Category: Seizures

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.

Most of you ladies reading this have had the pleasure of having a girls day and/or a day of pampering at a nail salon. It is no secret that most of the people that run/work in nail salons are foreign-which is great. At times, the employees can be a little difficult to understand, as am I sometimes. My hillbilly accent can be tough to decipher if you’re not from Ellerbe, NC. Ava & I enjoyed a girls day out about a month ago. I felt we both deserved it. She works hard for a 13 year old, she inherited an assumed position as an ice cream scooper inside the world’s largest strawberry-one of the kickbacks or drawbacks (depends on the day of the week you ask her) of having your parents own a business. Ava gets scheduled in like all of our other employees. During our girls day, we entered the nail spa for a posh treatment on our little piggies. Upon entering, a woman wearing a mask asks what service we wanted, I replied a pedicure for both. She then said (what I thought) “you like pedicure or chair nail”. My logic is she thinks a pedicure is just painting your toenails, a chair nail is the whole experience with the massage & all. Of course I replied, “chair nail”. She then instructed me to go pick out “gel nail”. The technician was saying gel nail all along, I was the big dummy thinking it was “chair nail”. Ava thought I was the most mortifying mother in the world at that moment, she is 13 after all! Regrettably, I went along with the “chair nail” & we still have the mess on our toes that is impossible to remove at home unless you soak your toes in pure Clorox & use a power sanding tool afterwards. The “chair nail” cost the same as a standard pedicure plus an additional $15-what a rip off. Nail salons are not for me. I’m better off trimming my hooves & painting my toenails on our deck with Walmart polish. I told Lee I needed to go back to the salon to get the gel polish taken off, he replied & was dead serious about it, “can’t you soak your toes in gasoline?” I’ll pass on that relaxing sounding soak!

Recently, I’ve had trouble sleeping. I toss & turn all night & morning, waking multiple times. I remember a time in my life when I closed my eyes, I would stay asleep for at least 8 hours. I’m not sure if it’s because I am getting older & approaching the dreaded phase women face or if it’s because of the terrible dreams I’ve been having, perhaps both. My dreams have always been bizarre even as a child, I have even had some intuitive dreams where some of them have come true. One of my most recent bizarre dreams that have awakened me involved Coleman. I dreamt Lee & I went to pick him up from his internship in Minnesota. Coleman’s hair was absolutely tremendous, think the size of your arms making a circle. In his hair were gnats & tumors growing on the outside of his head. I’m sure he is happy to hear I’m sharing such foolishness here. This was just to explain the crazy dreams that fill my head at night. I think about that dream everyday since-it was beyond disturbing. Nearly every single night for the last few months, I have had extremely real-seeming dreams about Jack. Jack drowning, Jack having a really bad seizure, Jack becoming violent. When these dreams wake me, I am awake for the rest of the night or morning most of the time. The dreams are so life-like because they could very likely be real life in an instant & it makes me wonder if these are intuitive dreams. Maybe I should help Dionne Warwick re-start her career & get her run a 900 psychic line for me!

It’s moments like “chair nail” that make me thankful for the crazy, funny moments that seem to often occur in my life. Thinking about these things through the day make me giggle & giggle I need to do. Maybe this is why God places weirdos in my path so that I can sit back & remember the oddities that I’ve encountered & have a good laugh. On any given night, I can be found lying in bed & thinking of something funny & in hysterics. Just ask Lee, he hates it when I do this because he is asleep after all. Any way, here’s to hoping I can get the “chair nail” aka gel nail off my toes next week & to sweet dreams! In the meanwhile, I’ll be continued to be worried to death by Jack with his upcoming birthday this Friday. He called & ordered his own cake from Food Lion today after he told me to order a cake from the lady that usually makes the kids birthday cakes. He’s been waking early anticipating his big 18, calling people to remind him of his birthday, planning his Chuck E Cheese trip-every parents hell. The day that we have dreaded for years is nearly here. And who out there remembers this “Jem” (pun intended) from the 80’s, https://youtu.be/UtNPFSz9-5c? Now I watched this growing up, but I just now realized how stupid it really is! Although I’m grateful Jack is watching this instead of foolery, the bad part is he plays the theme song over & over again, I’m talking a hundred times or more! This could be one of the many reasons I’m not getting much sleep, this song is stuck in my head day & night.

Thank you all for reading my blogs, for your encouragement, kind words, & prayers, they mean the world to us all.

This is the wrong title for this blog, I didn’t title it as I wanted because I knew I would get ridiculed by some for doing so & I am too hot & tired for that. Some of our customers at The Berry Patch have tested my patience this season like no other & with this heat, I could seriously pop-off! I wanted to title it “Butthead Cycle”. I reported how well Jack has been doing in my last blog, but I did say there were times of slippage. For the last few weeks, Jack has been a butthead-plain & simple. I’m sure some of you are saying how can you call your child that, the same way you call your husband, girlfriend, wife, whatever that! Yes, he’s my flesh & blood, but he can be a butthead, too often for anyone’s liking. I could go the kinder route with a term coined by my Daddy, “illbox”. I find that term too comical to describe the irritability Jack has had the last few weeks. My Daddy was the lone man in a house of three females, he’d call us all that at times & it would tickle me so. Say the work “illbox”, it’s so funny. Of course, he said it tongue & cheek, there was no ill (pun intended) intent behind it. I’ve touched on Jack possibly having bipolar disorder before, I try to remind myself when he’s in this cycle, that this is part of his disorder(s).

This time last year, Jack was on a McDonald’s kick, only ingesting Big Macs. Thank goodness that has diminished, our local McDonald’s is the slowest place around, my car is thanking Jack for that also. He’s been through a Chiba phase-the place where I’m pretty sure the guy that works the drive-thru thinks I am madly in love with him due to my frequent visits. The frozen egg roll only phase, sausage biscuit phase, now, he’s on the grits & Funyuns kick. This is absolutely all that has touched his lips over the last few weeks-when he decides to eat. His eating is so infrequent, that he usually partakes in dining on these delicatessens once a day, twice if we’re lucky.

Back to the “butthead” phase….Jack is so irritable these days. If you ask him to repeat himself he screams it (he could get that from me, just ask Lee), if you don’t understand the sign language he is using to explain something, I get fussed at, if his drinks aren’t served to his Highness, there is hell to pay! Just a few days ago, Jack wanted grits. I happily fixed him two instant packs, served them to him & he ate them. He wanted more-terrific! I used the same bowl & spoon to prepare them. Jack had dropped his spoon on the floor prior to the second serving, but I washed it off. After serving him, he complained that the spoon had been dropped on the floor. I told him I washed it, to which he replied, “I don’t care”. After giving him a new spoon, Jack wanted to lick the alleged “dirty” spoon off (the one he didn’t want to eat his grits with) because it had grits on it. What kind of sense does this make? None! Sadly, this is the sort of thing we deal with on a daily basis with Jack. There are zero, none, null reasoning skills to be had. If he had an ounce of reasoning skills, our times with him would be much more enjoyable instead of walking on eggshells most of the time.

Last week, I took Ava & a friend to a nearby water park for the day. Of course while we were there trying to enjoy the day, Jack called the police to the house! I swear if we don’t get arrested, it will be a pure miracle…but could possibly be a vacation! He had changed his Facebook profile picture & name to someone else’s. I have no clue who this person was. His caregiver told him that was not nice or legal to do, he could get arrested for impersonating someone. While she was washing dishes, Jack called 911. It wasn’t until they knocked on the door did she realize what Jack had done. He called the police to fix his Facebook & perhaps confess on himself. Thankfully, the officer that came to the house was very understanding about the ordeal. It is so “Berry” hard to enjoy any time away from our home. Whether it may be at work, Walmart, a quick day trip, wherever, what Jack may do is a constant worry & struggle. Not only the police ordeal, I found out the day after we went to the water park that two people had been there the day after us & died from a brain eating amoeba they contracted from the very same water we were swimming in. Omg!

It takes me a good while to construct a blog because of work, my sad attempts at trying to have a social life which is only playing softball, mothering, & a little thing called sleep. Most of the time I get in a paragraph while Pokémon hunting with Jack. This particular blog has been in the works for over a week now. Today, we had an event with Jack as his caregiver was coming on her shift. He got upset with her because she was trying to teach him a lesson about jumping on my back, the potential to become violent was there because she got onto him for acting like a child. After I left for work, Jack started calling my Mama saying that his caregiver was sick, which was a total lie. Jack just didn’t want to be around her. This threw a ringer in my day. My intentions were to work at The Berry Patch & prepare for the busyness of the weekend. I had to come home to intervene what he was cooking up. Not because his caregiver couldn’t handle it, but to ease my nerves which get tore slam up when Jack gets like this. I will do whatever it takes to prevent him from fighting ever again. He is like the Incredible Hulk on steroids when he is violent. Instead of working, I spent the afternoon hunting for Pokémon’s in the next town over & at GameStop. I was trying to diffuse the situation with his caregiver & keep his mind preoccupied on other things. While parked on the side of the road in a parking spot, my Yukon was side-swiped by another Yukon. Luckily, it only hit my side mirror & no damage was caused. How could I get that lucky, I never am. After being out for several hours, we returned home & all seems to be okay…for now.

While we were parked, we were listening to Sirius XM the Garth Brooks channel & Garth was talking about the time he got a spanking from his Daddy for drawing a face on Johnny Hortons album. They then played Johnny’s song, “North to Alaska” which Jack knew every word. I find him so amazing, complex, difficult, funny, hard-headed, & at times very caring. What an anomaly he is!

Is all of this buttheadedness a result of an upcoming seizure, a bipolar cycle, or perhaps because he will be turning 18 in a few days? Only time will tell. The age Jack is turning is of upmost concern for us. This is the age he has waited the last few years for like most teens. 18 means you are officially deemed an adult. In Jack’s case, we are going to have to file for legal guardianship so that we can still have a say in the decisions he tries to make. The day he turns 18, I will be at the courthouse turning the paperwork in that states Jack is not capable of making decisions on his own behalf. Why can’t we just have a cake & ice cream like everyone else!

On the lighter side, I told Jack I was going to open a restaurant called Just Grits & make him work there. His response was, “but I don’t know how to cook grits”. He was dead serious, such a cute thing to say though. For now, I am thanking the Lord for instant grits because traditional grits are a pure pain to make & cleanup & for Jack falling out of the Chiba drive-thru phase so the guy working the drive-thru doesn’t think I’m a crazed, fried rice stalker. Funyuns & grits, I can do!

Jack has had the same pair of shoes for the last three years. Why is this significant? Because most of us have multiple pairs of shoes, I myself have upwards of 40 pairs (shhh, don’t tell my husband). Jack only has one pair of shoes. Let that sink in. We are a nation of want. We have too much, want for too much. But owning just one pair of shoes, that’s hard for many of us to comprehend. I love shoes, most women do. I love different shoes from cheap flip flops, to Vans, to Frye boots (which I have yet to purchase). Shoes allow me to add something different to my outfit inexpensively. And if I can’t find something to wear when I’m out shopping because I’m not in shape enough for an outfit, a pair of shoes is a sure thing. I buy shoes anywhere from Dollar General, to the south’s best shop for southern women, Belk, to even hospital gift shops. The fact that Jack has only one pair of shoes is sort of heartbreaking. If he were a typical teenage fella, he’d probably have at least 7 pairs of shoes. There would be church shoes, flip flops, Crocs, tennis shoes, boots, etc. Given the fact that Jack doesn’t get out a whole lot, his foot problems, & the specifications he needs, only one pair is needed. The shoes must be without ties, although he wants lace-up shoes, he can’t physically deal with that & trying to get a lace-up shoe on him is like trying to hogtie an animal. He won’t help at all. He’s too busy trying to get up while you’re trying to get him in shoes. He doesn’t like Velcro shoes, nor can he function in flip flops or Crocs. He walks out of them and/or trips constantly while wearing them.

Back three years ago when I bought his only pair of shoes, Jack was way more mobile than he is now. I purchased his shoes for a specific purpose, to provide support for his unbalanced gait, his ankles that are rolling in, & his really high arches. I purchased Vionic Shoes for his foot issues. All of the problems I listed above are a direct result of Dravet Syndrome. Dravet is not just about seizures & behavior as I have blogged about in the past, it involves the total body from head to literally toe. I know what you’re thinking, his foot hasn’t grown in three years? No, it hasn’t. He wears a size 9 shoe & has the narrowest little foot ever. I call it a fish fillet foot, he got that from my Mama!

Amazingly, Jack has been doing really great with seizure control (knock on wood) & the worrisome behavior issues that were once terrorizing our family has subsided (again, knock on wood). It’s time for a new pair of shoes & this makes me happy as can be. His shoes finally look like they have been worn! His Vionic shoes have served their purpose. They provided the support he needed for three years. It took three years for him wear out a pair of shoes! There were times last year, when Jack wouldn’t get out of the house for months. A pair of shoes wouldn’t touch his feet for 60+ days. That was such a dark period in our lives. I am still taunted by those days. Every time I go to the bathroom, I make sure the door is locked, even when he is asleep. The violence & torturous behavior that we had to deal with is still in the back of my mind. Once you’ve been victimized, you never get over it. Noises that were once not a thought are now alarming. Sudden movements from the person that had the behavior issues put you on defense. Now, I have friends telling me they saw Jack at Walmart the other day & how he talked to them & was being so well behaved. This is such a joy to our hearts. To go from absolute misery to joyfulness is amazing. I can’t say there aren’t moments of bad behavior or slippage with inappropriate sites online, but I can say we fill lighter mentally & physically. Jack goes to his caregivers house several days a week & engages with her grandkids. He goes to Ellerbe’s finest mall, the DG & FD. He’s everywhere nowadays! What a blessing we have received with better behavior, sleep, & overall happiness. Now, Jack needs a new pair of shoes, thank you, Lord! Vionic, you have a repeat customer!

P.S.

This blog post reminds me of the Christmas song, The Christmas Shoes. 😌🌲👞