I am back!

In recent weeks, I have not felt inspired to blog. Really, I have been torn & questioning whether I should blog ever again. Some people have messaged me inquiring about Jack’s condition & people asked me about him around town or at The Berry Patch. If you are new to my blogs or are not caught up on them all, then you missed the negative comments I was so unfortunate to have received about how someone thinks I am not doing my best with Jack as his parent. This person said I write terrible things about my son & that I need to let him experience things that other kids his age do. I know all of this is a lie. This person hurt me. Why did it hurt? It hurt because I know his or her comments were not true. I have tired everything in my power to get Jack help, therapies, multiple medical treatments in different states, natural therapies, the list goes on & on. He has been to Disney World three times. There are a lot of normal children that will never get to experience the magic of Disney even once! I may not be the best Mama, but I am a good one, this I know! I will not carry on about this hostile person any more, but I do want to thank the many, many family & friends that came to my defense. You all are my tribe & I appreciate each of you that offered to whoop some tail, offered caring words, & sent encouraging messages. Much love to all of you!

One person made me want to quit writing, now one person has inspired me to write again. I was really fine with never blogging again. As I have expressed before, I actually do not like to write & it hurts my wrists typing! I was always a horrible writer in school. I think it was mainly because I had to write on silly things in my opinion. I am a cut & dry person for the most part. If I had a job that had to have meetings, I would lose it. I would scream at all the ridiculous people asking foolish questions that were addressed in the beginning of the meeting or they should of already known the answer to. I was never good on going into detail about “who is your hero & why”-I could do that in a sentence or two, not wrote an essay on it or writing an essay on my interpretation on The Canterbury Tales. That stuff didn’t make sense to me, although I can still recite what I had to memorize in The Canterbury Tales even though it is all gibberish to me. I wanted to write about what I experienced-food, gymnastics, my Aunts that smoked cigarettes all night long while drinking pots of Sanka & discussing what was wrong with this world, or write about how I disliked brown paneled walls with brass-toned door knobs (sorry Mama). Never ever was I given one of those assignments to show off my writing skills. And coming up with a conclusion was & still is the hardest part of writing to me. Diagramming sentences gave me more horrific nightmares than long division-math was not fun either by the way. I was not a studious student, only in PE! Writing about personal experiences is totally organic for me now which is how I like it! I am thankful I don’t have to do outlines, make rough drafts (although I should), or any of that complicated such & such.

I am a member of several Dravet Facebook support groups. These support groups have helped me with Jack’s care on numerous occasions by asking questions to the forum & allowing someone in similar shoes that I am in with Jack reply with advice or help. Let me just say, if you suffer with an illness, find a Facebook support group, it can truly help. A few nights ago, a fellow Dravet Mama, which in our support groups the Mama’s on there are referred to as ‘Tiger Mama’s’ because of all the challenges we are forced to go through with our children, a Tiger Mama asked a question to the group about her son’s behavior. Her son acts very similarly to Jack although he is a little younger. She was wanting advice from fellow Mama’s that have been or are on the same behavioral journey as her son. As I have preached before, Dravet is more than just seizures. If behavioral issues were taken out of the equation, life would be much better, but in the same breath, seizures can cause behavior problems. I commented like many other Mama’s, giving a brief synopsis of life with Jack & I shared my blog with this concerned, deflated Mama to let her know she is not alone. The very next day, this Mama reached out personally to thank me for writing blogs about Jack. Her son shares some of the many issues Jack does. Her feelings are literally the same as mine, this Tiger Mama just hasn’t found anyone to write so honestly about the behavior issues before. My writings about Jack are not lies, they are 100% truthful, real, & things nightmares are made of. I will not apologize for being honest because through my honesty, it has helped another Mother. A Mother who is struggling with the same decisions our family is facing & living the same hardships we are going through. We have made a connection through my blogs. Although I can’t help her physically, I know that my experiences that I write about with Jack can help her feel like she is not alone.

Just to give y’all an update on what has been going on with Jack since my last blog as a ticked off Mama, things have calmed down significantly with Jack. His birthday tore him up, meaning he couldn’t eat, sleep, nor rest for thinking about his special day. He had a great time at Chuck E Cheese in Florence, SC. We had to go to SC because in NC we are still in phase 2 & our CC is closed. This particular CC was awesome. It worked out so perfectly, the first Sunday of each month is dedicated to children with special needs. The crowd was low, we had a personal helper, & Jack did not contract Corona (it’s been 14 days since him going-yay)! The personal helper he had was absolutely amazing by the way, so very accommodating & caring. There were several touch & go moments while we were there, there were multiple times that we thought Jack was going to have a seizure. In fact, on the way there, I saw him have several of what I call small seizures but are technically called myoclonic seizures. I also developed a migraine on the way to CC. It’s about an hour & a half drive there & 20 minutes into our trip, I noticed that I couldn’t see part of the road. I knew what was coming. I typically get an aura then the migraine hits. I took 5 ibuprofen & prayed that the headache would not get super bad & it didn’t-it was manageable. Once we arrived home, I was finally able to breathe a sigh of relief! Jack is back to not eating very much though. He is in an extremely calm demeanor right now that is so welcomed. I only wish that he could have both a calm demeanor & have an appetite at the same time. His nutritional needs are not being met. A lot of Dravet children have g-tubes but that would NOT fly with Jack. This would help us tremendously if he would agree to it, however, he will not. Ensures are out, he hates them, meds to ramp up his eating affect him negatively are out, so we just do the best we can.

Here I am at the hard part-the conclusion. In conclusion (lol, this is how all my school papers sounded). But really, in conclusion, you all will never know how much your prayers & concern for not only Jack but our entire family mean to us. You each (except for that hateful person with his or her negative comments) hold a special place in my heart. And to my new followers or even anyone I have helped with similar struggles as my own, thank you for sharing your words with me. We each can help one another with love, laughter, & most importantly, hope no matter what your problems are. Until next time….

Dear Anonymous

My last blog post about Jack’s birthday created quite a stir for someone, not only my last blog, but more than likely all of them. When you expose your life like I have done, there will always be people to criticize, disagree, & be downright hateful. This is not the first time I have received backlash for a post, I’m sure it won’t be the last. The person that commented negatively thinks he or she has told me something, all the person did was make me mad, make me have a sleepless night, & made me wish I knew who it was! There are so many cowards hiding behind a keyboard. Most of the time, these “cowards” have no clue what they are speaking about. I blog to teach people about Dravet Syndrome. I blog to let people know who love & care about our family that often ask how things are going. I blog to ask for specific prayers for challenges our family faces with Jack. I also blog to get Jack’s story out there to see if anyone can offer any type of assistance or helpful advice. I am real, factual, & honest, maybe to a fault, but that’s really no ones business but my own. These are the comments “anonymous” left for me.Jack is not seen as a problem, the rages & violence are THE problem. I know this is nothing he can control at all, who would willingly make the choice to live life that way? Mental illness is real. It is often times something that can not be controlled with medications. Does “anonymous” not have good sense? What family feels safe with a ticking time bomb? I wonder what kind of loophole I could find as “anonymous” suggested to curtail violence? We have exhausted meds, doctoring, the help of social workers & more. All outlets have been explored many, many times. Nothing has helped. Does “anonymous” want to take Jack to the beach for a week on a vacation, to Walmart where he collapses on the floor to get attention, or when he pretend sleeps when he doesn’t get his way & wakes up pounding you in the head or when you’re sitting in the living room minding your own business & he comes in & starts whaling on you. Or how about call “anonymous” when my t-shirt got completely ripped in half when Jack was only 11 when in a violent rage? Did this person not read about the seizures Jack has & the injures that come with them & the violence that comes afterwards? But that’s all normal & deal-able, right? What loophole is there when Jack refuses to bathe for well over a month & no longer brushes his teeth? What loophole may I use when he communicates with predators online that try to con us out of money? What special loophole is there when Jack stays up til 5am & I have to work a 10 hour shift plus I have stay up with him to make sure he doesn’t burn the house down? Sounds like “anonymous” has watched one too many Bugs Bunny cartoons!

I have a simple request, if you don’t like what I post-delete, block, or keep scrolling. Your negativity is not welcomed here.

No Life to Live

Lee & I were recently talking about timing. Timing is an amazing thing, I find it very intriguing, fascinating even. Some examples of how I think timing is perfect are how home chefs have a whole meal ready & put together all at once, it just magically comes together. Or how when I throw a ball to either first base or third base, that’s exactly where it goes-the ball mystically falls into the glove of the opposite person. Another strange example of unique timing, is how you think about seeing someone you haven’t seen in a while & boom, there they appear.

Speaking of time, Jack’s birthday is coming up Sunday, August 2 to be exact. He’s going to be 19! It is truly hard to believe we have been riding this roller coaster with him for 19 years. The “Cyclone” coaster launched on exactly August 2, 2001 & has not let up yet. Normally, birthdays in our family are celebrated at a restaurant of his or her choosing, gifts, cake, & family & friends would be in attendance. This is not an option with Jack, sadly. I call Jack the event upsetter. Part of having Dravet Syndrome is not being able to handle stress of any kind, whether it’s distress or eustress (meaning happy stress). At nearly every birthday celebration as low-key as ours our, he has seized. Not only at his own birthday party, but others whether family or friends. Countless upon countless times, we have attended friends parties, VBS, family gatherings, games, etc & he seizes every single time. This is one of the reasons why we don’t take him anywhere really. He is far too big now to have to transport after a seizure to take to these places & the risk of him getting seriously injured from a fall from the seizure itself is too great.

I find myself questioning our Creator constantly, though only when Jack is intolerable which is most of the time. I talk to God frequently & ask Him why we have to be tortured day in & day out? What I hear back from God is, “let him go”. Meaning, place Jack in a residential facility. Is this torture a daily reminder of God’s message to me? Maybe. It’s not that I haven’t looked for a home for Jack, it’s only that one has not presented itself to me in a manner that would be fitting for Jack’s needs. I do BELIEVE placement is the very best option for our family, I am not going against God’s message-I am waiting for the right place for most of his needs to be met. In the meantime, I still unfortunately continue to question God on the why’s of the absolute torture chamber Jack puts us through. He is relentless in his forms of punishment upon us. Jack would be a wonderful weapon on his own to torture criminals for information. He would have Jeffery Epstein & Ghislaine Maxwell talking in a matter of minutes. All they would have to do is wait for Jack to wake up in the mornings & they would confess all just for Jack to leave them alone. I scream silently in my head all the time when I’m home with Jack, I roll my eyes every time he calls my cell phone when I’m away because I know there is a foolish demand on the other end, I say bad things that my head only hears when he is acting up which is pretty much all the time. This is no life to live (no life to live-good name for a soap opera).

We have a big beautiful pool that none of us can enjoy. If we swim, we close all the blinds, his door, & have to remain as quite as possible. Swimming with Jack would kill Michael Phelps, Jack runs around that pool like a chicken with his head cut off. Most of the time, it’s not even worth the effort of preparing to swim. He wears you down. Jack started well over a month ago on his birthday planning. He is obsessed with Roy Cooper & his lack of opening up the state of North Carolina, it has made Jack very irritable, at times almost violent. He always celebrates his birthday at what I refer to as Chuck E Hell & we always go to the one on Greensboro, NC. When Jack learned the ones in NC were not opening up because of Corona, he lost it. I was prepared for it & came up with the solution of visiting the one in Florence, SC since their state is a little more relaxed than ours & the drive is about the same. It would be all fine & dandy if he could of been satisfied with that, but no! He was satisfied with going to Florence, but as I’ve said since I started writing, Jack can’t get no satisfaction (with anything)! Jack began calling everyone in the phone book (literally) about his birthday trying to drum up gifts. If he saw a name in the phone book (a strange anomaly for teens his age), he called them. Jack has zero inhibitions. He then began calling Chuck E Hell-multiple times, daily even with questions about their facility & trying to make reservations . Then of course he wanted me to make reservations but I had to have a credit card. Mine of course was compromised (wouldn’t expect any less) & I had to wait on a new one to be mailed to me. In the meanwhile, Jack called our bank to see if he could find out any information on the person(s) who may of hacked my card. Then Jack started watching the video of his kindergarten & first grade year at Hamlet Presbyterian. These are the only kids he remembers from school in the videos, these are his friends to him even though he hasn’t talked to any of them since first grade. He still considers them his friends. He called them to ask them to go to Chuck E Cheese with us. What is so awesome is these kids would of gone, but I knew it would be too much on Jack & he would possibly have seizures & then I would have a mess on my hands with being so far from home. The list goes on & on with things his has done about this birthday. I so wish it was like when he was younger & didn’t pay attention or know anything about dates. He wouldn’t know anything about his birthday until a few minutes before it happened! Jack’s real-life story is mimicked after the children’s book If you give a pig a pancake. One day, I’m going to write a story about Jack in an adult storybook version.

Y’all just won’t believe what all we have had to contend with about this birthday. From Jack’s two caregivers, our family, friends, random phone book people, the employees of BB&T now Truist lol, the employees of The Berry Patch & Chuck E Cheese. It has been absolutely unreal & I think this year has been the worse yet. I dread going to Florence on Sunday. Thankfully, we’ve drummed up several adults that are going so hopefully they can help me keep him occupied & the ride to & fro won’t be so terrible. My biggest worry is him interacting with the games which is why he wants to go & being germy. But there is no virus big enough to keep him at home, we will have to face whatever repercussions that come from our Chuck E trip. He would beat our tails on a regular if he didn’t get to go. Then there is the dreaded junk prize counter to cash in your tickets for some dollar store trinket. It never fails, Jack always wants something that needs 5,000 tickets & he only has 289! Conveniently, if you don’t have enough tickets, you can also purchase items. It makes no difference to me though, I would pay $100 for a shirt & a Chuck E Hell pencil that will never be used just to get us out of there! Seizure-wise, Jack is doing better & Pekin Wok-wise, he is doing so much better. He was on an eating kick, we were unable to fill him up. Once we increased one of his seizure meds, both the excessive eating & excessive seizures slowed tremendously. All I can say is, y’all pray for us!!!

Should of bought a lottery ticket…when I had the chance.

There are days that are pure torture for a lot of us. Days of heartaches, days that you drop everything, days that you wake up on the wrong side of the bed. I recently had all of the above & continue to do so everyday. Owning a business is tough. Owning a business with a very high demanding, mentally & physically disabled child is even harder. My entire day & night revolves specifically around Jack, even when I sleep, rise, eat, & shower. Raising Jack even at his almost 19 years of age is very much like raising a toddler. There are times I have to feed him, he always has to have assistance in the bathroom, meals prepped-or in his case, purchased, then heated, then reheated again & again, clothes picked out, etc… After coming off a nearly two month long non-eating/non-drinking strike, he has now moved onto a eating/drinking binge. His appetite is insatiable. He calls Dixie Burger almost every other day that they are open to order multiple gravy biscuits & multiple fish plates. Not only does he call DB all the time, he is now on a Peking Wok kick, which is a local Chinese restaurant & it’s also my current location as I sit in the parking lot awaiting his food order. I told Jack he wouldn’t be able to have a birthday party (which is coming up) if he didn’t stop all this food ordering, y’all wouldn’t believe it. It’s utterly absurd the amount of food he orders! Last week, Jack & his main caregiver were Pokémon hunting in town & he wanted Peking Wok. He calls his order in, but I specifically told him not to order more than 2 plates. When his caregiver & he get to the restaurant to pickup the order, the total comes to $65. His caregiver calls me to inform me what was going on & she said Jack was very apologetic for ordering so much & agreed to let them put back some food. I was terrified he would show-out like he did last summer when they went to town. But all because his wants & desires were were not met on that particular day with his first food order, here I am sit in the parking lot of Peking Wok to fulfill his need to spend our money & that need is nothing but a form of control over us. It is simply amazing how mentally disabled Jack is but how conniving he is at the same time. Jack does whatever he can to test our patience, it’s almost like he is looking for a fight.

Last week one evening after we closed The Berry Patch, Ava & I & some of our employees went out to eat. Lee text me while we were eating to say that Jack was pretend sleeping. This is an ongoing issue we have had with Jack for years, it is always used as a ploy for yet more attention. The text from Lee resulted in yet another evening that I spent not able to fully enjoy myself because I spent it worrying about what Jack was wanting by playing possum. When I got home, Jack was fully asleep, there was no play to it. And for him to be asleep naturally that early in the night made me think he had had a seizure. That was confirmed when Jack woke up-he had soiled the bed. Normally after a grand mal seizure, Jack sleeps for 20-30 minutes if that & wakes up violent. This time, Jack slept for several hours after the seizure which was a tremendous blessing to us. He was able to allow the postictal stage to wear off which attributes to the violent attacks afterwards. The postictal stage is an altered state of consciousness after a seizure that causes Jack to be violent & he also losses the ability to speak for about an hour afterwards. It is such a scary thing to witness, even more frightening than the seizure itself, especially with his speech being paralyzed for an hour or so. He doesn’t realize what is going on & why he can’t communicate, which is why he gets frustrated.

By the time Jack woke up, it was around 11:30pm. He woke up unbalanced, but in a good mood. Dravet is an ever changing illness. Jack used to make really loud noises during seizures, the last few times he has had them, he has not been vocally loud at all. There are several reasons why I should of purchased a lottery ticket. First off, he actually slept off the seizure for two hours, this hasn’t happened in a really long time. Secondly, my oven broke on that same day. Y’all know I use my oven a ton, it wouldn’t heat on the inside at all. Lee had to pull the stove out, we researched the error code & were actually able to repair our stove without the purchase of a brand new one with a little assistance from our favorite repair guy, it only cost us $50! Thirdly, we had a photo shoot with Carolina Country magazine because we’ve been nominated as a contender for best ice cream in the Carolinas. For us, that’s a pretty lucky week!

Unfortunately for us though, that’s where the luck stopped. We’ve had some internal shakeups with our business, some leaving for college which makes us so sad because they are such good kids, although I’m super happy they are actually able to go to school. Jack & his food ordering has not slowed down one bit. We’ve spent well over $200 in takeout for Jack only at Pekin Wok in a short span of 10 days. Nothing hurts a Mama’s heart like a child who refuses to eat her cooking. He doesn’t understand nor does he care about the food cost. I am not being facetious in any way when I detail what all he’s been eating. He is an unfillable machine right now. Wakes up eating Chinese, 10 fried dumplings & they are huge, bowls of soup, egg rolls, wontons. This goes on all day & night. Jack is also in a non-sleeping mode as well, even with the assistance of sleeping pills. He was up at 4:30am one morning (not slept a wink) roaming around the house looking for something to eat. He finally decided on potato chips since he had eaten all the Chinese food. The sodium he is ingesting is so not good for him, no wonder his face looks swole to me! His order at Pekin Wok sounds like this: I need four orders of wontons, a large wonton soup, four egg rolls, four orders of fried dumplings, a large order of mixed vegetables, & a large steak & broccoli-spoken in a very annoyed Mama tone. He orders Chinese like he lives in a brownstone in New York City!

Our fridge has been taken over by his takeout. Now he’s wanting a Visa bank card to give to some leech he’s been talking to on Instagram who is posing as someone who is attracted to him. Jack literally is currently the real-life version of Jethro from Beverly Hillbillies. I wish I could be like Granny & get a stick after him & that would be the end of it. He has also has had another seizure within a week of the one I described above which is unusual for him at this stage in his life. I suspect it is due to him gaining weight & metabolizing his medications differently since he is no longer on a food strike. His face is filling in, his shoulders are broadening, & his belly is getting bigger. When Jack had the seizure, he was on our deck. I had just walked inside to get a plate because I was grilling. I heard something fall & it was him. Luckily, he was sitting on the deck seat & not standing, but he fell sort of under the seat. I was home alone, Lee had just closed the Berry Patch & was on his way home & I had also called for reinforcements because I did not want to risk scraping his body on the wood or getting splinters in him which would just create a whole other set of issues, but neither could be avoided unfortunately. He has multiple scrapes on his hands, knees, & feet, now. I used Dermaplast spray to appease his need for attention to boo-boo’s. Bad mistake. He has sprayed that mess nonstop. His room looks like the VFW on a Friday night with all the fumes from the spray. I’ll be so glad when it runs out! This is all we hear all the time now.

Can you see the plume of vapors from the Dermaplast?

Some of y’all probably say to yourselves “why does she do this, why give into him?” We only do all of what we do to prevent violent outbursts which are the most terrifying events I’ve ever experienced. I will never go through that again as long as I can prevent it. We are in a damned if you do & a damned if you don’t situation. So not only has all this happened, but I was also attacked by honeybees at The Berry Patch. We had a swarm come through on a Friday evening & I was stung…a lot! One ended up getting infected of course, I think they were the murder hornets everyone was referring to a few weeks ago. 2020 has sucked!

I use the term a lot, “should of bought a lottery ticket” in everyday conversation. If I find a front row parking spot at Walmart, I say it, if all the stoplights I go through are green, that’s my mantra, if we have good service & good food at a restaurant (strange combo I know), I state that. If I would of had extra money during our lucky week, I would of bought a lottery ticket, but all the Pekin Wok orders literally ate into our extra funds. It’s strange how Jack has flipped a switch in his eating & sleeping habits, this is why I say he is bipolar, he goes from one extreme to the other. Our desire is for Jack to live somewhere else in a nice residential home as long as he is acts the way he does, that really is the safest option for us all. My special request for all that follow our journey with Jack is to pray that we will be led to a facility that can best serve every need that Jack has, but makes it feel similar to home with wonderful people to look after him. In the meanwhile, I’ll be running up & down the road to Pekin Wok, making videos with my Mama, being Jack’s servant, & wishing I had bought that lottery ticket. Y’all take care!

Bring back the old Facebook

What times of turmoil we live in. It makes me sad. The whole energy of our country is off. People aren’t happy any more which is a combo of many things. All the news is bad, people are ill, people are more lonely now than ever. This is how I have felt in the latter years of my life, but I have been able to feed off of others people’s positive energy to improve mine. Now that’s not the case. I’m just blah. As craziness still continues in our home with Jack, I look to other people to help lift me up & that’s not happening any more. People fuss about everything. Anything good that people try to do, there is always a negative Nancy lurking around the corner. It’s more prevalent now because of social media. The isolation that people have been experiencing because of Corona is no joke. Now for me & my family, it’s not really been any different since we own an essential business, the only difference for us, is other people not enjoying life as much & Ava doesn’t have much to do other than work. People don’t have any news to share since there are no goings-on, people are hung up on politics, masks, & negativity. Everyone is a doctor, a nurse, & a public health specialist. Everyone judges you from the way you tie your shoes to how you look. Social media in many ways is the devil. Critics are everywhere. I miss the days when Lee used to call Facebook, Foodbook because all people posted about was what they were cooking and/or eating. As much as Mama & I like to chide about people not being able to cook, it’s all in good fun. Nothing is ever meant to be malicious. We have tried to bring a little laughter into your hearts & home with our videos. But people can be so hateful, some have nothing better to do other than sit on their phones & criticize others. I made three posts on Facebook the other day & one on each one, someone had something negative to say. One was about us having to explain what a soft peach is. Excuse me, but if you don’t know what the word soft indicates, you got problems. So I took that post down. One was about our homegrown tomatoes being in, I was criticized for saying the word mater. Obviously I have somewhat of a vernacular or I wouldn’t write blogs, it was meant to be funny. This has made me despise people. There is no way a person could say nowadays that the sky was blue without some idiot arguing with you. I am sick of it. I would love to close the book on Facebook but can’t because that’s how we reach a lot of our customers. People, you don’t have to comment on everything you read. If you don’t like it, keep scrolling, it’s so very simple.

I was thinking last night about people in similar shoes as we are with Jack, especially during Corona. I call Jack an abuser, although his abuse is inadvertent. The abuse he puts us through is similar to what I think a wife or child of an abuser must feel. Walking on eggshells, afraid of misplacing something that the abuser might need & can’t find, afraid in general of breathing the wrong way & setting off a violent attack. Some people are tortured daily with violent attacks, a lot of those people looked forward to school & work to get away from an inescapable situation. I told Lee that the things Jack said to me & did to me, would put any man I was connected to other than my child 6 feet under, but I take it from Jack. Why you may ask, it’s because the system is broken. There are extremely limited facilities for Jack due to having both mental & severe medical needs. He could go to a place for 45 days no problem, could go tonight, but he has to be out by the 45 day limit. That’s not even an option. When Jack goes somewhere, it’s going to have to be for good. By the time they got him settled down from the transition from home to facility, 45 days would be up. There will not be any coming back because he is going to hate & resent us for taking him out of his home, out of the only place he has been able to find comfort. I can’t even imagine a living a life without him being a part of ours, but it is going to be a necessary evil. Every second of my day & night revolves around Jack. I feel for all of those connected to me, my time for the last 18 years has been severely tied up & my mind distracted with the worries of what Jack is up to. I distracted my mind in downtime a lot of times with Facebook, looking at pictures, being jealous of friends vacations, but I loved it. Those types of things were something that helped me. Now, it’s not fun. Facebook is mean, vicious, political, crazy. People have no life any more because of Corona. People say, “I don’t want to go back to work” or “I love staying home”. Well do it boo boo, but it’s not feasible for most.

There are times that I despise Jack. He can be so mean & hateful. Just this morning as he woke up, he talked to me like he was the ruler of the world. Get me this, get me that, stop that mess were the words I heard. The only difference is, I get to go to work in a few hours & I can forget about his “tude” for the time being. A lot of people don’t have that luxury now, they are forced to avoid work & school due to the shut down & that’s just not fair. The control Jack has over our lives is unbearable a lot of the time, imagine not having any interactions & being holed up in a house all day with a Hitler type without any reprieve. I know Lee & Mama get tired of hearing me complain about Jack & perhaps y’all, but they/y’all are my only sounding board. Keeping Jack in our home has been the most binding, unsafe, detrimental decision we ever made. If I could turn back time, I would of started our journey in finding a home for Jack much earlier than I have. No doubt this is going to be the hardest thing we will have ever had to face to date when it does occur, but it is necessary. It’s scary to think about. It would be easier if we could talk to Jack about it, but our hands our tied. He would flip out.

Jack’s newest thing has become the “stomachache” that some kids fake to avoid going to school. His is to get more attention. Anytime I get ready for work or am delayed in coming home, he starts about his stomach. Now it could be true, but I’m pretty sure he is only complaining about it during those times to get more attention. So infuriating & frustrating.

This blog is all over the place I know, but I seriously can’t take people any more. The majority of all are cool, but some of ya ain’t. I realize that Corona is real, I know that it has taken lives, but the way we are living now is hurting so many people mentally & physically in some cases, economic ways, just all around hurt. Stop being the mask police, stop being the political popo, stop judging every freaking one for having an opinion different than yours. As I said in a previous Corona blog post a few months ago, mind ya business. Too many people are hurting due to being quarantined & shut-in, our children & elderly especially & those in hospitals & residential facilities. Their hearts are breaking by not having any visitors. And I know from personal experience with Jack & my Daddy, that if you don’t have a patient advocate (aka a loved one) with you while in the hospital, mixups happen. All of this is so unfair & now because everyone’s strings are being pulled too tight because of Corona, quarantine, political divide, not having any leisure activities to take your mind off of all of the above, those strings are about to break. We all need to calm down (self included). Think & post about positivity, find things that make you laugh, read, cross stitch, anything to keep negative thoughts & words from entering your mind & the keyboard. Most importantly, just keep scrolling! So although whether people are or aren’t wearing masks can be concerning, don’t make it your life or obsession, it’s annoying no matter where you fall on the decision. You aren’t going to convince an adult either way. Just try to be happy if you have a nice home life, home is everything to us & is a safe place for most of you. Focus on the positive things in your life, not what people are or aren’t doing.

In the Walmarts

Strange things happen at”the Walmarts”. I’m sure their employees have a long list of craziness that happens on an hourly basis, much like crazy people we encounter at The Berry Patch. One of our girls got asked if we had seedless peaches, people are crazy! And never judge someone in pajamas in the Walmarts, more on that later. That’s just a hook to reel you in. Each time I write a blog, I wonder how on earth could I possibly find anything else to write on? I think I’ve told y’all all the crazier stories in my life, and I honestly didn’t know that Jack could do many more foolish things, but he has proved me wrong yet again. His resiliency is astounding, Jack absolutely amazes us on how much he can tolerate (myself included, frankly). For those that keep up with Jack, you know that he is having a severe issue of constipation. I know, not glamorous talk, but this is one of the cruces of his current state of problems. Jack is still continuing his protest on not eating nor drinking. He is irritable. I’ve given him laxative after laxative, stool softeners, tried to get him to go to the doctor, nothing has worked. This is a Dravet problem. He rarely moves, often spending his entire day in the bed, not even getting up to urinate in well over 24 hours spans. Dravet children/adults can be anorexic. Jack is the poster child for an anorexic, he truly has lost so much weight & couldn’t stand to lose any to start with. He now weighs 105lbs & is 5’9. So he doesn’t get up & walk around enough to poop, doesn’t eat or drink anything to get things moving, nor will he drink anything to help combat the issue. Enough about pooping, here’s the sorry.

Jack had over $100. Earned money at that blooming yard sale selling those Pokémon pins last week (I’m in the wrong business). He started around 7pm the other night about wanting to go to Walmart. He’s not been to any store in months. I was unsure if Jack would be able to physically endure a trip to Walmart, but as you all know, telling Jack “no” is a death sentence for me. Luckily for me, they closed at 8:30pm, this would limit our time inside the store. We got there at 8pm & the checkout lines were backed up into the clothing department & beyond. People were trying to get out of there before closing time. Near the cash registers, there is an aisle of Pokémon cards & such. This is where Jack’s first stop was. He dissected every inch of the Pokémon section, which just so happened to be right beside a busy cash register. He was all up on those people in line, sticking his butt out on people, stepping on their feet. Jack was walking like Otis the town drunk because he is actually weak as water due to not having ingested any significant amount of food or drink in weeks. We are both in masks, which is not a good thing for Jack because being a Dravet patient, he can not regulate his body temperature like most people can. That made me even more worried. He also wanted to visit the toy & movie section of the store which is a long way to walk especially if you haven’t walked any further from your bedroom to the bathroom in weeks. We made it to all the departments Jack wanted to hit with an armload of Pokémon junk & with five minutes to spare before closing time. The checkout lines were still backed well into the clothing department. I’m thinking, how is Jack going to stand here this long? Most people had carts full of groceries, we had only five items. He plops down on a table holding folded shirts. As he was resting, Jack became focused on one thing & one thing only, a tear in the cellophane wrapping on one of the Pokémon boxes he was purchasing. When he asked to exchange them, I told him no, we couldn’t get out of line, there was nothing wrong with it. It was wishful thinking me thinking he could be reasoned with. What happened next was a doozy, the inspiration if you want to call it that of this blog. Jack gets up from the shirt table he was sitting on & stands next to me in line & fully collapses on the floor! I just knew he had gotten too hot & had done too much. Thankfully, two precious strangers picked Jack up. One fella walked Jack to the service desk with his arm around him the whole time. Because of this evil, devious Corona crap, there are no seats in the Walmarts! Jack had to sit on the floor for rest. I recognized a guy behind the service desk that I went to school with & ask him for a bottle of water. He gave Jack one, Jack rested a few minutes. Two associates came up to us inquiring about Jack & wondering if we needed any help. All Jack was concerned with was exchanging that torn up Pokémon box for one that the wrap was perfect on. He tried his best to get those ladies to get him another one but neither one understood what Jack was saying. It was then that I realized Jack had faked the whole collapsing episode. He manipulated the situation to get what he wanted. After his break, he got right up & went straight to the Pokémon aisle like nothing had ever happened. What a pure pain his is. Nothing is ever easy with him nor simple. This alone goes to show just how devious, conniving, & mischievous Jack is. He collapsed while we were in line simply to exchange the Pokémon box that had the torn wrap.

Now why do I say don’t judge people wearing pajamas at “the Walmarts”? The family that was standing next to us in line, the Mama had on pajamas & bedrooms shoes, but she raised her children well. Her son was the one that picked Jack up off the floor, including another man that was not associated with the family. All were very concerned about Jack & his safety, two total strangers. I was once again reminded how wonderful the kindness of others really can be. From the strangers that picked Jack up, to the Walmart employees, everyone involved made sure we were okay, even if Jack was faking. In effort to try to get Jack to eat some food, we went to Sonic, but all he wanted was a root beer, I got a Coke. He still didn’t/doesn’t have any desire to eat. All Jack had literally eaten that day was two pancakes, that was the first bit/bite of food in days. I was hoping he was on the healing end of this cycle. I also thought we could kill some time at Somic’s dine-in area because Ava had a friend over swimming with her without Jack interrupting. Of course this would be the night he didn’t want anything but a drink at Sonic. Divine intervention at its best showed up at Sonic though. The family that assisted Jack & I at Walmart were also there, I felt like that was a sign I should buy their meals & I gladly did. It was a small gift for the help we were blessed with.

Fast forward a few days, Jack finally allowed me to take him to the doctor after weeks of me trying. The doctor said it was nothing more than constipation, he did an examination & lab work as well & all was well with that. He is still not eating much at all, nor drinking. We are working on other measures to help aid with his current issue. As I write this blog, I’m hanging out with Jack in his room watching him work on writing Japanese symbols, I am tearful. He wants to be able to do this so badly. His handiwork is that of a toddlers. Makes me so sad that Jack’s condition is the way it is. The last two weeks or more have been very challenging for us all. Jack is needier than usual, requiring more attention than Lee or myself are able to give. He is not wanting much to do with his main caregiver either. He calls me home all day & evening long, is more irritable than usual, & sleeping more. A large part of his problem is not wanting to take the time to sit on the toilet to expel. Jack thinks 100% of my time should be devoted to him. A large portion of it is, it’s just not enough for him.

As frustrating as Jack can be, I certainly don’t want to see him in this condition. We go from one extreme to the other most times, with happy-mediums rarely occurring. I am thankful for the individuals that assisted Jack at Walmart, Jack thanked them personally as well-even though what he did was purposeful. Jack is currently asleep on my lap, it’s just past midnight, I haven’t yet showered from my day spent at The Berry Patch. He looks like an angel to me as he sleeps.

As I reflect on the worse part of that evening, it was accidentally sipping Jack’s root beer instead of my Coke. That stuff is horrendous! And remember to be kind to others in the Walmarts, you don’t know what they are going through.

Had a Bad Day

Ever have one of those days you just know is going to be sucky? Of course you do, I just had one of those as many of you know from watching my most recent video on Facebook about Jack & his iPad getting broken. I knew that particular day was going to be hectic, I knew it was going to be bad, I only didn’t realize what form or shape the ugliness would occur. I try to take one day to give to Ava, although my full attention can’t be given to her often times because of business matters, but I do try to make the whole day revolve around her for obvious reasons. This past Tuesday, a friend needed a test subject for a spray tan & I signed Ava up. We had to be there earlier than I like to willingly leave our house due to Jack not being awake, but I begrudgingly shoved forth with the appointment even though I knew there would be hell to pay later that day in some form or fashion. I tried my best to get Jack to awaken before we had to leave. I never like to leave the house without him being awake or having taken his meds. Jack is used to me doing those things & sometimes doesn’t take well to another person filling in for me. As Ava & I made the drive to the spa, I silently prayed for a good start for Jack. While Ava was getting sprayed down, I prayed Jack would awaken happy. The whole time in the spa, I spent my time on my phone texting & calling to check on Jack, so in essence, I was taking time away from Ava. Thankfully, Mama was able to assure me Jack had taken his meds & his caregiver had arrived, all was well at that point.

After the call to my Mama to check on things was reassuring, I got a call from one of our employees that the credit card machines had stopped working, normal occurrence for us. I have some sort of magnetism that causes cash registers, computers & any sort of electronic to blowup. I don’t even have to be in the building for this to happen, guilty by association! Yet another fire to put out. Calling tech support or customer service for anything is not my strongest suit. I am such an angry person by the time I get to speak with an actual human, only to realize I’m talking to someone overseas & most of the time, I have no idea what they are saying. Last time I called SiriusXM about my service, I talked with someone that had very bad broken English & a car alarm kept going off. I had to wonder where in the world she was working from, the pure-t streets of New York City? Any way, when Ava & I got back home so she could bathe after her tan & such, Jack wasn’t in his room. The last month has been very trying with Jack health-wise. He hasn’t been eating hardly enough to keep a mouse alive, or drinking enough for nothing. Most days only drinking one sip of drink for am & pm medication times & that is it. This is a Dravet trait, these kids/adults have feeding issues. Some are medication related, but the main impact is from Dravet itself. Jack has had the passion to eat (maybe), requesting food from here, there, & yonder, but had/has no desire to eat. I say maybe because Jack has a strong desire & obsession with food. He desires to spend our money relentlessly on frivolous things all the time, food is a big one. He is obsessed with ordering food & being the one in control but will not touch it when brought to the king himself. Jack has had a very pale (more so than usual) pallor, not been talking a lot, irritable, & it’s been a struggle to understand him at times because he was too weak to talk. He complained last week about his side hurting, so I asked him if he’d go to the doctor to see about it. He said yes, later that evening he told me he wasn’t going. There is no way to make him so to the doctor at all. I do what I can at home to treat him with what I have. He hasn’t coughed, ran a fever or anything unusual. This is plain out Dravet as well.

Back to seeing Jack out of his bed after the spray tan. He & his caregiver were outside, which was worrisome & only added to my confirmation that today would be a bad day. I’ve always said if Jack gets out of the bed within the first hour of being awake, it’s going to be a bad day. Jack was on the deck with his caregiver discussing having a yard sale for his Pokémon pins. There are several things that Jack loves, its spending our money & making money. He has 100’s of these pins. He & his caregiver setup in front of our house with a table, his pins, & a bottle of Coke he had been nursing on for well over a week. He had a customer within the first minute of being out there!

When has Jack participated in yard sales in years past, it has always been a fiasco. He would run around like a chicken with its head cut off, would ask ridiculous amounts of money for a piece of junk, shake, tremble, eyes dilated. The best way to describe his behavior at a yard sale is like that of a heroin addict. He talks nonstop, hands tremble, pupils dilate-all from the excitement of the whole situation. It’s too much for him thanks to Dravet (another evil characteristic). Not figuring Jack would last long outside since it was hot, he surprised us all & stayed out from 1pm-6:30pm. The ruckus started around 6:30pm just as I was about to go into the restaurant to try to have an enjoyable meal with our oldest, who we had not seen in weeks as well as Mama & Ava. Our chosen spot was Bad Daddy’s Burger Bar. As we were pulling up to eat, this is when the ordeal began, bear with me as I recount the middle part of the story.

It was shortly after Jack got setup for his yard sale that Coleman called wanting me, Ava, & Mama to ride up to Charlotte (his new stomping grounds) to get his old truck. Coleman is a recent graduate of NC State, has a job in the Charlotte area, & just purchased his first adult item, a car! We’ve not seen his apartment yet, so we were anxious to see his new place & inspect the liquor cabinet of course! We helped Coleman do a few things inside his apartment & later helped him load a chest of drawers to return to Big Lots (he is my child after all lol). As we were approaching the restaurant (I am nearly two hours from home), Jack’s caregiver called to explain that Jack was upset & had the potential to become violent. Jack of course has all his electronics outside with him during his yard sale. One of the chairs they were sitting in was black just like his iPad. The iPad blended in perfectly with the seat & his caregiver sat on Jack’s iPad & shattered it. It was in a case, but it still broke. Jack then flipped a chair, flew in the house, slammed the front door & slammed his bedroom door shut. Sort of typical teenage behaviors from what I’ve seen on tv, thankfully Coleman nor Ava acted like that, but when Jack does, we know the outcome could be dangerous. She called me first which I’ve always instructed her to do, I then called Lee who flew home not knowing what to expect. I called Jack & tried to explain it was an accident, it would be replaced, all would be well. Unfortunately, Jack doesn’t have a reasoning bone in his body. He was pretend sleeping which is an attention seeking method he uses often. He can go from pretend sleeping to Ninja fight mode in less than a millisecond. He did not thankfully, although we were all worried terribly he would become violent.

I had to do several things while trying to dine with my family. One was become preoccupied with a brewing situation at home, calling Jack, Lee, or Jack’s caregiver every few minutes to make sure things were calm, reassure Jack I would go purchase another iPad that night. Not only could I not enjoy the company I was in, I had to drop a wad of money on an iPad & case, something that hadn’t been budgeted for of course. The first Target was out of iPads, the second one had one left & it was a pricier iPad more than I had planned on spending. Instead of taking the chance of going to another store & risk them being out, I bought it out of fear & a time constraint. Fear Jack would fight us all if I didn’t come through. I honestly don’t know if I could live through another fight with him. He is too strong for me & I don’t know why. He doesn’t ever move, ever! I walk around all day long carrying heavy boxes, lifting watermelons & such. I am strong, but I’m not Jack strong. Jack’s mind is strong, too. He is the most strong willed person I know. Because his mind is so strong, it keeps his strength going when he is in fight mode. I go through scenarios in my head planning what I would do say if I were in the kitchen & he attacked me. What would I do if I were alone? Ideally, I would love to have a huge net in each room that I could get to to throw over him while I lock myself in a room until help arrived, but that’s not feasible in the least. All I know to do is knock him to the ground & hold him down until someone comes to help, if that would even be a possibility. Once home with the iPad, Jack didn’t even care about the new one. He is still focused on his caregiver breaking the iPad. She is a tough woman! Anyone that willingly stays with Jack is a blessing & I have to believe they will be sporting a crown in heaven one day. Is it an easy job physically, yes, but mentally it is not. And even some days, your physicality gets tested. I am grateful for anyone who puts their well-being on the line for us & him. I ask myself all the time, why are our lives this way? Why must we live in fear daily? Why can’t Jack find satisfaction with anything & why can’t he be reasoned with? As if the Dravet diagnosis isn’t bad enough, we have a whole other list of issues to contend with.

It is so scary living with a ticking time bomb. I’ve never been one to be involved in fights, only getting in one & it wasn’t really a fight when some gal from Rockingham was dissing us Ellerbe gals. Don’t mess with my hometown or people lol. Fights scare me, they always have. Some people are drawn to them, get involved when the issue doesn’t even involve them, record them, encourage the fighters. I hate to see any person hurt, no matter who they are. I’m the person that would be willing to fight if I see an injustice. I’ve seen kids being bullied before & have stopped to breakup a fight or intervene in someway. Never would I be willing to witness an injustice on anyone. I wish we could all be this way.

Humanity…humanity can be amazing. We all makes mistakes, we all have accidents, we all can be mean, overly tired, & my favorite term, illboxes. When I put out my video of riding solo home from Charlotte on Facebook a few nights ago & asked for prayers for a peaceful night for Jack, I was touched by the many prayers our family was gifted with. It was then that I realized people really do care. People are so kind, people have huge hearts. Our family is so blessed to know so many people that care about our situation. My heart breaks everyday for so many reasons, mostly for all that are housed in our home, but it hurts for our entire population. Why people can’t get along & accept each other as is makes me sad. So many people don’t know what it’s like to be a caregiver or have an ailing child or a family member or friend with a chronic, devastating disorder or disease & that is great. Being exposed to these things makes you more compassionate, but it also hardens your heart in some ways like mine has become. I don’t have time for nonsense or foolishness or frivolous things. I know longer care about my looks, what I wear, or what people think of me. My message to you all is simple & one I think we could all stand to learn & practice daily, be kind, unless someone is acting foolish or “stew-pid”, then speak up & act a fool! Also, please continue to pray for better days for Jack. He’s still not eating or drinking & is sleeping more 13 hours or more a day. Although he is getting a large amount of sleep, large amounts of sleep aren’t a good thing for most people, it makes most people extremely irritable. The later he sleeps, the later my day starts. I’m not able to get out of the house now until almost 1pm because he’s sleeping so late. Not sure about why the recent changes in sleep, I may never know or understand. It’s 12:09pm as I wrap up my final paragraph of this blog & Jack is still asleep. There is so much I need to be doing at work, but can’t. Until next time. 💜


Melancholy is a word I enjoy saying, but not a feeling having liked experiencing. Most days as long as I can get out of the house without a major calamity, I know I will be okay. This week though has been tough on me. Owning a business & dealing with customers & employees, I have to try to put on a cheerful face & push all my inner demons aside. Maybe that is what helps keep me going when life’s difficulties with Jack overwhelm me, pretending is what it starts out to be, but then pretending turns into actually being happy… happyish for the day. If you didn’t happen to read my previous blog, then you missed out on Jack being blackmailed, nearly fighting over a magnetic chip clip, but also he has an infected fingernail from clipping it too much. Jack is sick. Whether it is from the nail or something else, I don’t know for sure. He isn’t running a fever, complaining of anything hurting, nor is he coughing. He looks weak nor is he eating or drinking. Along with the latter, he is sleeping a lot. My workday can not get started until Jack awakens, takes his meds, & I know he is settled. He’s been going to sleep around 10:30pm every night for nearly two weeks now & sleeping til almost noon the next day, even then I have to wake him. When I have to wake Jack, I am scared. He can be the most combative when his sleep is disturbed. I have to coddle him, baby him, & talk overly sweet to him. This goes on for 30 minutes or more. Here lately during his unknown illness, times have become worse upon his awakenings. I have to spend more time in his room trying to rouse him, being more nice & kind (which is not my nature) to him-all out of fear. A few mornings ago, desperate to try to get him to ingest some type of food, I physically fed him a bowl of grits. The entire time I fed him, Jack never opened his eyes, he pretend slept the whole time (attention getter). How could he not be getting enough attention when I was sitting there spoon feeding him! When people are on the ketogenic diet, don’t eat for a few days, or are sick, I can smell the sickness on their breath. Every morning when I open Jack’s door to start the daunting task of poking the bear, I can smell the sickness permeating from his breath. The best way I can describe this smell, is the smell of a butterbean shell. If you never shelled butterbeans in the summer in front of a box fan at Grandma’s or your Mama & Daddy’s house, you missed out. Some of the best times of my life right there! I remember singing into the box fan to hear the changes of my voice for fun, my how times have changed.

It is 12:17pm, I need to be at work but I can not leave the house until Jack awakens. He will not wake up. Lee has tried, I have been in there at least six times trying, nothing is working. So I sit here & wait. My entire life revolves around this one person. It’s easier to manage most days, all this week though has been difficult. Our whole crew at The BP awaits my arrival to be given tasks on how to proceed for the day. What really makes my top blow, but I guess only because I am already stressed to the max any way are nosey people. The customers/inquiring minds that wonder what I do all day. Some are brazen enough to ask to my face. I had one inquiring mind to say to me last week, “oh, you’re here, you’re never here”. I also had one man say, “so you come to work everyday at noon?” People worry about what I do & why I’m not behind the counter so they can see my face 24/7. Just because an owner of a business is not there all the time, doesn’t mean we are laid up eating bon-bons. It means we are operating a well-oiled machine & have people we trust while we attend to other business. Given, there might be a shipwreck in the Bermuda Triangle every now & then lol. People say, “don’t worry about what others think”. I don’t really, I only find it insulting. Some people have zero couth!

Waiting on Jack is what gets me down. As I sit here typing this blog, my mind wonders what the day will entail with him. I’m tempted to leave with him asleep but know the ramifications of doing so could be bad for his caregiver. Once he does wake up & gets settled, I then worry about how he’s going to behave today. We just don’t ever know. He could interact with a pervert, get blackmailed by some creep in China, could beat someone up, demand some sort of exotic food & make me have it shipped overnight, who knows! All of the above make me melancholy. Such a beautiful word, with a sad meaning. When I think of melancholy, I think of a southern belle sitting under a magnolia tree sipping her afternoon dose of sweet tea donned in a frilly lace dress & a straw hat with a big bow explaining to her debutante sisters how Rhett broke her heart & how it’s made her so melancholy to think a man could break heart like he did. In actuality, it’s me sitting on the deck alone, sweating to death awaiting the opening of Jack’s eyes, & wondering what the day & night has in store for our family. Although the world is a safer place when Jack is asleep, there is a such thing as sleeping too much. Sleeping too much makes people ill, especially teens, young adults, & people with mental health problems.

It’s hard to find the joy in life when we live a life such as ours, I guess that’s why food plays a large part in my life. It’s one of the few pleasures I can find. Am I sad, depressed, moody, down-in-the-dumps, I’ll choose to call it the more sophisticated words-melancholy.

Everything & Nothing

What a day this has been! There are some days that we know from the time our feet hit the floor that life is going to be wacky. Today was that day for me. It all began at 6:24am with a telephone call. We have a landline still at our home & a man called requesting Lee when I answered. I had only been asleep roughly 4.5 hours at that point & was ill! I gave him a hateful “no”, he hung up on me. Turns out it was someone looking strawberries of all things. Who in the world needs strawberries at 6:24am! I was mad to say the least, when Lee got done with him, he won’t be calling our house ever again. This was the first indication of a bad day. A few hours later, late in the morning, we had a major issue at the Bermuda Triangle of dry land, aka The Berry Patch. To say I was surprised would be a lie. It has left Lee & I mentally exhausted. One day, not today, there will be a blog on it.

Things on the home front with Jack, have been festering to a head, it was only a matter of when. It’s been a compilation of several bits of crazy. Weirdness that can only happen to Jack & ourselves. I’ve written about Jack’s love of nail clippers. He loves them like Popeye loves Olive Oyl & spinach! He doesn’t love them because he loves to cut his nails, but loves them because he can’t stand unevenness or a snag of any kind. This boy could be the one to find a needle in a haystack! He goes looking for trouble & trouble finds him in all realms of the world, be it nail clippers or the internet. Every single night as I clear off his bed complied with every piece of junk, food & paper in his room, his nail clippers are amongst the pile. Take them away you may say, but we’ve tried. He demands their return & instantly. So we let him have at his nails & due to this, he now has an infected fingernail. An infection for Jack means a change of behavior, not just an ouchie. Lee has doctored on his finger for over a week now. Jack has also not been eating nor drinking. This has gone on for nearly 10 days now, maybe a little longer. Last night I spoon fed him a jello & applesauce just so he would have something in his belly. He is also not using the bathroom in either capacity. There is nothing we can do to make him eat or drink. We keep piling his required meds into his body twice a day, he is not voiding at all, everything is being held inside his little stick-frame of a body without getting filtered out properly. Jack goes through vicious cycles like these more often than not, but the finger infection has only added more stress to his body & mind. Not only worried about the above, Jack is extremely concerned about the government shut down. His birthday is in August, he is worried to death that Chuck E Cheese (aka Hell) won’t be opened by then. He is also picking out gifts & trying to plan who all is going to Hell with us. This is because of Dravet Syndrome. Jack doesn’t have a patient gene, he gets hyperexcited over holidays & special occasions months in advance (one of the reasons I loathe special events of any kind).

We’ve got three issues-the fingernail, lack of eating & drinking, & a government shut down. I sound like Columbo solving a crime! Jack has also been doing a lot of pretend sleeping. Pretend sleeping is an attention getter. I knew something was wrong, I didn’t know what until the next series of events took place which was some piece of trash Jack got tied up with on an app called Hangouts. Hangouts is an app you meet people on & message with. From what I see on Jack’s, it’s mainly people pretending to be someone that loves him & is going to marry him, all a scam of course. Last week, Jack’s Facebook was taken over by someone other than Jack. Upon investigation after Jack fell asleep the night I learned of his page being hacked, the pieces of the puzzle started coming together. I found conversations on Hangouts where Jack was being blackmailed by said trash. Jack apparently sent an inappropriate video to this person & now they are trying to blackmail Jack for money for their silence. What I DID find amusing about their conversations were as they were demanding money & telling Jack how they were going to ruin his life, tell the FBI & his parents, they asked Jack how much money he could give them, Jack said “$2”! Then told them $1 billion in a later conversation. I found it comical that Jack was toying with this trash. Posted below are conversations with “Nathalie”. This person is from another country, broken English is the first clue.

This is why Jack has been pretend sleeping. He’s been worried about this person. I can’t talk to him about it because he would know I was snooping on his phone. I was able to go on & block this person, hopefully they will stop soon. Prayer warriors, join us in prayer that this person with leave Jack alone & that this crook’s heart will be healed.

Now onto the events of tonight. This evening I came home early to have a fully cooked meal ready by 8pm (joke). As I was cooking, Jack began talking to Ava about a magnet on the refrigerator. Not knowing what he was talking about, I told her to ignore him & go upstairs. Next thing I knew, Jack came barreling out of his room & demanded a blue magnet, which was nothing more than a chip clip with a magnet on the back. Why he suddenly became fixated on this, I do not know, that’s just how his mind operates. I told Jack I thought the magnet broke. He stomped on the floor like he was King Kong, enough to rattle the whole house. I was so scared. There I was was in the kitchen cooking, two knives out on the counter, hot pans. I really didn’t know what to expect. Lee wasn’t home yet, it was only Ava & I. She is upstairs texting me scared about Jack wondering the same thing I was, is he going to fight? Luckily I found a blue clip in the ever famous kitchen junk drawer. Once I gave it to Jack, he tossed it on his bed like it was a piece of junk (which it really is). That blue chip clip was everything & nothing to him all in the same breath. He didn’t mention the clip again or even touch it again. I was able to get Jack’s mind on something else fortunately for myself. Going through physical rage with Jack is very draining on my mind & body. I honestly envision having a heart attack one day during one of his WWE moments, that is if he doesn’t kill me first.

One thing about Corona that we have enjoyed has been that Jack hasn’t been talking to as many strangers (minus the above mentioned) as he once was, plus, there are restrictions on things, but those restrictions are starting to make people with mental disabilities possibly become worse. There are so many different theories, suggestions, & guidelines for Covid-19, but there aren’t any for mentally unstable people & the ones that care for them whether it in the home or in a residential facility. Both parties are suffering due to Covid. In Jack’s case, it is making his anxiousness increase even though he didn’t really go a whole lot of places any way. We would go to a movie every few months or go out to eat, which I haven’t missed at all cause he acts so foolish, but it restrictions from the government are making him feel like he is grounded so he is rebelling. There are so many children, young adults, adults, & elderly mentally ill patients that can’t been seen by anyone other than employed people of their facility & that’s just not right. Covid is killing people indirectly with broken heart syndrome of that I’m sure. These are the things the news doesn’t report about. They don’t report about seizing children not being able to have their parent in the ER with them due to restrictions, I see this on my Dravet Facebook groups. No matter where you stand on Corona, that is ludicrous. As I was watching a special on autism today, a mother said about her autistic child that was 20 something & she was trying to plan for his future, she asked “who’s gonna love him when I’m dead?” Which got me to thinking about the unfairness of this pandemic. It has been the most unfair to the ones in nursing homes that had visiting family & those in mental/medical care that are not allowed any visitors whatsoever. I bet they wonder if their family is dead, how could they not know if their thinking capacity isn’t there fully?

What an evil world we live in. As I wrap this blog, I realize it’s not one of my lighter blogs or even something that has a crazy story. Maybe to you this blog is a crazy story, but to us, this is all too familiar that it’s like normal, daily life. It’s hard to believe that I once held baby Jack in my arms as he seized for an entire day & night only to repeat it again the next day constantly & thought that would be our only concern with him. Was I ever wrong! Now I look at his body, a bag of bones basically & think how I could best defend myself if need be, not whether or not he will have seizures. Seizures are the least of my concerns now. My worries now are his strength, fingernail clippers, fools he interacts with on the internet, & his lack of eating & drinking-in that order! Plus, it’s been raining so much I don’t know if the moon is full or not to bring on all this foolishness. Yesterday was basically a full day off for me at The Berry Patch, I needed to make a Sam’s Club run, Mama went with me. We had a good time looking at everything, talking, doing things that we normally do but haven’t in months. I kind of feel like when you play, you pay. Sounds unreasonable to type out but I think there’s some validity to it. The story will continue….

The Gift

If you are a man, consider yourself a gift. Most men (in my opinion) live a much easier life than women. Now there are exceptions to the rule, but being born a male is truly something special. I wouldn’t give the world for the experience of carrying a child or being the main one to nurture our kids, but outside of that, females have it hard. What makes me think this? A few nights ago, as I was working in our kitchen, Lee was fast asleep (as a woman, I don’t need sleep), & heard a knocking outside. It wasn’t a knock on the door, it sounded more like a knocking on the side of the house. Concerned it was someone playing a prank or an animal, I awakened Lee to tell him I heard something. As a man, I feel he should be the first to know, the first responder of our home. His reply was he thought he heard something earlier. All this happened after 9pm, which was a little late in the evening for him to be walking around the inside of our home lol listening for a noise. He walks through quickly & goes back to bed without a solution. I heard it again & told him before he could close his eyes & he says in an illbox tone, “what do you want me to do about it?” Every single time I have woke that man up to investigate a noise, he gets ill. I’m sure he’s not the only man to do so. I don’t know what your experience was like if you raised babies, but mine went down like this-I stayed home with all three kids, nursed them, fed them for every feeding because they were hard-headed like their Daddy & wouldn’t take a bottle. This meant I had to wake up all during the night to feed. Was I ill, yes I was. Did I get visibly upset with him, sometimes, but the difference was I did this multiple times a night & never got a full nights sleep. I hear noises outside all the time, but only poke the bear once every six-eight months if that. Not a ridiculous amount of times. A little compassion would be nice!

Maybe it’s a southern thing, I really don’t have enough interactions with people from different areas outside the south to know either way, but men are spoiled. Again, let me reiterate that this is my opinion. I hope there are men self-sufficient, I suppose the single ones are & have to be (if their Mama’s aren’t still living). Women hold so many responsibilities just in the home. Most are the sole chefs, accountants, receptionists, taxi drivers, house cleaners, caregivers, & wear so many more hats. A man can come in from work after having slept 10 hours solidly & peacefully the night prior & fall asleep as soon as he kicks back the recliner. A woman comes in from work to start or manage supper, take the kids to various practices, pay a few bills, referee the kids, then has to clean the kitchen, make arrangements for everyone else for the next day while Daddy is fast asleep. Do you think the woman got a full nights sleep the night prior, let me answer this for you, no! Women, historically, have a harder time sleeping than their male counterparts. Doctors say it’s because of hormones. I say it’s because of hormones & because we have so many more things to do that keep our minds in overdrive. Anytime I’ve ever been to family gatherings, who are the first people to be in the recliners after a meal nodding off, men! Who worked the hardest preparing the meal, shopping for the meal, unloading the car, & then guess who cleans the kitchen, women! What an injustice! If you don’t have these experiences, more power to ya, please reveal your secrets! You have unlocked the code most women since the beginning of time have wished they could. I’m no feminist (obviously), but daggum men, step up your game!

Am I writing a personal letter publicly to my husband, no! He knows exactly how I feel, I am merely venting to a larger sized audience. When I need an appointment with my dentist or a mammogram, I call myself & setup these appointments. When hubby needs an appointment of any kind, I get asked to schedule it. Then if it’s at a time not feasible for him, I have to call back. How ridiculous is all of this? I can see me asking Lee to schedule my yearly pap exam. Women have nothing else going on, what is one more thing. Being a secretary was a personal aspiration of mine outside of working at the Food King grocery store-back in my days of youthfulness, it was Lowe’s Food. I loved the way the cash register keys sounded when the girls waited on me when I went in to purchase a carton of Vantage cigs for my Mama & Daddy at the old age of 6! In the 80’s, most women worked as secretaries or in a mill. My Mama did both, but as I was growing up, she mainly was a secretary, then became an office manager as her last paying job before retirement. One of her jobs when I was around age 7 was with a trucking company. It was a large building that housed several women & their desks. Each dark brown desk was equipped with a telephone (my first love), a file cabinet, a typewriter, my favorite was the desktop calculator, pens & paper galore, a huge desktop calendar (to write hubby’s appointments on), the ever important ashtray & let’s not forget the dark brown paneling because that only added to the oppression of women-picked our by a man no less! If women are nothing more than objects meant to work 24/7, then they need to be more depressed with brown paneling & brass door knobs. Then you add in the packs of cigarettes being smoked in an 8 hour shift & you’ve got yourself the makings of a country music song! The office would sometimes look like the VFW on a Friday night it was so thick with smoke. I despised the smoke, but I wanted to operate that telephone, calculator, & typewriter. It was the buttons. Mama could fly with that calculator, I wanted to be just like her! I also loved sound the typewriter made when pressing the keys, I loved the texture of the push-button keys on the phone, I loved that you could put a person on hold-I could not do that at our house. Our phones were rotary dial phones (if you’re a young person, you had to stick your finger in the appropriate number & turn the dial to call someone). I could press mute at my Mama’s office! She knew shorthand, now that was a gift. Mama was a master at it like she is at all things, & my sister Jodie who is 9 years older than me but looks 20 years younger than me took it in high school & was a master at it as well. Shorthand was phased out by the time I got to high school, just my luck! Why did they do shorthand? To write down what “the gift” was telling them in a quick manner so the woman could type it up because “the gift’s” hands were too busy smoking a cigar most likely. Being a secretary was glamorous in my eyes, now I know different! My dream did somewhat come true, I am still pushing buttons both literally & figuratively! I love operating our cash registers at The Berry Patch, I’m almost as fast as my Mama was on her desktop calculator.

Getting back to household chores, it has been my experience that women typically do the cooking & planning of meals. I giggle sometimes thinking about Lee worrying about whether I have eaten or not. As women, we worry about all the people living with us whether or not their nutritional needs are being met. Do the men worry about such? No, they are too busy sleeping! Most men never worry about the baseboards getting clean, the bathrooms being all sparkly, cleaning out the pantry or wiping down the cabinets, washing the sheets, curtains, the list goes on & on. Do I belong to a club accosting men for being men? No, I’m simply pointing out differences in men & women. After big meals at my parents house, we ladies say, “I wish I was a man”. So why don’t we take a stand & just not wash the dishes, plan the meals, vacuum, stop it all? I really don’t know why I’ve never personally done this. I do enjoy cooking, organizing, grilling, but it all gets sort of robotic because it is done so frequently by the female sex that the enjoyment gets sucked right out the window. I would certainly never hang a wreath under a billboard with a friend lifting me up in a bin box like Lee did in this picture. Just one of the reasons I love him!

Please don’t think I am giving Lee a hard time, the above goes for most of the ladies I know. Lee works very hard, often leaving before the sun comes up & not getting home until well after dark. I am not perfect by any means. I am extremely anal about most things. If something is crooked, it must be fixed immediately, I don’t like overhead lights on whereas Lee does, we fight about whether the big lights or the lamps should be on all the time, I have no tolerance for foolishness (outside of Jack), I complain all the time (obviously lol), & I have gotten very upset with Lee before because he washed clothes (stupid, right?). Don’t get me wrong, being a “gift” comes with a certain amount of assumed responsibilities just as it does being female. The physical labor men do on a day basis is often more strenuous in some ways. I could never do some of the things my husband does like put together an irrigation system, change a carburetor on a tractor, kill a snake, or crawl under a house. Being a certain gender comes with assumed roles. I am okay with some of those roles for both males & females, but I do think the house rules need to change & it is my hope that the younger generation can do that. Everything inside the house should not be left up to the woman, as everything outside the house shouldn’t be left up to the man, there should be shared responsibilities. Ava (our daughter), remember this! Maybe this wasn’t a note for Lee, but for Ava instead! Will I continue doing all of the above, yes! Will I continue to wish I were a man, yes! Will anything be changed because of this post, no, & I’m okay with that. I’ll carry on attempting to hide my grays unlike men, who gray very handsomely yet another thing men have been so graciously gifted with. So in the end, I guess you could say we are all “gifts”. Men, how about making an extra special “gift” for your wife & dust the baseboards tonight!