Dear Aunt Sue

Dear Aunt Sue was one of the funniest people I knew. She was hilarious & didn’t even know it. She had us rolling on the floor laughing all the time with her funny sayings, quotes, & talking about her love for smoking, cussing, coffee, Pepsi, Nabs, & Jesus. Sue could be praising God one minute & the next, she’d flat cuss you out. Don’t get me wrong, she absolutely loved God, she just cussed a little (or a lot). Sue is my Mama’s sister, full name Linda Sue Coleman Coleman. Yes, that’s right. She was a double Coleman. She was a Coleman by birthright, married a Coleman (not related) by choice. Born in the early 1940’s, she & the rest of her siblings grew up on Mill Hill in East Rockingham. Both parents worked in mills when that was once a thriving industry. There were seven kids, one still standing which is my Mama. In 2013, Sue’s thigh was giving her a fit. She went to our local ER thinking her thigh bone was broke. It was, but sadly she had a cancerous mass on her thigh bone that caused the break. Sue quickly had surgery on her leg with a rod inserted to correct break & the mass removed, but opted not to treat the cancer because of the side effects of chemo & radiation. One of the main reasons she didn’t want to have treatment was because of sickness that comes with those treatments & the loss of hair. Hair was everything to Sue. The bigger the hair, the better. She had a large collection of Toni Poni’s. A Toni Poni is a clip-on hairpiece that looks like a ponytail. There are pictures of nearly everyone of us with Sue’s Toni Poni’s clipped in our heads. Sue didn’t last long, in 2014, she passed away. We lost a legend that day.

Ava with a Toni Poni.

This is Sue posing with her gift of Nabs for Christmas.

What prompted me to write about Sue, is our Directv has been out multiple times in the last few months. Not because of weather issues nor sticks or debris around our satellite like they make you want to believe either. The piece of crap just can’t keep a signal for some reason. Lee brought home the ladder during one of our outages to clean & polish the blooming thing & still no luck (the ladder is still there btw, wonder what trick I can use to get him to move it). You know as well as I, trying to get a human on the phone is about impossible. Trying to get a human that works for Directv or AT&T or whatever they are referring to themselves now is like actually trying to call the director of the FBI. We’ve had Directv for 20 years & never had an issue until recently. When Aunt Sue was living, we gifted her with paid for Directv. She helped us so much with the kids, that was a small thank you to her. I was so proud that Sue would not have the burden of not having a monthly cable bill!

Sue lived just two houses down from us. The kids could walk to her house at any time. I remember Coleman & Ava coming back home after a visit at Sue’s one afternoon saying Sue was gonna shoot the Directv people! This sort of talk was everyday language for us, nothing out of the ordinary, Sue was always going to shoot someone or cuss someone out (which she did that all the time). Obviously, she never did shoot anyone, probably only fired her gun one or twice for practice. Curious as to why the threat on Directv, I called Sue to find out the scoop. She couldn’t get a human on the line & they didn’t come out to her house like they said they were to install her equipment. I now understand Sue’s feelings towards Directv. After three calls just this afternoon trying to connect with a human body, I too, wanted to reach for my pistol & blow my debris-free satellite off the rooftop! Why do these knuckleheads make customer service so very difficult? You go through all of the time wasting steps & energy answering questions with some automated heifer only to be asked the very same questions yet again by a human if you’re ever so fortunate for one to pick up the telephone.

After assuring the technician my satellite was sparkling clean & the sun has shined for 14 days straight, she made another appointment for someone to come out tomorrow to install a brand new, sparkling clean satellite. The customer service rep I was talking to asked when our call was nearing its end, do you have internet service? Why yes I do I replied. Well, she says, you can watch tv on your mobile device through our Directv app. I’m sorry, not happening! I do not want to watch Southern Charm or Real Housewives of any county, city, or state on a device the size of a notecard. I’m old, I want to watch plain old fashion tv. I want to sit down in my recliner when I’m able to sit down, partake in trashy tv, fast forward through the commercials, & call my Mama or Aunt Dot & tell them they need to turn it to QVC. Is that too much to ask Directv? We had to go four days without tv last week because of the same issue & someone “supposedly” fixed it. I feel like I am reliving my youth during the 1989 Hurricane Hugo outage. I’ve written a blog about this before, here’s a quick refresher for ya. Hugo went through our area, we didn’t have power for weeks. Water ran on well, generator ran from 5pm-10pm so we could cook, clean, bathe, watch 30 minutes of Dan Rather, & go to bed. We survived, we didn’t have any choice. Meanwhile, my school friends all had power, telephone service, cable. Here we were with nothing to do but read the newspaper, listen to the loud hum of the generator, & inhale the diesel fumes. We’d hear through the grapevine that so & so across the creek got power back today, maybe we’ll be next. We were never next, always last. That’s what Directv has taken me back to, but those weren’t bad times only inconveniences. Those power outages that we became all to use to are now precious memories. Although it is aggravating, it really wouldn’t matter if I never got to watch tv again, but I bet my Aunt Sue would still want to shoot Directv for me!

Sue with the kids at Christmas.

Side note: please do not write to me telling me this was an inappropriate blog, you’ll be blocked, deleted, & publicly ignored! This was all in fun, I’d never shoot anyone, unless of course they deserved it! 🤣

Boiled Peanuts & Pokeman Hunting

I haven’t written a blog in a while & that’s because the surf has been calm on the Berry side of the sea for a change. Over the last few weeks, Jack took a turn for the better with the help of your prayers & the support of his caregiver. She knows what makes Jack tick, when he is open for ticking. She has convinced him into brushing his teeth everyday with a game. They race each other to see who wins. She has also gotten him to bathe nearly every other day. Jack would not bathe nor brush his teeth for weeks at a time. I was considering contacting Campbell’s soup to buy a vat of tomato juice to soak him in because he stunk so bad since that is a remedy to get rid of the spray of a skunk, if it works on skunk stink, it has to work on B.O. It is so refreshing to see Jack with clean teeth & nice, freshly washed hair. It reminds me of when he was a young boy & was so clean & pretty. I always thought Coleman & Jack were pretty boys & of course Ava a pretty girl, there’s just something about clean children. Jack’s little curls really shine after a bath & it makes him even more handsome. There has not been much activity from the chatrooms, partly because he got kicked out of of them or one-not really sure. The suspension on them lasts around two weeks or so, so I am terrified of the possibility of him engaging with that again. This is how he communicates with the individuals that promise him marriage & then demand gift cards to make the marriage happen. His caregiver has really been preaching to him about this. She has blessed us tremendously with her love & care for Jack, as well as her faith.

Over the course of the last few weeks, Jack has become interested in hunting Pokémon’s. For the illiterate like myself, it’s a app/game where you go to certain areas in town & collect points for finding a Pokémon or a Pokémon character. These characters are often found at populated areas such as churches, schools, the post office & such. Jack even bought a bracelet that is synced with his phone & the bracelet lights up when a Pokémon is nearing. Way over my head, but it beats him being in chatrooms & throwing our money away to total strangers. Several nights a week, I have to drive Jack around town hunting for these things. There are only about 10 places in our small little town that has them & we are less than a mile from any of them. It’s nice because we can ride with the windows down & listen to music. Since Jack shares a lot of my music interests, it can be fun. We jammed out to Achy Breaky Heart just the other night. Billy Ray would of been proud. On the downside, I’m pretty sure the police will be investigating our what looks like creeping skills soon. I have to stop on a dime often times since Jack isn’t good with directions & it’s most often in front of someone’s house. If I don’t stay there until all the points are collected, I get in trouble! So if you see a silver Yukon creeping around playing Achy Breaky Heart around 9:30pm, don’t call the police, it’s just us!

I’ve always said Ellerbe is a great place to live & don’t think I would like living anywhere else. As we were hunting tonight, I needed gas. When I went in to pay, I was surrounded by the smell of boiled peanuts. I’ve never been able to resist hot boiled peanuts! We sell boiled peanuts at our business, but I rarely have time to eat them. So I purchased a cup for me to eat while Jack was searching for Pokémon’s. I didn’t think Jack would be interested in eating them because he doesn’t like to work for food, there is too much involved to get the goods, plus, it’s not Chiba. Oddly enough, he wanted some (don’t all kids want whatever you’re eating?). As we sat in my car hunting Pokes, eating boiled peanuts & tossing our shells out the window, I realized that was a special bonding moment for Jack & me. I grew up eating boiled peanuts, he never tasted one until tonight & liked them. We might have more in common than what I thought. I’m thankful for Carroll’s Pantry (the gas station that sold me the peanuts) for giving us that moment, a good memory made & thankful for the clerk that asked about Jack. Often times, my mind is flooded with bad memories when it comes to Jack, but not tonight. Small town living is amazing & I would not change it for the world.

This is really a busy time of year for us with our business. It’s so chaotic, that I don’t get the time I need to cook or pay bills & be organized like I crave to be. I snapped a picture of my sad supper the other night, it was a rotisserie chicken (several days old) & spring onions.

Then as I sat down to pay a few bills, I remembered that I had not bathed yet, so I only got two tackled. My life is quickly becoming nothing but a piece of paper!

As I type this, Coleman is in the air on his way to Norway & Sweden for a study abroad opportunity. I was outside this evening & could faintly hear the squeals from a child in the neighborhood, it made me sad to think how quickly time passed. It really seems like yesterday when the three kids & I spent our days & evenings outside (that is when seizures didn’t get the best of Jack). The kids rode their bikes, we jumped on the trampoline, danced outside, flew kites, drew on the road with chalk. Now as the years have passed, I’m left with memories of better & worse times. Better times because Jack’s environment was more controlled & he could be controlled, worse because of the multitude of seizures Jack had in those days. He literally had 100’s of seizures a day. Today, he averages one a month, what a difference. For years I prayed that his seizures would be lessened, my prayers were heard & answered. As I was riding to Mama & Daddy’s one evening, I was lead to snap a picture of a sunset. In this picture, you can clearly see the rays of the sun, but you can not see the sun.

It got me to thinking about faith. The poignancy of that moment for me was, you can see God’s works, but you can not physically see God. Even when we are at our lowest of lows, God is there, trust when I say that I have been there. Although it took 14 years for Jack’s seizures to significantly decrease, God answered that prayer for our family. Though Jack’s life & ours has taken a very sharp curve & it’s still uncertain whether or not Jack will be able to remain at home or a residential facility, that sunset picture helps remind me to lean on God & be fervent in prayer & asking for guidance & praising our Savior for his many blessings.

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…