Ode to the old comforter

I will soon be 46 & my menopausal symptoms or PMS symptoms showed-off tonight at 1:15am. I’m not sure which because I still have my curse but I sure was ill as a hornet. Had it not been for Jack’s sensitivity to anything outside of the norm, I would of tore our house down! It’s safe to say most of America is on edge. We have a lunatic running this country, Covid is running rampant, there is a great amount of division, very firm but different beliefs about Covid, Ivermectin, vitamins, the vaccine & just about everything. Not only do I get worked up about all of the above, my neighbor that has the two constantly barking beagles now has a rooster that crows. What fun! Not going to bed until after 2am while waiting on Jack to fall asleep & now being awakened by a rooster is pure & utter torture. Along with the rooster, there are ducks. We live in town limits. This woman literally has her pick of two houses (she owns both), the one she is in which is right beside us or one across the street & all because torture loves me like no other, she just had to move in beside me where her backyard connects to ours. I am the only neighbor that has complained to her, everyone complains to me but nobody else does to her. The town doesn’t do anything either. I’ve already had the police over there. It really is a frustrating situation. I even spent $200 on a box that is supposed to keep the dogs from barking, it does not work, but how can it when the woman has a mini farm out back with chickens & ducks that get hunting dogs wired up? Enough about those nuisances. Any way, Jack has been wanting a new comforter. He really wants a wrestling comforter. Although we aren’t sure why, he never watches wrestling but talks about Charlotte Flair a lot & her Daddy, Ric. Fun fact I found out when Jack asked me to look up Charlotte’s manager, their last name is really spelled Fliehr. My younger Saturdays were spent jumping up & down on the couch rooting for Dusty Rhodes when he & Ric were fighting. I thought the Nature Boy’s last name was actually Flair. It only took 37 years to find out the truth, all because I’m Jack’s secretary! Jack’s comforter was actually Coleman’s. It has been around for many years. It has been peed on countless times, vomited on one time too many, washed & dried, washed & dried, & washed & dried 1000’s of times, all this mainly because of seizures. It came from Walmart & that comforter has been through it. It still looks every bit as new as it did when I bought it. It kind of makes me sad that it won’t be around any more. When Coleman wanted a new one, it was a sign he was growing up, now, I guess that is the same deal for Jack. The end of an era.

Of course Jack wanted me to buy the comforter instantly, but I thought maybe I could get him to put in a little work if he wanted it, try to show him that he needs to work for things he wants even if he can’t “work” for items he wants us to purchase. I agreed we would purchase him a comforter if he drank three cups of liquid a day. I’ve told y’all how Jack has zero desire to drink any type of fluids. When I give him his day medications, he takes two sips, 12 hours later, the same amount of liquid that was there that day is still there that night. He gets that mess from Lee. Lee Berry will eat every meal I cook for him & never drink a drop of liquid & sit in his recliner hiccuping because he hasn’t drank anything (which gets on my last nerve if you couldn’t tell). When we go out to eat, Lee requests for his tea to be put in a takeout cup to drink through the day, he never touches it. I blame him for this & Dravet! Seriously though, Jack has lost all sense of thirst which is a characteristic of Dravet just like not having a sense of pain. What got my nerves so riled up tonight was because of our deal. We had a baby shower for an employee of ours this evening so we didn’t get home until around 8:30. When I got home, Jack had not touched his drink from when I left at lunch. I reminded him of our deal. It was a mini-bottle of Sunkist, something most young adults would throw back in a matter of minutes. He held it, nearly spilled it several times, held it some more, two hours went by-nothing, still the same amount as before was in the bottle. At 10:30, I reminded him he only had 1.5 hours left before the deal was broken. He then requested a grape koolaid drink. I took it to him. At 11:15, the Sunkist that he held for hours did exactly what I thought it would do, spill all over his bed. Jack would not get up for me to clean it either. This is the kid that if he gets one droplet of water on his tshirt, he must change immediately. He was soaked & so was each layer of the bed. Jack is extremely particular about his bedding, you’d think he was Martha Stewart so I knew this was going to be an issue. I don’t consider myself a frivolous person. I love to recycle, use what I have until the last bit is gone, if I don’t like something, I find someone that does, I recycle everything & I definitely do not have anything in excess, sheets being one of these-that is changing after tonight’s ordeal! By midnight though, Jack drank the grape koolaid, plus a cup of water so he made his goal, mostly. With aggravated nerves about the spilled drink, he had me pour the water that was already in a glass into another glass before he would let it touch his lips. What an annoyance to me & only added to my frustrations!

Naturally, Jack would not get up until 1:15am for me to clean everything up. He expected me to wash his bedding, wait on it all & then makeup his bed. It would have been 5am before all that would be done! I’ve written a blog about my confounded washing machine before & it is not a kind one (neither the blog or my washing machine). It takes 1.5 hours to wash sheets in my machine! Maytag lies! If the makers of these washing machines would spend less time worrying about the lid locking (which is a child safety precaution) & running more water to fill the washer, they might could make a washing that actually cleaned clothes (this makes me heated as well if you couldn’t tell). I mean I have never! I never as a child had the urge to climb inside a washing machine & if I did, I surely wouldn’t turn it on with me inside. It’s the adults that are the stew-pied ones in this world, people with big fancy degrees (and no offense if you have one, if you have stuck with me throughout my blogs, you’ve got good sense lol). So at 1:15am, Jack finally decided to get up & let me wash his comforter. I told him there was no way it would all be done soon, his response was he could wait up on it. But I knew what would happen. He would fall asleep around 2am, then wake at 4am angry because his bedding wasn’t on. I had to improvise or else I knew there would not be any sleep for me. Without a spare set of sheets to fit his bed, I ended up having an extra set for mine & Lee’s bed which is a king size, Jack’s is a full. Jack was in the bathroom while I was stripping down his bed & everything was going wrong. First, I was changing a bed at 1:15am. Secondly, he spilled that drink on purpose to get out of drinking three cups of liquid. Thirdly, he had every piece of junk & tiny guitar picks piled up on his bed. Most of it was so small I couldn’t see that it was on the bed & it fell on the floor. Making a king size set of sheets fit properly on a full sized bed for Mr. Martha Stewart himself is not an easy job. I was having hot flashes, I was ill, I was tired. I slammed the remote down that of course fell on the floor. I wanted to tear the house down at that point. Thankfully, Jack was satisfied with the sheet placement, my improv passed inspection!

So a story about a spilled drink led to several other stories all to get to the point of me on the verge of a nervous breakdown all because of changing the sheets at 1:15am. The crazy things that goes on in our house after midnight is so funny to me when I look back on it all (after I have calmed down). All I can say is, I am so thankful I was not doing all this from a hospital bed. Each day Jack avoids the hospital, I am a happy camper. We often have to find blessings in unique hiding places! Here’s to hoping Jack can holdup to his liquid intake deal for a week & that it sparks a natural thirst. I’m also going to be making some medication changes so if you will be in prayer for both of those requests, our family would appreciate it. Now go find your blessing in a crazy way! Cheers!

Preying vs. Praying

Life is tough, I think that has been the beginning of many blogs to describe life for our family. Life is also weird. Our lives are often tough & weird at the same time. Tough for the obvious with the challenges we face caring for Jack & weird based solely on the Bermuda Triangle of Dry Land, aka The Berry Patch. It was only less than two years ago that we were dealing with the unbelievable with Jack. It is so hard to believe that he called a taxi & got in it just a few years ago. If you missed that blog let me know & I’ll send it to you. Jack’s behavior was also through the roof. We were running around town all the time buying gift cards for people that were scamming Jack claiming they would be his girlfriend, he told me one night that some gal was gonna move in with us & there was nothing I could do about it, & he talked to all sorts of strangers & told them all where we lived, we owned The Berry Patch, practically everything about us. He was looking at inappropriate images, talking about inappropriate things & not even understanding what any of it meant. Jack also did things that I can’t even speak of & never will. The summer of 2019, Lee & I were really getting serious about residential placement for Jack. I started recording Dr. Phil even though I dislike those type of shows to see if he had anyone on there like Jack & what he did to treat them, I have never once seen a case like Jack’s, even wrote to Dr. Phil but never got a reply. We went through complete & utter hell as a family. Jack tormented us & had no idea he was doing so. Jack was oblivious to our fear of strangers showing up trying to move in, kidnap him or Ava, the financial burden he placed on us multiple times a day with buying gift cards for a strangers affection, plus the fact that he could whoop our tails in a matter of seconds. I was armed at home with mace should Jack attack. We absolutely had a disaster on our hands.

Practically Jack’s whole life, we’ve been involved with a social worker for this or that reason most because of his medical needs, but as I mentioned above, the summer of 2019, we were preparing to place Jack somewhere so that we were not threatened on a daily or lived in sheer terror of him. I learned that there was no place for Jack, or that’s what the social worker basically told me. Now I know nothing would be like home nor would he get cared for like he did at home, but something had to be done, Jack’s behavior was killing us. I wrote many, many blogs begging for your prayers for Jack. We prayed ourselves for the evil to leave Jack & the sick people that were preying on him to leave him alone & for Jack to loose complete interest in the apps such as What’s App? or dating sites which was causing so many problems. While strangers were busy as bees preying on Jack, we were busy as bees praying diligently & fervently for Jack to find complete & total disinterest in the bad things the internet had to offer.

While we wanted an instant miracle, God had other plans. For years, the torment continued from Jack. Physical abuse from him, scary situations he would get himself & possibly us in, & he was plain mean. He would talk to us terribly & Jack has a very caring heart. It was so scary that I keep a bottle of wasp spray in the living room prepared to blind the predator that might show up that day. Not to mention he would stay awake for days on end. It was a really trying time for us. I’m not ashamed to admit it because God knows my faults, but I would fuss at God & wonder why every single aspect of Jack’s life had to be complicated & scary. I am ashamed of thinking God had given up on us as a family, on Jack. I did not keep the faith throughout. I am weak. Though weak, God helped us through a horrific situation that only God could. It took a while, but it was in His time. The day will come when I ask God why we had to go through such hardships with Jack. The answer has got to be something amazing! It took a long while as I said for things to change. The change took place when talk about Covid started to arise, late in the year of 2019. This was the first time Jack’s health had significantly shifted, ever. The shift was something most Dravet families have dealt with or deal with on a daily basis. Jack was always like a bull in a china shop with us, so the change was slightly welcomed but also new & uncharted territory. In the mornings prior to his change, he would get up bouncing off the walls, calling everyone in the world, would grab hairbrushes & throw them at lights & bust them, pick physical fights, he ate lots, & drank tons of fluid. After following up with the social worker about the lack of facilities for Jack, I told her to hold off because the Covid restrictions were so rigid for people in homes & restrooms, plus, Jack was doing really well as far as the bad stuff was concerned. I can not imagine ever placing Jack somewhere but I certainly could not ever imagine putting him somewhere where no visitors were allowed. It breaks my heart so much to think of the people in those types of facilities that could not have any family support & they did not understand what was going on in the outside world, which I don’t either myself either any more.

During my prayers when Jack’s behavior was so threatening, I prayed that the evil Jack partook in would cease. I begged God to stop it, pled with Him & He did. It wasn’t immediate, it wasn’t within a month, but it happened. Were these changes something we willingly would have asked for if given a choice, the answer is no. The changes that Jack has gone through have been difficult to accept from all of us. As the changes in Jack’s health began, we thought it would be temporary, now we are learning that it may be permanent. I question myself often wondering if I prayed for this for Jack. Realistically I know that I did not. I asked for changes, but I didn’t really know what kind we would be granted with. Acceptance of Jack’s newest condition is a hard pill to swallow, however, it is God’s will. Is he healed from all of craziness we had to be privy to, I’m not 100% sure on that. We are not sure if he will ever revisit that again, but we sure hope he doesn’t. Jack still has violent tendencies, still has refusal bouts for medications, still has a lot of demands, these are manageable. He has not tried to move a stranger into our home in 1.5 years, he has not called a taxi to take him to Dollar General to buy a gift card for a fake girlfriend who is catfishing him online, he is not talking to us in rude, derogatory terms like he was previously. This is what we prayed would stop & it has. All the glory to God for blessing us with that miracle!

Jack is weak now, but he is the most resilient person I have ever known. He is not in need of a hospital stay at this time. With the help of his hydration nurse, the hospital has been avoided, praise Jesus! He eats about every other day now, which is leaps & bounds better than before & drinks more now. I am so very grateful that the bad bad is gone. The lesson I have learned is to not give up on prayers. Prayers are heard. Prayers are answered. They are not always instant which we think they should be. There are days that I’m down so low thinking about Jack being weak & not eating, but I try to remind myself where he was. Jack is now more tolerable, sweeter, & so much easier to get along with. I cherish the days he is mobile & wants to get out of bed & interact with us. I absolutely loved taking him to the movies last week no matter how much it cost. It was a blessing to me, I would of paid $1000 if that meant getting him out of the house & having fun. He loved the game room most of all. It was a perfect situation to take him because no one was there & I mean no one. I feel so sorry for the movie theaters now. Please go out & support them, do it in honor of Jack! Just be sure to take a suitcase with you in case your child plays in the game room, you may come out with a ton of loot like me!

Jack’s loot!

Confessions of the sleep deprived

If you have a healthy child & you don’t already know it, you are blessed. Now I love Facebook. I love seeing pictures of friends kids smiling, playing, interacting with other children, it’s truly a wonderful sight, but it also hurts. We rarely got that gift with Jack. Seizures were always at the forefront, stopping any sort of fun, extra activity we tried to have as a family or just having fun being a kid. Jack could jump on a trampoline for ten seconds & boom, a seizure would strike. Had to get rid of the trampoline. He would have seizures at VBS, had to quit going. He would have seizures during family gatherings, had to limit those. Have seizures during every birthday party he ever went to, had to stop going to celebrations. When the kids were smaller, riding bikes was not something they could do much of because the exertion it took to ride one induced seizures. The normal everyday occurrences that we all have taken and/or take for granted, had or have to be shut down for Jack, & that also meant a division in the family. Either Lee or myself would stay home with Jack & the other would take Coleman & Ava here or there. Rarely has there been any unity with the five of us. If so, it’s at Christmas & we are all walking on eggshells even then.

Most of you know Jack recently celebrated his 20th birthday. Jack is the type of person that starts planning his next birthday the day after his special day. I felt like the excitement of his day of birth was contributing to his refusal of food & liquid, much like what happened Christmas of last year. He was so anxious & worried about what every single person in the family was going to get him, it worked him into a big ole knot. Though it doesn’t look like it from the outside, one of the characteristics of Dravet is not being able to properly handle excitement like typical people. Couple that with severe constipation from refusal to eat, drink, & take his medication, it’s a recipe for disaster. Jack has zero reasoning skills, so I can’t sit down & talk to him about the damage he is doing to his body, although I have tried. Come hell or high water, Jack was going to Chucke Cheese to celebrate his birthday. Picture trying to take an already fragile human to a game room, but imagine taking a fragile human that hasn’t eaten or drank anything of significance in weeks, nor pooped. It was awful. Jack couldn’t hold his head up for nothing. Being dehydrated causes low pressure. Low blood pressure causes fatigue & other things. Jack could not hold his head up, couldn’t talk loud, did not interact with any games. We have celebrated countless times at CC & each time we have always had to pry Jack away from the games to get him out of that place. This time it was rather easy to get him to leave because he was so tired. He got in the car & crashed. He slept the whole way home, Lee had to carry him inside the house, he slept all day & evening, just completely wiped out. The next day, I felt sure he would be hospitalized soon. Thankfully, Jack slowly started to come around the day after his birthday. He asked for drink, asked for things to eat & ate them. What a relief! I had already sunk into a deep depression thinking about going back to that hospital under such terrible restrictions with Covid. I mean I was down. I made myself sick with worry because I knew I would be the one to stay with Jack & not be able to leave for a breather since the hospital has become more locked down with the increased number of Covid. Doing that alone with Jack is so stressful but only because he can be extremely uncooperative & violent.

Jack has been eating, not a ton like he has during his other extremes, but enough to keep him home. There is still a HUGE resistance to taking his digestive medicine, I am praying for a bowel movement so big we have to call the plumbers to come unstop the line! Jack has still got his days & nights mixed up, hugely. As I work on this blog, I am watching him sleep. He fell asleep around 5pm & is still asleep at 12:45am. I am up because he typically awakens around 1:30am when he sleeps like this & he needs his seizure meds particularly because he didn’t have his day dose, refused to take them. He woke up one morning at 5am, didn’t go to bed til 2am & stayed up until 11:30am only to go back to sleep. Reminds me of a babys/toddlers schedule so much. Only this go round, I am much older & iller to have this kind of lack of sleep. If I don’t get a decent amount of sleep (at least five hours), my heart goes crazy & I have been feeling it last week & this week. I have a minor issue of mitral valve prolapse, nothing too serious, but inadequate sleep causes me to have extra heartbeats as well as tachycardia.

Speaking of hearts, how many heart attacks can one have before they fall over dead? About a month ago, it was the blind falling in our bedroom that made Lee & I think someone had busted the window out at 3:30am. We were completely skeered too death! The last one happened just a few nights ago. Ava has something called cyclical vomiting, think of it like having the symptoms of a migraine without the headache, vomiting spells & severely upset stomach. She’s had it for years, took an episode of Grey’s Anatomy to figure it out (literally) & a doc at Chapel Hill. We thought she was outgrowing it, until she gave Lee & myself our most recent heart attack & I’m not even lying. I am an organ donor, if anyone gets my heart, they are going to be getting a strong one or a worn out one, 50/50 shot! At 3:30am (the witching hour in our home), I heard a murderous scream from upstairs, Ava was hollering my name. Lee & I jumped up thinking someone was in the house or knocking on the door. I ran upstairs & Ava was having a spell. After tending to her, Lee told me he twisted his ankle getting out of bed, then ran into a drawer he opened. This is a wild place to live! I was recently called a Karen & self-absorbed for complaining about my neighbors barking dogs that we’ve been forced to deal with all summer long & told by this person I needed to sleep more which is ironic because it’s her dogs that are keeping me from doing just that. This only adds to the list of wildness that I am surrounded by.

She also told me I thought I was the only one with daily struggles which is just not true. I know the struggles a certain friend has with her job, various friends with a multitude of illness and/or hardships, the struggles a friend has with the loss of her son. How any of that is relevant to her dogs barking I don’t understand. I know that our struggles with Jack are not the only ones in the world, I’m merely a select few that chooses to write about them. Sometimes strange, funny, sad or all of the above. I wish I didn’t have stories to write about. I want to not have struggles, but the reality is we all have them, big or small. Struggles are relative, but struggles create courage. Our family has had to face some of the most unimaginable things ever, but the one blessing I pray each of them gather from the stress of our lives is the gift of courage. If we don’t have courage, then we no longer have drive. My drive looks different everyday depending on what has gone on at work or with Jack. Some days my drive looks like this, an unmade bed. 99% of the time, I make our bed, but every now & then, I can’t muster the energy to do that little thing. It takes no time at all & has always been a priority of mine as an adult. Makes me feel better, sets the tone for the day. On the days I can’t, I shut down, I am depressed, but thankfully I have courage & soon gonna have an air horn 🐶🐶🐶!

Outdone

I am outdone, I have met my match. My match would be Jack. I get so very annoyed & irritated with him. I know he can’t help it, but that doesn’t make our dealings with him any easier. It baffles me how he doesn’t have any urges to drink any form of liquid for days on end. Although the hydration therapy has helped some with Jack’s energy level, it hasn’t restored his need for thirst, although it has helped with his hunger cravings slightly. I would like to be a 45 year old runaway & I’m being dead serious, but then I think about what the consequences would be & I think better of that option. Poor Lee would have to become me & that is something that even Bruce Jenner isn’t able to do! The daily struggles of trying to get Jack to sleep, trying to wake him, trying to keep him awake, getting him to take his medications, trying to beg, plead, deal with him to get him to eat & drink even the tiniest of morsels is becoming more than I can handle mentally. When I worked at the hospital years ago, I used to have to go to the psychiatric unit to do EKG’s, I thought it was a creepy place, now, it doesn’t sound like a bad place to go! If I even tried to express in writing what a typical day has turned into with Jack, I would be unable to convey the extremes. Not meaning to sound boastful, but we literally bend over backwards everyday to try to accommodate him so that he may do any of the above things listed. The lengths we go through each & every single day are unimaginable. I’ve always said even Steven Spielberg couldn’t make up a story like ours & it just absolutely makes me sick that our lives have come to this. Jack will never understand what I have go through to ensure he doesn’t get into an altercation with us. He’ll never understand the money we have invested in him on a daily basis to keep the peace. He’ll never know the hours upon hours I have spent trying to research things that might help this condition or that condition. The amount of reading I have poured into my brain to try to better understand him or help him. The fights I have had to go through with Social Security-the harassment from that office alone is worth a lawsuit, the phone court cases I have had to do to get insurance to pay for his medication, that damn elf that leaves special surprises throughout the year to try to entice him to eat. The list is endless. It now feels like I have done all of this for nothing. I don’t want it to feel that way, but it does.

As a parent of a severely disabled mentally & physically child, you never get a vacation, a relaxing moment, or peace. I guess this is a woe is me blog. Will I be admitted to a psych unit? Doubtful, but who knows. I do try to make the best of our situation, but it gets to be too much when you have a child that will not give an inch. This is a rundown of Tuesday & some of Wednesday:

11:30pm Monday, Jack goes to sleep without taking medications.

3am Tuesday just a few hours later, Jack wakes up. It’s too late to give him his medications, plus, I’ve only been asleep around an hour because Jack typically wakes up around 1:30am when he goes to sleep early. He did not, waited til 3am. Played with his guitar & on phone. He was up til around 8am, that’s when he hollered for me because he was falling off the bed. Had to go put him back on it.

8:30am, both Jack & myself fell back asleep. I didn’t wake til 11am (which I hate sleeping that late), he didn’t wake until 2:30pm & that was with begging & pleading. Meds didn’t get taken til 3pm & that’s very late. Ideally the meds needs to be taken at 10 or 11am & this is because he is on an ADHD medication that impacts sleep in a negative manner if taken to late.

3pm, wants Pekin Wok (Chinese). When I go to town to get supplies for the Berry Patch, I was going to pickup food. Just my luck, the restaurant closes on Tuesdays now, I guess yet another casualty of Covid. I had an appointment in Moore County at 4:30 so I just said I would get food there. After my appointment & running a few errands, it is discovered that no one in Southern Pines/Aberdeen (the area I am in) serve the Chinese food Jack is requesting, so I have to go back to the other side of town again to get this food & boy was it expensive-$70 worth. I come home, give him the food, he eats NOTHING! This truly makes me angry. Lee & I work so hard to make a living & Jack wastes so much of it. Case in point, he also wanted a new phone case Tuesday because he doesn’t like the one he bought two months ago any more. I couldn’t find one to fit it, Lee went to Family Dollar & bought two & neither one fit. He also fell asleep early again without taking his meds & woke up at 5:30am ringing the bell for us to change his clothes. He had taken off all his clothing except his underwear. He could of easily put more on, but no, had to involve us. Was up for a few hours & fell back asleep yet again & had a hard time waking up. He is sleeping, but he’s not sleeping good or at the right times. The next thing he wanted to do was go to Walmart to get a 1941 Batman comic book. He doesn’t care a doodle about a comic book, but wants them for some reason. When I tried to explain to him that Walmart doesn’t carry old items like that, he didn’t believe me.

Our hands are tied with Jack. We can’t force him to do anything. If we try to force, we are met with a force that will tear the fool out of you. The resistance from Jack is enormous. It is heartbreaking because I know there is help for him in the eating & drinking department with taking the appropriate medications or a feeding tube, but there is a saying that used to be popular, “my body, my choice”. This is essentially what Jack is saying to us without saying those exact words when we try to get him to go to the doctor or suggest a new treatment option. There is only so much we are allowed to do. With that being said, Jack is not only suffering, we are as well. We suffer in that Jack’s health is failing & our hands are tied & it is breaking our souls. We are also outdone that we do so much & nothing helps. Even talking to Jack about what is required to live hasn’t helped. He literally has only had four sips of water over two days & that was only to take medication. Now imagine us trying to do all this & hold down a regular job, another reason why we are grateful for The Berry Patch, the people that support us & the wonderful people that work for us. even if we do work like Trojans. I say it at least weekly, there is no help for the mentally ill.

This is nothing but a venting blog. People still stop & ask me about Jack when I see them around town, so I wanted to do an update too. Poor Ava had two of her wisdom teeth cut out Monday & is trying to recoup. She was originally supposed to get all four out but the doctor changed his mind about the other two when we got there saying that the top two were still in her sinuses, so she’s got to go through this all over again…allegedly. And Coleman had a virtual interview for a potential job in Idaho today. Things are changing for our family, but Jack’s situation has remained the same. Thank y’all for listening, thank y’all for caring.

Vacation Aftermath

I don’t know about with you, but often times there is hell to pay when you come home from a vacation. I wouldn’t exactly call ours a vacation, it was just two nights & I got severely sunburnt. I tried the Preparation H cream, poured a beer on me which nearly caused me to die because it was so cold, & many other remedies. Our vacation centered around the water from our evening speedboat ride, a day by the ocean unfortunately resulting in a severe sunburn but totally my fault (my belly hasn’t seen the sun in 10 years), a dolphin cruise, but regretfully our parasailing adventure was canceled due to a storm, eating of course & nothing decent enough to speak of. I was blessed by our Creator in many ways, cooking was one of those blessings, it’s also a curse. It is so very hard to enjoy a meal without critiquing how it could improve. I’m a hard restaurant sell & I really wish I wasn’t. Other than having severely burned skin, I came home to a home without Teddy-he’s at training camp, plus, I came home to a sleepy Jack at 5:30pm who hadn’t drank anything all day or ate anything other than an applesauce. It’s so very hard to keep this life going at the pace we do. I tried so many things with Jack when I got home from mashed potatoes & gravy-he spit them out on the first bite & he usually loves them. I tried some of the protein gelatin cups I bought before he went into the hospital two months ago-spit it out. I can’t blame him on that one, it stunk something awful. I gave him some vitamin chews that are supposed to stimulate his appetite after all that. I also made a protein pudding cup that is currently chilling & I’m praying he’ll eat that. After doing all that & with all the encouraging in the world, I wanted to have a mental breakdown because he didn’t eat anything. This lifestyle is exhausting mentally more than anything. I get so absolutely frustrated with Jack’s circumstances. He can’t help any of it I know. Trying to maintain a household, a business, & the full-time job of tending to Jack is a lot on a person. When I left on Tuesday morning, Jack had two Gatorade’s on his nightstand from the previous day, when I got back, he had drank some out of those Gatorade’s not much & only a few sips of water through Thursday. When I came home, I tried my best to get him to eat all these things, drink different things. Nothing was good enough. He wanted a Mt. Dew in Coleman’s Wolfpack cup, but never drank a sip. Then he told me he wanted it in his Daddy’s Rockingham Rockets glass. He will do absolutely anything to get out of eating & drinking. I just had to go in another room & cry because I got so irritated with him. After going through his list of demands, he still doesn’t eat or drink.

All this with Jack’s decline started a few weeks ago when he started worrying about his birthday. He’s a child that starts planning for his next birthday the day after his birthday. With Dravet, the kids can not handle excitement. A lot of the time seizures result during special events or gatherings. Lee & I both think some of Jack’s problems this go round are due to anxiety over his birthday. The anxiety causes him to be knotted up inside with the inability to eat which in turn has caused him to be lethargic amongst other things. All he thinks about when he’s awake is his birthday, going to Chuck E Cheese, his cake, & what gifts he’s going to be receiving. Jack tells everyone what they can get him. I’m not saying this is the whole issue, but it’s definitely contributing to it. When I returned home from our beach trip, Jack was listless, down, even like that for the two days I was gone, but as the evening progressed, he perked up, played his guitar, played music. It was like he was depressed that I was gone. I am his BFF. I never wanted to be my child’s BFF. I wanted them to be able to experience a best friend on their own & keep the friendship/mother/child relationship separate, at least while they were young. Then as they got older, I would welcome a best friend relationship. As you can tell, having a physically & mentally ill child that relies solely on me is very difficult. Every single day it is something. Whether he’s feeling good, drinking lots, eating lots, I’m having to run around town buying food or gift cards for him. If he’s feeling bad, I run around town trying to find something for him to eat or drink. It’s completely crazy the lengths Lee & I go to accommodate Jack.

Another extreme we went through was just yesterday. As I’ve mentioned, Jack is getting back into bad shape again with not eating or drinking. Partly because of Dravet in & of itself, also because he won’t take his pooping medication like he’s supposed to. When a person gets dehydrated, their bowels get dry-up. Dehydration also causes fatigue, vomiting, low blood pressure, all of which Jack has exhibited. Back when Jack was last hospitalized at UNC, a local friend told me about an in-home hydration service. The service is provided by an RN. She comes to your home & offers hydration and/or different cocktails like vitamins to help perk people up & avoid a hospital situation. Of course this is not covered by insurance, but it beats the alternative. I talked with her Thursday & she came out on Sunday afternoon. Jack was very receptive to her, she was so wonderful with him. She gave Jack two bags of fluid & some vitamins. After the infusion, he requested some soup & drank it all, even drank two cups of drinks. A huge win! I purchased from Amazon (thank goodness for the convenience of Amazon) calorie boosters that don’t change the flavor of food or drink that gives him an additional 330 calories from one small cup. Some of you enjoy my blogs, some think that I shouldn’t disclose this information, but I am grateful for our story being shared. Without me sharing Jack’s story, I never would of known about the in-home hydration therapy. If you’d like more info on this service for yourself or a loved one, here’s the info: https://hydreight.com/bp-charlotte/

On a lighter note, Jack’s new guitar has been replaced. In case you didn’t know, we lost Jack’s old guitar & we had to buy another one (another reason to be thankful for Amazon). I don’t know who was happier to get the guitar, Lee or Jack!

The goal is to try to get Jack on a biweekly hydration schedule to help curtail a hospital stay. We surely don’t want to have to go that route again & he is adamant about not going to the doctor. I blog in weird places, right now, I am sequestered inside Aldi after doing my Berry Patch shopping because it is raining so hard. And of course there’s a strange man that won’t stop staring at me, he’s giving me the creeps. Over the last three days, I have seen enough rain (and creeps)! I’m also starving, might start eating the beef jerky I bought inside the store! I wish Jack had a little of my hunger pangs & I had some of his lack of desire for eating. Life is never an equal balance for us, although researchers say it’s important to have balance in all areas. I have an over abundant surplus of stalkers, hunger, weight, & more distress than most people. On the other hand, I have not enough sleep, time, or sanity. And I’m a Libra, our sign is a balance scale! Plus, I slightly hit Lee with my car today (he is okay). I did tear into the jerky’s, I bought four varieties. Three will land in Lee’s truck (I give him everything I don’t like), the clear winner is actually the pig jerk. It’s softer & more flavorful.

Any who, y’all keep praying for Jack to bounce back without hospital intervention. 💜💜💜

A trip to the beach

Y’all I’m at the beach for more than a day! Well, it’s only two nights but I’ll take it! I’m away for from home without Jack for the first time since 2018, unreal. This was a reluctant beach trip on my part because of Jack. I don’t like leaving him & upsetting his routine in the slightest, but when you have more than one child, it’s hard to not do that sometimes. Coleman doesn’t care a hill-of-beans whether we go anywhere together, & if I’m honest, Ava doesn’t either-she’s a teen & probably hates her parents right now lol. How I would love to have Jack here with us if his circumstances were different. He would love the ocean, picking up shells, the fireworks people are STILL shooting off, the rides. Unfortunately, it’s hard work taking him anywhere & he physically can’t handle the stimulation. Coming to the beach is a definite treat, I love hot weather, the sun, the fun, but it’s also something I don’t enjoy because it involves lying to Jack about my whereabouts & possibly disrupting his routine & the people that help me out to make this trip possible. On this trip, I brought Ava & two of her friends. This was much needed for Ava more than anyone, I’m fine without ever going anywhere. What I wouldn’t love for Jack to be divinely healed so he to could share in the fun things of life. We’ve enjoyed our first day here. We ate of course, bout had to show a little gal at the hostesses stand of the restaurant what manners were, went to Broadway at the Beach & rode the wild & crazy speedboat. Ava didn’t want to originally ride it, but was glad she did-so much fun. The boat captain drove like me so she was used to it! When the Berry Patch does whatever it does at mine & Lee’s retirement, I’m heading there to get me a job as a captain, wonder if they allow knee driving? A DJ came around with his music & microphone playing Staying Alive while we were waiting in line for the boat ride & just because I wasn’t doing the John Travolta, that man called me out in front of everyone. Out of 200 people, I’m the one that gets called out.

We tried to go to Krispy Kreme & foolishly, they close at 10. Now ain’t that ridiculous? Why at Myrtle Beach would they close so early? Probably couldn’t find any help, oh well, that’s another topic for another time. Now we are sitting on the balcony of our hotel listening to the waves crash at 11:30pm & watching fireworks. It’s nice watching the fireworks considering I didn’t get to see a one of the ones we sponsored for the Fourth of July! I broke the news to Jack about me not coming home as late as possible Tuesday evening telling him Ava wasn’t feeling well & the doctor that is going to be doing her surgery in a few weeks needed to do some testing (she’s having her wisdom teeth extracted soon). I hate lying, I certainly hope that doesn’t come back on me. Jack was sympathetic, but said he didn’t like it. Mama stayed behind to help with Jack overnight & into the morning. Lee gets up very early & has a hard time understandably staying awake while waiting on Jack to go to bed which can get pretty late sometimes & sometimes he doesn’t go to bed at all! I am very thankful & grateful for Lee, Mama, & Sherry (Jack’s main caregiver) who have made this trip possible.

Our plans for our only full day here on Wednesday are to lay out (such a southern term), go parasailing, find oceanfront dining if possible for supper, & trying to get a Hot Now Krispy Kreme doughnut. Note: I don’t even eat them, just trying to give them the full beach experience. All people love KK doughnuts except me. I was telling Mama late one night about how hungry I was, she said “well, I normal person would eat a bowl of cereal”. I asked why I wasn’t normal, I hate cereal, too. Give me a raw turnip with salt or a cucumber at midnight & I’m satisfied! It’s so peaceful sitting on the balcony listening to the ocean, but melancholy at the same time knowing half your heart is back in Ellerbe & being lied to. Also, Teddy went to training school today so he won’t be home when we get back, I’m super bummed but he needs some schooling! I bet he thinks we’ve abandoned him.

Many of you have asked how Jack is doing & the news isn’t great. He’s hanging in there but totally out of the popcorn phase. I knew it would come but I was sure hoping it wouldn’t. The eating he was doing has come to a near halt. He once again got backed up because of the lack of food intake, liquid intake, & not willing to take his meds like he’s supposed to. After many attempts to make him poo, he finally did but it only stimulated his appetite a little. These cycles are a commonality with Dravet. I’m just hoping he doesn’t get in the same shape he did before his hospital stay a while back. I’m praying his appetite will become stimulated again. It’s all or nothing for Jack. I’ve got some tools in my back pocket I can use & will at the end of the week if things aren’t looking better with his eating. The ups & downs of this syndrome change like the wind. Jack had a virtual appointment with his new doctor as well as labs & a chest X-ray last week. All was great with those, good news! I was actually very concerned that his hemoglobin was dropping again but it hadn’t. I was also beginning to wonder if I was going to be able to make it on our beach trip, Jack turned very irritable over the last few days, but he has since normalized.

Y’all join me in prayer that Jack’s appetite will increase if you will. Also pray for us as we parasail…I’m skeered! I’m actually more nervous about being in the ocean water when we come down because I do not like being in water I can’t see through. It feels weird not being at home as I have now just crawled in the bed of our hotel room. There is no shutting down of Jack’s room, unloading piles of Power Ranger toys off his bed, I won’t have a baby monitor to listen out for, or peach cobblers to make. It also feels dirty, like just plum dirty. I don’t like others peoples stuff. Y’all know my experience with the one bedbug, I’m always worried about getting another one or 500 because I’m pretty sure insurance won’t cover me burning down the house in case we get an infestation! We also get breakfast here complimentary which I haven’t eaten breakfast in years. And I can’t believe I forgot my floss, I feel even dirtier now! Night y’all or good morning depending on when you read this. 👙🐬🐠☀️🌊

Less than four

Years ago before I ever thought about getting married or having kids, I many different jobs. The one I loved the most was when I worked at David’s Produce. I began working there at the age of 11 making like $2.85 an hour, sounds crazy to even type that-man I’m getting old! It was a business much like The Berry Patch except they didn’t have ice cream when I worked there & they had plants. I learned a great deal about the food we eat & flowers while during my tenure. It was a fun place to work & great people to work for. I worked there all through junior, high school & college(s), 11 years total, working in between seasons at RW Goodman’s in the clothing department, I was a telemarketer for our local newspaper selling ticket booklets, I thinned peach trees, worked in Daddy’s chicken houses, & my last paycheck job was as a EKG tech for a local hospital. Now I loved the job itself, but starting out in any position, you often get the lowest of the low jobs. Mine happened to be the stupidest shift ever. I went in at 3pm on Friday, worked until 11:30pm that night, drove home a 1/2 hour only to report back at work from 6am-3pm Saturday & Sunday. I am not a morning person at all, what idiot would do such a shift? Someone trying to get their foot in the door that’s who. I got less than four hours of sleep on Friday night because I was so hyped up from working that I had a difficult time winding down…which is what sparked this blog. Less than four hours of sleep is my (our) current mode of life.

After getting my foot in the door, i got moved to the Monday-Friday second shift which was good for me, but it ruined the following day for me. I came home hyped up from charting which meant walking copies of EKG’s to each nursing station in the hospital right before getting off. And let me tell y’all, I was skeered to death going to some of those stations. After 5:00pm, a lot of the areas of the hospital closed down. I was a one woman show working second shift & in the old part of the hospital alone, talk about creepy. When I was charting, I was practically running since I just knew someone was going to pop-out from a secluded area & kill me. So when I got home, I was hyper & couldn’t rest. I’d stay up til 3am or later & then I slept all day until about an hour before getting ready for work. Second shift will ruin your life that is, if you want to have one. Later on, I went straight into another idiotic shift for me personally, 6am-3pm Monday-Friday. Now I loved the job I did, but I am not a morning person. I’d come home after work & sleep for hours, just to turn right back around & go back to bed. I have a huge respect for those working in hospitals or mills, those shifts are hard on the body. What I liked most about my hospital job was having a built in cafeteria to dine in, I love me some cafeteria food! I’d call Mama & Daddy on Saturday’s & see what they wanted to eat, it was the best. Then the gift shop was my next favorite, they had the best finds.

What’s the point of me talking about my job history I’m sure you are wondering. Well I am too at this point lol. It’s to explain the lack of sleep Lee & I are in right now & Jack. It’s a lot like working first, second, & third shifts all in one day inside our home, with a little siesta here & there. How we are able to function is only by the grace of God, that & Lee’s obsession with the Bang energy drink. I’ve always been scared to drink or take anything to give you energy because I have a slight heart issue, so I suffer with toothpicks holding my eyes open. Since being home from our unfortunate incarceration (aka the hospital), Jack hasn’t slept an entire night other than the first two nights after we got home. He is all out of whack, very much like a newborns schedule. It’s not because of new meds, he’s not on any. During the first few weeks, it was out of sheer hunger, we couldn’t fill Jack up. He was eating 8 bowls of popcorn a day, plus tons of other meals. He was even eating throughout the middle of the night, Jack was starved to death. His body was playing catch-up from where he was starving. Now that he has put on weight, he doesn’t need that ginormous amount of calories any more. He isn’t able to sleep now because of a spinning mind. Jack’s eating has slowed tremendously. He’s eating one good meal a day now, maybe two at times & that’s okay, he can live like that. As Jack has built back his strength, he has gotten back into the things he was interested in prior to him getting sick-his phone, tv, music, being more active around the house. Unfortunately, with a healthier Jack comes things that we were not looking forward to such as looking at inappropriate things online, getting back into interacting with strangers, playing his Lego Batman video game that gets him all stirred up & wired. When he finally does decide to call asleep, it’s usually around 1:30am, he wakes at 4am almost every single night to either mess with a toy or get up to pee because he has become so enthralled with the other stuff all day & night long, that he forgets to use the bathroom. When I remind Jack to get up & go pee before bed, he ignores me. When I try to reason with him about waking us up with his noises & bathroom trips, it’s like talking to a wall. I sleep with a baby monitor on my nightstand from Jack’s room to ours so I can hear if he has a seizure. I hear every move & sound he makes, Lee can sleep through it most of the time, but I never can. That’s just one of the many gifts of being a man! Just last night, Jack didn’t nod off til around 1:30am, I didn’t get to sleep til about 2:15am, he awakens at 3:30pm, piddles in his room with something, gets up at 4am to pee. I send Lee which I feel terrible about because he gets up for the day around 5:30am, but I’ve only had a little over an hour of sleep at this point. Jack never went back to sleep until 11am when I was busy getting my chores done & ready for work. He didn’t wake up until 2:30pm for day. This cycle is exhausting for us old parents. He started knocking on my bedroom door around 9:30am & I told him I was still sleeping (obviously not), and Jack says ‘it’s 9:30, you need to start getting ready for work’! I died! Made me feel like Mama & Daddy were talking to me when I was a teenager. But working outside in the hot everyday makes one sleepy any way, pile that on with the lack of sleep & you’ve got a whole mess.

Lee & I were so desperate for sleep the Sunday before Memorial Day, we went out to my car & slept for about 45 minutes behind the produce stand. As the teens say, ‘we be tired bro’. In actuality, mine was like 15 minutes-the problem with being a woman, the inability to sleep anywhere. Lee has considered getting a camper for us to rest in during the day. I never thought at the age of 50 & 45, we would be on the same schedule as when I was nursing our baby’s! I don’t have anything cute to snuggle with when I’m awakened now. Now I’m too hot to snuggle with Lee (menopausal problems) & we are too ill & annoyed to enjoy life. The other issues that have arose from Jack’s health improvement is his constant need for stuff. He needs gift cards everyday, food from restaurants everyday, batteries-y’all wouldn’t believe the request for batteries from this child, getting his mail from the post office. He tracks every single move UPS or the USPS or FedEX makes & knows just when they are to arrive. The anticipation makes him so anxious, worries him to pieces. He tracks those services like it’s Christmas Eve & he’s expecting Santa Claus! Now he’s back on wanting his guitar that Lee was supposed to take to a friend before he got sick for repair & Lee has lost it. How does one lose a guitar? Our lives are pure chaos. Just this week, I had to pay up with his gift for staying in the hospital & doing what was asked of him by his medical team. This contraption you see pictured cost me over $200. Can y’all believe this “phone” cost $200. It doesn’t even do anything but make animal noises, it’s a “vintage” Power Ranger phone! Being this child’s parents is so expensive along with trying to manage him through bribes, his daily eating out habits, gift cards & battery consumptions.

Today he’s been on a haircut kick. Calls me out of the blue demanding to have a haircut by our guy in Ellerbe, then got mad when he heard he was on vacation. To try to reason with him, I asked Jack if he wanted to call the man & have him ride all the way back home just to cut his hair. He of course had a solution for that, what about so & so cutting it? Jack doesn’t understand other people’s time, only his & everything must be done instantly in order to please him. And sadly for us, if something isn’t done at the particular time he wants it done, he wakes up at the crack of dawn or never goes to sleep because he’s thinking about it. We are so very grateful Jack has improved, but we knew what was coming, what is here. He’s more energized, move active, & thinking more-that’s a good & bad thing. As far as seizures go, he hasn’t had any big ones in a few weeks. I’ve been praying really hard that the Lord will grant me with the ability to free my mind from the fear of Jack becoming violent again. My prayer is that I will be strong enough to handle whatever may occur. Lee turns 51 tomorrow, so we definitely ain’t getting any younger, makes us both wonder how much longer we will be able to sustain under such conditions & be able to operate what our business has grown into at the same time. When you start having kids, you know there is a possibility of having a child that may have complications, but you never know to what extent. I only thought Jack’s issue would be seizures, little did I know that seizures would be the last on our list of worries. Lee & I say all the time, we could never make the stuff up that comes with being parents to Jack. We will do the best we can’t until we can’t & then I don’t know what will take place. It’s a tough life no matter which side of the fence Jack is on. As our family saying goes, ‘it’s always something’. Does this blog even make sense? I feel like Blanche on the Golden Girls when she wanted to become a writer. She was operating on such a profound lack of sleep that when she finished her novel, it made no sense!

Double-Edged Sword

It’s been around five months since Jack last had a big seizure, that time went by too quickly. He is giving me way too much material to blog about as of recent & I am not a fan! Jack’s break from the big seizures ended Thursday night, May 27. I wrote in my previous blog about how Jack’s appetite has increased dramatically since his hospital stay, we are unable to fill him up & that insatiable need for food is causing an increase in seizures. Little seizures build up to big seizures & it’s the big seizures that are problematic. As Jack had a few little ones early this week, I knew a big one was brewing. Sadly for us, a big seizure means Jack can become violent. Jack’s main caregiver called me around 7:00pm Thursday saying Jack had a little seizure, I came straight home from work. About 45 minutes later, he had a big one. I used a nasal spray called Versed that I had never used before to help counteract the violence, it is a newer prescription written by his neurologist to be used on an as needed basis, like during a big seizure. It basically is supposed to knock Jack out. Unfortunately, it didn’t quite do that without problems. When Jack seizes, his first instinct is to get up. He did just that & collapsed in the hall, thank goodness I was there to catch him. As he was lying on the floor, he slammed his hand down angrily-I knew that was a signal for trouble. I called our friend Jake VunCannon (who I know hates he ever laid eyes on us because we call him so often), to help me transfer Jack from the floor to the bed. While we were doing that, Jack tried to fight, swatting at us several times but the fight died down & he left us alone. After that, he went into a deep sleep for about 1.5 hours, thankfully.

Prior to the seizure Thursday, Jack had eaten a bowl of cereal, three large bowls of popcorn, & a plate of Japanese food. When he woke up after the seizure, Jack went straight to the kitchen to retrieve a bag of Cheetos. He ate the whole giant bag, another large bowl of popcorn & he’s eating another bag of Cheetos as I type. When I gave him his nightly medications, he was a bit irritable & bossy, definitely not the same cooperative Jack we’ve seen over the last few months. Seizures can change people. Jack actually went to sleep at a decent time, 11:30pm, but woke right back up at 12:30am. Now he’s in his room with his door closed & locked. I can’t tell you how long it’s been since he’s done that. We absolutely from day to day never know what to expect with Jack. Not sleeping has definitely been a problem & that alone can cause an increase in seizures, couple that with the increased appetite (that of a 1000lb sisters) & you’ve got a recipe for disaster. It’s 1:45am while I’m working on this blog. Jack is locked in his room as I mentioned, I don’t have a camera in his room, sure would love one especially at a time like this.

I had a dream the night before Jack had the seizure that he was in some kind of duress. The dream is foggy but I know it involved a bed & him fighting. I’ve been one to have dreams that come true, maybe it’s a way of God preparing me for the future. I looked to the Bible tonight before I started this blog because most of you know I struggle with a very real fear of Jack during his violent moments. He’s not been violent since January which may seem like a long time to you, but to me, it seems just like yesterday. I vividly remember each attack, what Jack was wearing, what I was wearing, the sheer exhaustion I felt just from holding him down to protect myself. In my reading of the Bible from Joyce Meyers interpretation, the word fear lead me to several chapters throughout. This one really struck me & has lingered on my mind.

I’m trying so very hard to face my fear. God has hardened me to our difficulties. I am a hard person, it’s difficult to get me to crack, but this is one difficultly I have yet to master. Am I to? God has told me to, why can’t I? I will continue to do the best I can until I can’t. I told Lee I would love to be a wealthy person for reasons no one else reading this has probably ever wished. When this happens with Jack, I’d hire a bodyguard to deal with him & I’d leave the house until Jack was better. But could we even get a bodyguard that would actually work? A little humor given the circumstances our nation is facing. I couldn’t let a blog pass without throwing in a smile. 2am is about my cut-off. Will Jack sleep tonight, who knows. He just rang his bell for me to wash the Cheeto dust off his hands & heat him some warm milk because he heard warm milk can help you sleep. I miss the calmness that our home was able to enjoy over the last five months, but that was because Jack was sick so I surely don’t miss that part. Now that he is better, he is sick in another way. What a double-edged sword. Until next time….💜💜💜

Batman Popcorn

Being home for a little over a week from the hospital with Jack has been so wonderful. The calls, texts, messages & kind gestures towards our family has been so heart-warming. I’ve always been proud of our small town, now even more. When I went into Family Dollar, our favorite employee, Marvina gave me a big “welcome home” announcement. Everyone asks about Jack when they come into The Berry Patch. There was a cake on my porch for Jack from a long-time family friend. A neighbor brought supper over, the acts of kindness have been so thoughtful & greatly appreciated. One of the greatest pleasures though was being able to lie down in our bed on our new Sheets & Giggles sheets, one of my many “holed-up” in a hospital room purchases. They are so cooling but one caveat, they do not stay on the bed right & Lee gets them untucked all the time because they are so slick which is a major pet peeve of mine, but they are extremely cooling. Another wonderful pleasure has been the ability to watch the Golden Girls again. But I am so far behind in everything in my life that I’m about to go mad! My desk looks like I don’t know what, I just put the last of our hospital luggage up yesterday, & keeping up with Jack has been a job in & of itself. I’ll explain later. Last Tuesday, Jack had a follow-up appointment with his now new physician, Dr. Mary Catherine Moree. I was in the process of transferring Jack from pediatric regular doctor care to Dr. Moree but the appointment wasn’t until July. Not sure if Jack would even go to this appointment, I was so nervous about broaching the subject with him. I waited until that day to tell him about seeing his new doc. He went & what a great appointment it was. Dr. Moree is an absolutely fabulous person & doctor. She was so good & thorough with Jack & down to earth. If you’re needing a new regular doctor, I highly recommend her-amazing! Jack’s lungs were sounding good from the pneumonia, oxygen was great, blood pressure on the lower side, but his always is, a Dravet thing, & his hemoglobin had increased since his hospital stay which is great.

Now on to the new issue we are currently having. After having made too many rounds to count with the doctors at UNC about what was wrong with Jack with his refusal to eat & drink, they finally listened to me & started treating the constipation, he has done so well. I’m not saying he won’t ever get like that again, but we do have tools to treat the constipation on a daily basis so hopefully he will not get that way again. When he finished with his checkup, Jack called Mama Noi’s in Ellerbe to place his lunch order, omg! Hugh Hefner ordered two large subs, three onion rings, & a tea, $40 worth! Y’all this child has eat. The eating has been unreal. If you’ve ever watched 1000lb. twins, think about that amount of food that Tammy eats. It’s totally unreal & scary. Since we have been home, Jack hasn’t slept. I came home dog-tired, but not Jack. He came home only hungry. I am not lying y’all, he eats 24/7, he doesn’t sleep, he only eats, pees, & poops. When people ask how he’s doing, I say “great, eating & pooping like a horse”! He is eating so much that I have to VACUUM his BED every night. He doesn’t sleep, only eats. All night, all morning & all day long. Up wandering the kitchen at 3am, 6am, on & on searching for food. The eating is out of control. As I work on this blog, I’m waiting at Bojangles for a 20 piece chicken box which will only last him a few days. Not to mention when I am able to sleep, I can’t because of a neighbors dog, ugh my life!

I buy things through the seasons for Christmas, I picked up a Batman popcorn popper for Jack at Hobby Lobby a while back. I cleaned out my car & set the bags on the porch before Jack went into the hospital, Jack ended up finding it when he went to the doctor last week (because I didn’t have time or the energy to move it). It’s the kind that pops kernels-the old fashion way of eating popcorn. In most homes, a jar of popcorn kernels last anywhere from 5-10 years, our container lasted about 5 days! He eats anywhere from 4-5 large bowls of popcorn that he is popping himself everyday! Y’all remember the coffee bar I tried to have & had to breakdown because Jack was making coffee all day & night? That’s how this has become. He is waking up at 6am popping corn & hasn’t slept yet & I’ve only gotten in 2-3 hours at the most. Pictured below is Jack with his prized Batman popcorn popper. He’s even shopping Amazon for popcorn seasonings!

Jack is even eating breakfast which he hasn’t done in a long time, eating it everyday. The eating is great, but I mentioned it’s also scary. You’re wondering why it’s scary, it’s because he’s eating so much, that the seizure meds aren’t able to keep up like they were prior to him not eating. His body is metabolizing medication differently now. In turn, he’s had some break through small seizures also known as myoclonic seizures. Small seizures often lead to a full-on convulsive seizures that often leads to violence afterwards. It always seems like nothing works together with Jack. The game of Dravet is an evil one. I might go as far as to say it is one of the most complex, difficult, & devastating disorders in the medical arena. The seizures used to terrify me. Now I know I can face the seizures & I do handle them better than anyone else in the family. What I am working on & praying about is the ability to face Jack when or if he becomes violent-I am fearful of him. I live in complete & utter fear of what he can do during a violent streak. What I have learned is that God doesn’t like fear & worry, what good will become of it, but when someone faces real danger & has stared that danger in the eyeballs, that feeling stays with you. It never leaves. I don’t want to live in fear because I want to be happy, but fear is stealing any happiness I may have. It’s hard to believe such a tiny person holds more strength in his two hands than most body builders in their entire body. I’m praying that God will release my mind of the fear & worry I have over Jack becoming violent. I often wonder if this is a test from God? So I’m praying hard to not live in fear. I want to be better & stronger, not the weak person I am when I think of Jack getting aggressive. No parent should have to deal with their own flesh & blood attacking them. I question the why of that multiple times a day.

The ordeal I went through at UNC was torture from a Mama’s heart. They sent us home the first time with hospice care & for Jack to pass. They had conversations with me regarding the longevity of a Dravet kids life. They didn’t even know how to pronounce Dravet much less know anything about the disorder. The team did not give us any hope, they didn’t listen to me at all, their answer was a feeding tube. Am I mad they sent Jack home with pneumonia, no. The reason being is that Jack & I taught the same team that sent him home a lesson I hope. Listen to the parents, they their child. Not every person fits into the same box doctors want them to. Not every person responds to the suggested treatment & I knew Jack would not of. A feeding tube was not the answer for Jack, cleaning him out was-for now. I’m not saying he won’t need hospice in the future, but he doesn’t now. Jack is gaining weight, his little face is getting some fat to it, his voice is so much stronger, he’s walking around on his own, he’s playing games on his phone again, calling people on the phone. He even called Dixie Burger one morning around 7am & ordered two gravy biscuits, that was after he knocked on my bedroom door at 6:45am & woke me requesting his caregiver pick them up on her way to our house. Things are slowly getting back in order for Jack as far as his routine & health. I would love to be able to have all things work together with Jack. I don’t know why they can’t, it’s either one extreme or the other. This is the toughest job I’ve ever had or will have. Thank you all for your prayers, gestures of love, & caring. 💜💜💜

A long journey to home

What a journey we have had. Jack has had a little bit of everything over the course of a 10 day period, plus the months that lead up to his hospital admission. Things rapidly changed with Jack once he was discharged from UNC last Saturday. He landed right back in the hospital via ambulance at Moore County ER because of labored breathing & being extremely lethargic. I knew he had pneumonia & he had just that. His stats were very low, oxygen down in the 60’s at one time, blood pressure numbers as low as 55/30. Illnesses hit Dravet individuals like a ton of bricks. As complex & fragile as Dravet is to treat, often, the Dravet patient bounces back quickly which is what has happened in Jack’s case-thank goodness. Coming into the hospital the first time to help treat the dehydration, malnutrition, & to get home health started, nearly caused me to have a mental breakdown. The doctors were very bleak in their assessment of Jack after I refused the G-tube. They basically put him on two appetite stimulants, finally treated the severe constipation with prescription strength medication, & sent us home with hospice care. The team didn’t believe me when I told them how stopped up Jack was & that he needed cleaning out which I felt was the whole underlying issue. After he did get cleaned out, that’s when Jack started showing signs of pneumonia but no one knew. He was too sick to stay awake, too sick to eat, too sick to do anything. I blamed it on an illness & the new meds, doctors blamed it on the new medications solely. After finally getting Jack stable after his second hospital admission in the same day, he got hungry! He has eat! One of his favorite joys has been ordering off the menu for hospital room service & pressing the nurse call button! The doctors are all baffled at how they missed the pneumonia. Since this is a teaching hospital, I said this was a teachable moment for the team-LISTEN TO THE PARENTS!

On Sunday evening, Lee came up to relieve me from that horrific bed & multiple middle of the night disturbances. It was much needed, but Jack had had enough the following day. He started yanking everything out, throwing things, trying to fight, acting a fool. I pleaded with y’all to pray for calming for Jack, but I also had a heart to heart with him when I returned from my mini vacation from home. I told Jack that he was very sick. If he did not let the doctors & nurses treat him, he was going to die, that many people had died from pneumonia & he might be one of those. It was a hard talk to have, but it was needed. Jack started to cry a little & complied with every single request since. What happened next was something very scary for us. Jack’s hemoglobin was dropping, at the lowest it got down to 6.7. That is when the team decided his levels were not improving & blood was needed. Jack handled it all like a champ, even after his fourth IV start in a week. The doctors think that several factors played a role in the low hemoglobin. One, lack of nutrition. Secondly, the infection of pneumonia. Thirdly, maybe one of his seizure meds. Those three things together created a disaster. I’ve realized why giving blood is ever so important now. I recently tried to give but couldn’t because my hemoglobin was too low, I will be doing whatever it takes now to get my number up & continue to give back. A big thank you to all that give!

The good news is, Jack is doing so much better. One of the things that happened to Jack over the last few weeks, the tone of his voice got down so low we could barely understand him. His voice is much stronger now. Jack made a quick turnaround from all he had going on. If all goes as planned, he will be discharged yet again tomorrow. He is still weak from the pneumonia itself, but no longer needs oxygen support, blood pressure has finally stabilized, & the original reason for coming in eating & lack of nutrition have been addressed. We are now equipped to handle his constipation needs at home with daily treatment & we have a backup plan if a lack of appetite rears its ugly head again. There is one problem with bringing him home, there are going to have to be follow up doctor appointments to check his hemoglobin & lungs. Y’all continue to pray for Jack’s compliance with his medical issues & continue to pray that the violence he tends to show will be removed from his body. Your prayers helped get us through this most difficult time. Lee will be so glad when we return, I don’t think he realized how much work it takes to be me & he also really misses my ice cold feet when I do make it to bed. Poor Teddy must think I have abandoned him. I missed out on taking Ava to get her permit & hanging out with her. I’ve had enough of Nickelodeon tv for a lifetime, that’s the only channel Jack has watched. We’ve had excellent care this go-round. Through all my complaining about the staff making tons of racket in the halls at 3am, knocking on the door an average of every 20 minutes, & having to tell everyone to come back because Jack was asleep at 6:45am (don’t poke the bear), the staff did an awesome job of making sure Jack got the help he needed. My complaints were purely for venting & comedic purposes only, no one ever saw me show out! There have been many to do exactly what I’ve done with Jack for longer stays, but the main issue I had was the isolation. The rules change daily on who can come in due to Covid. I couldn’t really go anywhere because I didn’t want to upset Jack by not being in the room, the staff certainly didn’t have time to sit with him. The isolation was the worse part of it all outside of Jack cutting up & being sick. The hospital ain’t no place to rest & during Covid times, it ain’t no place for visitors. I’m looking forward to getting back home & being busy doing my thing. And really looking forward to getting back to a good cold Pepsi (they don’t sell them here) & my pickled corn & pickled quail eggs!