The Never Ending Story

They say one of the happiest places on earth is at Disney, right? I will have to agree it is very happy, & lots of fun. I enjoy it so much. So a few months ago, I began planning a trip to Disney World for Ava, Zoey (a friend of Ava’s), Judy (a family friend), & myself. We left for a four night/five day stay…quietly. Quietly because taking Jack was not an option. Lee nor Coleman were able to go, someone had to stay behind with Jack, Coleman couldn’t miss school. Lee & I both felt it only fair to Ava to allow her some fun, plus we haven’t vacationed anywhere in years, it was deserved for her if nothing else. It is really sad though that we couldn’t all be together. Planning for a vacation can be difficult. Planning for a vacation while hiding what you’re doing is downright complicated. Jack didn’t know our whereabouts & can never know our whereabouts during that time. There would be a huge price to pay! The first night I was gone, I told him I was at Ava’s volleyball tournament. He was sounding like he wasn’t buying my story, this was the story I was planning on going with the whole time. Jack being the suspicious natured person he is, didn’t seem to buy into it. I had to makeup another fib & told him the next day that Coleman was sick & I had to go see about him. I hate lying, especially about someone being sick-really hoping that one doesn’t come back to bite me in the tail. The calls, the voicemails, the calls, texts, all day, all night Jack pursued me demanding to know when I would return-did I mention the calls? He is persistent to say the least.

Our journey to Disney World began last Sunday. Ava & I have been several times before, since it was time to do something fun a Florida trip it was. If you keep up with my blogs, you’ll know flying is not for me. The first time I ever flew was from Minnesota to North Carolina this past summer. No traffic is great, flying not so much. I prefer to travel spinning in on two wheels at a speed of 75 mph where I’m in control (mostly). The reason we flew was in the event something happened with Jack, I could get home quicker (ha, so not true after airport waiting). Most people can plan, go, & do without preparing for an actual emergency. I would loved to of traveled via my newly refurbished Yukon stopping at interstate Cracker Barrel’s for a bowl of turnip greens, hashbrown casserole, & chicken & dumplings & fueling up at the fancy gas stations & running in for a Pepsi, a pack of Nabs, & bag of sunflower seeds. But no, we traveled in an airbus which I am still mystified by. It’s so amazing that an object the size of several Greyhound buses can fly at speeds of 500 mph carrying 200 plus people & their luggage. This appears to an ordinary person like myself an impossible task. We flew out of Charlotte to get to Orlando. I’ve heard enough horror stories from my favorite podcast, Bob & Sheri (they are Charlotte based) to know what can go wrong when flying. I’ve heard Sheri reference how TSA always screams at her or searches her. Bob is always worried about the plane crashing (same as myself). The Minnesota airport back this summer was wonderful. Those people know how to do. Charlotte however, do not know how to do-well they might, it’s just not done in a nice manner. Everyone told me how they hate flying out of Charlotte, I now know why. Flying is so confusing for newbies. There should be charts posted on the walls like teachers have in elementary classrooms on exactly what to do upon arrival. Going through TSA at Charlotte was terrible. I am thankful for such a high level of security, but not for the attitude. Realizing the volume of people seen daily by TSA & the craziness they encounter, is certainly appreciated, I just did not like the attitudes of those agents there. If they want to be so hateful, they need to go work at a fast food restaurant where hatefulness is expected (sometimes). Judy & I were pulled to the side for further screening due to me having money in my back pocket & she had sequins on her shirt. I didn’t want to send my cash down the belt without me, so I stuffed it in my back pocket. TSA pulls me to the side, treats me like a criminal, giving me the full pat down, testing my hands & money for drug residue. I kept thinking,”Lord Jesus, there’s no telling where this money has been. Please don’t let it of been in the hands of a drug lord”! Finally, Judy & I were in the clear, but all I could think about was the hatefulness of that TSA employee. We finally made it out of hell & our journey to the happiest place on earth would soon begin.

Since we had two first-timers with us experiencing Disney, Ava & I wanted to make sure they received the “full Disney experience” as we called it, leaving nothing out! We visited Hollywood Studios, Epcot, & Magic Kingdom. Normally, we go around Veteran’s Day which is the least busy time to attend the parks FYI, I couldn’t make a Veteran’s Day trip work this time. Boy, I will never make that mistake again. There were people everywhere, I’ve never seen it that crowded. Someone told Ava (because she snap chatted her journey as most teens do), all we did was wait in line & eat. His observation was spot-on! In previous years, we could walk up on most rides & hop right on. This time, all had 60 minute waits, many well over 60 a minute wait. We spent more time waiting in dungeons than the cast of Shawshank Redemption. We rode nearly every ride at the parks, ensuring that the two newbies got it all in, I nearly killed our crew with all the walking that was involved. The weather was perfect, not too hot or too cold, beautiful skies the whole time. The most dreaded ride that Disney has to offer in my opinion is the Tower of Terror. To me, it reminds me of flying, but I rode it begrudgingly. Even Judy who never rides rides, rode it all. Space Mountain, Seven Dwarfs, even Aerosmith’s Rockin’ Rollercoaster all of it. This picture describes Judy’s expressions on most rides lol.

There were some great memories made on our trip, most involved eating, laughing, & people watching.

Our vacation whizzed by & it was time to board on what I consider the real Tower of Terror! Thankfully, Judy & I learned our lesson prior to going through TSA in Orlando-no back pocket money & no sequins (we sound like strippers). While boarding there were tons of babies, we were all wondering if we would have to sit next to them & of course due to the Berry magnetism, we did! We were surround by babies all mostly crying their eyes out. One Mama out of desperation to keep her two year old happy since she couldn’t have her tray down due to landing preparation, gave her daughter a tube of NARS lipgloss to cease her tears. Immediately, the crying halted. If that would of been Ava at that age, it would of been a tube of Vaseline! As the old saying goes, money talks or in her case, money stops crying lol. I didn’t blame any of the kids for crying, most were coming back from Disney, tired, sore, tired, sore, if I weren’t so ashamed, I would be crying with them. Of course after landing, we had to wait due to the unloading dock not being available & all hell broke loose with those babies. Every single one of them started hollering & crying at the same time, the Mama in me wanted to pinch them all. The whole flying ordeal is very challenging for new people. We were all so worried we would pack something we were not supposed to, not know where to go to first, there is just so much going on at an airport. Too much! As we were leaving the airport, we got on the wrong bus to take us to the right long term parking lot where my car sat, we had to ride back to airport & get on the right bus. The bus driver asked us where were we parked, I said lot “W”. This trip would not of been complete unless it ended in full-on “Amy fashion”, the fella dropped us off at “VV”. That is “V” “V” as in Victor, Victor not “W”. It wasn’t until he pulled off that we noticed it, lucky for us, “W” is not too far from “VV”. That bus driver needs to relearn his alphabet (but they do sort of favor).

During our whole trip, poor ole Jack worried me to death, calling me all the time, asking Lee when I would return. Lee, Jack’s helpers, & Mama were a huge help trying to keep his mind preoccupied from wondering when I would be home. He was relentless & actually told me he missed me which was super sweet & heartbreaking at the same time because Jack never shows emotion like that. Coming home was a whirlwind, I had so much to do, mainly with Jack, household stuff, & I was so tired (still am), I can’t get my brain right at all. That trip took a toll on me, mentally. I guess I was so worried Jack might find out, worried about him getting out of routine (which he has), & worried about flying, plus, trying to coordinate everything & make sure we did it all, that my mind was overtaxed. The night of our homecoming, Jack couldn’t get enough of me. The next day, it was business as usual, that night however, Jack wanted to see Frozen 2. I enjoy taking Jack to the movies & he always does really well there. The movie premiere happened to be on Friday night, the night we went. I made a mistake in going there opening weekend. The whole lobby theatre was a frenzy of Frozen baby fans, toddler fans, children fans. There was an animal balloon making station & Anna & Elsa, the two princesses from the movie dressed in costume for photos. It was chaos but only because Jack doesn’t do chaos well with his seizure disorder. The 6:30 movie the one we tried to go to was sold out, 7:00 sold out, 7:30 had three seats left, so we got those even though they were not seated next to each other. Jack wanted to be a part of it all while we waited for 7:30 to roll around, but after spending a few dollars at the movie’s arcade, I was able to talk him into leaving only by agreeing to buy him a movie from Redbox. The movie was The Banana Splits. The Banana Splits used to be on when I was young, so I thought it was appropriate. Not! Jack started watching it after we got home that night-it’s a horror movie with killing & such. I tried to sabotage the DVD by scratching it with scissors & wouldn’t you know it, it didn’t work. Any other time a DVD in mint condition handled with the upmost care skips without any known cause & no amount of buffing fixes it. After we made it back to the theatre for the movie, I could not find our tickets anywhere. My purse is literally the size of my hand & I knew I put them in there-I tore that thing up, tickets were nowhere to be found. I explained to the manger my dilemma & she graciously offered to escort us inside & instructed us to move if someone says we are in their seats since I didn’t know where our seats were assigned. Nervously munching on my popcorn, I waited for someone to come & claim their seats. Before they could do that, the “movie” started, it was a strange start. There was a blonde woman that was a human-not the animated characters we were familiar with in the first Frozen movie. I wondered if the movie was starting out with humans & then morphing into animated characters??? The movie that was playing was we obviously realized, was not Frozen& it quickly turned south. The woman wore a skimpy dress, she took off her shoes, the focus was on her legs, her foot travels up a mans leg, she begins talking about inappropriate things, it was headed in the risqué direction. Families are flocking out of the movie & Jack, our 18 year old mentally & physically disabled child is entranced by what he’s watching. He has forgotten all about Anna & Elsa, he’s digging this flick. After much begging, Jack gets up & the staff soon corrects their mistake. Settled in & enjoying the correct movie, 30 minutes later here comes the owners of our seats. It’s a mama, daddy, a toddler, & her baby sister. These people were so annoying. Now you know somebody is plum annoying if they come busting up in a movie 30 minutes late. I mean you’ve already missed part of the plot. Their children cried, climbed, screamed, mama & daddy carried them out about 6 times. People don’t have good sense. Any way, after the movie ended, as I was getting my keys out of my tiny baby purse, what did I find? Our tickets! I thought our vacation at Disney ended Thursday, but Jack made it full circle with the Frozen gals on Friday. The funniest part of all of this “never ending story” is while I was talking with the manager about our lost tickets, Jack was off taking selfies with Anna & Elsa on his phone!

I have wondered if all the craziness I’ve encountered since being home is my punishment for going on vacation? I honestly felt terrible for going leaving Lee behind, Coleman unable to go, & of course not taking Jack. The last time we all went to Disney a few years ago, it didn’t end well. The whole vacation got him out of sorts. All the walking & not being able to ride everything due to his epilepsy was hard. He refused to ride in a wheelchair & thought he could ride it all. Plus, he likes to sleep late so it was hard to get an early start to fit it all in without having him out so late. Just too many factors to have an enjoyable vacation. On our last day of our last family vacation back in 2015, Lee was left with a sleeping Jack while the rest of us went to have breakfast. Lee’s goal was to wake Jack so we could get on the road. Ava ran back to the room because she forgot something & found Jack attacking Lee. After things calmed, we loaded up & headed home. The whole ride back was miserable. He rolled around in our Yukon, stuck his feet up on the ceiling of the SUV, didn’t talk the whole time, pretend slept all because he was pouting over what happened between he & Lee & he didn’t know how to act afterwards. I was scared to death for well over 9 hours. I was never so thankful to be home & out of that vehicle in my life. So now y’all know why taking Jack anywhere is almost always a no. It’s too risky.

My blogs aren’t usually this long, hence the name never ending story. I was telling my aunt Dot about our tales, she said, “it’s just like a Seinfeld episode”. I swear there is some Larry David lineage somewhere down the line. I don’t think there will be another vacation for a long while, I don’t know that Jack could handle my absence again. It’s so odd to me that he can be so explosive with me & down right ugly a lot of the time, but miss me so much. The brain is one complex organ. Before walking into our house, I was sure to hide every single trace of Disney World. There were no receipts, souvenirs, bags, no Disney bands, nothing. I enjoyed our time so much at the happiest place on earth, but you if see Jack around town, do not ask me about Disney, I pray he never finds out!

We are in the throes of a collard frenzy at The Berry Patch with people preparing for Thanksgiving. We sell them by the bunch or precut & triple washed. One of the reasons my brain has been blowing up, are the collards. I’ve got people messaging me day & night wanting collards, but it’s a good thing. I even have a collard notebook lol. Collards at Thanksgiving & at New Years are like Dixie Lee peas in the summer. Everyone in the world wants them, we always say in the summer at the Berry Patch you’d think Dixie Lee peas are the only thing left to eat on earth, we say that about collards in the fall, we love it though. If not, we wouldn’t do it. So if you’re needing collards for Thanksgiving, come see us. Thank you all for reading my never ending story, I’m sure there is more to come. If anyone has any ideas on how to deflect craziness, please pass the ideas along to me! Happy Thanksgiving to each of you & remember, come see us for the freshest collards around. You can even message me in the middle of night, I won’t mind!

The destruction & deterioration of things

Have you ever thought why do things need to come apart or why do things come off an object that should stay on all the time & my favorite, why do they try to improve things that are already perfected? I have a long list of things that drive me crazy & I bet you do also if you really think about it. What spurred this topic is an ongoing incident I have with my Yukon. I have said for years that women need to be the designers of vehicles, particularly ones that are driven as “Mom Taxis” & for women that are considered a “Girl Friday” like I am for our business. Vehicles need to be equipped with shelves & drawers & built in trash cans. The console I have in my Yukon is not big enough for my bottle of ibuprofen, papaya pills (natural antacid), paper, mail (that’s what the corner under my windshield is for), steroid cream, a tennis ball for my sciatica nerve pain, much less a drink in the attached cup holder! One of the things GMC has done that is totally unreasonable is doing away with the slide-out pocket feature in the sunvisor that once extended to block the sun while driving. I keep saying I’m going to get a clothespin & piece of cardboard to use since these vehicles no longer offer this important feature-going to solve my problem “MacGuyver” style! Getting back to the reason for this blog. My Yukon has third row seating that lies down & the middle row does as well. I often have to lay the seats down due to hauling either farm equipment or Berry Patch stuff. The lever that I use to perform this operation has a little black protective piece on the handle so you can grasp it without it slicing into your fingers. Guess what? That little black piece comes off every time you look at it! There are four of these in my SUV, they get lost all the time. Why wouldn’t they be made to stay on there permanently? There is no reason in the world for those little pieces the size of a piece of hard candy to come off. I’m going to have to breakout the super glue. Not only that, but over the last six weeks, my Yukon has been on its death bed. They say bad luck comes in 3’s. My transmission went out, windshield got busted, & had a dead battery, let’s not forget the lightning strike I survived in my car! Hopefully my bad luck streak is over. Not only do women need to design vehicles, we need to design parking lots. A good majority of cars on the roads these days are SUV’s, vans, or big trucks. My favorite saying when I try to squeeze the Yukon in tight quarters at a store is, “this ain’t no Fiesta”! Major adjustments in this world need to happen & women are the ones to make it happen.

One of Coleman’s favorite childhood toys was a Sit-n-Spin. It wasn’t for the dynamic spin of the toy, it was because the round piece also known as the stirring wheel came off. Coleman loved to take things apart as a toddler/child. I would be in the kitchen cooking or in the bedroom making the bed & here his little self would come along with the steering wheel in hand! Now why I would like to ask the designer of the famous toy would they make it so the top came off? For years it was made as a whole toy, now it’s two parts. It was sort of dangerous as a two piece toy, the boys always tried to stand on the plastic stick piece that held the steering wheel. I think I got sick of worrying about them doing just that that I threw it out the door one day. There were dozens of toys over the years that I wish I could think of now that came apart for unknown reasons & didn’t need to nor should they of. We have gone through more gorilla glue & super glue over the years than most. My Daddy’s favorite sayings about the kids when they were younger were “here comes the wrecking crew” & “they can tear up an anvil”. Companies made it too easy for them to tear things up, Daddy! 🤣

My next gripe is with my washing machine (long rant). Washing clothes is one of my passions. I hang nearly everything we own out on my clothesline. I am such a psycho clothesline hanger-outer that I even hangout clothes when the temperature is in the 20’s like it was this past week. All colors must be hung in like order, all shirts with shirts, shorts with shorts & so on. Hanging out clothes is peaceful & helps the earth (I’m part hippie). I’m all for environmental provisions, but the washing machines on the market now are trash. I’ve been through multiple & returned one after having it for a year-got a complete refund, too. After Lee & I got married in 1998, we got a washing machine & dryer set. We still have the same dryer since it is rarely used. As our family grew & our needs changed, we realized a new washer was a must. We went to Lowe’s & picked out the largest capacity washing machine made, it was a Whirlpool & did not have an agitator. I chose this one because Jack slept with us due to the large amount of seizures he had during the nighttime hours. It was almost every night that Jack would seize & lose bladder function. We have a king size bed & I would have to go to the laundromat so often to use their “big boy” washing machine since our comforter was so large, it made sense to buy the largest machine washing known to man because going to the laundromat was getting expensive, quickly. My “Cabrio” (name of washer) was beautiful, I was so proud. Unfortunately, it was then that I would learn about the new energy efficient products that were just placed on the market, the low fill washing machine & low flow toilets (which at that time were trash). I would wash in my sleek new machine & part of the clothes would come out dry & stains would still be in the clothes. After a year of cussing this machine, I called Lowe’s to complain about how very sorry it really was, they nicely offered a full refund. So then I bought a regular washing machine with an agitator, but it was still a low fill machine. It was just okay, still not like our first machine. This summer, it went out. Instead of repairing it, I decided to buy another one figuring the energy efficient ones had improved. This time I went with Maytag. It again was the largest on the floor, push buttons, agitator, met most of my requirements. Oh my Lord, I hate that thing with a passion! It is NOT efficient in my humble opinion, nor does it use enough water to actually clean clothes, & the clothes are so wrinkled when they come out, it looks like they have been stuffed down in the bottom of a Ava’s book bag for a month. Not only that, my blooming Maytag washing machine runs all durn day. Before I got this hunk of metal, I could wash a load in about 35 minutes. Now, I have to plan the night before, load the washer, set the timer because it runs for an hour or longer. There is a minute countdown on the washing machine so when you start a load it will say 55 minutes, after 15 minutes, it could go up to 58 minutes, 1/2 hour later, it may only be at 45 minutes. This thing is beyond foolish. If you use the bedding setting, it estimates an hour & 15 minutes to wash, how absurd! When using the delicates setting & the lowest setting possible for wrinkle control, my clothes still come out looking like this:

Another thing I’m baffled about with this washer is the cold wash setting. It says cold wash on the dial, but the water temp starts on hot. How is that a cold wash? I’m not sure what this washing machine actually does other than cause me duress! It runs all day & I think it runs just to dampen my clothes a little bit & wrinkle our clothes! I take anything that is semi-good (outside of my Berry Patch shirts) to Mama when the stains won’t come out. Even she hates my washing machine!

Onto the next destructible thing. I don’t drink coffee at all, that’s Lee’s passion & I only make it (on timer of course) on school mornings for him. We’ve had a Keurig that broke, a Mr. Coffee that broke, I literally just bought a coffeemaker from Aldi a month ago & now it has broken. The brewers are used so infrequently that I would think they could hold up, it’s not we are using them morning, noon, & night. Just today I went to return the coffee pot I purchased at Aldi & guess what I did in the parking lot before I ever made it inside the store? Dropped the glass carafe & broke it. Then I couldn’t return it. My life! “They” just don’t make nothing no count any more. Seems like we are running to Walmart or Lowe’s constantly to get a new coffee pot, curling iron, microwave, & even refrigerator. When we moved in the house we live in now, which was about 10 years ago, we purchased a Samsung refrigerator, one of the worst mistakes of our lives. This is a picture of Lee thawing out Samsung’s finest appliance with my hairdryer & a fan. Lee did this for years, usually once a month until we finally broke down & purchased another one last summer.

Samsung has caused many a problem within our home & we do not advise the purchase of a Samsung refrigerator. So far, Whirlpool is holding out strong.

In closing, I hope someone reads this that designs the interior of cars, parking lots, toys, & appliances, maybe they will ask for my design ideas. The destruction of things is real, the destruction of expensive things is even worse, nothing is made to last any more. Good ol’ American constructed, lifetime & beyond products are gone. Wouldn’t it be nice if our hard earned money was actually invested in purchases like it used to be when folks bought one refrigerator & one stove when they got married. People died before their frig could! Everything is too disposable in a non-disposable world. In the meanwhile, I’ll keep the hairdryer handy just in case the Whirlpool decides to freeze over & the superglue closer.

P.S. If your washing machine, toilet, dryer, or refrigerator stops working, go to a yard sale to make your next purchase, you won’t be sorry. The older it is, the better!

Dolly vs. Shania

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!

The Longest Yard

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.

A quick trip south

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!

If I had a Million Dollars

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.

The Hex

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!!!

Breakfast for Hitler

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!

Side Effects of Turning 18

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.

Chair Nail

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, 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.