The person I never thought I’d become

Life is tough, that’s a statement most of us say, think, or hear daily. It’s something reiterated to our kids when they don’t get their way or a friend betrays them, it’s what the boss says when you’re needed to pull an extra shift. It’s what we think when vacation plans fall through-all these examples are based solely on personal experiences & probably yours as well. This is a statement I utter inside my head more than once a day. Why is life so tough, why is it tougher for others, why does it seem like a black cloud follows certain people more-so than others. When Jack is at his worse or even his best, I walk around like Nancy Kerrigan when Tonya Hardings people attacked Nancy during the ’94 Olympics screaming “why, why, why?” At Jack’s best, we are still limited. Limited because I can’t get to the post office before it closes on Saturdays, limited because I can’t cook breakfast for my family because he’s still asleep at 10am & no one wants to poke the bear before need be, limited because every move I make centers around this one human being that has so much control over myself & our family, & limited because of the person I’ve become.

The person I’ve become is not the person I thought I would be. I was a happy person back in the day, now I am a shell of that person. I once heard a neurosurgeon on PBS explain how trauma & stress change people. The doctor said that it changes the chemistry in the brain, it changes the way we think, the way we feel, the way we react to situations. I can concur with that. The repeated stress of Jack’s situation has done all of those things to Lee, myself, Coleman & Ava. Our smiles don’t reach our eyes any more, our hearts are filled with negativity & the looming thought of what Jack is going to do next.

I used to never worry. Taking the days as they came, making plans. Now, that’s all we do is worry because Jack gets involved in so much foolishness. Every knife, pair of scissors, lighter, & razor in our home are hidden. Can you imagine living a life like that? Where you can’t go to your kitchen junk drawer & reach for a pair scissors to cut a tag off something. I keep mace & wasp spray hidden in the house in case I have to use it on our own son. Nothing is easy for our family. I’ve learned before Jack is placed in a group home that he has to have psychological testing. That means I’ve got to take him to our local behavioral healthcare facility for this. How is this going to be possible when he won’t even go for a checkup at a regular doctors office, plus, if he goes, what am I going to tell him it’s for. Not only that, the office can’t see him until June & that’s for the initial appointment. If I get him there once, I’ll never be able to again. I left a message for the provider, hopefully she will understand the situation & do everything in one visit. It’s a double-edged sword every time we turn around.

I was the girl that exercised everyday. At one time, I was the nut that woke up at 6am on the weekends that exercised with Jane Fonda. I was the girl that cared about clothes, makeup, shopping, & style. Now, my attire is strictly Berry Patch T-shirt’s-which we sell at a very reasonable price (got to do a plug when I can). I cared that my hair was washed everyday, now I’m not able to do that because of Jack’s neediness. Getting my eyebrows done every other week was never missed, now it’s like every two months. I cared about decorating my futon/porch for every single occasion. I don’t even really care to watch QVC any more & that was a big thing for me-Lee is definitely happy about that change. I used to visit with family, that is one that miss the most. Those times have come & gone. The opportunities to do any of the above has drifted away.

This week, Jack has gotten involved with other scammers. He has demanded iTunes, Amazon, & Google Play cards for the fools on the other side. We also think they tried to talk him into stealing my Mama’s cellphone information so they could hack into it. Along with all of this, he also wanted his birth certificate & wanted to know where he was born. I gave a fictitious place of birth. He called the durn courthouse trying to inquire about obtaining a birth certificate. Then, he called our local bank & inquired about opening an account. Thankfully, the teller knew me & messaged me right away with this information. She later told Jack he had to be 21 to open an account. Crisis was diverted…for now. It really seems unreasonable to us that Jack is so problematic. He takes the term “problem child” to a whole new level.

As I type this, we are without power, have been for the last eight hours because of storms. Being without power in Jack’s presence, is like a crackhead going a week without crack. He has moved from room to room, blown out candles repeatedly & relit them (yes, I was able to find the lighter), moved candles around ripping wax along with way, carted the portable lights all through the house, & blinded us all with the flashlight.

In the south ever since September of last year, we have been swamped with rain, I’m talking days & days of consecutive heavy downpours of wetness. Most of y’all that read my blogs know that Lee (husband) is a farmer. Our big crop is strawberries. Rain is the absolute worst enemy for the red jewels. Lee grew the largest crop of berries ever this year & we have had to trash a huge percentage of strawberries due to water damage from all of the rain. Just this week, he laid special plastic at a cost of around $8,000 in order to raise crops like squash, cucumbers, & tomatoes only to have the rain wash the rows of plastic away. Farming is a gamble, we’ve been through hail storms, tornados, & dry spells, but never in the frame of mind Lee & I are currently in. When we trash berries that were supposed to sold to customers it hurts, when combined with the tragedies of our home life, it really gets us down. As I mentioned, Jack has been worrying us all week long for various gift cards to give to some worthless nut which always hurts. When he calls during the state of mind we’ve been in about the loss of strawberries, it makes you crazier. Here we are trying to pay our bills & Jack gets hooked up with a scammer every other day that is stealing from us. Purely sickening!

Jack has also had a few seizures in the last week. His seizures were under the best control ever for the last year, so I decided to try to wean him from one of his meds because they each have behavioral side effects. This was a wean I worked on for over six months & almost made it. Jack was completely off Topamax for three weeks, but was restarted due to the increase of seizures. The recovery after the last few seizures he’s had has been very difficult. He has become aggressive about an hour after the seizure. The last seizure, he started kicking me hard & squeezing my arm. I was so terrified. During the recovery period, he is not easy to deal with, I only hope the aggression was a result of not having the support of Topamax.

Lee & I often wonder what Jack is going to get into next. It’s so hard to wrap our minds around all of the crazy things he has gotten involved in & has learned. It is crazy to imagine someone else taking care of Jack, but I have to wonder if God isn’t allowing all of this to happen with Jack in order to soften the blow of him going into residential care?

And Then…

Ava always tickles me when she shares a story with me, her favorite phrase while storytelling is “and then”. I pick at her all the time about it, how coincidental that Ava’s favorite phrase has become the title of this blog-I guess the joke is on me! My stories about Jack often involve the phrase “and then” also. It seems like when I tell someone about the events that have taken place in merely one day about him, “and then” is used a dozen times or more (like mother like daughter). Jack had a wonderful few weeks recently, it was pure bliss. Slowly but surely though, signs of a bipolar storm have been brewing. The term is called “storming”, this is when bipolar stricken people go south-all the bad behaviors creep back in.

This past Wednesday, Jack started showing signs of the “storm” by getting involved in chatrooms again. When he is not storming, the chatrooms are a no-go. He’s more into games, watching movies, & talking with us. As the chatrooms return, other negative behaviors re-enter our atmosphere; sassiness, instant demands, not sleeping, aggressive behavior, clawing like a tiger, doing potentially dangerous things, speed talking, zero regard for others, extremely loud music, & way more (seriously). I never tell Jack about appointments until the day of because he gets so anxious & worked up about them & has time to think of reasons why he shouldn’t go. The following day, he woke up early & wild. Wouldn’t you know he had a dental appointment to get his teeth cleaned & a tooth filled. He didn’t know this, but somehow he did intuitively. The child has supernatural powers I have figured out. When I broke the news, he was reluctant but ended up going. While I was doing my chores in the house, I hear Jack on the phone. He called the dentist office! He wanted to speak with his hygienist about why he has a cavity, explain that it’s not his fault, how long he will be there. He is so much smarter than tests show! On the way to the dentist, Jack was really irritable & suspicious. I don’t know about where you’re located, but in our area, every bridge that gets us anywhere is being rebuilt. Our usual route to the dentist was on a detour, because of this & I was interrogated worse than a serial killer by Jack. All went well at the dentist & we headed home.

Jack had arranged for Mama to come stay with him while I went to The Berry Patch after his appointment. He didn’t want Mama’s presence at all while she was there. Lee was doing the farming thing until dark so I had to close the business. Most of you know Jack has a fascination with the guitar Santa (the smartest transgender person ever) brought for Christmas. He also has a fascination of tearing things up. He has intentionally broken the strings on his guitar just to do it & just so he can call a neighbor friend to fix it. Our neighbor is kind of enough to fix it, but I know he is getting sick of Jack & his guitar. He fixed the guitar & tuned it. The very day it was returned, Jack said it needed to be tuned! While Mama was there (Ava was too, PTL), Jack demanded that Mama take him & his guitar to the neighbors house. Jack had just called him & he didn’t answer. Mama told him no, he wasn’t home. Then Jack said he was going to walk to his house. It’s nearly dark & this isn’t an across the street neighbor, it’s a several blocks away neighbor. She tried to reason with him & tell to wait, until I get home. Jack was becoming more demanding about the guitar & irritable since he was not getting his way, he stood up & got his plastic Power Ranger sword & pointed it at Mama. Although plastic, you know if you’ve ever tried to open a plastic wrapped toy or something like a curling iron encased in plastic, that plastic will slice you up, this sword could of potentially done some damage. Jack was putting it all up in Mama’s face. Ava called me in a panic. Thankfully, I was around the corner at Ellerbe’s finest mall, the Family Dollar. Mama was able to diffuse the situation before it escalated further, which never happens, there’s always escalation.

Coleman came home for the weekend later that evening. Fast forward to Saturday morning, Jack woke up like a bull in a china shop. I’ve said this about him many times, but there is literally no other way to describe his morning behaviors. Saturday & Sunday mornings are so very stressful if Coleman & Ava are home. Jack takes every opportunity to aggravate them to no end, they spend the bulk of their morning hours locked in their rooms. I’m always excited when Coleman comes home, he has extended his pallet tremendously. He was cooking scrambled eggs with feta cheese & olives, he is definitely my child-it only took going away to college to confirm it! Jack came barreling through the kitchen, was roaring in his face, clawing his back, & tickling him. Jack’s behaviors to the kids are even more torturous to them than to me. They have no understanding (nor do I) why Jack is like he is. One of the crazier things Jack has done while he has been in a “storm”, is what happened next. Now if you are a reader of my other blogs, you know that we’ve had to hide our scissors & razors since Jack has done foolish things with them in the past (meaning recently). After he terrorized the whole house, I was trying my darnedest to get ready for the day, I hear Jack get something out of the drawer in the kitchen. It’s two screwdrivers. He took the screwdrivers to an electrical outlet in his room & commenced to sticking them in the outlet. I begged & pleaded with him to stop that he could get electrocuted. Nothing I said convinced him otherwise. He told me to shut the door, he didn’t want to be bossed around. And that’s just what I did. There was not anything I could physically do to get the screwdrivers from him without an altercation, so I just backed out of the room & prayed for the best. Jack’s caregiver came soon after & retrieved the screwdrivers for me. I’m telling y’all, we ain’t gonna be able to find anything in our house before long! It took three weeks to find Lee’s electric razor!

“And then” on Sunday, as Jack’s involvement in the chatrooms intensified, so did the audacious remarks from complete strangers. Jack’s caregiver was messaging me all afternoon with the comments these people were sharing with Jack. Calling him a retard, playing mind games with him by saying they were going to be moving in with him, etc. It is so heartbreaking to think of the cruelty people have towards any person, but especially the special needs community. Moving on to current time & day, I was braiding Ava’s hair tonight. She wanted to sleep with the braids so her hair would be curly tomorrow morning. Jack comes in when I’m nearly done & demands that I stop. He didn’t like the braids. What 17 year old boy would even care about something like that! We uprooted to a different room. I could hear Jack being loud & obnoxious. After Ava got tucked in, I went to shower. Yes, a shower that involved washing my hair. Guess what happened? Jack had a seizure. I was blessed with the senses of a beagle, I knew it, but Lee did not. Lee thought he was pretend sleeping. The build-up to a seizure & the recovery after the seizure are harder to deal with than the actual seizure. His brain gets so amped up before & afterwards it’s like Jack doesn’t know what to do with himself. We can only hope that having the seizure causes a more calm reset of his brain, but even if it doesn’t, at least I got my hair washed!

Covert Operations

This week at The Berry household has been a smooth week compared to most. Jack is still continuing to have a mostly uneventful week, which makes for two good weeks. The good weeks aren’t without some type of needs from him. As most of you know, Jack got an electric guitar for Christmas. Santa gifted him with a kids cherry red electric guitar, it was really the only thing on his wish list. To compromise, Santa (the smartest transgendered person I know), got him the kids version so he wouldn’t rock the house down all day & night. Santa didn’t give him the amp with it either, smartest decision ever by the way. We are blessed to know a really wonderful family, I think I’ve mentioned them before, the VunCannons of Ellerbe. Both of the younger VunCannon guys have helped us with Jack on numerous occasions. One of them plays the guitar really well & Jack found out about this. Jack has broken a guitar string several times since finding out he can play the guitar. It’s so aggravating. Jack tears up absolutely everything. My Daddy always said our kids could tear up an anvil, turns out he was right! Jack does it for spite, attention or maybe both. Yesterday it was his Bluetooth earpiece, you know, what CEO’s wear so they won’t have to be prisoner to a phone between their ear & shoulder. The earpiece was broken, he called begging me to get another one, so I had to do that & stop at Chiba where I know the drive-thru fella swears I have a crush on him! You would think Jack is running a Fortune 500 company out of his small bedroom by the looks of it. He’s got his earpiece, laptop, iPad, iPhone, & an actual notebook & pencil on his bed at all times going & has Japanese delivered just like an executive would!

Jack has been harping about turning 18 (in August) for a year now. It has us scared to death. He really thinks when he turns the legal age of an adult, freedom will ring! To him this means the ability to stay home alone & do anything else he wishes without parental consent. This is very scary for us. We really don’t know what to expect on or after his birthday. Jack needs assistance in all arenas, from bathing, toothbrushing, grooming, you get the point. Something funny/not funny that happened the other night, Jack went to the bathroom & asked me to wipe him like I always do. He then changed his mind & decided to do it because he said when he turns 21 & gets a girlfriend she won’t have to do it. My Lord, this child’s mind can go places! He’s moved the technical age of getting a girlfriend to 21, but he is still actively seeking one and/or a wife online everyday. Jack was asking about driving a few days ago. This has always been instilled in Jack that he can not since he has seizures. I tried to explain to him again this was not possible. He seemed satisfied with that answer…for now. He is also on a tattoo kick. If tattoos are your thing, that’s great, but I can not see taking him to a tattoo parlor, that is a can of worms I am NOT willing to open. He even contacted the Epilepsy Foundation on Facebook to ask them if he could get a tattoo. I am always astonished by his smarts & threatened by them at the same time.

Due to the taxi fiasco a few weeks ago (that was when Jack called a taxi to the house, he got in it & started to drive off before his caretaker stopped it-he was going to Ellerbe’s finest mall, Dollar General to buy a gift card without any money), we have had to change everything about our living arrangements. All keys are hidden, we changed the door locks, alarm code, the doors are never open any more. Just having the doors open makes me feel brighter, now they have to be locked. He didn’t want a baby monitor in his room any longer since he was about to turn 18. I would hide it, he would find it & get upset. I don’t really use it for seizures any more, I use it to hear he is up to. While Jack was with the VunCannon family one day for lunch, Lee & I used our time wisely in a covert operation. That’s when the locks were changed, more window locks in place, & we taped his monitor to the back of his dresser. What a pain our lives have become. Lord help us if there is ever a fire, we probably would burn to crisps because we’d never find the house keys or be able to jump out of the windows. Thank goodness the fire department is around the corner! I’m half expecting him to find the monitor one day or it come untaped in the middle of the night. The other piece is kept hidden in our room at all times. Lee & I felt like secret agents working to hide bugs in a Russian spy’s room, we were working on a timeframe & scared to death Jack would come bounding in any second. We succeeded…for now. Remember when Jack shaved his eyebrows a while back, then more recently he shaved his hair all because someone told him too? Well, I hid the electric shaver so good, that Lee didn’t find it for three weeks! I have no clue of its current whereabouts!

Our busy season is about to go full throttle, picking berries, making fruit dip, dipping those delicious strawberries in chocolate, strawberry cobblers, making the schedule which is absolutely hellacious-try scheduling 10+ girls in an ice cream shop, it’s the things nightmares are made of, but we love them all so much. Then there’s the scheduling of the produce stand, Calgon, take me away! I have to wonder how we’ll make it this season? Will Jack continue to cooperate, will his obsessions be taken to a new level? It’s daunting to think about. It might not be pretty, it might not be our best effort, but it will be (hopefully).

Tony Robbins makes a comeback

I’m not sure if I have shared this before in precious blogs, but for years I have said Jack is bipolar. He has so many symptoms of the disorder. I, however, have a hard time convincing his doctors of this. Their response is always his behavioral problems stem from Dravet. It is not unheard of that people have more than one diagnosis, why I’m not taken seriously on this I’ll never know. Jack is on seizure medications that are often recommended for bipolar disorder, but as you know, not all mediations are one size fits all. Jack’s medication management is very difficult because he refuses to go to doctors appointments. I was extremely lucky back in January to get him to Chapel Hill for his yearly neurology appointment. Because of his refusal to go more than once a year, I communicate with his doctor via email. His doctor is so gracious & understanding about Jack’s behavioral issues, that he is kind enough to do this for us. Most doctors want to see you before making any medication changes & during the change, this is not an option for us, so I am eternally grateful for the understanding heart of Jack’s neurologist.

The symptoms of bipolar disorder fit Jack like a glove. He goes through cycles where he is really, really good (which are few & far between), then gets really, really low. I call this the spin cycle. When Jack was younger, he hardly talked at all. It wasn’t that he couldn’t talk, he just didn’t. Then one day, he started talking excessively (BP symptom) & hasn’t stopped yet. We finally had to stop eating meals with him, he literally talked our ears off. It was so maddening that none of us could speak because Jack consumed the entire dining experience. We would have eaten our meal, gone back for seconds & he would not of eaten a bite. He also must be the center of attention in all instances another characteristic of the disorder. One that we deal with constantly is his sleep patterns. Jack more often than not sleeps either too much or too little, neither one resulting in a good outcome. There have been times he has slept for a solid 15 hours. You would think this would be better for him, but it’s not-he is ill as a hornet! It’s so hard for him to find a healthy balance with sleep which can be a Dravet issue as well so we have two double whammies with Dravet & BP making sleep even more difficult. Eating patterns of eating too much or not enough with the latter being his preference. He has days that the only thing he will touch is a one little frozen meal for days in a row & maybe 6 ounces of drink. Then there’s the symptom that is the most horrific, closing himself off from everyone. That one is the most challenging & scary. Those are the times he gets deeply involved in chatrooms, communicates heavily with strangers, listens to songs with strong profanity, asks people to come live with him, & can become violent.

There’s also the times that he is so annoying to everyone & just plain mean. This week though, I have gotten the pleasure of Jack showing us his Tony Robbins side. Tony Robbins was once a famous motivational speaker. These are the rare moments, the moments I want to hang onto forever. He has been very appreciative of us doing things for him, talking about hope & learning from mistakes, playing Bible games. He’s even been smiling & laughing a lot. It is amazing! What’s so scary about this particular cycle & makes me know for sure he is bipolar, is these moments don’t last. They are fleeting & the bad oozes back in in a flash. And when the Jekyll & Hyde side returns, it gets crazy around these parts as you all have read!

I still haven’t heard from the Dr. Phil Show. I never thought I’d be a candidate for a talk show & certainly never thought I’d need to go on one because of one of our children. If anything, I figured I’d be a special on Jerry Springer! Here’s a funny little story about how Lee & I were almost not a couple. Lee & I have been in the produce world a long time. I started my first job that I loved so dearly at a farm stand called David’s Produce at age 11, Lee started when he was 16 or so. He was the cutest thing I had ever seen, but there was one caveat, he was five years older than me plus, he was mean as a snake! Throughout our long tenure at DP, Lee & I developed a somewhat friendly relationship, we joked around on occasions but mostly he ignored me. A few weeks after celebrating my 18th birthday in October of 1993, Lee asked me on a date-he had to make sure I was legal & all! Now, my parents had heard me talk about Lee for years since we worked together pretty regularly & they were okay with us dating. We went on plenty of dates prior to our first family Thanksgiving meal the following month. Lee came to the house & picked me up, it’s not like he picked me up from the driveway. In November of 1993, a month after we started dating, we celebrated Thanksgiving. We were all hanging out around the table chatting, Mama, Daddy, Jodie, her husband, Lee & myself. The topic of high school graduation came up & Lee said he graduated in 1988. Mama said well how old are you, Lee said 23. Mama’s head nearly flew off! I got blessed out for dating such an old guy. Thanksgiving was ruined, time for Jerry Springer! Lee was mad because I didn’t tell them his age, Mama & Daddy were mad because I was dating an old man! I honestly had no clue they didn’t know his age. I had worked with Lee for years so I figured they knew his age, it didn’t cross my mind to share it. Thank goodness we had already eaten our Thanksgiving meal or I would of starved that holiday! I’m not sure how it all got smoothed over since I’m 43 now (the mind is starting to slip), we did continue to date after that explosion lol.

I’ve heard people talk about bipolar disorder before saying it’s not a real disorder, that the behaviors are put on, honestly, they are not. The disorder is real. It impacts the family as a whole. Safety is threatened a lot of times when dealing with this mental illness & others. A family is often forced to cater to unrealistic wishes. Treatment can be extremely difficult. Although are lives are all of the above, we are extremely lucky to be blessed with family & caregivers that can step in & help when needed. If it were not for these people, we would be on serious medications! Just to reiterate, please know we are externally thankful for your continued prayers for our family. It is so reassuring to know we have a team of friends praying for peace in our journey. Pray that Tony Robbins will continue to stay!

Calling Dr. Phil

During teacher workdays or days home from school being sick, I got the pleasure of watching one of three television stations. I even got to change the channel with a pair of pliers because the dial fell off. These were the days before computers, cellphones, & 100’s of tv stations-what I wouldn’t give to go back to the simpler times, except all the cigarette smoking they went on in the 80’s, I would not take that back. My choices were either The Price is Right, Card Sharks, The Mary Tyler Moore Show & Bob Newhart reruns, but one of my favorite shows to watch since my options were so limited, was Sally Jessy Raphael. I was enamored like most Americans by Sally’s lipstick red glasses & of course the people on her show & their problems. That was juicy stuff for a 5th grader! I’d hear problems of infidelity, people having sex changes, & friendship woes. How strange to go on national television I thought with your problems. Who would be so desperate to sit on tv & air their dirty laundry like that? I suppose the same could be said for my blogs, I am now like the people from Sally Jessy! I started the blogs because people asked about Jack so frequently & I always said he was hanging in there without going into detail. After the urging from some friends & family, I decided to give it a try. I’ve never like writing as I’ve mentioned before, but I always threatened to write a book one day based on strange experiences I’ve had in my life. I do have some crazy things happen to me.

In the sixth grade, we had a national writing test. This test judged your writing skills only. I was never a good student unless the subject was health & p.e., I just couldn’t get it. Math didn’t make any sense to me outside of simple things, English was a nightmare, I hated the boring stories as required reading-I was lost & diagraming sentences, forget it. History was an equal bore. I graduated because I had wonderful memorization skills & good hair. Getting back to the writing test, you could make a score of 1-4. I made a 4, whereas most everyone else including the super smart kids, made a 3. How bummed were they that the not smart kid made a perfect score. They just knew my test was misgraded (it probably was lol). I was so excited to have received one of the highest grades in our class, but the excitement was soon deflated when everyone started talking about how they couldn’t believe I made a perfect score. Where was Sally Jessy Raphael when I needed her! Maybe I was meant to write a book after all.

So I did a thing last night. I rarely get to watch Dr. Phil. Hearing about other people’s problems is not at the top of list for me & they are sometimes right foolish. I opt for one of the Real Housewives instead (makes perfect sense, right?). I’ve been saying I was going to contact Dr. Phil about our issues with Jack. I’ve seen Dr. Phil try to help many families with some similarities. I went to Phil’s website & filled out an application to be on the show. This goes to show you how desperate I am for help. The application wanted a description of your family problems. I listed that we have a disabled son with a rare & serious disease called Dravet Syndrome who is mentally impaired, too & we are terrified of him & what he may do next. We can’t sleep in peace, our other two children are afraid of Jack, we can’t work without constant bothers from him, continuously spending money on gift cards that he gives to strangers, & he can be violent. We need an intervention & I’m hoping the person that screens the email applications will realize that. I’ve seen Dr. Phil help other families by sending them to special places for help, we are praying this will be one of those cases.

Just this morning as I was getting ready for the day, Jack called me in his room no less than 50 times. Yesterday morning he developed Scooby Doo eyes as I call it, (that’s when Scooby became hypnotized & his eyes would spin in circles) on a mole on the side of my neck & tried his dangest to pull it off. I fought with him for ten minutes trying to get him to stop. I had to send Ava off to church with my aunts today because Jack won’t go to church. He is so wild in the a.m. hours, that we hate to ask someone to come stay with him unless absolutely necessary. Lee & I haven’t been on a date in a long time with just us two. And let’s not forget the sleepless nights. We need Dr. Phil! I have more faith in him than I do in the mental health system. I ask myself this question all the time, why do doctors not want to focus on the brain? The brain is what controls everything in your body. It’s our control center! If it’s not working correctly, then your body isn’t going to work right. It controls your thinking, breathing, all organs. The brain is important!!! We need less paperwork & more facilities & resources to help the mentally challenged. Our mental health system is drastically failing our nation. Maybe we can get on Dr. Phil & make a plea for the people of this country that are suffering. Families shouldn’t have to live like we do. No one should be scared to live in their own homes due to a mentally impaired person. One day I’m going to figure out how to help Jack & people like him. One day…

Playing Possum

I have mentioned in past blogs that one of Jack’s unpleasant behaviors is pretend sleeping or playing possum as we Southerns say. If you’ve ever played possum before, it was usually to get out of doing something you disliked such as washing dishes (I could be guilty of this one). Playing possum takes on a whole different meaning for Jack. When Jack plays possum, it can go one of two ways, he can become violent or become totally & completely unresponsive meaning he goes limp, collapses wherever he is & is in a catatonic state. These behaviors are usually a result of him not getting enough attention or overexerting himself. It doesn’t take a lot for Jack to overexert himself either because he is bed-bound most of his days & nights.

Once when Jack was around 10 while at Mama & Daddy’s, Jack out of the blue decides to play possum. Daddy asked him if he was playing possum & Jack jumped on Daddy like a crazy person in a violent, unprovoked attack. What set him off, we don’t know. We were able to restrain him & get him calmed down after about ten minutes, but that lead into more pretend sleeping for the next few hours. At that point, we put him in his room & left him alone. Through the years there have been many pretend sleeping events, often done out of boredom. He has had them at families homes while visiting which results in me & Lee feverishly trying to get there to thwart a possible violent outburst. This pretend sleeping ain’t no joke y’all, it literally scares us to death.

Fast forward to present day, Jack doesn’t do the play sleeping thing as often as he once did. That is mostly because we have learned to alter our reactions, know his limitations, & know that we have to constantly give him attention when he will allow us. Jack has so many obstacles to explain, that it is hard to tell the people that are taking care of him what he can & can not do, it is really a huge learning curve taking care of the kid. Everything is a learning experience for those outside of our home. Today, Jack spent some time at his caregivers house. She has small grandchildren & kids of her own that Jack loves dearly. He enjoys spending time there & we are grateful for those few hours of respite. Ava & I have been trying to watch American Idol for days. We have to watch shows in 1-3 minute increments because life is so hectic with Jack. Of course into a few minutes of watching Idol, his caregiver called & told me to get to the house, Jack had been in the floor for several minutes, unresponsive. I left with supper cooking not knowing what I was going to, a seizure or playing possum. Either is about the same degree of aggravation for us. She lives just a few minutes from our house. When I arrived, I found Jack in the floor pretend sleeping & catatonic. I absolutely hate this. While Lee was on his way to assist, I tried everything in the book to stimulate Jack from giving him a surprise when we got home to asking him about music, nothing was working. When Lee arrived, he & I had to carry Jack out to the car, all the while Jack never once opened his eyes & was as limp as cooked spaghetti noodle. Jack had to be lifted into my Yukon. Once inside, his head fell over like a dead person. It was like a scene from Weekend at Bernie’s. I rode through town like this, people probably thought, “oh that’s just the Berrys, wonder what Jack has done now”! He even had to be carried into the house. This child was very with it, he won’t come into the house with his shoes on-ever. He did fling them off before entering, then he collapsed on the bed. Let me stop right here. I find it so hard to believe that Jack who gives us a pure fit about everything under the sun is the only person to take his shoes off before entering the house because he doesn’t want to make the floors dirty. Stop & think about this. He refuses to listen to anything we ask him, refuses to listen to reasoning about the endless amount of gift cards we have to buy for him to gift to his catfishers, won’t bathe or brush his teeth for days on end, but he will take his shoes off. How did I succeed in doing that?

Back to the above drama, this ordeal went on for about an hour, then suddenly Jack perked up like nothing happened. He got back to his business of chatrooms & calling the Apple support team about some issue with his iPad. And let me take a moment to brag on his phone skills with customer service reps. Unlike myself, Jack is very polite. He is, “why thank you sir”, “thank you ever so much for your help”, “have a great night”. Where is this politeness when dealing with his family? After talking with his caregiver, she said that Jack had been chasing her grandkids around the house, then suddenly fell out. He became overexerted. Just as Jack doesn’t feel the sensations of pain, hunger, or thirst, he doesn’t know when his body has reached its limitations, which results in such a pain in the butt ordeal for us.

If Lee & I didn’t have a business we owned & operated, I don’t know what we would do. The times that I have needed him nearly instantly because of something Jack has done or some of Jack’s demands like needing his toenails clipped in five minutes & will only allow Lee to cut them or Jack calling in an order at our local restaurant Dixie Burger but refusing to ride with me to get the order so he calls Lee instead to pick it up or the 10 phone calls I receive from the moment I walk out of the house until I get home. How could we have made it if we worked at traditional places such as a bank or for a power company? Our business has been a blessing to us simply because of the flexibility.

Since the time has changed, Jack has suffered with sleep issues. I was just able to get him on a good sleep regimen, I guess all good things must come to an end. It has been after 3am before he falls asleep now. We have never gone through this with him before to this degree. As he ages, it seems like each stage of difficulty that he has gone through, has gotten worse. Dravet affects the whole body. The mind, his heart, GI system, bones, gait, behavior, sleep cycles. It is really a cruel disease. The patients that have this disorder that are higher functioning like Jack, have the worse behavioral issues, the ones with low functioning capabilities are often sweet angels. Dravet has not just affected Jack’s body & mind, it is doing a number on Lee’s & myself as well. All I can say is, what’s next??? I saw this meme the other day & thought to myself, I bet this is exactly what people say about me & my blog!

Time Change

The time is 5am, the morning after the time change. I told Lee Saturday that there would be no telling what time Jack would go to sleep Sunday night after the time change, looks I was right, I just didn’t know it would be this late or early depending on what you call 5am. This kid had no clue that the time changed to my knowledge, but somehow it got his wiring mixed up-happens every time change-usually not to this degree. I’ve seen every hour on the clock today since 8am on Sunday, in three hours I will have been up for 24 hours. Jack had two sleeping pills & a Benadryl at 10:30pm, 6.5 hours later, he’s still wide awake. No wonder I have thyroid problems, am obese, & probably developing carpal tunnel syndrome from blogging so much! Ball team, y’all better be looking for another pitcher lol.

While flipping channels watching everything from Frazier, a fashion clearance on QVC, vacuums on Evine, & now morning news, Jack got up & emptied his trashcan from his room. Him emptying his trashcan during normal business hours is highly unusual, him emptying it at 4:30am is downright strange. Upon investigation, I discovered Jack cut his hair. Someone that he’s been chatting with undoubtedly told him to do so. No reasoning to be had with him, so I didn’t say anything to him about it, I simply closed the door back & went back to my room in hopes that he would soon fall asleep-he hasn’t. Y’all must think I’m making this stuff up! I’ve mentioned before that he shaved his eyebrows several weeks ago because someone thought it was funny to tell him to, now his bangs are gone. Scissors are a huge part of my life. I use them more than most people. They are an essential cooking tool for me for the meals I make for my family & Berry Patch cobblers & such, I even have special ones for certain things. It looks like now I’m going to have to hide them. What an absolute pain in the butt!

It’s hard to believe in just a little over an hour, Ava will be up getting ready for school & her brother has yet to close his eyes. Lee questioned whether I gave Jack the right medication tonight. Jack’s sleepless nights always make me second-guess myself, but I know it was the right one. Anytime Jack has ever had a procedure at the hospital, they have to give him elephant sized meds to either put him under and/or relax him post surgery.

Sunday evening, Coleman & I were out delivering knives as part of his fundraiser for his study abroad journey to Norway & Sweden, when we were blessed with the opportunity to see the most beautiful double rainbow. We’ve seen plenty, especially since North Carolina has become the rain forest in recent months. I’ve said for years that here in our area, when the day is gloomy, the sun almost always comes out right before sunset. That’s what happened with the double rainbow. Today was a gloomy day with some rain (of course), the sun was about to set, but there was a pink sky behind the rainbows, that is what made it so unusual & magnificent. I felt like I was seeing the beauty in the sky for some reason, like maybe change was in the air. Now that Jack has cut his hair, I guess not, but I will still marvel in the beauty of His creation. I wish the title of this blog could of been Time for Change.

It’s 5:35am, Jack & the Power Rangers movie are still going strong as well as his “Alexa” who is aiding & abetting his love for music…Lord help us Jesus the club is hopping this morning! I rue the day that woman was ever invented!