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!

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.