faith, prayer, & the support of family & friends. Thank you to all that stopped what you were doing & prayed for Jack Sunday. No one was injured & Jack didn’t have to go to the hospital. Please pray with me & Lee that Jack will never have another violent outburst again. I know & believe that God can heal Jack from that affliction. Love & many thanks to you all. 💜💜💜🙏🙏🙏

P.S. Notice all the takeout boxes of food on the counter? This was all ordered from Number One Diner, plus, I was cooking a huge pot of dumplings .