Category: Seizures

We’ve all been hunted down via phone by our children. Back before cell phones were ever a thing, we actually functioned without them. Our species could go shopping, hunting, swimming, even boating without a phone! Now, we would not think twice about doing any of those activities without our phones. I like my phone as much as the next, but I like to think I would not be as tied to my phone if Jack didn’t have severe medical & behavior issues. I’d be able to take a nap in peace, enjoy the special moments in life, or work without the constant worry that I might have to flee from wherever I am in order to get to Jack at a moments notice. Growing up, I was on the go all the time, at a friends house, sports, work (started when I was 11), anywhere I could go. Often times, I would be working at the produce stand where I got my start & Daddy would come get me since I was way too young to drive…legally that is-I was a full-fledged country girl with years of driving experience already! As a preteen/teenager, I thought Sunday evenings were absolutely depressing because there was nothing on tv. This was the mid 80’s after all. We only had three tv channels & one of those was kind of iffy. I spent some time on the roof of our house with Daddy adjusting the antenna that was the size of a helicopter just to be able to watch the evening news. I often worked until close around 7pm, arriving home at 7:15pm. When we pulled up in the driveway & I would see Mama’s car gone, I was in a full-blown depression! That meant I would be prisoner to the tick tock of 60 Minutes. Nothing was any worse to me at this time of my life. At least with Mama there, we might could watch America’s Funniest Videos. The ticking of the 60 Minutes clock would be like trying to make your kids watch paint dry without a phone or any sort of electronic device, imagine just the child & the paint. Pure torture!!!

On these nights that Mama escaped the ticking of the clock, I would call THE Walmart & have her paged. If it was before 6pm, I’d call Belk, JCPenney, & Cato’s-that’s the extent of our shopping choices in our county. Once Mama answered the most embarrassing phone calls of her life, I quizzed her relentlessly. When will you be home? Where are you eating? Why didn’t you wait on me? I had all the numbers of any establishment & anyone memorized, I was a numbers savant back in the day, a human rolodex. This brings me to the title of today’s blog, Dolly vs. Shania. Jack has a very fond fascination of music, all sorts, different genres. One of his particular loves is Shania Twain. He absolutely has zero interested in Dolly Parton, one of the greats. During one of his searches on YouTube about Shania, he came across a video of Dolly Parton & Shania Twain on the Oprah show. The duo sang Dolly’s “Coat of Many Colors”. Jack was very intrigued with them singing together. He shared the video with me & his caregiver, Sherry. Yesterday Jack tracked me down at work, first calling my cellphone (which I didn’t hear ring), then The Berry Patch. He called to see which sang “Coat of Many Colors” better, Dolly or Shania?

Not realizing the importance of the matter, I went with the obvious, Dolly! No disrespect to Shania, but Dolly wrote this song & was the first to sing it. She does it best because she is telling a story about her life, you can feel it when she sings. Not only did Jack disagree with my opinion & the opinion of his caregiver, Sherry, but he was getting upset that we didn’t agree with him about Shania being the best. We both relented & finally said Shania was the greatest…didn’t want to go down the explosive road again, & that was a very real possibility. I could tell in his voice he was becoming heated. Later on in the day, all I could do was laugh about it. I mean I’m probably the only person in the world that’s ever been hunted down to be asked who sang “Coat of Many Colors” best! Our situation is definitely unique if nothing else. Jack is passionate about whatever he’s into at the moment & we best remember that the right answer is whatever Jack says it is.

I have mentioned this in a previous blog, but I have a coat of many colors. Years ago, a friend gave my Daddy’s Mama, my Grandma a sack full of silk tie scraps she got from a mill she worked in. Grandma was an avid maker of quilts, often using material from clothing family members outgrew or scraps from something she was making. It’s always neat to look back at the quilts she made for us & remember wearing some of the prints that are on the quilt. With the sack of silk tie scraps, Grandma constructed many quilts, bags, vests, & even a coat of many colors for myself. Of course it’s too small now, it truly is a beautifully handcrafted jacket. Not only was my Grandma an excellent seamstress, but so is my Mama. One would think I would of been blessed with that talent, however, I never had any urges to learn to sew. It’s the most boring thing in the world to me, well other than 60 Minutes.

Jack has continued to do excellent over the last few weeks behaviorally. The excitement of killing his first deer has worn off. He has not had any urges to go anywhere or do much of anything. Poor thing is not eating hardly at all. He’s off the bacon & egg sandwich kick & off the Funyuns & grits. We’ve gone so far as to buy his favorite foods, Chiba, Dixie Burger fish plates, Lee even cooked Jack’s deer & made hamburgers with it. Jack was really excited about that but didn’t eat any of them. He looks weak & sickly these days. It’s so heartbreaking to watch, he seems to be withering away. His spirits are good though. You never know what you’re going to open his door to in the mornings. We close his door at night so that he won’t hear us too bad while we’re moving around with Ava & Lee getting in the mornings. All too often, I read of a Dravet child/adult passing away on the Dravet Facebook support groups typically due to a severe seizure or SUDEP. SUDEP is sudden unexplained death in epilepsy. SUDEP takes more lives than SIDS (what new moms worry about with their newborns). It’s thought to occur due to a heart rhythm issue. There’s too much to worry about with Jack’s diagnosis. So many factors. Seizures, behavior (main concern), eating issues, gait problems, digestive problems, chronic infections, heart problems-too many to list.

As write this, I realize how fortunate we are to be having the argument with Jack about whether or not Shania is better than Dolly. Any day, that privilege can be taken away. When asked next time what my preference is, I will be sure to say “Shania” & y’all better to if asked! I still can’t get over him not liking Dolly. I thought all men loved blonde hair & big boobs!!!

If you’ve never heard Dolly & Shania sing the mentioned song, click this link to listen. Be sure to cast your vote, but make sure you vote for Dolly! https://youtu.be/Y0CL5Ejqg8c

Too many of my blogs circle back around to songs, movies, & mainly the tv show Seinfeld (I swear Larry David & I are related), this time, I’m going for a movie title. I would like to thank Mr. Burt Reynolds for the title inspiration. If you are a younger person, it’s highly likely you don’t know Burt Reynolds. Burt was the star in the first version of the movie The Longest Yard, some of you only know the Adam Sandler star of this movie, although Burt was in the Adam Sandler one. Man, Burt was a good looking thang in his younger days & the first movie was the best! My favorite memory of the now deceased Burt Reynolds was of him guest starring on The Golden Girls. Burt showed up at the house to pick Sophia up for lunch & Blanche, Dorothy, & Rose were in awe. He asked Sophia which one was the slut & they all raised their hands & said “I am”. Last year at this time, we were having a time with Jack, which is not to say we still aren’t, certain things have eased up some. He was locking himself in his room all day & night, wasn’t sleeping, with many nights he was awaiting a visit from some stranger he met online. Our lives are still upside down a lot of times, but were completely topsy turvy last year. Since Jack was around 7, he has looked forward to hunting season. However, last year he was extremely active in live chatrooms where he was talking with strangers & they could see him & his room. Lee killed a very nice deer years ago & had it mounted. Jack wanted the deer in his room ever since he saw it. The mounted deer hung in Jack’s room for the longest time, until last year when one of the people he was communicating with told him to take it down, that it was wrong to kill deer. Now whether you believe it in or not, is neither here nor there. The point is, Jack is so impressionable, he was persuaded to take the deer down & had zero interest in hunting whatsoever last year. Lee was so upset about those people making such an impression on Jack, that I think he may of thrown the deer away. I remember very clearly this same time last year receiving a call from Jack about Lee’s mounted deer. He wanted it out of his room & wanted it out right then. I also remember calling a friend telling her that Jack was going to have to be placed in a facility. I couldn’t deal with this torture any more. It was hell on me staying up with Jack all night long then trying to work & be a wife, Mama, daughter, & friend, not to mention the hell it was on Lee, Coleman, & Ava, plus we were scared of all his online activity. We honestly never knew what we were going to be faced with from day to day.

After all the torturous events that occurred between last year & present date, Jack has gotten back into hunting. There have been many events, most unpleasant & occurring multiple times a day. Out of the blue this summer, Jack began talking about deer hunting. We kind of poo-pooed it thinking he would forget or lose interest, but no, the hobby prevailed! As fall got closer, Lee began baiting the deer, cleared out the hunters den, even took Jack target practicing. Now you must be thinking the same thing we both are, Jack with a gun, how dumb are we? Apparently, pretty dumb, but it’s all done in order to meet a need to get Jack off electronics. Lee is so smart & cautious about everything (except trying to locate the ketchup in the refrigerator, why can’t men find anything in there?). Last Saturday was Jack’s day. He anticipated going hunting all day, even dressed for the occasion hours prior to going. Lee agreed to take him late that afternoon. A male hunter can always tell a story much better (maybe a little bit exaggerated, too), but I’m going to give it my best shot.

It was hot that day, close to 90 which was a concern since Jack’s body temperature isn’t regulated like ours, heat can cause seizures. Also, there was quite a bit of walking involved & that can also cause seizures because it is physically exerting to his fragile body. Poor thing dressed in sweat pants, his Daddy’s shiny, hot letter jacket from junior high school (1980 something), & his red Power Ranger vinyl boots. Let me stop here & share the story about these boots. Last Christmas Jack wanted these boots, Mama gifted Jack with these boots. They smelled/smell like straight-up poop! We all died from the smell as he paraded the shiny boots all around our house. His room smelled like a horse barn & my whole house smelled like you were getting close to the horse barn! After a few weeks of pleading with Jack, I finally convinced him to let me put them on the porch to air out. Typically, if a pair of shoes gets left on our porch, some random dog comes along & takes one. I was so hoping Spot would come by & grab one, I guess they stunk so bad the dogs wouldn’t even touch it. His boots aired out for several months…they still reek just like they did on Christmas Day. The smell is as strong now as it was then nearly a year later.

Back to the deer. Dressed for winter in October which was actually like a summer day, Lee & Jack trek through the woods on their quest to kill a deer. After getting settled, in their nest, deer were on the move rather quickly, which is wonderful considering the circumstances. You’ve got a child with a huge tendency to overheat, thus have seizures, a long walk to their hunting site which can bring on seizures, & the excitement factor that can bring on seizures, so the fact that the kill happened so fast was a blessing. Lee doesn’t load the gun until they are situated. Once the deer move in, Jack shoots at three & misses. He asks Lee to do it for him. Lee declined & told Jack he needed to take his time & aim. See, Jack thinks he can do anything without taking the time to learn how to properly handle a task. His fine motor skills are weak & he’s very uncoordinated, so this was really a success story. After a pep talk from Daddy, Jack successfully made the shot. Although a small deer, it was Jack’s first time, Lee’s first in seeing one of his kids following in the footsteps of one his passions-hunting.

The grin on both of their faces was tremendous. Jack was so proud that he was able to shoot a deer. Lee was so excited for him. They took the deer to the processing plant to make sausage & such. Jack is wanting a deer hamburger, not sure about that one. Lee plans on cooking the deer hamburgers tonight, thank goodness I have a ball game! Since killing the deer & with target practice, Jack has had a bruise on his arm from the kickback of the rifle, but he’s proud of it. Proud like a boy is of his first blackeye in a backyard rumble. He has told the story numerous times to various people, even asked me if people around town were talking about him & his deer-has even called the Wildlife Preserve. He’s been calling them for a few weeks now nearly everyday. Jack inquires about his hunting license, tells them where he & his Daddy will be hunting, called to report his deer being shot. I’m thinking, Lord, he’s gonna get Lee arrested somehow or another. Jack keeps asking if we are proud of him. Reports to me daily on how many yards it was from the rifle to the deer, 48 yards he says-hence the title of this blog. 48 yards may not be very long to you, but to a special needs person, it is the longest yard ever. This memory will last forever for Lee & Jack. The worry, the sweat, & even tears made this picture worth it all.

As a stay at home Mama, my days with the kids were full of visiting folks, playing outdoors when it wasn’t too hot or cold for Jack’s condition, countless doctors visits for Jack & others in the family, running errands for The Berry Patch, playing, learning, & afternoon naps. One of my favorite things to do when the kids were smaller was to pile up on my bed & watch tv. Our most favorite cartoons were Max & Ruby & Little Bear. These two shows were soothing, not wild, & just plain sweet. The kids would be freshly bathed, in their little pj’s, & smelled so good. It was a calming, relaxing time from our sometimes busy days-very much needed for all of us. As the kids got older, their needs & wants changed, nighttime was consumed by homework for Coleman, an every night multiple seizure ritual for Jack (I’m talking 100’s every single night), & with the energy of our toddler Ava, the nightly routine of cartoons faded.

Two Saturday nights ago, Jack did something really unusual, he hopped on my bed & wanted to watch tv. We talked about how we used to do this when he & his siblings were little & how one of his favorite shows was Max & Ruby. To the thanks of “on-demand” service, we pulled up the sweet little bunnies & enjoyed 30 minutes of absolute calmness. Its been a while since we’ve seen this show, my biggest surprise outside of Jack wanting to watch it, was that Max talks in complete sentences & they have a Daddy. For years, we wondered where Max & Ruby’s parents were, but we both determined we liked the old version better. Unfortunately, calmness quickly went to calamity shortly after the exit of Max & Ruby. Jack wanted to watch I Dream of Jeanie next, which was great, I love that show. He called my Mama & was talking to her while we watched. I laughed at something they were talking about & that’s when the moment was ruined. Jack grabbed my face, shook it as hard as he could & told me to stop laughing. It’s in those sort of situations with Jack that I realize how a victim must feel when being attacked. So that the situation would not get explosive, I shook my head yes to his demand which was to stop laughing, I couldn’t talk because he had grabbed my jaws & was squeezing them. After releasing my jaws, he apologized & of course had an excuse. The excuse was he doesn’t like to hear a girl laughing. That’s what my whole life was built on-laughter! It wasn’t about the laughing though, he is always looking for an excuse, a way out of things. His mind is always churning-churning quicker than Land O’Lakes makes butter. Even when he sleeps, his mind is spinning, talking in his sleep predominately during his whole slumber. So my Saturday night that started out so nicely was ruined in the blink of an eye over what I consider the best form of therapy-laughter. The picture below was taken just before Jack’s attitude changed.

When this type of behavior occurs, it crushes me, drowns my spirit, takes me to a dark, unhappy place that is hard to rise from, but the show must go on. I have to maintain my composure so that things won’t escalate when the very thing I wanted to do was grab his face like he did mine. I have to try to make like every thing is okay afterwards when all I want to do is curl up in a ball & scream to the top of my lungs. I have to be okay because I have a family & a business to tend to. Lee & I say at least a few times a week, that we can’t make up what occurs in our lives. Just the other day, Jack asked me to take him Pokémon hunting. This was right after he woke up around 10:30am. I don’t dare move in our house until he wakes because he can sense me. I told him no. Of course that wasn’t suitable to Jack. He kept demanding. Since my day had just gotten started, I was still in my nightgown, no bra, hair unbrushed, nothing done to myself, Jack was still in only a tshirt & his underwear. He had to go right then & there since there was some sort of time limit on how long a certain character was going to be at the post office for his game. I prayed that no one would come up to my car. Thankfully they didn’t! I had a yellow slip in my car indicting I had a package to pickup, Jack was actually going to go inside in his less-than attire to retrieve the package. I told him it was an old slip, he bought that thank goodness.

I had an odd occurrence Friday evening (shocker, right?). Ava had a volleyball game in Timbuktu, it was literally in the middle of nowhere, two hours from home. We were surrounded by nothing but churches & railroad tracks, rarely seeing a house. I’m thinking where in the world do these people live? We drove for miles & saw ten churches per one house. The sky was black as soot except when it was lightning, might I add, it was lightning like crazy.. It was actually one of the more frightening electrical storms I’ve ever seen. Normally at that time of night, I would be home during a storm like this, candles burning because the power would already be out, calling all the neighbors & family members inquiring about their power, & frustrated because I can’t watch QVC. I wish that were the case! As we watched the night sky light up, we were complaining about having to drive two hours away for this game, but it quickly became like a scene from the movie Deliverance. On the way home, I drove, Ava & Mama were my passengers. Suddenly, the biggest bolt of lightning I’ve ever seen in my life shot down to the ground. Terrified, we all screamed & I immediately started crying & my arms felt funny. I am not a crier unless Jack has given me a fit. The cry had something to with that lightning, it was totally spontaneous & I know I got a little electrocuted. My arms felt like there was energy coursing through my veins, I wasn’t in any pain, I just felt plum out-of-sorts. It was really starting to feel like Deliverance at that point because we also felt like we were lost. Nothing was around us at all. Ava was hysterical, she thought I was going to die, Mama’s nerves were tore up because she thought we were lost & she can NOT tolerate that, & I’ve been electrocuted! That ol’ crazy woman Siri kept telling me to proceed to the route. Do you ever say back to her, “that’s what I’m doing”! I do that…A LOT. We couldn’t get home fast enough! That whole night, I didn’t sleep. My arms & legs felt funny & I dreamt crazy stuff. The next morning I was okay, no harm done…hopefully. Who wants to take a trip with us, it’s always an adventure!

Jack is still on eating a bacon & egg sandwich every.single.night. The amount of bacon he’s going through is not healthy. I know it’s not especially for Lee, Ava, & myself, Jack doesn’t eat a whole lot, so he’s probably fine. Bacon is perhaps the most irresistible food to a non-vegetarian in the world. Do you know how hard it is to resist a fresh pan of cooked bacon in which we have available at all times now-it can NOT be done! Our triglycerides are going to be through the roof! We are like the little dog on the commercial where he is begging for bacon strips.

Last night my heart melted just a little. While the picture below may not look like anything but ordinary, it is actually extraordinary. Jack was interacting in the kitchen which we all know is the family central hub like a normal teen. He actually poured himself a glass of Pepsi, was chatting with Ava & I, & not doing anything foolish. It was so nice! I’ve never really been able to have the pleasure of witnessing this much. To you, it’s probably nothing to have your kids in the kitchen hanging out, to me it was everything!

Unfortunately, my quick trip south was not a beautiful walk on the beach or a flight to Key West, it was more like a walk on the rough side of town. As I try to get over the constant & perpetual bumps in the road, I am reminded of the saying, “this to shall pass”. Knowing that the worst of days won’t last forever & the days & nights may both be long, there’s always a chance for a better day tomorrow-I hope & pray!

We’ve all daydreamed about winning the lottery, I do all the time. My lottery dreams are much different than yours. Yours would probably consist of selling your current home & moving to paradise, buying a sports car, motorcycles, a personal chef, Louis Vuitton bags, & who knows what else! I’m so out of touch with these type of dreams, I’m having a hard time coming up with frivolous ways to spend money! I am speaking this into the universe so that it will come true…when I win a million bucks, my dreams will be very different from yours. Will money solve the issues we have with Jack, certainly not, but it will help. Let me tell you how $1 million cool ones would be invested.

First, all of our loans would be paid off-most logical. Secondly, I would hire a bodyguard to sit at home with us 24/7. This would enable us to say “no” to Jack for his daily & multiple unreasonable requests. For example, Ava’s school called the house & Jack answered. The message was regarding school t-shirts being available for purchase now, of course Jack wanted one. He would want a t-shirt even if it said “I got a mammogram today”! He just wants stuff no matter the relevance. One of Jack’s helpers mentioned to him that her school has t-shirts for sale, Jack wants one. He went as far as calling the schoolhouse several times inquiring about the shirts. Thankfully, I knew the lady answering the phone, I text her, & she told him they were sold out. Yesterday, he called Dixie Burger (local fast food eatery) & placed an order for grits, knowing full well we have grits at home. He wouldn’t leave the house with me to get them & his caregiver couldn’t get the grits for an hour after he called them in. Dixie Burger threw them away thinking it was a no-show call-in. Once Jack learned they threw his grits away, he called them back & placed an order for a fish plate. Now given people drive from all around for the flounder at Dixie Burger, but his meal went from a $2 cup of grits to a $14 fish plate. All of this was done without ever asking permission. This is why I have to hide the Avon books when they come in. We will find something in there that he just has to have. If I had a bodyguard, I could say no & let the bodyguard wrestle with his tail & wouldn’t have to worry about him harming us. I could tell him no when he breaks his chargers on purpose, his phone on purpose, wants to trade games he purchased the day prior at GameStop for $20 to get $3 for the trade-in the next day. One of Jack’s prized possessions has always been his iPad. He’s had one since he was 8 years old because playing outdoors was too stimulating & induced seizures. At the beginning of the week, he started wanting to sell it to GameStop for money. This is a $400 iPad that is in perfect condition. I’m not sure what the hock price is there for an iPad, pretty sure it’s less than $50. His helper called GameStop & told them to tell Jack they don’t accept those. She also told Jack that maybe we could use it at our business. Sure enough, Jack calls wanting to sell it to us for $20! I wish I could pull a Miranda Lambert & strike a match to that building (don’t turn me in, this is a facetious dream-I’m not an arsonist)! This child loves money. What his plans are for the money, who knows. All of this occurred (including the Dixie Burger transactions) on the same day within two hours of him waking up. Now we’ve got this dreaded day of Friday, September 13 & a full moon, Lord help me Jesus. I am terrified of the possibilities the day & night might bring!

Thirdly, I would hire a personal bi-weekly masseuse. You can only imagine how tense Lee & I on a daily basis. Our necks stay stiff, we don’t rest well, stress is harbored in our shoulders-I could really use a massage right now! The next thing I would do is purchase a ’57 Chevrolet convertible in turquoise blue. This has been my dream car since I was a teenager. That would be my one frivolous buy. How cool would that be to own such a car, it would make my life!

Having an imaginary bodyguard would enable Lee & I to escape for a night. We have not been anywhere alone since 1999. The fears of what Jack may do keep us at home. It would be nice to run to the beach for a night or two. Our “bodyguard” would also disable the need for a constant communication need with Jack. I have to have my phone on me at all times due to his foolishness & medical condition. Last week, he called me 17 times in one day. Can you imagine someone calling you like this all the time? I have my own personal stalker. This is my life nearly everyday. Maintaining a job & a semi-normal thinking process is extremely difficult. I never know if his calls are going to be threats, demands, or a real emergency.

I can’t dream too much because $1 million bucks won’t go far with my aspirations. Believe it or not, I would stay in our hometown, wear the same clothes (Berry Patch shirts included), carry the same $20 wristlet I have now, keep using the same Dove soap I’ve always used, I might consider letting Lee buy a bigger tractor-not much would change, maybe my sanity would improve! I guess I’ll continue singing If I Had A Million Dollars by the Barenaked Ladies in hopes that someday I will. This also blog reminds me of another song I love to sing by Janis Joplin, Mercedes Benz. I’ll leave you to listen to this gem, if you’ve never heard it before, give it a go. Anytime someone says “oh Lord”, which we do a lot in the south, I break out in this song-enjoy. https://youtu.be/5ddnwyyGo4s

Most people awaken to the sound of an alarm clock set to a staticky radio station or the annoying beep of an alarm. Saturday morning, I was startled to death not by either of these, but Jack! Once Lee leaves in the mornings, he locks me inside our bedroom for safety purposes. Jack runs out of his bed at 8:15am & tries to kick the door down. I had just fallen back asleep from the noise the door makes when Lee locks it & boom, I thought someone was breaking in! After jumping out of the bed, Jack had already made it back to his bed, threw the covers over his head & went back to sleep. Was this a moment of sleep walking? Lord knows I hope that’s not something else new we have to deal with, I really feel it was his mischievous self playing a prank, he then ran back to his bed pretending to be asleep & fell back asleep in the process. Trying to kick down doors is not unusual for Jack, he often tries to be a Power Ranger whenever there is a closed door & slams his foot or body against the door-hard! Jack honestly thinks he is an actual Ninja…in some ways he is!

Not only was the above startling event just one thing that occurred on the same day, it was the first of many crazy things. I didn’t get to attend a really good friends surprise birthday party because of staffing issues at our business, this was even after I thought I had it planned out so well. Then another employee had a slight crisis & had to leave. An hour after that, someone left a small baggie of a white powdery substance at the cash register of our business. We have no clue if it was the contents of a teenagers Tide Pod, cocaine, or meth! There is some old Sicilian grandma out there that Lee or myself has double-crossed that has put a hex on our family & business I am sure of it! My famous saying & possibly one day my tattoo-“it’s always something”.

Jack monies us to pure death. I have to hide my Avon books because there would invariably be something in there he would have to have. It would be a pointless purchase, just clutter piled up in his room. Throughout the year, I have to sneak out trinkets, old papers, & such so the piles of junk won’t be so terribly bad. His bed at night is a total disaster area. It is littered with Power Ranger knick knacks, food that has been there all day, cords, Alexa, computer, mouse, stuffed animals & more. I feel like cleaning off his bed every night is like cleaning off the trinket/toy table from a rainy Saturday yard sale that wasn’t so profitable. This is a picture of all the bed clutter.

Now, he has gotten into selling on eBay. He sold some sort of Power Ranger key & of course I had to pay for the shipping because he has no money. He’s tried selling things in the past & thankfully he never sold anything until now. It is every single day that he wants something. Whether it’s $1 or more, Jack demands for things daily. Trying to explain to him that we don’t have the means to buy him junk everyday is a worthless task. Jack could break Bill Gates!

Jack had a seizure last week & it has upset his sleep pattern something awful. He was finally in a good habit of falling asleep around 11:30pm & waking around 11:00am. This was perfect! He was only a holy terror for less than 12 hours. Sleep has become an issue since the seizure, not going to bed until 2:30am & waking at 9:00am. In turn, his behavior is worse, sassiness is worse. The doctor suggested we add yet another medication to his already long list, but when I asked my fellow Dravet community, it was highly frowned upon saying it made their kids worse with behavior. Dravet is an evil illness. It shows absolutely no mercy. When Dravet rears its ugly face, it is in the form of such terrible, life-altering seizures in the first few months of life, later moving into such severe, life-changing behaviors that you completely forget the horrific start which were the seizures. We aren’t the only family in the shoes we are in. Many, many, many Dravet families experience the same issues. I’m not the only mother that has locked herself in a room because she felt threatened. We aren’t the only family that can’t vacation together because we live we an actual Dennis the Menace. We aren’t the only family that has considered residential placement for their child because it is too much for everyone. That still doesn’t bring any comfort to the situation, only continued heartbreak. In order for us to even be able to place Jack in a facility, he has to have psychological testing. I’ve had to reschedule his testing twice. Once was due to him having strep, the second reason is due to us obtaining legal guardianship over Jack, our court date fell on the same day as his scheduled test. The center that does the testing got attitude-ish when I canceled the first time, they really got testy the second. But I may have to cancel a third because he could & probably will refuse to go. Not only that, the testing can’t be done all in one day, even after I tried to explain & reason with those nuts his difficult situation, I was like, am I talking with Jack on the other end. Pure hard headedness! People suck!

Coleman publicly made the announcement last week he was accepting a position in Minnesota after spring graduation in 2020, this was after completing a summer internship there. He’s only 19 they say, how can you let him move so far away they say? I say, how can I not? The best motivator for your children is to have a Jack! If you currently have dead-beats living at your home, you are welcome to let Jack live with you for a few days, I promise that will be all it takes to get that dead-beat motivated to work & find a place of his or her own! Jack was a wonderful motivator for Coleman, we are eager to see what Ava does with her career. Although we are sad of course that we’ll be losing Coleman to Minnesota, we couldn’t be more proud. It’s wonderful to see your children blossom into successful people. We will take it any way we can get it! Meanwhile, if you need some motivation in your home, contact me!!!

Whenever I finish a blog, I always wonder how on earth will I ever be able to write another one, hasn’t nearly everything possible happened to us? From Jack’s crazy tales to my occasional weirdo run-ins, how can I continue to write anything ever again. Jack gives me plenty of inspiration that’s for sure! This particular blog is a result of Jack’s newest fascination, it is quite possible the best food ever, bacon! At The Berry Patch, we sell some of the best bacon money can buy, it’s also a little on the pricey side. Jack has gone through over $20 in bacon in merely two days! He doesn’t want it microwaved or fried in a pan, his Highness requires it to be baked in the oven. This is my fault, it’s the only way to properly cook bacon in my opinion. I’ve raised food snobs! Jack was previously on a Funyun & grits kick, now he’s moved onto egg & bacon sandwiches with extra mayo. The reason I titled this blog “Breakfast for Hitler” is because dealing with Jack is what I envision working for Hitler was like. He’s extremely bossy, it’s Jack’s way or no way, freshness is of the upmost importance, if you don’t comply to his needs, your life may be at risk.

Dravet Syndrome is a huge melting pot of different symptoms & problems, I’ve touched on a few of them in previous blogs. One biggie is nutrional difficulties & poor eating habits. Some of it is medication induced, the other is from the syndrome itself. Several medications make Jack’s appetite fade. Jack doesn’t love to eat like a lot of us do. I often am not finished with one meal while thinking about my next. What is so frustrating about his dislike for food, is not only the expense it takes to satisfy his need for food which is only a need, not a want most of the time, but the time it takes to prepare whatever it is he is wanting. Breakfast for Hitler starts around 11am after he wakes. The demands for the perfectly fried egg that has been salted & peppered correctly, baked bacon, & extra mayo all on a fresh loaf of bread no less. Most days, the sandwich lays on his bed for a full twelve hours. At 11:30pm-midnight, he starts again with wanting yet another freshly made sandwich. So in order not to be on Hitlers bad side, the whole process starts over again. By the time the sandwich is prepared, his sleeping pills have kicked in (thank goodness) & only a bite has been taken out of the sandwich. This is how I often find Jack & his sandwich most nights:

And I best not dare think of trying to save that same sandwich for the next day.

I am so surprised Jack has been craving loaf bread sandwiches. He hated loaf bread at one time, as do I. I used to eat it when I was very little but only on tomato sandwiches, I never could stomach bologna or ham sandwiches like normal people. My lunches would have to be packed with the bread separate & tomato slices separately so the bread wouldn’t get soggy. I was such a bougie kid even in kindergarten! I only took my lunch when the lunchroom served typical kid lunches like pb&j sandwiches, pizza, or chicken nuggets. That was not touching my lips! I would however indulge in succotash, chili, vegetable soup, & any type of vegetable, plus ask for my friends since none of them ate like Jethro Bodine! My aversion towards loaf bread changed when I lost my first tooth on a tomato sandwich in the cafeteria during lunch that my Mama begrudgingly packed for me-I’m sure she was cussing me in her head…”why does she have to be so difficult, there ain’t no sense in a kindergarten child making me go to this much trouble for a school lunch” is what I envision her saying. I know, because I am living it, lol. My tooth came out right on top of my tomato sandwich & I was immediately grossed out & since developed a fear of loaf bread. Now, I require artisan bread which is funny since it will literally tear your teeth out & slice up your gums all in one! I also hate loaf bread because it can taste like fabric softener sometimes (I am strange, remember this).

Being head chef of the Berry family, purchasing loaf bread isn’t normally on my grocery list, until now that is. I’m so shocked when Jack chooses to eat, he is eating this. When he was only one, just after his first birthday, Jack began the ketogenic diet as a treatment for the horrific amount of seizures he incurred every day. When I say 100’s per day, I literally mean just that. The ketogenic diet isn’t like the keto diet many are on now. Everything from lotions, to toothpaste, soap, had to be configured in because these products can have a form of sugar in them. Jack’s food had to be weighed out in grams (small grams at that), he had to eat at specific times each day, & could only drink a limited amount of fluid which was either water or diet drinks. One of Jack’s meals was 1 & 1/2 pieces of bacon, a spoonful of mayo, & like 7 green beans. This was an entire meal! We did this so frequently because the others were almost too gross. Bacon was nearly all he ate for breakfast, lunch, & dinner. Jack went straight from breast milk to this diet, which worked out perfectly since he hadn’t really been introduced to cake, ice cream & the normal toddler foods. The diet was the cure we were looking for. He was weaned off all medications that had failed him & was able to live normally for 2.5 years. That was until he woke one morning with a terribly high fever from strep & the seizures came back with a vengeance. The diet was weaned & he was able to eat our regular diets. Due to the lack of sugars & starches early in life, Jack never did like either. He became bougie like me! Jack wouldn’t touch bacon for years after that. This is why it’s so surprising to us that he’s eating it again.

Tonight we had to take Hitler to Pekin Wok a local Chinese restaurant that none of us like but Jack. Then he had to go to GameStop to buy something that he just brought in to sale to them on Sunday. He sold GameStop a game on Sunday that he owned, then went back today to buy the same game again. Totally lost money on that deal. No amount of explaining will help him understand the foolishness he is doing & the amount of money he is losing. Then he had to go to Highway 55 to get a milkshake. Keep in mind, we own an ice cream shop that has delicious homemade milkshakes, of course that wouldn’t do. The name of Jack’s game is how to spend money. Two hours later, the milkshake was still full & untouched. Before we ever made it to the restaurant tonight, Jack was already talking about eating his bacon, egg, & extra mayo sandwich!

Those that keep up with my blogs know that Jack had an altercation with me a few weeks ago. I knew that turning 18 was going to be a difficult bridge to cross for us all. The anticipation of Jack turning 18 while waiting on significant life changes to occur proved to be pretty deflating for Jack. Though he would never be able to express those feelings, I know that’s what happened. He has always heard that turning 18 means you’re an adult, you don’t have to listen to rules any more, etc. The anticipation of something great happening in Jack’s life was expressed in rage, unsettledness, & irritability. All of these emotions we had to deal with from August 2 to right up until yesterday, August 21. The look in his eyes is changing to a calmer color. Before, his eyes were the color of rage.

In closing, I’d like to thank you all again for the prayers & concern for not only Jack, but for each of us. We are so thankful for the experiences Coleman has had the opportunity to enjoy this past year. I sometimes imagine being him, because he really is living his best life. He has a beautiful apartment in Raleigh overlooking the coolest pool, has amazing opportunities in every corner, & is having fun. Ava is ready to start back school-what child wants to start back school…a child that lives in our house! She said the other day, this has been a great summer. It’s been great because of other people-our friends & family. So thank you again to all that made this child’s summer great! Don’t mind me, I’ll be in the kitchen preparing Hitlers breakfast!

The day we have dreaded since December 7, 2017 has arrived. On that evening of December 7, 2017, Jack had one of his most violent outbursts to date. It was an endless evening, night, & wee hours of the morning bouts of violence. He was taken via ambulance to our local ER, then transferred to UNC pediatric intensive care unit where he was tied to a bed for over 12 hours. We’ve done a pretty good job keeping the violence down…until today. Last Friday, August 2, Jack turned 18. Those that know us personally & keep up with my blogs know that Jack turning 18 is momental for him. This is his idea of adulthood, but how can one be an adult with violent behaviors, zero reasoning skills, severe mental illness, & catastrophic health condition. In fact, Dravet Syndrome is described as a rare, catastrophic, lifelong form of epilepsy-the foundations words, not mine. The definition of catastrophic is causing great damage or suffering, a tragedy, fatal, awful, terrible, etc… We have been through everyone of these definitions except fatal. How can you tell someone with all of these conditions that just because you are 18, it don’t mean anything for you? You can’t, it’s totally impossible. He’s like the Lil Nas & Billy Ray Cyrus song Old Town Road…can’t nobody tell me nothin’.

Getting to the day we have dreaded since the above date, Jack went to GameStop & Walmart today with his caretaker- has gone everyday since his birthday. Going to Walmart everyday for five days straight is enough to run someone crazy. For his birthday, we all got him either money, GameStop cards or Walmart cards. The only thing he is into currently is Pokémon & GameStop, buying him gifts is extremely difficult. He learned that GameStop accepts trades. This is not a good thing for Jack. Not only does Jack have a ton of health & mental conditions, he has an addiction problem with games & such & spending money. Because he does not have the capability of understanding concepts & ideas like we do, he thinks if he buys a $20 game & trades it in to GameStop for $3 or $4 he has accomplished something, when in fact, he has lost money. His caretaker pulled the store associate to the side & informed them that Jack wasn’t understanding what he was doing. They told Jack he needed a drivers license to trade, this was just a ploy to try to break the “trade-in” cycle he is now in. After they left the store, Jack grabbed hold of her wrist & squeezed it until they got to our house. She then called me, I called Lee, we were home within minutes. We were able to get him out of them car, but he still had it out for her. He walked towards her & I knew he was going to attack her. I then tried to get Jack in the house, he then turned on me. Jack started punching me in the stomach & kicking me, I flattened him on the ground & laid on top of him. Sherry & Lee saw what was going on & helped in the hold down. When Jack becomes violent, all we can do is hold him down. I now know why I weigh 200lbs., it’s to take Jack down when needed. Never going to complain again about my weight, it could be saving my life, but will probably kill me one day, too. He doesn’t weight but 115lbs., but he’s strong as a freaking ox & will do some serious damage to a body. But even after holding him down after only 10 minutes it becomes so exhausting & fatiguing to our 40 something year old bodies. Thankfully, the attack was outside & only lasted around five minutes. The pebbles in the driveway were digging into his arms, legs, & head. Had he been inside, the fight would of probably lasted a long time. If inside, the spell is harder to break than the spell cast on the town in the movie Hocus Pocus.

I now also know why I’ve been having such vivid, tragic dreams so frequently now, my dreams were a warning of what was to come. There are a few things to be thankful for with today’s events. 1. Jack’s caregiver didn’t have an altercation with him while driving. 2. His caregiver was able to call me. 3. Lee & myself were able to get home before he started fighting. 4. Thankful for neighbors who arrive within minutes for backup should we need it. How embarrassing it is to call upon friends over something like this! We hate it, but it is necessary. These things I am so grateful for. But I’m also ticked that this is something that we have to deal with. It ruins your day, your week, your month. Makes you scared to live in your own home. Makes you walk on eggshells. Ruins any plans that you were considering or plans made. I was planning on cooking a good supper tonight. That was thrown out the window because I became too depressed to cook. Now I’m stuck at 8:30pm riding to town to find some sort of mess to fill my grumbling stomach which I hate with a passion. I’m a meat & two veggies kind of gal. I hate to leave Lee home alone with a ticking time bomb. Winter of 2018, we finally stopped carrying around mace since Jack was doing so well, however, since turning 18 has resulted in side effects similar to some of the most powerful, harmful medications known to man, the mace is back. We will all have to have it now until this storm settles, but will it I ask myself? Will the age of 18 continue to make Jack anxious, make him a crazed maniac? The altercations never get easier, the emotions are the same each time-spent, depression, nervousness, & fear.

I never fought a day in my life-well, there was that one time when a girl from Rockingham (neighboring town) was talking about how trashy people from Ellerbe (my town) were. I didn’t take that lightly, so I karate chopped her in the back of the neck, nothing more became of that. Got to stick up for your peeps! Now at the age of 43, I have to worry about my own son fighting me over foolishness. What a scary disorder to have, but even scarier on the caretakers. He makes it scary to live at home & even scarier to leave it. I ask you all that pray, to pray that Jack’s mind will calm down. Pray that he will not think about being 18 any more. Pray for our safety. I know prayers work, we’ve seen the miracles from your prayers with the problems Jack was having before by getting “catfished”. Thank you all.