If I Could Turn Back Time

I’m probably going to regret writing this, but we’ve had a great few days with Jack lately. Have there been moments of sheer aggravation? Yes! Have there been moments of demands like insisting on going to Chiba for Japanese food after I’ve cooked a full meal? Yes! However, I will take any of these moments any day over the violent, scary days & nights that we’ve had the displeasure of dealing with. Jack has slowly wandered back into the chat room life over the last few weeks though. He has mainly been watching others do the foolishness that they do like have terrible cussing outrages over politics & people, things Jack has zero knowledge in. As I have said in previous blogs, Jack is a know-it-all. In one of the chat rooms, Jack had to fill out a bio. He was asked what languages he speaks. Since Jack has been an avid Dora & Diego fan since he was a toddler, of course he speaks Spanish! The boxes were checked for English, Spanish, & guess what other language? He says to me, “ do I speak Mandarin?” Unless he’s been taking a Rosetta Stone Mandarin course, the answer is no. I replied to Jack, “well no”! He then informed me he does speak the language of the Asian culture & commenced to play a song by The Wiggles in which there were a few Mandarin phrases mixed in with the predominantly English song. How could I have been so dumb to not know my child speaks a foreign language & one as complex as Mandarin, fluently!

Last night, Jack was on one of the chat rooms doing a live stream. A live stream means he is rolling video of himself & anyone that is in this particular chat room can watch, comment, or talk back if they so choose. Usually when Jack goes live, he sings pop or country songs. On this night, Jack did something different, something that brought tears to my eyes & broke my heart. He played his guitar that really doesn’t make any sound (which is a wonderful thing for us & he doesn’t notice praise the Lord),he started singing kids Bible songs that I used to play for the kids when they were smaller. What was so gutting about this, is the people that are in these chat rooms are not nice people. They cuss worse than any man or woman I have ever played softball with, every other breath is a cuss & the chat room people are malicious with their mouths. They degrade Jack, tell him he’s a child, a retard, an idiot, the list goes on & on. He’s never played Christian music before while going live, I have to wonder why he did on this particular night. I thought maybe Jack was trying to witness to the creeps, but he doesn’t really understand that at all. I didn’t hear what anyone thought of Jack singing the Bible songs, I couldn’t bear to overhear-it would of taken a good day & ruined it. Soon after he sang, Jack was right back watching someone else in a chat cussing like a sailor. When I told him that wasn’t nice of that person, he said it was them doing it & not him. We have to remember Jack has no reasoning skills. We do try to instill values in him when we feel it is safe, but he never absorbs what we say. This is what I mean when I refer to Jack as to having grandiose behavior. He knows best in his mind. This is a clip of him singing one of his favorite Bible songs during his chat room time:

After Jack got what I refer to as his “pimp” glasses, he seemed to have settled down-this was last week. His glasses get me tickled every time he puts them on. I swear I think the reason he wanted them is because someone online told him he needed to have his eyes checked as a smart remark. And just because total strangers tell him something, he’ll do it without any regard to us.

Any type of anything out of the ordinary creates a downward spiral for him. This is why we don’t talk about birthdays or occasions. We don’t celebrate any type of event around Jack other than his birthday or Christmas morning. He has an appointment at Chapel Hill next week that I am dreading. I can’t prepare him for it by telling him a few days in advance because he’ll start acting foolish, but by not telling him in advance, he’s more apt to not go. I am totally stuck between a rock & hard place! Back to the glasses. Those things aren’t going to be anything but trouble for us. He wants them cleaned 24/7, never puts them back in the case, falls asleep with them on-what a nightmare. He called the poor people at the vision center for three weeks straight everyday asking when his glasses would be in, even was on a first name basis with the eye doctors wife! He called me & asked if I would go pick them up (which I had no choice), he then told me he would call Penny (the doctors wife) & tell her I was on the way!

The boy is really too smart for his own good. One of the mistakes I made in caring for Jack is that I did not ever tell him he was a special needs child. I think that mistake alone has given him a false sense of self. I regret that so much. I’ve written about how Jack thinks his girlfriend and/or wife should look like a Victoria’s Secret model. Jack doesn’t know that he does not have the mental capacity to date much less marry a woman who is not on his level. If I could turn back time (I’ll be singing that song in my head all day now), I would certainly try to raise Jack to understand he is mentally disabled. You live & learn & wish you could turn back the clock so often. Below is a picture of me right after I had Jack, 18.5 years ago. I had gone through a very difficult styling phase with my hair-I’ll never have short hair again by choice that’s for sure. When older folks tell you time passes by so quickly, believe them. Jack’s long list of health problems started on the day he was born, our lives with Jack started in fear, but this day seems exactly like yesterday. The emotions I was feeling in this picture are still the emotions I feel to this very day. It’s a look of “pluh-lezzz”. I was actually probably mad because they gave me a sandwich to eat right after I gave birth to a big ole baby-I don’t eat loaf bread, it’s nasty! I would also obviously have better internet controls. I think if we knew what we know now about how severe Jack’s behavior was going to be, I think we would of placed him in a residential home a long time ago, it certainly would of been easier before he became so much stronger. But things are always easier said than done, who knows if anything would be different if I had the knowledge I do now. Out of all three of our kids, Jack is the sweetest & also the meanest. It is amazing to me how one person can be both. As of now, Coleman is our self-starter & genius, Ava is the most compassionate & helpful. Coleman grew up without ever really watching tv until he was 17 years old. The first show he watched was Scandal, what a show to be introduced to-he’s been hooked on tv since. Jack on the other hand has always been a tv buff but that’s largely because he couldn’t do anything else due to seizures. And Ava has been our sports gal from the age of four & beyond. It is astounding how children that come from the same parents are each individually different. Children are surprising, they can all be mean & hateful, but it’s always entertaining. Until next time…

P.S. Here’s a story about the short hair. I have written about this before so don’t read if you’re already familiar with this story. I started out with a chic, short, shag cut that was super cute. Well, I went back to the same stylist for a shape-up. She was on the phone nearly the whole time while cutting my hair. I was pregnant with Jack during this experience thank goodness. The stylist received some news about a friend of hers that was involved in a motorcycle accident. I begged her to let me reschedule but she insisted she was okay. She may of been okay, but my hair was NOT! I left her place with huge gaps in my hair, uneven sides, it was so bad. I tried to rationalize, went home, washed my hair & pled to the Lord to please let my hair look decent when I dried it. It did not! I lie in bed that night wide awake thinking & fuming over a terribly expensive & an uglier than any haircut a two year old could give herself with kid scissors wondering what on earth I could do to get revenge on the stylist. Let’s just say I am so happy I was pregnant with Jack or she would of seen someone that acted like Jack does! I envisioned myself slashing her tires, putting sugar in her gas tank-I wanted to have a full-on Carrie Underwood moment. So instead of going to jail, I decided to make a bigger impact. I called her the very next morning & told her not to cash the check I had written her, I had canceled it. I also told her it was the worse haircut ever. At that point, there was nothing else to be done with my hair other than to scalp it & start anew. I guess having a bad haircut is better than serving time in prison over a bad haircut!

A different kind of emergency

I am no stranger to these walls. Our local emergency room was home for us many nights, especially when Jack was younger. Jack’s last visit in December 2017 was in fact in this very room where my Daddy lay a few nights ago.

Daddy is 75 & works hard. He started out his day helping Lee. They are doing some renovations on the farm market part of The Berry Patch. We are trying to become more efficient with our work spaces due to growing business that we are so thankful for. Afterwards, Daddy went home to cut wood. He & my Aunt (both live on family land) both have wood stoves that they heat their homes with. Daddy has been cutting wood his whole life. Later on that evening, he & Mama were eating supper & Daddy’s words were slurred. He was asking Mama a question & it didn’t come out plain. Suspicious of a stroke, Mama quickly asked him to smile, touch his noise with his finger, other skills that are recommended if a stroke is suspected. He did all of those fine, so Mama checked his blood pressure. It was in the low 200’s, which is not low at all. After the brief slurred speech spell, Mama decided to continue monitoring his blood pressure. It didn’t take her long to decide take him to the ER because the blood pressure monitor would not even register his blood pressure due to it being so high. Upon arrival at our local ER, Daddy was quickly taken back & received excellent attention at FirstHealth Richmond Memorial ER department. Daddy passed all tests, but his BP was at a steady climb, the doctors decided to keep him for monitoring. The highest read I saw was 237/77. Daddy is continuing to do well, his speech hasn’t slurred any more thus far. He is still an inpatient due to further digging into what could of caused what they are thinking a mini stroke.

Of course in full Amy fashion, while I was waiting at one of the longest cycling stoplights in our county, a man I recognized from seeing around town approached my car. He was asking me questions & getting agitated. He is a known troublemaker & I’ve seen him arrested on several occasions. I wasn’t scared because my doors were locked & my windows were up, I just know it was fitting for the crisis. My crises are never stand alone issues, they are always pieces of the puzzle that don’t seem to fit but oddly do in my mind because that’s just the circumstances that surround my life. I was so thankful when that stoplight finally turned green!

The last time Jack was in the ER, our visit there was due to one of his most volatile attacks ever. That visit required EMS & the police. I wrote a blog about that whole ordeal back in December 2017. https://cruelandunusualcircumstances.com/2017/12/08/current-status/

That ER visit transitioned into a several day stay in the PICU at Chapel Hill. Mentally, not only was Jack suffering, we all were. There were two stark differences in Daddy’s & Jack’s situations even though they were in the same ER room. Daddy was nervous about what was happening to him as were we, Jack was in a fitful rage. All I could think about when Daddy was in that room were all the different times Jack & I had been in that very room whether for rages, but mostly for long, convulsive seizures. The last time he was there, Jack was about three weeks off a medication we had waited nearly his whole life for, Epidiolex which is medical marijuana. Jack was involved in a trial through Chapel Hill. We always thought this would be his saving grace, it was not. The medicine (yes, it was actual medication), brought on side effects we never thought we would have to deal with on top of everything else. It opened him up cognitively but in a bad way, he was introduced to chat rooms during that time. He stopped eating, drinking, lost 25% of his already waif thin body, stopped urinating, worsening of seizures, stopped sleeping totally, terrible explosive behaviors, stopped bathing & brushing his teeth. All of these side effects were a possibility, but the medical team did not do a thorough job in explaining the possible interactions between the medical marijuana & the seizure medications he was already on. That was a recipe for disaster & a disaster it was. He was completely weaned from that potion & other seizure medications & sleeping meds became part of an already long list. Our hopes for a calmer future with Jack from the Epidiolex were crushed. I will say that it has worked beautifully in many Dravet patients, but a lot have had experiences similar to the one we had. You don’t ever know until you try, I am thankful we did, but we will never participate in another drug trial with Jack ever, ever again. Jack hadn’t had a rage in about two years prior to starting the trial. Makes me wonder.

Ava had to take over in my absence the evening Daddy went to the ER. Jack’s newest obsession food-wise is now fried chicken. Specifically, Bojangles fried chicken. I’m not talking about a chicken leg or two for supper, I’m talking about the whole dang chicken practically! That chicken is expensive if he’s eating that much. Well, I was at Walmart in the deli section & bought two boxes of their fried chicken because Jack wanted more. The Bojangles chicken boxes come with biscuits & no one eats those so it was such a waste & an expense, & Walmart is much cheaper. Let me tell y’all, Walmart’s fried chicken is the absolute best chicken ever. It is not greasy at all, it’s actually dry but that’s a good thing when it comes to fried bird in my opinion. That skin is so crispy, to die for! This is not good for me either, I walk by the chicken & have to pick off the crispy bits because it’s so good-I’m going to be big as a barn! No more egg & bacon sandwiches for now, he eats strictly fried chicken! So I fooled Jack into thinking that chicken was from Bojangles. He has eaten chicken from one end of the house to the other, crumbs are everywhere all the time. Jack FaceTimed me while I was in the ER with Daddy to have me call Ava (they were both home together) & have her vacuum the chicken crumbs out of his bed. Her response was, “he’s the master, so I guess I better” (funny/not funny). She had to straighten the kitchen & do Mama things. That always takes me back to when Ava was 4. I was hanging out clothes & was in the backyard with me. Ava comes up to me & says “Mama, I don’t want to be a Mama when I grow up, it’s too hard”! That made me laugh & made me sad, too. She recognized all of my stress at the young age of 4. Ava’s aspirations are to be a PA when she grows up. She’s so interested in health stuff, but she was really enjoying Daddy’s hospital bed while he was out for testing.

As if that wasn’t enough, as I was walking out the door to the ER, Lee started drinking. Drinking colonoscopy prep that is. Ava really was in for a treat of Mom-life. With Lee busy on the toilet, she had no choice! I took Lee for his test the next day, five small polyps were found, hopefully all will be well.

Although I am accustomed to stressful times such as ER visits, it never gets easier to stomach them, especially when it’s your parents. We are hopeful a cause can be found & these types of events can be prevented in the future. Meanwhile, I have to wonder why they keep the “I” & “O” side by side on keyboards. They drive me crazy, when I mean to type the word “in”, it types “on” & vice versa. Guess the inventor of the “qwerty” typing style couldn’t of foreseen we would be typing with two thumbs 99% of the time on buttons smaller than a chicklet! Until next time & the next crisis.

Throwing a Test and a Hit and Run

How would you like to have a limitless amount of confidence? An endless, extraordinary, 110% assuredness that you can fly an airplane without any training, you can defeat the strongest man/woman in the world, you could send a person to Mars without majoring in space studies? In some instances, that would be great, but it’s is a tough way to live & can be even tougher for the people living with you. It would make people not want to be around you. This explains Jack in a nutshell. He is so self-assured that he fell for the recent FedEx scam that was going around. He got a text from FedEx requesting him to call them about a package. He calls them without asking me of course, I hear most of the conversation. Jack tells the man he wants to setup an account, goes on with his address, email, then the man asks for a credit card. Jack gives him his Visa gift card number that doesn’t have any money on it, thank the Lord. The pretend FedEx people end up hanging up on Jack. His fears are null, he knows everything in the world. If he’s ever wrong about something, then his next answer was going to be whatever the answer was. His attitude is full of grandiosity, every bit of the confidence in the world is bottled in his DNA that has created a force so strong that Superman could not tear down all because of a number. That number is 18. Growing up & being active in sports, I thought a favorite shirt number had significance, that’s what major league ball players usually did. Their superstitions cause a lot athletes whether school, recreational, or college players think a special number help the athlete play a better game. Whether or not it does, that’s up for debate depending on who you ask. I was always number 7 because that’s the date I was born, I gave it up when I started playing softball as an adult since someone else wanted the number, which was fine. I’m easy going like that, I try to accommodate & help others. That’s really what life is all about in my opinion (I have some really terrible qualities, but this is my blog so I won’t slam myself too bad). Servicing others was a trait I learned in Girl Scouts & youth group. We were always collecting items for those without, picking up trash along side the road (this is where I got my largest scar), or visiting those in nursing homes that didn’t have family or friends. That last one struck a cord with me early on, I guess that’s why I have a soft spot for the elderly & older population. Most of my friends are way older (lol) than me, at least the ones I talk to on a regular basis. I’ve seemed to always have a connection with older folks.

The number 18 in a numerology sense is known to bring good luck. Some say living at a residence with the number 18 means you will prosper. I’d say living with a hellion (a.k.a. Jack) that is 18, means we will be miserable that has proven to be true time & time again. It wasn’t until the last three years that we became completely & utterly miserable in our homes. Years prior to current day, we didn’t lead such sad lives. Coleman & Ava needed us more for activities like for showing goats, 4H involvement, dance, sports & such, plus, Jack was more manageable physically & more compliant with requests & no where near as needy or strong as he is now. Lee & I had date night nearly every Saturday, that’s now changed. We rarely go out at night because he tends to have seizures during the evening hours now & gets more problematic at night, so we feel like at least one of us needs to be at home with Jack now in the evenings. Our anxiety is always through the roof if we ever go anywhere together. This has changed our lives tremendously. Marriage is tough for normal people, marriage can be a total train wreck for those with a special needs child, especially a difficult one like Jack. Often the sole care falls on one parent which can form resentment. We don’t have resentment for each other, only for our situation. We are ill & short with one another most of the time & probably come off this way to the rest of the world. Simply because Jack is 18, the world changed for him. In reality, turning 18 created an excuse for him to act the way he wants to & get his way. The other night, Jack requested yellow cheese to be brought to his lair. He loves to eat shredded cheese out of the bag. Knowing he wouldn’t eat the whole bag, I brought him the bag & a bowl to pour it in. He refused the bowl because he was 18. 18 year olds can eat like they want to & don’t need to be told how to eat. I tried to explain to him why it was nasty to eat out of the bag, he of course argued with me. I should of known better & not even suggested a bowl, what was I thinking? Y’all do not know how bad I wanted to cuss him out! After all that arguing he did, the cheese sat on his bed all night long, untouched.

Jack’s sleeping patterns have been disturbed for the last week. He’s been waking up shortly after falling asleep, in the middle of the night, & very early. Often times, disturbed sleep can be a predictor of an upcoming seizure, as well as are irritability & lack of appetite. The night after the cheese incident, I had already cooked supper. Jack states out of the blue that he wants the family to go out to eat. I tried to explain to him I had prepared a roast, green beans, & a kale salad for us. He got very upset, kept repeating “out to eat, out to eat” over & over. After I ignored his requests, he slammed his bedroom door. I called reinforcements in because I did not know what Jack would do next. When he doesn’t get his way, he often becomes violent. Lee’s Aunt & Uncle came & hung out with Jack. I knew I needed to stay away for a while, so I stayed in the living room while they visited. Jack seemed to be in a good mood after 30 minutes had passed so I went in his room. He came out & said he was upset with me. Talking very loving to Jack, I hugged him & told him I loved him & didn’t want him to be upset with me. Then I asked if he wanted us all to go to the Springhouse (a local pub), he agreed & was fine. Not knowing what was going to occur, Daddy came & picked up Ava. My parents were supposed to come eat with us, but we were afraid that would be too much. So no one got to eat the food I prepared. Jack wouldn’t of eaten it anyway because he doesn’t eat home-cooked food.

After getting home from his night out, Jack held me hostage in his room making me watch Scooby-Doo. Not that I don’t adore the gang, but I have other things I need to do. Jack is oblivious to it all except his needs. He thinks I have nothing to do but be his servant when I am home. Fetching this & that, watching whatever he’s in the mood for for the 100th time, listening to him sing, what have you. If he’s feeling adventurous, he’ll come into the living room with the rest of us, take the remote right out of our hand & turn the tv to whatever he wants, not caring about us at all. Not only does this disrupt our evening plans, but we are forced to leave the room except Lee or myself. One of us stays in there with him. If we don’t we are all targets, Jack sticks his feet all over us, even our heads, takes our blankets away, he’s just plain mean. This interrupts the family time we were trying to have with each other. This impacts our marriage & family unit. We are unable to share things about our day or enjoy each other’s company. I’ve never been in an abusive relationship with a partner, wouldn’t stand for it, but I do know what it is like. I’ve heard stories of women feeling scared to say no to requests or demands no matter how ridiculous or foolish they may be, walking on eggshells, apologizing for things you didn’t even do, afraid to laugh, scared to move, living in fear-that’s me. I am in an abusive relationship with my child, he is the abuser. Jack is the abuser of our home. He rules the roost, he is a bully. An 18 year old child tells us what to do & how to do it. It would be easier to kick Jack out of our home if he didn’t have a serious medical condition. There is no way on earth I would live in this type of fear if he were physically healthy. The abuser changes you. The abuser changes your outlook on life, your relationships with others, your relationship with God, your appearance, your interests, your leisure activities, your attitude, marriage, your motivation, your mojo, & so much more.

The icing on the cake after the above incident happened, I saw a picture of Jack’s former classmates from his kindergarten & first grade year that same night on Facebook. These classmates were all friends of Jack’s in school, he still talks about some of them to this day even though he hasn’t seen them in 10 years. These kids will soon to be graduating, their achievements in school & their personal lives are amazing, success is no doubt in their future & I couldn’t be happier for them & their parents, but I can’t help feel a huge pang of sadness. This should be our son, too. The pill would of been easier to swallow if Jack were well behaved with Dravet. The whole compilation of all the events in one night were too much. Talk about a night of frustration & depression. It’s amazing how one person with the same blood as Lee & myself has changed our lives. He is half of each of us, neither one of us are evil, nor have we done evil acts to bring this type of torture into our lives.

Let me tell you another story, this one is about divine intervention, this is simply an unbelievable story. Lee took Jack deer hunting this past year, Jack was able to shoot his first deer completely & utterly alone. He never once mentioned not being able to not see through the scope on the rifle well until about the first of January, note: he killed the deer in October. Suddenly, in January, Jack had a fit to go to the eye doctor. This was shocking to me because I usually have to bribe him to go anywhere. On the heels of a near outburst the previous night over eating out, I felt it necessary for Lee to go with us to his appointment at the eye doctor. Now there is nothing wrong with Jack’s vision at all, in fact, he has a very sharp eye, eagle eye is what we call him. When the tech & the doctor were asking Jack what letters were on the screen, he totally threw the test. If the letter were a “U”, Jack would say the letter next to it in the alphabet, “V”, a “Y” was a “Z”, which is pretty smart because I usually have to say the whole alphabet to get the next letter! If the picture was a dog, he would say horse even at the largest setting, plus, the dog was barking. It was very obvious he was there to get glasses without a need. The doctor talked to him & Lee about using a different kind of scope & was going to send us on our way without glasses. Jack was getting upset, you could tell by the look on his face. The doctor said no glasses needed & Jack started lightly kicking the doctors stool, that’s when I suggested glasses for the the computer only because I knew he was about to get violent. Thankfully the good doctor followed my lead & prescribed him a set of glasses. This has appeased him for now. The glasses he decided on are awful, but I don’t care. They look like something an 80 year old man from 40 years ago would wear. They remind me of an 80’s style pimp, he just needs a long fur coat to go with his new specs & he would be the John of Ellerbe. This is a picture of Jack & I at the vision center, he is worried to death about what I’m writing on those papers.

Back to the divine intervention part. While we were in with the doctor, one of our Berry Patch girls tried to FaceTime both Lee & myself which is unusual. Lee responded with a text that we were with the doctor. She started sending pictures of a vehicle that had crashed through our fence around the front of our business, she had the description of the people & a picture of the front of the truck, but no license plate. Said they were regular customers & they did not come in to report they hit it, basically a hit & run. Now we were in the next county over from The Berry Patch 30 minutes away to be exact. Jack wanted a happy meal from McDonald’s after his appointment. As we were pulling into McDonald’s, Lee says there is the truck that demolished our fence! And sure enough it was. I recognized both of them, the truck & picture matched our employees picture. I put my camera skills to good work & snapped a few pictures of their license plate so Lee can file a report if he decides to. What a coincidence that these folks hit our fence & we end up finding them! Never ever do we go to that side of the county unless someone has an appointment with the eye doctor & no one has had one in years, nor do we ever go to the McDonald’s there. I’d say that is a divine tale of divine intervention! The absolute craziest things happen to us!

So there you have it folks, our life synopsis. I don’t think any of you will be surprised by any of this. Every single one of these stories are true & have happened back-to-back, from one day to the very next day to the very next. We can be experiencing the absolute most heartbreaking day & there God is surprising us with something like the fence ordeal to take our minds off of our misery. The next step in this whole journey with Jack as I call it, is to get Jack’s psychological evaluation sent to the social worker, from there I am guessing we will being looking at homes. It’s so easy to type but so very hard to imagine. I guess the old saying is true, misery loves company-but in our case, misery loves crazy. Until next time!

Knock Knock Jokes and Bedbugs

Knock knock? Who’s there? You make me sick-that was the punch line! This was a knock knock joke that I recently endured which was not a joke. It was meant to tell me off & be cruel. Any guesses as to who did this? Jack is the answer. Knock knock jokes have always been one of Jack’s things. None of them are ever funny nor do they make sense, but since I am his parent, I laugh. It’s pretty hard to tell me a joke & get me to laugh. I’ve fake laughed many a time at foolish jokes men would tell to try to impress me. Mind you these men that were trying to impress me & my co-workers were practically on their deathbeds! As a preteen, I worked at a place where old men hung out sometimes. They thought telling dirty jokes to a 13 year old was cool I suppose, I was grossed out but laughed reluctantly at their crudeness. Where was #metoo when I was young? The men were in their 50’s-60’s (deathbed to a preteen) & had children of their own. I cringed when they came around. Now over 30 years later, my life has circled back to jokes, but the knock knock kind. Although Jack’s jokes are clean, this particular knock knock joke Jack told was meant to hurt me. Jokes have never been humorous to me, I prefer real-life situations. I’m the kind of girl that laughs at a funeral (it’s in a song but a true story), the girl that laughs at 2am in bed when the house is completely silent, the girl that can’t hold it together in public because something someone is doing gets me totally tickled. Natural humor, that’s what makes me laugh. The reason Jack told me this joke was totally ridiculous. Lee left a dollar bill on the counter that the end had been torn off. Immediately, Jack became intrigued with it, wondering if the bank would accept it. Instead of taking our word for it that the money could be used again, Jack calls the bank & asks the teller whether or not they would accept a torn dollar bill. They told him they would have to see it. I was then instructed by Jack to take the dollar to the bank. To get the $1 off his mind, I told him when I got home that I used the dollar at the gas station for gas. Jack got very upset stating that the $1 was his. He said that Lee usually gives him dollars from The Berry Patch-this is not true. Of course following the news of me using the dollar, he calls Lee to fuss at him for not giving him the money. Not knowing how to correctly express his anger, he told me the knock knock joke to hurt my feelings & that’s exactly what he did. He may not of known how to convey his emotions, but he got the point across that he was upset with me. Words do cut like a knife, especially when they come from your kids. It’s amazing how something as simple as a dollar bill can cause so many problems. We are usually smarter than that & not leave money or anything unusual out in plain sight. Lesson learned!

Make sure to watch the short video of a caregiver that has concocted a comical plan on how to manage being a caregiver to her husband, this woman is my spirit sister: https://youtu.be/5i8GnYzRmFg. Her plan is simple, well thought out, & sounds like it would be effective! Wait for the cartoon part of the video to come up, hilarious!

If you think I have bad luck, let me just tell you how good my luck actually is. I think about this everyday! I have always been a very private person up until I started writing blogs about our journey with Jack, so telling this is big! I try to be so clean, not have excess junk, don’t eat in my bed, & so forth. In mid-November, I found a bug in mine & Lee’s bed. This bug was shaped like an apple seed. The horror I felt at that very moment. Do you know what bug is shaped like an apple seed? A bed bug! My heart sank, I prayed & pleaded with God to protect our home from a takeover. I quickly placed the bug in a sealed jar & inspected our whole room, under the mattress, on the baseboards, everywhere-I am still doing this to this very day. Voicing my bedbug theory to my husband, he did what husbands do, “that ain’t no bedbug” I was told. Anything wives say, they don’t believe us. This is proof that women are always right, here’s how. The bug sat in the sealed jar through Christmas & New Year’s still alive, remember it was placed in the jar in mid-November. No food, no air, nothing but the cold glass. Finally, I had to know for sure. I drove the apple seed to our county extension office for definite confirmation. A few days later, it was confirmed that apple seed was definitely a bedbug. I have not seen any more bugs since & have frantically searched day & night everyday, even with it being the end of January I am still looking. I want to think we escaped the wrath of a bedbug takeover. I’ve read about & heard the nightmares about becoming infested with bedbugs. Not really certain where on earth it came from, I have speculations but of course none of them can be confirmed. It could of came out of a QVC or Amazon package, an article of clothing I purchased, I really don’t know & that is scary! As a little girl, I was the poster child for lice. Again, my parents & sister like myself are all neat, tidy, & very organized people. In elementary school, I was friends with all, this was before junior high when clicks were formed, I was part of all friend groups. I still wanted to be part of all friend groups throughout school, but learned quickly that’s not the way it was. I hung around all different types of kids & genuinely loved being around everyone. I know my Mama will die when she reads that I’m writing about our lice ordeals. There were friends of mine whose parents did not treat the whole house like my Mama & Daddy did, they only treated the child’s head. If you want to get rid of those suckers, the whole house along with everyone’s head had to be smothered in RID (lice shampoo) & everything else had to be washed in the hottest of water & smothered in plastic! Then my Mama would make the embarrassing phone calls to inform anyone that was in contact with me, that I had lice. Lice treatment was a BIG deal at our house. My poor parents would work all day & come home to work endlessly to ensure we got rid (pun intended) of them. Curtains, stuffed animals, comforters, quilts, pillows, baby dolls, were thrown in plastic bags to sit for a week or so to kill any lingering lice. There were times I’m sure my Mama thought about tying one of those plastic bags around her own head when she discovered I had lice! Looking my head for lice became an obsession for my Mama that I loathed. I had tons & tons of hair. There were times I had slick, straight hair & other times that my hair was like nighttime drama queen, Donna Mills-this was the hair I obtained when I rode the school bus to the beauty parlor for a perm, remember, this was the 80’s, big hair was the thing. However the saddest moment came when I was in 3rd grade. Not only did I have one of the worst teachers I think in history of teaching, my Mama made me go to that same country beauty parlor & get all my gorgeous Donna Mills hair cut completely off. I was mortified! Not only was I super duper skinny (before it was a in thing), I had huge teeth that I hadn’t yet grown into, then to add to it, I had the ugliest hair in the school! Third grade was the absolute worse school year ever. Just something else to be picked on about! I don’t blame my Mama for this extreme decision, I would of done the same if that were Ava. To keep Ava from making us go through the lice scare on top of everything else we deal with, she was pretreated daily with a lice deterrent. We avoided lice throughout Ava’s school years (knock on wood), I felt like we had won the lottery & now after all these years of prevention & protection, I find a bedbug in our home. With all this said, I feel like I have some sort of luck, two months have passed & no more bedbugs have been spotted. Thank you Lord!!!

On this particular journey, I have learned that bedbugs & Jack have a lot in common, they both are resilient as all get out. They can both not eat or drink for weeks on end & not use the bathroom for that long lol. Nothing gets them down, they both are the toughest beings on earth-stronger than the Terminator. The lottery is up to nearly $400 million, I’ve got to get me a ticket, but if you see me at the store don’t tell me a joke, my jaws are tired of fake laughing. Who out there really likes jokes any way? Tell me a funny story instead, one that will make me laugh at 2am when everyone is asleep, Lee loves that!

Serenity Now!

Where does one go for a little rest & relaxation, typically their home to binge watch Netflix or to grab a nap. Our homes are supposed to be our safe haven, the place you can truly be yourself, be the most comfortable. My current safe haven is inside my car at my home. I hate so bad that I can’t go inside my house & enjoy peace & quite. Jack’s morning a few weeks ago started off rocky. He was awake messing with something throughout the night (I have a hidden monitor in his room), then was up at 6:30am using the bathroom, then back up by 9:30am wild as a buck & running through the house like a Tasmanian Devil! The morning prior he tried to rip my bathrobe off of me. There is not enough coffee in the world to help get me through mornings with Jack. This particular morning, he wanted eggs & felt he could cook them all by his lonesome. As I was giving instruction on what to do, he reminded me that I don’t tell him what to do. 18 year olds don’t need telling anything. Now of course this IS the typical mindset of an 18 year old, most just don’t say it out loud to their parents. So after getting talked to like a piece of trash, Jack couldn’t cut the butter to put in the pan. Think about that a minute. This child who is literally strong as an ox could not figure out how to slice the stick butter to make it go into the pan, important side note, he was using a butter knife (I ain’t no fool). Then of course he needed help, go figure! An 18 year old actually did need my help is what I wanted to say & stick my tongue out at him, but again I reiterate…I ain’t no fool, that’s just asking for trouble. Next, Jack finds a duck call of Lee’s & goes outside in only a tshirt & underwear to call ducks. The temp at that time was around 40 degrees. Jack is oblivious to temperatures, often going places in 30 degree weather in shorts, tshirt, & sandals or barefoot. Then it was time for meds which he refused. It’s getting harder & harder to get morning medications in him. He’s like a bull in a china shop in the mornings & has a grandiose way of thinking that he’s all that & doesn’t need them. All of this in a mere hour!

Each of the above reasons are a list of many as to why Jack is under our legal guardianship, but it is amazing what all he can do. He is too smart for his own good. I kick myself every single day when I think of everything I did to help Jack’s enhance education. Not knowing what Jack had until he was at the age of 6 & even then there wasn’t a lot of information out there about Dravet, I did everything possible to ensure Jack received the best our area & beyond had to offer in helping him develop as normally as a child his age would. There were endless appointments with not one but two speech & occupational therapists, driving over an hour for sensory occupation therapy twice a week, same for biofeedback which was supposed to help treat seizures & behavior…didn’t help either condition, multiple tutors, therapeutic horseback riding, music therapy, acupuncture, the list goes on & on. I wish I would of had the insight then when I was running myself ragged shuffling three kids to & fro, I helped create a child that is really too smart for his & our own good. I worked hard on Jack in so many areas. Hindsight really is 20/20. I have to wonder if Jack would not be as intelligent without my efforts? He could honestly run a business of some sort I’m sure. He calls people all day long. Don’t ever let him overhear a conversation if it involves needing something, equipment not working correctly, questioning business hours, he WILL & does call them. It’s all day long that fella is calling someone. He’s been wanting a house key made, we don’t want him to have one due to the fear of him using it to leave. Lee talked with the local hardware supply & asked if they would tell Jack their key machine is broken. Every now & then Jack starts up about wanting a house key & starts calling the hardware store. Everyone in town has been warned, don’t tell Jack anything unless you have talked with us first! This is one of the greatest advantages of small town living. I really do love our hometown.

About two weeks ago I had a day without anything to do. The Berry Patch (our business) is slow this time of year, there is no need for me to be around right now. I have cleaned out some of Mama’s things over the last few weeks because organizing & clearing clutter is one of my passions. Morbid to think of, but Mama made the statement she wanted me to come help her get cleaned out before she dies so we don’t have so much to do when that time comes, the correct term for this is called Swedish death cleaning. Now I don’t think of it that way, I simply say I am only cleaning out! When I started, she got overwhelmed & told me to wait until she dies to finish-she can’t take it lol. No, she’s not sick, she’s a planner. I am forever selling her stuff on Facebook. People ask me all the time how big is my house, where do I get all this stuff? It’s all Mama’s! There is a lot more to clean out, but I didn’t want to do that on this day, wasn’t in the mood. We all have days when we don’t want to do anything, we all deserve it & need it. After Jack’s caregiver arrived & helped me get Jack more settled, I did a few errands & ate lunch with Lee. Since I didn’t have anything else to do, I sat in my car because going inside meant Jack would harass me or there wouldn’t be any peace, either he’s singing extremely loud or playing the TV loud. I’m thinking an RV in the backyard might not be a bad option, I would at least get to lie down, maybe take a nap. It’s pitiful actually when you think about it. Going into my home is not a place of serenity. I find myself screaming in my head far too often inside my own home like George Costanzas Daddy from Seinfeld, “serenity now, serenity now”! My car isn’t such a bad resting place though. At least I can listen to the radio, listen to the birds, but forget going to sleep. Going to sleep in a car is one thing I’ve never been able to do, must be because I’m not a man??? I have heated seats should I get cold. It smells nice-I’m really reaching here! It’s not home & it shouldn’t have to replace my home.

It’s days like that that I would not have a problem with sending Jack to a residential home of course this is said tongue & cheek. The other night he screamed at me from his room & said in a very angry tone, “Mama! I’m gonna get you”. Immediately my heart sank. My first thought was he found out about my blogs. This is like one of my biggest fears outside of Jack himself. Not sure what was wrong, Lee & myself reluctantly rushed to his bedroom. He was upset because I had fixed him Sunkist to drink when he requested Ginger Ale. A). He did not request any drink just asked for something to drink, B). He drank all of the Sunkist before he fussed at me. Jack is like the Queen Grimhilde (you know, who’s the fairest of them all?) from Snow White. We are forced to comply with his demands, forced to lie about situations like the poor mirror from Snow White. Jack sings songs & asks who sings it better him or Keith Urban, him or Lady Antebellum, him or Carrie Underwood. And if we don’t answer correctly, there just might be a “special” apple waiting for us…if you know what I mean, & unfortunately, there’s no prince to kiss & make it better. If anyone needs me during the week in the winter, you can find me in my car. Maybe I’ll start doing facials, mani’s & pedi’s in my car!

Most of my blogs are written over a period of 1-2 weeks. One reason is that I don’t have a lot of time to devote to blogging, another is Jack’s status is ever changing & there is so much to add each time I find a minute to sit down & concentrate on blogging, I also dislike writing. In school I would wait until the very last moment to begin working on a paper, even a research paper that typically takes weeks upon weeks to do correctly. I would rather of been playing in the gym, running errands for the teacher, anything but school work. I liked the socialization of school, just not the work. I didn’t get school work, diagramming sentences & word problems never made it into my skull. The teachers might as well of been teaching me Latin. If you ever find any typos, please forgive, I often write when a lot of you are asleep.

The above paragraphs all happened the second week of January, we are now entering week four of the new year (longest month ever), some positive changes have occurred that I am excited to report. A lot of people put down social media platforms, I, however will forever be grateful for Facebook. Because of Facebook I have been able to write blogs to keep those that are interested in our journey with Jack abreast, friends have been able to pray specifically for certain situations going on with Jack, & one of the biggest burdens we have had to face to date was just checked off our list because of a post I recently asked Facebook friends about. One of the hurdles we are challenged with in Jack’s care is getting him to the doctor, he flat refuses to go most of the time unless he is sick & really uncomfortable. I asked a few weeks ago if any of my friends knew a psychologist personally in hopes I could convince the doctor to come to the house & give Jack an assessment in the event we do place him in residential care. Jack has to have a psychological evaluation so the social worker will know what type of facilities to point us in for permanent care for Jack. The evaluation is a guide for the professionals. One dear friend of ours contacted her psychologist friend, placed me in contact with him, & the evaluation was completed! How amazing is that! This is something I have prayed & prayed over. Jack was very cooperative during testing, it went off without a hitch. Insurance didn’t pay since it was not an office visit, but it was worth every dollar-a bunch of dollars it was!

Later that evening after Jack’s evaluation was over & done with, Jack asked Lee to help him put his socks on-as smart as Jack is, even tasks as simple as putting a sock on is extremely difficult for him. Jack looked at Lee & said, “will you always be here to help me?” Talk about a reason to make you cry & make us feel like terrible parents for doing what we were forced to do with the evaluation. That morning prior to the doctor coming out to the house, Jack was a Tasmanian Devil. After the testing, he reached a level of calmness we haven’t seen a quite a while, keep in mind his calmness is not the same calmness you experience. He still called my name 5,000 times that day-when he is calm, he still worries the complete sanity out of me, but he was chill. We had to increase one of his seizures medications due to the increased seizures. The seizures he was experiencing prior to the medication adjustment have calmed as well, he is still eating like crazy which is great. I’m just not sure how long this medication adjustment will last with his increased eating, we may have to taper up again. Around the same time as his evaluation, Jack became obsessed with my “cuss-said” washing machine, suddenly he’s wants to learn to wash clothes which is not a good thing. Before you start messaging me telling me that’s a good start, teach him how, etc…don’t do it. Jack will not listen to anyone. He thinks he can go & put his clothes in during a cycle, paying no attention to what cycle the clothes are on. It is a fancier machine with electronic push buttons I guess that’s why he’s become enamored with it, but I’ve had it for over six months & his fascination has just recently begun. His mind…I would love to go inside of it one day. The lid locks once the machine is powered on (which I find silly by the way), so in order for him to open it, he has to stop the load. He throws in a shirt or a pair of socks. The other day he put in a pair of his pants while I was washing sheets. When I got them out, they were dry as a bone because they were put in during the last spin cycle. That boy is so infuriating! I told Lee I’m going to have to start washing a load of clothes at night after he goes to bed & hang them out in the mornings, start unplugging the machine & tell him something is wrong with it. He thinks he can wash one shirt & that be okay. The things this child gets into & obsessed with drives us nuts. What will he be obsessed with next, working at The Berry Patch? Yikes! He woke up at 8am this Sunday morning (01-19) & started calling everyone in the world. When I tried to reason with him that some people may be sleeping in, he simply ignores me & continues calling everyone. Jack’s birthday is not until August, he is already searching for gifts for his day of birth! Making lists & sending me suggestions. The Santa list will be sent soon! His mind is never at peace. As a result of his overworked mind, mine has now become a spin cycle, except I am thinking about what he may do next, am I prepared if he tries to start an altercation, are his meds fixed correctly, how will I convince him to take his meds, the list goes on & on.

There are so many prayers I have for Jack; no more seizures, no more violent outbursts, better reasoning skills, a calmer demeanor, & acting like Mickey Mouse instead of the Tasmanian Devil to name a few. I really don’t see how a group home will house him as active as he is, as medication resistant & sensitive as he is, as needy as he is. It hurts my heart knowing what they will have to do to contain him, but it breaks my heart too nearly every moment of day with him home because he can be so mean, sassy, disrespectful, & violent. As a result of this described behavior, Lee & I are forced to eat lunch out everyday. If we try to eat at home, Jack finds some reason to worry himself & us at the same time. It could be for batteries, a gift card, or he tickles us or give us knuckle sandwiches, there is always some type of annoyance. Sounds like a delightful way to eat lunch, right? His room looks directly into the kitchen & we all know the kitchen is the main hub of the household, if he sees you in there, he’s calling you or talking to you constantly even when his caregiver is in there with him. Just a few days ago, I was preparing to eat my lunch in my car in the next town over when I got a call about Jack, he had locked himself in his room because his caregiver couldn’t find a 9 volt battery that Jack required for his metal detector. My intent was to eat lunch in my car, return something to Belk (story of my life) & get Ava from school. Instead, I flew back home unsure of what Jack would do. Whole day ruined, but crisis was diverted, thankfully! This evening, Lee was supposed to bring Jack a lemonade from The Berry Patch (mind you he has three drinks opened already on his nightstand), Lee forgot. Jack got very upset, we really thought we’d have a fight on our hands. I went to console Jack & encourage him to go to Sonic for a lemonade, he could even press the red button I told him. He agreed. After getting his order placed, guess what the attendant said? We are out of lemonade-Berry luck at its finest was showing off! Surprisingly, I didn’t end up with a black-eye & he ended up with a sweet tea with lemon-how they gonna have lemon for the tea & not lemonade???

In my car I do can so many things. I can cry, sing, listen to my podcasts, pay bills, blog, eat, pray, pluck my eyebrows (best place for it), decompress, & achieve a smart part of “serenity now” all without leaving my yard. I’m thankful for my car even though it looks like a gypsy wagon & has a large crack in the windshield , it gives me solitude from a very stressful, hectic home. So if you see me sitting in my parked car doing any of these things, mind ya business 🤣! If the below statement isn’t true, I don’t know what is. Describes my life. I happened to see it on a friends Facebook page as I started writing this blog.

Blue Christmas

Christmas is either a joyous season or a sad season, hopefully it was joyous for you, but for some, with the passing of loved ones or no family or friends around, it can be a tough holiday to get through. This Christmas season for me was a particularly Blue Christmas as Elvis so sweetly & sadly made into a melody. Christmas Eve felt different for me. I was iller than a hornet, really filled with anticipation of what the day could potentially bring. I wasn’t sure if Jack would show out or have a seizure, he didn’t-saving all of that for Christmas day. Christmas Eve went well if you consider worrying every single moment a great thing. Jack was sassy & demanding. At noon he ordered me to wash his bedding before Santa arrived. His request came too late in the day for this, if you’ve kept up with my blogs, you know I hangout all of our clothes & I have a “cuss-said” new washing machine that takes an hour or more for one load & the clothes would not be dry by dark. I somehow reasoned with him that it would be best to wait another day, miracles do happen! Jack’s main caregiver was able to stay with him while the rest of our family Christmas Eved at Mama & Daddy’s that evening. This isn’t the first Christmas we’ve celebrated with everyone excluding Jack, we’ve done this for the last few years. There is way too much going on to take Jack anywhere or have more than two visitors at our home at a time. Exclusion is a necessity sad to say. Nothing would make me any happier than to see our whole family have get-togethers & everything be normal. One thing I love to witness are families together & having a good time, the next thing I love to see are teenagers hanging out having good, clean fun. It always makes me sad for our family & for Jack knowing that he will never get to experience this. One time (and I mean one time only), Lee & I took all three of our kids & a family friend to Dairy Queen one Sunday evening. All four sat at a table together while Lee & I sat separately, we sat back & watched. Their togetherness, smiles, & laughter brought me so much joy. I think about that night often & wish there could be more.

All Christmas Eve day, Jack with his infinite amount of computer smarts found the number for the NORAD Santa Claus tracker. He called those people 500 times on the 24th questioning Santa’s whereabouts. I can’t believe they didn’t block his number! I was really worried about Christmas Eve/Day. I just knew Jack would fight sleep per his usual, but he drifted off fairly easily & stayed asleep until 7am. He woke us all up ready to see what the jolly old man left for him. Jack was so polite & cordial on Christmas day, using manners that I haven’t seen in a long time…there was a reason for this as I will explain later! Jack enjoyed his Christmas gifts, loving his Pokémon treasures the most. Not sure if Coleman was pleased or not, one of his gifts was a patio set for his apartment-getting old is no fun! One of Ava’s treasures was a suture kit-she aspires to work in the medical field. One of the best gifts I received was the return of the Elf on the Shelf into his box!

As an 18 year old, my idol was Martha Stewart. I looked forward to watching her show everyday & hearing her famous quote of “it’s a good thing” after a particularly beautiful masterpiece whether a flower arrangement or a perfectly prepared panna cotta. Martha was the one who taught me what a boning tool was-Google it, it’s a real thing! I even tried to mimic her look around the age of 22 with her hairstyle.

As Lee & I were planning our wedding, Kmart came out with their line of Martha Stewart home-goods, I was over the moon. Our bedding & bath linens were all Martha’s. Martha taught me a thing or two about cooking, organizing, horticulture, & she helped develop my love for the perfect denim or white blouse (which I’m still on the hunt for). There were segments of her show that I always disked though, the crafting & sewing parts. I have never been a crafter or seamstress, never will. My Mama & sister can craft up anything & can draw beautifully, Mama can also sew like a Vietnamese sweat shop worker. I on the other hand can not do either. What a disappointment! I tried to keep my house like Martha would, neat without lots of extras. My ideas of decor are a few nice pieces, an unusual lamp, & photographs of the kids I have taken through the years. I don’t like “stuff” just to have it. The decor in our home has to be meaningful and/or beautiful to me. As I watched Martha over the years & into the early years of our marriage, I planned on entertaining just as she did with family & friends. From preparing an elaborate meal or a party with heavy hors d’oveures with libations, that was going to be a reality for me I just knew it! One of my biggest dreams was the purchase of a Christmas party outfit to wear at said party. The said party would of been an elegant soiree thrown at our home. Of course, this became a fictitious joke in our family as I was only able to host one Christmas Eve party at our home & that was when Coleman was two. Jack, age one had recently began the ketogenic diet as treatment for his seizure disorder, the diet was working perfectly & our lives were calm for the moment & that was my one opportunity to throw a party. I loved entertaining & hosting this one party! Now, when Mama, Jodie, & myself are out shopping & see something sparkly (we are all fools for sparkle) we deem that particular garment as our “Christmas party” outfit, which needless to say has never came true! We have always shown up at Mama’s for Christmas Eve & Christmas day in our regular clothes such as blue jeans & perhaps a festive red sweater, this year my sweater was a fancy cowl neck camo print & you can always count on Lee in his Berry Patch shirt. I don’t even dream of a Christmas party outfit any more. Sequins still put me in a trance, but they no longer hold the magic they once did for me since I know this is “party” will never happen.

Back to reality, Christmas Day was actually easy, but we experienced the calm before the storm. Jack was extremely well behaved the whole day, amazingly so, using manners we hadn’t seen in quite sometime. Later that afternoon, we all went to Mama & Daddy’s for Christmas dinner, leaving Jack behind with his caregiver yet again. We had a great meal & played Pictionary, what a fun time we had with my sisters family & ours. Lee & Ava went home separately since they go to bed early & Jodie followed behind to take Jack his Christmas gifts from her. While Jack & Jodie were visiting, Jack had a seizure. He’s been way overdue for a big seizure as I call them, a full on tonic clonic convulsing one. I find the more big seizures Jack has, the better he behaves in the long run & the better he eats. The seizure builds & builds that it makes him so crabby & causes him to have a lack of appetite as well. As I was on my way home to see about Jack during the seizure, I prayed that he would not become violent afterward since that is a new symptom we have unfortunately seen this year. He did in fact do just that. Ava was frantic when she called me as I was about to pull into the house. She told me Jack had punched Lee while Lee was trying to get Jack up from the floor. Violence in the postictial stage (after a seizure) can be an occurrence-wouldn’t you know it would be just our luck! After getting Jack to his bedroom, no further than the floor, he acted like he was going to become aggressive again. So I did what any woman does prior to a physical alteration, I prayed & took off my earrings. Dazed & confused from the seizure, I was able to convince Jack that he needed to let me help him onto the bed which meant me picking him straight up off the floor by myself onto the bed. My back paid for that the next day. I called Jack’s caregiver & Lee’s aunt & uncle to come over in case we needed backup in the event of another violent outburst. Watching vigil & scared to death at the same time, Jack awakened in a good mood with no recollection of the events that had transpired. He took his evening meds & was soon back to sleep, I thought he was going to have a good night, I was wrong! A few hours after going to sleep in his own bed, Jack came & got into ours-I had not even been asleep yet. I didn’t sleep Christmas Eve night due to getting Santa stuff ready nor Christmas Day night due to Jack getting in our bed. He thrashed & jerked all night long, even punching me in the head several times. Finally at 4am, Lee & I got out of our bed & went into the living room where we waited wide awake & wondered if Jack was really asleep or planning an attack. Thankfully, he was really asleep & slept until noon. Lee had to leave to check on Berry Patch stuff, I was laying on the couch with the remote in one hand & mace in the other. What a terribly awful way to live.

The rest of our holiday week wasn’t that bad. Jack is currently on an eating binge & eating anywhere from 8-12 fried eggs per day on bread with extra mayo. With this eating binge, I know there is a growth spurt occurring. His medications are being metabolized differently now that his appetite has kicked up. The myoclonic seizures that once plagued his every moment of the day & night have returned. These types of seizures for Jack involve his head dropping & upper body losing control for a split second. Imagine if you were falling & you catch yourself, that’s what it looks like. For the first time ever, Jack has started noticing his body doing this. He has never consciously felt a seizure that I am aware of. I didn’t tell him what it was, I explained that he was probably cold because he can be very dramatic-not downplaying the seizures because they are very scary to us. I can’t fathom what his brain & body must feel like. So then there’s that statement. You’ve got someone with a mental & physical disorder as severe as Jack’s, how can you not blame his poor brain for doing crazy things, especially when he doesn’t have reasoning skills nor understands his condition at all. Now with the old seizures returning, Jack is going through a medication increase which is scary because the side effects of more meds is not “a good thing”. Many Dravet parents say they see negative behavioral changes during this type of increase, but also with the increased seizures comes an increase in poor behaviors so it’s a damned if you do/damned if you don’t situation. It has always been a strange phenomenon to me as to why Jack is so nice & kind the day of a seizure. Everything is please, thank you, can I help you, he is so very complex, then as a seizure builds, he can be so mean & hateful weeks prior to it. Jack also had another seizure this week, he went months without any big seizures & he’s now had two in the last week. Thank goodness he did not get physical after it, I had a whole team praying for us as soon as he came out of the seizure.

Of all the things Martha taught me, she never taught me how to deal with what we have been going through for 18 years. I thought I was destined to be so much like Martha. My Martha Stewart coffee table book has become a distant memory that hasn’t been opened in about 18 years. The life I thought I would be leading is also a memory of yesteryear. Maybe “it’s a good thing” I didn’t follow Martha so closely as she ended up in jail-although jail sounds like a better option than the proverbial jail I’m living. Martha made a comeback in a big way after her time in orange. She & Snoop Dog have a hit show that I don’t ever miss! Perhaps I’ve got a big comeback headed my way!

I know I could protect Ava with everything in me if need be, but if you think it could potentially actually kill you, then it’s time to know when to fold ’em. Maybe that’s why this Christmas felt so different for me, in the back of my mind, it felt like this would be the last time all three kids would be under the same roof at Christmas. Where Jack’s roof will be, I don’t know. Calls have already been put into place. The one thing that has held us back from exploring homes other than the obvious of not wanting to relinquish care of Jack, is getting psychological testing. I can’t get him to the doctors office to have the testing performed. The testing allows the social worker to guide us to the type of home Jack would need to have placement. Luckily, a friend has put me in contact with someone that is willing to come out to the house & we can pay him privately to test Jack. The endless array of paperwork will soon begin, the countless questions from healthcare professionals will start, the pit in my stomach formed already. How will this whole scenario go down plays in my head 24/7. My mind is never free. Every thought revolves around Jack. Every decision I make from going to the grocery store to planning a night out involves thinking about who will be here with him, who can I call for backup if something goes wrong, even my dreams are all of Jack. I know other people have dealt with this type of situation, I know there are other people in more dire need than us, but the knowledge of these facts does not make moving forward any easier. We’ve done the best we can, but Jack is stronger than four men combined. That’s right, my 5’9, 125lb. bedridden fella could whoop any mans tail. I try to envision a life with Jack in another home, I can not. It hurts my heart to know he might not be a permanent being as I walk past his room everyday. Will he ever speak to us again when & if this move occurs. The what-ifs in this situation are killing me. This whole ordeal feels like mourning a person that is still with us. Life may be safer, Ava will feel more secure, but thinking of someone else caring for someone I have devoted my heart, my safety, & my soul for every single day since birth is crushing. Knowing that there are people that are not going to treat him well is also another concern. I want to be like my Mama & Daddy so bad, I just want to go home & watch Andy Griffith & chill, this is all too, too much to deal with. This is “not a good thing”.

Cry Pretty

I love the song Cry Pretty by Carrie Underwood, what I don’t love is knowing what living those lyrics are really like. What a week we’ve had! No sooner than I had literally just published my last blog post of “Satan’s Evil Spawn”, we had an event with Jack. Ava & I had just walked into the house, she from school, Jack’s caregiver was in his room with him. Ava & I were going to have a chill afternoon since it was raining. Our afternoon (we thought) was going to be a Christmas movie, snacks, & laid up on the couch bundled in our favorite blankies. That evening we had dinner plans with some family friends that were coming from out of town. Mama, Daddy, Lee, Ava, & myself were going to meet our friends at a restaurant two counties over. Of course those plans got blown out of the water by Jack. He can usually foresee when we make plans, I think he is related to Dion Warwick & has some psychic abilities. We never mention doing anything extra because he gets out of sorts, only about 25% of the time are our plans successful. The problem that occurred was so embarrassing & disappointing to me. Something yet again I thought we would never have to deal with. As Ava was preparing her snack for our relaxing afternoon, Jack had an explicative episode. That “cuss-ed” Elf on the Shelf left some Elf on the Shelf cereal the previous night. Jack had the cereal in his room, Ava wanted some. Jack finally relented sharing with Ava, but then he wanted some. After Ava fixed a bowl of cereal for him & delivered it to his bed, he told her he wanted milk, not cereal. When his caregiver & Ava both told him he requested cereal, not milk, he called them f***ing liars. My first thought was Jack could get violent if he’s getting this angry over milk & cereal. I immediately had Ava call Lee home to help in case he did get violent, cleared his room of everyone but myself & tried talking to him about different things to get his mind off what had transpired. Jack immediately started hitting his mouth with his hand, wondering if God would forgive him, & of course arguing that he was correct, not them.

Jack has never heard Lee nor myself cuss, ever-although there have plenty of times I would love to at him. This was not a behavior he learned at home, unfortunately, he learned such language on the chat rooms he was so heavily involved in at one time. It is so disheartening to know that this is something else that we may have to start dealing with now. I can’t tell you how much hearing Jack say that broke my heart. Now you may cuss on a daily & use the f word all the time, but I don’t. I have to be real mad & get really hurt to cuss, like the time I got a line-drive to the thigh while pitching a few years ago. Neither Lee nor myself have ever had any of the kids say terse words to us before, not the I hate you, you’re a terrible Mama/Daddy, nothing like that-although they may of wanted to. This was truly a shock to not only me, but Ava. I’ve got a 14 year old that is not introduced to this language in our home & I am not happy about that.

Over the last week, Jack hasn’t been eating or drinking at all yet again. This is a continuous cycle that has been a chronic issue for him over the last few years. He also hasn’t had (disgusting to discuss I know), a bowel movement in over three weeks. On top of that, he usually only urinates once a day, if that. He takes a handful of medications & supplements twice a day, the medication isn’t being properly processed by his body. It’s in the actions of bathroom visits that helps filter the toxins from the body. All those medications keep piling up & piling up with no where to go due to his limited potty visits, which leads me to wonder if that too attributes to his ill as a hornet nature. Many of you know Jack has had a lifetime of seizures, with his earlier years plagued with thousands & thousands of seizures, much of which were hundreds a day, he’s had nearly every seizure type there is. Seizures are so tricky, random, & strange. Did you know a seizure could be in the form a sneeze, cough, or laugh? It is not always the full body convulsing with unconsciousness you see on Grey’s Anatomy. I had been noticing Jack picking at his bedding for two days, appetite even more suppressed than usual, lack of fluid intake, fatigued, more irritable than usual, he was confused, speech was more garbled than usual, a delay in responses, & a strange look in his eye (some symptoms of those having a stroke). Years ago before one of the medications he takes that was developed strictly for Dravet patients, Jack often had NCSE which stands for non-convulsive status epilepticus, this is any type of on-going seizure that is not in convulsing form. NCSE in Jack’s case most often occurred after a grand mal seizure. He would repeatedly blink, drool, was semi-conscious. Once Jack began the medication developed for Dravet, those types of seizures were eliminated. When those seizures occurred, we would have to go to ER when Jack had those which was fairly often to break the seizure with rescue meds that home rescue meds could not. If we didn’t take him in for emergency treatment, the prolonged seizure would last hours or days. It’s been about 7 years since Jack has had an ER visit due to this type of seizure activity. I videoed Jack picking at his bedding after his ugly word outburst & asked fellow Dravet parent friends what they thought was going on. They all agreed with what I thought, NCSE. I thought he was in some type of seizure status, but it had been so long, that I completely forgot about NCSE. Only an EEG could confirm it, but I’m pretty sure he was in that state. I have been thinking he’s getting sick, so I started him on an antibiotic to help curtail any sickness that may be brewing. Between the elf on the shelf & whatever is going on with him internally, he is wiped out-he’s been falling asleep during the day & that is so out of characteristic for Jack. Although he hasn’t mentioned anything about being sick or not feeling well, I can tell he isn’t up to par. Going to the doctor is out of the question, I think he would flatly refuse, so I do the best I can to treat him at home. Below is the video of Jack messing with his bedding. What he is doing makes no sense & has no rhyme or reason.

Progress was made in the bowel department after I administered a laxative today. Thankfully, he is feeling better & has started back eating just a little more. For the past three days, he has only ingested two cups of applesauce & those had to be fed to him because he has been too weak to do it himself & also, so disinterested in eating that he didn’t want to do it himself. His eating for the last few weeks has been very little. I guess his tummy has been hurting from the backup that he hasn’t had an appetite. And Jack doesn’t have the sensors we do that tell us when we are hungry. Can you imagine living like this? It’s sort of like dealing with someone that is anorexic with the refusal to eat, then a bulemic when he does decide to eat (which is rare) because he purges on whatever he does decide to eat. There is so much going on just with him, that it will make your head spin. The only time I can get him to go to the doctor is once a year for his neurology checkup.

What Jack has done upset me beyond. When he acts ugly, it hurts me to the core. I get so depressed & down in the dumps when he gets violent or now talks ugly, that it can take me days to get over the depression bump that Jack’s actions leave on my heart & in my mind. His words and/or actions are repeated over & over in my head. I can remember each episode like it happened yesterday, none of the scars ever fade. Each time something goes wrong, I question what in the world I have done to be subjected to this type of punishment. This is why it is so important for anyone struggling with depression, difficult times, or issues at home to have outlets. It is those outlets that keep the mind healthier than what they would be. When I was a stay-at-home Mama & that was all I did, the depression from Jack’s situation stayed with me for weeks. I would go a week or more & not talk to anyone but the kids, my Mama, or Lee. A few years ago, Mama encouraged me to play in our local ladies softball league, this helped me tremendously. As a stay-at-Mama, I didn’t really have real friends, any connections, since I was so limited in what I was able to do, but now through softball, I’ve made so many friendships with people that I talk with several times a day. Before softball, I didn’t have any of that. Now I have The Berry Patch that I am able to manage on a full-time basis, people to help at home with Jack, softball, church friends & family. These are the things that keep me going. Otherwise, I would be curled up in a ball, never wearing makeup, or doing anything joyful. I may cry a little. My tears are often silent since I can’t show that type of emotion to Jack, but after a day & night of sadness, I’m back up on that saddle again hopeful for a better day tomorrow & just hope that one day I won’t have to cry pretty. On the brighter side, only 6 more days of elf hiding!