Why it’s hard to be me

Why it’s hard to be me…well, the obvious (haha). But seriously, I take recycling to a new level. We live in such a rural area that access to recycling isn’t easy & I take recycling to the extreme! I save every single piece of plastic that I encounter for recycling. Whether it’s plastic from a shaving cream can, a plastic bag from the Walmart, or packing plastic, it gets recycled. And don’t you dare let me catch you throwing anything away in the regular trash that is plastic, I will cut you! While I’m talking about recycling plastic bags, why in the world do the makers of these huge recycling bins make the opening for plastic bags so tiny? I’m pretty sure there is a YouTube video floating around of me sucker punching plastic bags, when in reality, I’m trying to push the durn things inside the bin. This deposit hole has got to get bigger! If I’m in a parking lot & see a can whether beer or Pepsi, I pick it up for my collection. Lee always fusses at me about this, saying I don’t know what people did in that can! I also save the tabs off these drinks to deliver to the Ronald McDonald House in Chapel Hill, NC, but I also collect tabs from friends. Tabs are littered between our house & The Berry Patch until I can get there for one of Jack’s appointments.

My next collection is books & magazines which I use for our little free library at The Berry Patch. If we have a surplus, I make my girl Friday, aka Ava, run them into hospital waiting rooms. Newspapers, tissue paper, wrapping paper are all saved to wrap glass items purchased by customers at The Berry Patch. If I go to a shower, I’m thinking, that tissue paper would make excellent cushioning for our jarred items. I never throw anything away & hate to see waste. I will find someone to give outgrown clothes to, furniture, shoes, whatever to people. I hang out all of our clothes except for sheets, washcloths, & undies. It’s great on the environment. I make the family save the empty toilet paper rolls so when the lint screen in the dryer gets full, the lint gets put into the empty tube to make for an easy fire starter for Mama & Daddy’s fireplace in the winter. Prescription drugs are sent to the police station for proper disposal. Daddy & his sister, Dot have chickens. I save all my scraps for the chickens. No food goes to waste!

Sometimes I get fed-up with the chaos & say that’s it, I can not recycle any more. My house looks like a wreck with my recycling station hanging on the kitchen cabinets along with drink cans, the tabs, books, magazines, & more. But then the guilt of what I am doing to the earth kicks in & the cycle starts all over again. Call me a hippie, a flower child, a treehugger-it’s all true. On top of my house looking like an episode of recycling hoarders, my car looks like a gypsy wagon most of the time. I am forever hauling my non-trash items to deliver to someone that may can use it. It’s totally insane to be me! I’m like Captain Planet on steroids.

My other problem is reading. I read a ton of health magazines. I have always been interested in natural remedies, diseases, vitamins, & such. Over 1/2 the pictures in my phone are of articles regarding vitamins that people with chronic migraines should take, or what Reshi mushrooms are good for. If you mention you have an ailment & you get a random text or inbox from me, it’s because I’ve read something about your illness & I was thinking of you. I’m kind of stalker-ish in a non-harmful way 🤣. I’m willing to bet my family can add to the list of my oddities. They just roll their eyes at me when I tell them we have to start saving such & such or if I fuss at them for throwing something away that could be recycled. I wonder why these people hate the earth!!! (This statement is meant as a joke, DO NOT message me about this)!

I haven’t written in a few weeks, because there really hasn’t been much going on. Most of you know via my Facebook page, that we successfully took Jack to the Keith Urban concert. We were extremely worried that the heat, the excitement, & the crowd would be too much for him, but he proudly proved us wrong. Jack has been secluded in his room most of the time since attending the concert. If he is out, he is busy slashing at me, which makes me mad as fire! I hate it with a passion. Ava is enjoying her last few weeks of freedom at the beach with family & friends, Coleman is going to be joining them soon & then next week we load up the truck to move to Beverly…well actually, State, but it will seem like Beverly to him after living under the same roof as the Tasmanian Devil. It’s so hard to believe that the overly shy, timid little boy is so grown up. As I walk around the campus of State, tears of joy well up because I am so proud that he has accomplished so much & has a focused head on his shoulders. I also have tears of joy that State has an excellent recycling program…until next time.

A series of unfortunate events

Can someone please break the curse that is hovering over our family? Is anyone a Sicilian grandma out there that specializes in curses? I will do whatever I have to do, kiss a Priest, ride through Sicily on a donkey, kiss a snake-whatever! Our life story is rough, maybe you get tired of hearing this. Our events are similar to an Adam Sandler movie crossed with a mild Freddy Krouger aspect. If our lives were chronicled as a reality show or a documentary, I don’t think anyone would think it actually is a true story.

The series of unfortunate events (which is also another possible book title), began Tuesday evening. In an effort to get out of the house with our two typical kids, Coleman & Ava, I decided to take them to a new restaurant along with my sister & Mama. When it took 15 minutes to get a menu, we knew there was going to be trouble. When the menu finally was delivered, it was like a large pamphlet with six items to choose from as your meal & most items had to be googled to see what they were. The rest of items were drinks. Now, I was in the right location to get knee-walking drunk, but I don’t drink, so that option was blown! The only non-alcoholic drinks were water, Mexican Coke, Ginger Beer (gross), & Sprite. We all stuck with water expect for the problem child, Ava-she ordered Sprite. Our waitress comes back after 15 minutes to inform us they were out of Sprite. Now, how could any restaurant in the south not have sweet tea? That’s just plain silly! We left & went to another restaurant, all was fine, did a little shopping, headed home. This is when the ball started to unravel.

Upon arrival home, two deputies were pulling into our driveway. As you can imagine, I am thinking Jack has become violent & Lee had to call 911. My crew & the deputies entered the house at the same time & Lee was casually in the recliner, Jack in his room. The deputies said they had three calls from our house to 911. Jack lied & said someone else called 911, one of his chatroom friends. The story just keeps getting better from here.

The next day, Coleman has student/parent orientation at State for two days. Lee & Coleman were driving separately to State because Coleman spent the night in the dorm. They left at 6am & hadn’t made it 10 miles from the house & Coleman is calling saying Lee has hit a deer! Now this will not come as a shock to some of you. Lee has hit deer, a black bear, & most recently, an AK-47 that fell off an Army truck! I think we need to start a GoFundMe page for LASIK surgery. Lee’s truck was undriveable, thankfully, my parents live down the road from the accident & Lee was able to get my Daddy’s truck to drive to State. Poor ol’ Coleman had to go down the road & arrive at State without a parent in tow for about 45 minutes.

The next sob story goes back to Jack. He wakes up per his usual bull in a china shop fashion, trying his best to get in the bathroom with me as I have locked myself in to deter him from harassing me physically. When we were having issues with violence from Jack, Lee jimmied our doors to stay locked from the outside if we needed to get away from him without him entering by placing a screw in the keyhole of the door. For pure meanness, Jack locks my bedroom door & runs back to his room. I still have my gown on because my clothes are in my bedroom. Now this lock can be removed easily had I had the proper tools, but of course we never have anything when we need it. It’s like having peanut butter & jelly, but no bread (thanks to the movie “Friday” for that analogy-I use it often). Let me just tell you that Jake VunCannon is an angel among us. He is good people! Lee called Jake & he came to my rescue. Lee & I ended up switching places today in Raleigh. As soon as I was able to get back into our bedroom, I got ready to head to State because we had some employee issues at the stand. All went smoothly at State, thank the Lord!

Every bit of this crazy story occurred in less than 12 hours! I absolutely can not make this stuff up. I am sure y’all think we are a bunch of loons, but I swear we aren’t (we aren’t making this up that is). The only question I keep asking myself is, why? Why must we endure such suffering? Why must nearly every single day be such a challenge? Why can’t we enjoy life as others do? I don’t know the answer to any of these questions, it’s likely that I won’t, maybe it’s for your comedic relief. Maybe it’s to remind you, that perhaps some of your problems really aren’t problems. I feel like Nancy Kerrigan after she was attacked right before the Olympics, I find myself screaming, “why, why, why” nearly everyday. We’ve got one more Raleigh trip this week & that’s taking Jack to the Keith Urban concert…Lord have mercy. Let’s hope that trip doesn’t require a blog!

Our New Normal

I got a kick out of this pillow at Belk (where all good Southern women were raised) the other night. Mama & I were messing around & I said I should get this pillow, it takes own a whole new meaning at our house! It literally means what it says! I need pillows that mean what they say!

I digress…we’ve all had that feeling of being hungry but just can’t seem to be satisfied with anything we eat, well that is the essence of Jack’s life. I haven’t blogged in a while because I really don’t have a whole lot of time these days with the stand being in full-swing, trying to be a Mama, & then being Jack’s Mama & caretaker. I’ve been wanting to blog about his hunger, not an actual hunger, but a metaphorical hunger.

This summer, Ava has spent a large portion of her time at my Mama & Daddy’s house during the day while I work and/or at night. She spends the night at her home maybe two nights a week. Lee & I miss her so dearly. Ava is such a sweet, loving, helpful child (takes after her Mama no doubt). The reasoning for her absence away from home, is Jack. As I have explained in previous blogs, Jack is annoying. I compare him to the most annoying boy you can think of in your third grade class. Picture the boy that ran around popping your bra (okay, maybe sixth grade class with a bra), snot running out of his nose, tapping your head. Now, magnify that fool by 10,000…omg! Ava doesn’t like to stay at home any more because this is what Jack has become to her & myself. He does do this to Mama & my sister some too, but Ava & myself are the main targets. This heathens antics involve popping the waistband of our shorts, actually taking his hand & slashing at us like a tiger-trust me, it hurts, talking the whole time we are trying to watch something on tv, wanting me & only me to watch a movie with him, or now, wanting me to take him to town for something to eat. And by the way, I can call him a heathen…no judgement because this is how I actually talk. Those that know me well, can attest to this. Heck, I’ve probably called your child a heathen before, but behind your back, of course!

Instead of the containment of staying at home 24/7 & holed up in his room like he was doing several months ago, we have entered a parallel universe. This new universe involves a whole new system. Wake up at 9am every morning as opposed to nearly 11am, bang on my bedroom door repeatedly, scream my name repeatedly, behave like a cat straight out of the jungle, insist on going to the Chiba drive-thru 3-4 times a week, require me to look at him & sit right next to him from 7pm-midnight until that glorious sleeping pill kicks in.

Jack is hungry, he’s hungry for Chiba, but he is hungry to aggravate us. This child get zero satisfaction out of anything. If he gets a gift card for $25, he asks why couldn’t it be for $50. Or, if he’s sitting next to you, he has to plop his feet on top of you & then proceeds to dig them into you. Should he get into the pool, he is going to worry you to death by splashing you restlessly, until you get out. That song by Kenny Chesney, ‘Everything’s Gonna Be Alright’ just ain’t true! Kenny has money, money can buy so much. It could buy us special help for Jack, a new home design tailored to our needs, nursing care, the list goes on & on. So Kenny, if you’re rich like yourself, things have a better chance of being alright.

This video was recorded while I was in my bathroom with the door locked while trying to get ready for work & Jack is in his room saying my name over & over.

I text Lee tonight while at the Chiba drive-thru; it takes power of the supernatural to keep me from losing it with this child. Our prayers, your prayers are what is keeping this ship afloat. Without them, there really is no telling where any of us would be. Please keep them coming…until next time.

What grade am I in?

Here’s a sad question I got from Jack in a text a few days ago. He asked me what grade he was in, never gave me an explanation as to why he was asking, however, I’m pretty sure someone in a chatroom asked. It got me to thinking about old times, the times when Jack went to school. How he loved the social interaction with the other children, the games, different activities, but definitely not the work-he just was not into doing schoolwork at any grade level! Of course, most of his peers thought Jack was weird, but he actually loved each one of them & spoke fondly of his classmates everyday after school & still talks about many to this day. As I’ve mentioned in other blogs, Jack started his elementary years at a small, private Christian Church. It was truly a beautiful experience for us all. We knew he was being watched so carefully & loved. After two years there, he began public school where we knew many of the teachers & staff & were only a mile away from work & our house if there was an emergency. Surprisingly, Jack never had a seizure at school! Even though I knew Jack was being hovered over by his assistant & others, each day he got out of my car to go to school, my day was filled with fear. Fear of seizures or behavior outbursts.

By the time Jack made it to fifth grade & after three personal assistants, our worse fear came true. Jack had a physical outburst in class. He was being disciplined by his assistant & rightly so, he was doing something he wasn’t supposed to do. We were always honest with those caring for Jack about his behavior. We explained to everyone that had contact with him how he can rage & how intense the rages can be. However, you really don’t know how bad something is until you experience it personally. It’s like with my blogs, I can write about Jack’s musings & the torture he puts us through, but you absolutely would not believe how bad it is until you have a firsthand experience of his wrath. His assistant was a tiny thing, never saw the attack coming. Thankfully, she wasn’t injured too badly. Lee received the dreaded phone call, he was expecting a seizure, not THE phone call. At that time, we made the joint decision to take Jack out of school & homeschool him. We always said if Jack ever fought at school, we would pull him out. We could not have something else to worry about. We could not live with ourselves if he injured another student or a staff member. In 2011 of Jack’s fifth grade year, we pulled him out of school to attempt to homeschool. Homeschool was a true struggle, he had zero interest in the work or learning. Mornings were always a beast when Jack was in school, I had to get the doctor to write a note so that his school day could start later which was 10am. At home, we tried to stick with that schedule, but he just got more defensive since I was his everything; Mama, caregiver, chef, & now teacher was added to the list & he was not having it. I had crayons & pencils thrown at me, papers crumpled & both were out of frustration. It was after several weeks of struggling every.single.day. with this child to homeschool him, that I decided it was no longer worth my safety or sanity to do this. I tried to make activities educational by sneaking in some learning. We would go to our local library a lot, play educational games on the computer, but instructional learning was/is not for him. I faced ridicule from some about this choice, but how could I put other people in danger, especially children, the staff, & then myself. I was not going to put myself in harms way unnecessarily. School is not for everyone, particularly people that have severe behavior issues like Jack.

How excited we were when Coleman graduated in May. He worked so “Berry” hard graduating with dual diplomas, one for high school & also an associates. Of course we were all smiles in the pictures, however, the smiles were slightly broken. One, we have a child that will never graduate & two, Jack never wants to participate in family activities so he wasn’t there for pictures or to celebrate the occasion. Our family pictures have gone from 5 to 4. As a parent, this creates a great ache. The ache isn’t the same as a parent that has lost a child (I’m not trying to compare it to that), it is just a constant sadness to know that family gatherings are one less & the proof is in the pictures, memories, & atmosphere.

The text from Jack that said “what grade am I in”, reminded me of the book “Are you my Mama?” This is a children’s book about a bird that hatched while his Mama went to search for food. The poor bird was unable to fly & was unsure about who is Mama was. In his search for his Mama, he asked different animals unlike him if they are his mother, & of course none of them are. It reminds me of Jack because both are such innocent questions, both are questions each should know the answer to, both are lost. Jack is lost & trying to find friends & a girlfriend online each & everyday. Unfortunately, in Jack’s search for friends, he doesn’t encounter the kindness the bird found in the wild. Jack unearths the evil of the internet. People continuously making fun of him & the sad part is, he doesn’t know that they are. These people tell him to say ugly words & he does it. They ask him for money via iTunes cards or Visa gift cards, which creates a whole other problem for us. He is always asking for us to buy him gift cards so he can give to these people. Jack doesn’t know that we know this. I discovered it by snooping. Jack is bursting at the seams to unleash in the real world. In his real world, it would involve traveling to Europe or Australia & meeting some of the “friends” he has met on chatrooms & being a singer. He thinks he could arrange this all on his own & he probably could to a certain extent. I think Jack’s life is quite paradoxical. Here we have a nearly 17 year old son that has the body of a man, but yet a mind a toddler & a teenager at the same time. We deal with multiple stages of childhood growth that most experience from birth-teenage years on a daily basis. Ultimately, we don’t know what to do with Jack. As aggravating as he is, as confining as he is & in turn, makes us, as strong as he can be, as demanding as he is, can we really let go & place him somewhere? I go back to this topic because the conversation has resurfaced between Lee & I. I know what would happen. He would be placed & then go nuts. He would refuse to take his medication & be tied to a bed because of threatening behavior. So I ask myself, how can I do that? We’ve come so far in his seizure journey to lose seizure control. He’s only having a seizure about once every 6 weeks now, which is an amazing feat for him, especially after having 100’s of seizures every single day for so long. There is no easy answer, heck, not even the slightest hint of an answer. All we know is, that this is hard. We want easier lives, we want peace of mind, we want joyful lives, but most of all, we want a happy home. As I hear the echoes of Jack’s text over & over in my mind, “what grade am I in”, I am reminded of his innocence & cling to the hope that those mean, hateful “friends” will not rob Jack of all his innocence & I pray that our future will become clearer.

The shaving cream lid

What an odd title for a blog you must be saying, I would say it too if the shoe were on the other foot. I am on vacation for the first time in years. I stopped taking the family on vacation years ago on account of Jack’s behavior. We came to the beach regularly with my parents when the kids were smaller, but Jack was more manageable then. With the assistance of Lee, my Mama, my sister, & two of Jack’s helpers, we were able to escape to Cherry Grove, SC for two nights. Coleman, Ava, her friend Zoey, & myself are currently sitting on the deck of our oceanfront room listening to the crashing of the waves, murmurs of conversations, listening to various music playlists from vacationers, inhaling secondhand cigarette smoke, & they have loaded up on the pure sugary delight of Krispy Kreme (the sign was on)-what is a beach trip without all of these things!

As I sit on the deck, I get a text from Lee saying he can’t find Jack’s monitor which we use to listen out for a seizure in the middle of the night. There’s no telling what he’s done with it. He has recently become more active in the chat rooms & I guess he feels that having a monitor makes him look babyish. I am texting Lee all of his hiding places & of course he can’t find it anywhere. Reasons like this is why I don’t like leaving home. Lee has been up since 6am & it’s now 12:15am & he’s searching for the monitor. The word relax is not in our vocabulary! If I ever get a tattoo, it’s going to say ‘it’s always something’! That is also another possible title for a my book!

The fears that are going through my brain are hardwired there from years of chronic stress. Will he have a seizure, will he act out, will he take his medications? The list goes on & on, now Lee had to go find the backup monitor & set it up because he couldn’t find his. It never fails if I go somewhere, something happens. Jack doesn’t even know where we are or that I am gone overnight, we left the house today without goodbyes to him because this disrupts his routine. He must of sensed something was up, because he woke up early & now the monitor is gone! I also hate leaving Lee. It feels selfish to take a vacation while he is home working so hard.

We did a show tonight, Medieval Times & I am starving! This is a place where you eat the food with your hands & it’s not that good, there are actors performing jousting & stunts on horses. Why did we choose this show I ask myself, I get jousted everyday by Jack! Although not my cup of tea, we were able to relax without any pressure of our home lives for a few hours. One of the pluses about being away from home is Coleman, Ava, & her friend are free to roam the hotel room anywhere they please without the fear of Jack looming around the corner. The rational side of my brain knows this is a good trip to do with the kids & very much needed, but the other side of my brain is not so kind to me.

Let’s get to the shaving cream lid part. For years, I would save the lid to my shaving cream because an impromptu trip may of occurred & I would need my lid for travel. Finally, I started throwing them away when I opened a new container of shaving cream because I never went anywhere. When packing for this trip, I realized I didn’t have a shaving cream lid to cover my shaving cream & that made me sad. You don’t realize the impact of small changes sometimes until years later. I am forward to a new day, taking the kids to eat breakfast, & hopefully a relaxing day on the beach without a sunburn or hometown chaos!

Where is the paper box?

Around a month ago, I had the pleasure of Jack going to bed around 11:30pm. What a surprise, & to think all it took was an increase in his sleep medicine. We suffered for well over a year in the living nightmare with a lack of sleep & sanity due to what I blame on the trial of CBD oil or Epidiolex. That whole ordeal threw us a major curveball. We were so hopeful that CBD was going to be the answer for Jack & our family. Don’t get me wrong, it has helped many Dravet patients & other chronically ill individuals, it just was not for Jack.

For years, I have told Jack’s medical team at UNC that I think he is bipolar. When I would begin this discussion during his various appointments or hospitalizations, I was given strange looks & flatly told his behavior is 100% due to Dravet Syndrome. I just don’t think so. Jack has so many similarities to that of a bipolar person. It is not unheard of for folks to have more than one medical issue. We’ve all known people to have more than one diagnosis, so why wouldn’t the doctors hear me out & try bipolar meds? His symptoms fit the bill totally-highly excitable, moody, excessive talking, thinking the world revolves around him, down in the dumps, times of under & over eating, sleep issues either not enough or too much, & becoming obsessed with things. Since Jack was 8, I have thought he is bipolar.

During Jack’s last outburst which was in December of 2017 & he was hospitalized, he came home on Trazodone for sleep. It worked okay, not great. Depakote was also added to his long list of meds. His mood was definitely not good, but at least he was not being combative. I really hated to tinker with his meds any more since he is already on so much, but in May, I had had enough. I was staying up to 2-3am every night with him as I’ve stated in previous blogs. I emailed his neurologist who agreed to increase the precious nugget called Trazodone & it has helped in a major way! Since the increase in the dosage of Trazodone, Jack has been out of the house more in the last two weeks than in the last nine months altogether. This increase has been a blessing & a hinderance at the same time. Blessing in that he is becoming more like his old self, going to sleep at a decent hour, become more engaged (way engaging), more interactive, & wanting to get out of the house some. His wanting to get out is sporadic & still only on his terms. I bet you are wondering how any of this could be negative right? Well, with this increase in the Trazodone, he has become obsessed with me & I assume it’s because I am the main caretaker. I can not have any time to myself or with Lee or with Coleman & Ava as long as I am home. We can’t spend time as a family of 5 because Jack aggravates the kids so, they dissipate to their safe place, their rooms. Lee & I are forced to watch Blue’s Clues, Night Rider (yes, the show with David Hasselhoff), or Batman the tv series from the 60’s with Adam West & Burt Ward. We have zero time to ourselves. There is no more watching our favorite DVR recordings such as Below Deck, Diners, Drive-Ins & Dives, or something I recorded on PBS that is interesting for us farmers. Every minute is about Jack. It is great that he has become more active & a little less obsessed with the phone & computer, however, it is annoying because everyone needs time as a couple & to themselves.

How did this medication do this you may ask. Well, Trazodone as it turns out, is a medication that can be used for bipolar patients who suffer from a lack of sleep & Jack just so happens fits the bill. I am beginning to wonder if my theory of Jack being bipolar is correct. This is one of those times you want to stick your thumbs in your ears, wave your fingers, stick out your tongue, & say ‘nah-nah-nah-boo-boo’ to the doctors.

While experiencing this new phase, one night last week I was sitting on the porch trying to steal a few minutes of alone time, but no such luck. Jack comes out at 9:30 & wants to get the paper. To put this in perspective, here’s the story. Our local paper stopped home delivery for us last summer (2017). Jack suddenly wanted to go out & get the paper for some reason. Now this is a task he often did for me everyday. Last week was the first time he noticed there was no longer a paper box in our yard in over a year! It’s so hard to believe the changes we’ve seen in this young person in his few years. On that night Jack went to get the paper, he also wanted to ride to Carroll’s Pantry which is a convenience store in the area. He wanted a drink. We rode to get one & then I rode out to our local baseball/softball field in town & there was a game. I love to watch & play ball, so we pulled over & watched a little of the game. He wanted to get out, but I was too afraid the crowd & excitement would be too much. Jack & I stayed out for a whole hour that night! While writing this paragraph, I am reminded of the book, ‘If You give a Pig a Pancake’. I swear I’m going to write an adult comedic version of that story one day titled “If Jack comes out of his Room’.

So tonight Jack wanted to go to Sonic. He had this planned out to sit behind me so he could get out of the car & press the Sonic red button to order & swipe my card. Pressing buttons is highly important to our children (think they may of gotten that from me), I always wanted to work at the Food King grocery store when I young…something about pressing those buttons on the cash register intrigued me. After the order was placed, card swiped, he got in the front seat & prepared to chow down.

This week, Ava attended a local camp. Jack got a wild hair the day before she was due to come back home. He looked the number up & called them! I heard him talking to someone in the office about giving his sister Ava a message to make him something while she’s at camp. This is a smart kid, makes you wonder what he would do with his life if he were a regular kid. He is a savant in many areas. He knows many facts about celebrities (mainly dead ones), old music, dinosaur facts, things about countries most have never even heard of. He even bought a British flag for us to hang outside of his window-which was a purchase prior to the Harry/Megan mayhem.

This life is ever-changing, it’s difficult, hard, funny, weird, sad, aggravating, & everything in-between, I just never thought we would go through the changes Jack has experienced so deeply. Maybe we needed to go through all that chaos to get to this point. For now, we accept this change & look at it in a positive light…mostly.

Hurricane Jack

C7E012DC-31C9-4836-970B-1D02F52ABDEDHow was your morning?  Probably a lot better than mine.  I think mornings were created to be peaceful & relaxing.  I have an image in mind of what a perfect morning should be.  Waking up around 7:30, cooking a big breakfast for everyone & enjoying that breakfast outside listening to the birds, then head to The Berry Patch for an entire day of work.  Our life is so far away from that it’s not even funny!  Since the birth of Jack, a calm, peaceful morning has yet to occur.  Coleman nor myself really care for breakfast, however, Ava does.  Poor thing has to wait until Jack is awake & situated in his room before eating (more on that later) because if he hears noise, he’s up.  What it is like to live a day in the life of our family?  It’s not as cool as I try to make it seem on social media.  Let’s face it, most of us are not going to post the negative, only the positive which is a good thing.  Maybe you want to hear it, maybe you don’t & that’s fine too.  Let me give you a run-down of our daily activities:

6:30am, Lee’s day starts.  8:30am, I awaken, but am held hostage in my room so Jack won’t hear me & wake up early; 9:30am Jack wakes.  Coleman & Ava are still in their rooms behind a locked door because Jack may go upstairs & that’s never a good thing.  When Jack wakes, he comes bounding out of his room slamming his door repeatedly, when he tires of that, he starts stomping through the house-to the point where knick-knacks start falling.  He runs back to his room, but not before gouging his fingers in my stomach for a mere 5 minutes.  No amount of talking him down from this act makes him stop.  He likes to think he is a Tiger Sword Power Ranger & he is clawing at his victim.  Shortly after a quick reprieve in his room, he’s back out again playing music as loud as possible & singing, following me wherever I may go.  Now it’s 10:30am & I am just able to start doing what many were able to do hours ago.  I’m late washing clothes, opening up the house, straightening the house, washing dishes from the previous night because Jack was being particularly aggravating.  Once his medications kicks in, most days I’m given a few hours of complete & utter silence from Jack.  He stays in his room for hours sitting on his bed on the computer or iPad.  I want you to think about that for a second.  There are days (although limited these days), this boy does not come out of his room for 10 hours.  Can you imagine not having any physical limitations as far as walking is concerned & not getting out of the bed for over 10 hours straight & he voids only one time a day, everyday.  Jack has gotten some better about wanting to have his bedroom door open, but a lot of the time he wants it shut.  I sometimes go in his room & sit on his bed & think how sad of a life this would be for myself behind four walls.  He is staring at some sort of screen for hours on end behind a closed door & tv off.  Such a sad life for us to watch this, he doesn’t seem to be unhappy though.  Jack goes through so many extremes.  He is either extremely talkative or doesn’t murmur a word, either hyper or so subdued a house fire couldn’t get him up.

In the early afternoon hours, I really don’t see or hear much from Jack.  I am able to do some catching up on my shows, reading, spending time with Coleman or Ava.  Then around 7pm, I start with supper.  We eat around 8-8:30pm because The Berry Patch doesn’t close until 8:30 every evening.  Lee’s days are often 14 hours long.  I know it’s a choice in what we do for living, but it’s really hard on Lee not being able to spend time with the kids, myself, & having the burden of working every single day from sun up to sun down & being the only provider for our family.  When he gets in, he eats & goes to bed shortly thereafter & that is when Jack starts!  He has vampire hours-I’m starting to wonder if vampires are real!  You can set a timer to when he comes out of his room, 10:00pm every night & he is doing the same to me at 10pm that he was at 10am.  Everyone retreats to his or her room because he’s so aggravating to us all, I’m left to deal with his antics.

10pm is a busy time for me.  Most folks are getting ready for bed, I’m just getting started making cobblers or dipping chocolate covered strawberries for our business & Jack is distracting me & right in the middle of it.  10:45pm medication time.  11:15pm, Jack’s in the living room watching Blue’s Clues.  When it goes off, he pretends he’s asleep.  Why me Lord!  I have to beg & plead for him to get up & go to his room.  Finally, he goes after I make it into a race to see who can get there faster.  Guess what?  He’s wide awake!  I close down the house & leave Jack in his room alone to let the medication work its magic (hopefully).  12:45am, the house phone rings-it’s Jack!  He wants me to fix him something to drink.  I take the drink & 15 minutes later, he’s asleep.  Jack falls asleep every night with his computer on his lap, music going, iPad on.  Cleaning off his bed a night is a chore, Power Ranger toys are piled up on the bed, all those electronics, the bed is just a mess.  We were able to increase the dose of his sleeping pill which has helped with an earlier bedtime so much.  However, I am having a difficult time getting to sleep earlier than 1:30am because of the 3am & sometimes later bedtimes he was having for close to a year.  I’ve got to readjust somehow!

Jack finally falls asleep at 1:00am; 1:30am-Amy falls asleep;

How was your day?  Lol

What is really sad, Ava has two friends over today, when they got here, I had to give them the rules.  No talking downstairs because we don’t want Jack to come out.  He would try to go out to the pool & terrorize them.  They can only talk outside & upstairs.  Now can you imagine what these preteen children must think.  It breaks my heart & I know it does Ava’s that she won’t ever be able to have sleepovers with several girls at her house because of Jack.  She & her friends will never be able to run freely through our house like girls do, make a mess in the kitchen, freeze their bras (do girls even do that any more),  or have makeovers.  Dravet has robbed our family so much & continues to do so everyday.

I get tired of the constant planning.  If I have to go to the grocery store, post office, whatever, I’ve got to get someone to stay with Jack.  I despise being on such a rigid time schedule depending on others to help me tend to Jack.  I feel bad for inconveniencing my Mama & Daddy or Aunt Ruby while I run errands or work.  I know they don’t mind, but it is distressing & almost embarrassing to keep asking.  It’s always, let me hurry & do this so I can get back to house.  Lee & I can’t go anywhere together unless it’s something really important.  Everything I do is timed out.  I get tired of that.  No matter, that’s how it has to be for now.  Enjoy life simple inconveniences such as breaking a glass,  burning your toast, or even breaking a leg…I’d take those things any day!  You never know when a hurricane will blow into your home.