Dreams

What are your dreams made of & I mean actual dreams like dreams during your finest hours of slumber? We all dream, at times stranger than strange. I have always been a dreamer of the bizarre. Dreaming about people I went to school with & have not seen or thought about in 30+ years is common for me. Which I wonder if that is a sign from God that I should pray for them & I do. Also, I seem to dream about traumatic things like people close to me dying, someone breaking into our home, crazy stuff very frequently. I think most of these traumatic dreams are fueled by the circumstances in which we live. My dreams aren’t pretty, they never have been, but my dreams in the last few years are disturbing. I often wake up in a sweat (not a cold sweat because I am nearing menopause lol) & highly disturbed. My disturbed dreams involve Jack almost always. The dreams seem so real & possible. It’s not every night, five nights a week give or take. I’ve recently incurred more of a problem sleeping than usual. I toss & turn all night long, waking anywhere from 4-6 times a night & mind you I can’t find my sleep window until about 2am. I don’t know if my thyroid is more out of whack than usual, if it’s hormonal, or a result of my dreams. My dreams that involve Jack are way too nightmarish to write about, I do have a few boundaries & will keep those in my heart purse. The side effects as many of you know to not sleeping well can be a day of being an illbox, groggy, foggy-ness, clumsiness, & just plain weirdness. If a camera were allowed inside my brain for y’all to view, it would be more than alarming. Y’all would say get this gal some mental health help stat! The dreams can hit Lee at times as well. Just the other day he attempted a nap, he was asleep & about 15 minutes in, he was startled awake with a dream that Jack was having a seizure. Our experiences with Jack have been very frightening through the years, we’ve experienced both physical & mental trauma, no wonder we are plagued by fearful dreams. The dreams seem so real because we have been through almost every circumstance with Jack. I question a lot of times whether my dream was reality or not. When a trauma victim says they have PTSD, believe them, it is a real thing.

I wonder when I have time to dream, my sleep issues have consistently been a subject of soreness since Jack’s birth. We had the typical newborn phase of not sleeping due to feedings, but ours was so much more than just middle of the night feedings & diaper changes. First, we already had a baby, Coleman was only 15 months old when Jack was born & Coleman never slept great. Jack was also born with a heart condition that he had to take medication for every eight hours. The hospital had him on a crazy eight hour schedule that didn’t fit into our lives too well, but of course we still did it. It wasn’t until speaking with the cardiology team at Duke during an appointment that this was addressed & they directed us on how to change the schedule. We were parents of a medically challenged newborn that had a potentially life-threatening heart condition, we had no idea we could change the schedule, we were terrified parents. Then when Jack turned 6 months old just as we were feeling comfortable with parenting Jack, that’s when our world really got turned upside down when Jack had his first of millions of seizures. Fast forward 19 years later, a diagnosis of Hashimoto’s for myself (which causes sleep issues) & Jack’s sleep issues, a perfect storm was created for staying wide awake 90% of the time one is supposed to be asleep. Since Jack was around 11, I started a daily journal about him. It lists the date, anything unusual like sleep or behavioral issues, bathroom changes, medication changes, mood changes, & seizures. “Normal” days (if you can call it that) are highlighted green, days with something different are highlighted pink. There are several weeks in September of this year that are pink, we love all green!

All of this talk about sleep got me on a Kardashian kick. Why the Kardashians you might ask? Well, one of the famed sisters has been spotted recently in her pajamas aka paja-mers in my household. Sister K was caught sporting her silky blue pj’s out on the town. Fancy, yes. Would I do that, no! My pj’s are very sad. Teens are always snapping pictures, Ava is forever taking my picture in the most unflattering ways & clothes, namely my nightgown. All of her friends know what my one nightgown looks like. I was even told by one of her friends that my nightgown is iconic! Being the peculiar person that I am, I have certain requirements for sleepwear. It must not have sleeves, must be mid-length, not see-thru, & soft. Imagine the difficultly in trying to find such an anomaly! I found one five years ago at Walmart & it is the only gown I have worn since then. I don’t do t-shirts, tanks, shorts, pants, only nightgowns.

I always get tickled when I see someone out at Walmart, the grocery store, or Dixie Burger in their bedtime clothes, especially when they are sporting their bedroom shoes, too. That’s another thing that I don’t own, I wear my black Nike foam flip flops around the house, to work, & even to Disney-that is one thing I am willing to wear with both my pajamas & daywear lol. If the public were to see me in my nightgown, I would be a feature on the nightly news! It’s amazing how celebs look good in almost anything, but us regular people have a hard time looking decent in shorts & a tank top! I can see me now in a pair of satin pajamas like the Kardashians, the pants would be high waters on me, I would load up in my Yukon & slide all over the seat because that’s the only thing I have in my life that is leather & leather & satin don’t “sit” well, sweat stains would quickly form & show because of hot flashes, & I don’t even want to think about how horrible my boobs would look in such an outfit! Life is different when you are a celebrity. You can wear the ugliest of clothes & still get named best dressed woman of the year.

I haven’t had much of a need for pajamas here lately since Jack is on an anti-sleeping protest. Most mornings, yes I said mornings, he has not been going to sleep until 6am or after, then waking at 11am. Lee has bribed him into going to bed early the last few nights so that he can get a Dale Earnhardt car that he’s been watching on Facebook. Not that he needs any more junk, but anything to get a few nights of peace & maybe some rest. The first night of this new deal, I had complete & utter silence in the house, something that I have not experienced in quite sometime. Lee was in the bed, Jack asleep, Ava spent the night at a friends. Silence truly is golden. Funny story, prior to Lee & Jack’s new deal, Jack was being very loud one night around 11:30pm, he was howling like a wolf. He went on & on for about 30 minutes. Ava was texting me from upstairs begging me to tell him to hush which never works so I let him carry on. I was on the phone with my Aunt Dot who heard the howling & thought she had something outside her house. I die laughing at that all the time now!

In my downtime on that silent night, I was finally able to open a few of my QVC & Amazon packages (I actually forgot what was in them). You can’t ever let Jack see a package (this is what caused my delay in opening them), he will want to open it & him opening a package will tear up your nerves. He wants knives & scissors & we are scared to death he will cut himself because he doesn’t understand the danger of those objects. Jack has been the sweetest fella ever despite the last several weeks of his sleeping strike. I’ve noticed a change in him for the better even though he has had an increase in small seizures, in which they usually make him more irritable, but this time, it hasn’t gone that way. Jack ordered a Care Bear from Walmart, it was shipped to the Moore County store (aka my stomping grounds) & of course we had to go pick it up. Lee had to go up that way for business so he picked up the bear for Jack. Jack has been like a toddler with the bear. He cuddles with it all the time. I hope it’s not a phase & will continue. The bear was pre-named Grumpy. I think this picture of Jack with Grumpy is so sweet. My prayer is he will remain in this stage.

I’m excited for a few things that are currently happening. Jack is eating & using the bathroom regularly, he went to bed early one night (hopefully more to come) & softball starts up this week. I’ve not played since December & excited to get back out. Remember, if you choose to wear your pj’s in public, I won’t judge you at all-I might take some pictures of you & send to my Mama & sister, but no judgement lol. Just don’t pair your pajamas with hair curlers & a cigarette, I might think I am living in the 70’s & 80’s again!

Pressing Reset

I’m from the south, I most often say ‘mash’ for the proper word ‘press’, so forgive my grammar faux pas. What does ‘mashing’ reset on your life look like? For some, it could be a mini vacation, a day at the spa, or a fishing trip. For others, it could be a day spent entirely alone & in complete solitude. A girls night out could easily reset the mind of a stay-at-home Mama or simply a night of uninterrupted sleep on freshly laundered sheets might do the trick. I personally don’t get much of an opportunity to press reset due to our home circumstances, but I will have to say that I most look forward to 12:30am every night or morning however you refer to that time every single day because I get to watch my favorite girls, The Golden Girls. Unfortunately for me, the Hallmark network will soon be airing Christmas movies 24/7 & my girls will be on hiatus until next year. I have a serious love/hate relationship with Hallmark. I for one dislike movies, especially silly & extremely predictable ones. All the Hallmark movies are the same. Please do not come for me about this statement Hallmark Christmas movie lovers! I know there is a strong following for this genre, but you secretly know I am speaking the gospel here.

As I digress about my Hallmark rant (you know I had to slide at least one in), I’d like to tell you about Jack & his reset button. His reset button is not like anyone else I know of. Guys Jack’s age would typically workout, play a video game, hangout with friends, or sleep for eight hours, wake up to eat then go back to bed for another eight hours to ‘mash’ reset. Jack was not afforded that luxury. Why am I even talking about a reset with Jack you may be asking? Well, it’s one that we have to deal with more frequently as of late than we want to. My blog followers know that Jack had a hard time with seizure control earlier in the summer-he was eating a ton & also seizing a ton & getting injured as a result of the falls from his seizures at times. Jack’s doctor & I made some medication changes to help & the frequency of seizures soon calmed down. Around the time of Jack’s birthday which was a little over a month ago, Jack fell into one of his eating strikes. During these cycles of non-eating, Jack is often very calm, not irritable nor hostile which is great for us considering the behaviors we have had to deal with, plus we are not running to Pekin Wok everyday to get 10 orders of Chinese food.

Jack hasn’t had a big seizure also known as a grand mal seizure since July (knock on wood) when medications were increased. If you’ve ever been a newlywed, you know what the term “honeymoon phase” is-life is blissful & wonderful for a while, until your husband leaves his dirty clothes all over the house, tracks mud all through the house because he refuses to take the time to take his shoes off at the door, or refuses to help with the dishes. Or the wife could secretly hide packages in her trunk to hide the fact she spent a few extra dollars or invite company over after the husband has had a long, exhausting day at work, or the wife could have totaled her Suburban by hitting a light pole at Food Lion. These may be facts taken from the writer of this bloggers own personal experiences. In the epilepsy world, the honeymoon phase is also a wonderful, short-lived moment of bliss that ranges from about 4-6 weeks after the date of medication increase or a new start of a medication, then reality settles in & it’s often in an angry, spiteful way-much like a marriage lol. I’m not saying Jack is experiencing the honeymoon phase, but it certainly looks like it could be swinging that way to me. I have been dealing with enough signs for 19 years to know what we could be facing & that is either an increase in meds yet again or opening up to yet another medication. The latter route is not an obtainable option either. Do y’all remember years ago when the diet pill Phen Phen was on the market but had to be taken off due to heart problems? Well, that same drug has been shown to help Dravet patients with seizures & is working very nicely. There is one caveat, Jack would have to have regular heart screenings & echos to monitor for heart issues & he is not going to be down for that. We can’t even get him to shower or brush his teeth. Phen Phen, when given in lower doses helps reduce seizures in Dravet patients. I would be delighted if Jack would take it, but he would never agree to the frequent screenings.

Jack’s body is currently trying to press reset by having a big seizure. How do I know? He’s been waking up early, waking through the night, increased eating, not going to bed at a decent time (I’m blogging at 1:45am awaiting his slumber), jittery, getting out of bed first thing in the morning (which is never a good thing), & wallering around (also a southern term that I couldn’t find the spelling to). One of the more major & scary examples of him needing a reset, is having little seizures aka, myoclonic seizures. His head will drop for a split second or his arm will tremble for just a moment. These are all predictors of a grand mal on the horizon, much like the aftershocks of an earthquake, he has aftershocks before the earthquake so to speak. It’s so odd how his mind/body operates. When his appetite increases, he doesn’t sleep. He is unfillable, but it somehow messes with his sleep pattern which is truly an oddity to me. I can’t imagine how Jack must feel inside his mind as his body prepares for a big seizure. He paces the house, he can’t sleep, thoughts are jumbled, & has little seizures & perhaps even seizures that we can’t see. As upset as he makes us at times, we can’t help but be sympathetic towards him at the same time. He didn’t ask for any of this, for some reason, he was chosen.

So many of you ask about Jack’s health status all the time, so I thought I’d give a little update on what we/he are currently dealing with. Jack is on a Mexican food kick now & Dixie Burger as well, breakfast, lunch & dinner. His appetite has significantly increased, he went from absolutely nothing to everything. He may be coming out of the honeymoon phase which is scary for all of us, & his behavior has been wonderful for the most part. He is sassy & demanding at times, but that we can deal with that & happy to deal with it given the alternative that we have had to suffer through. Who knew marriage & seizures had so much in common? We are blessed to be in this calm behavior stage we are in & pray that it will last forever! Send out prayers that Jack is not entering the honeymoon phase, please! Below is one way Jack presses reset, he got a haircut a few weeks ago & it made the world of difference!

Spa day

The experience of a pedicure is often a relaxing treat for most. I don’t partake in one much because I don’t particularly love them, I only do one occasionally to spend some time with Ava since we are in “Corona Times” now & there isn’t a lot going on in the world-today happened to be one of those days. I love a good, hard massage though. Mama has always said someone needs to massage me with a sledge hammer! I however, do not enjoy the dealings that go along with a pedicure-the salt scrub (ouch!), hot stones (burn), the water is always too hot, & Lord have mercy, those hot towels are dreadful to me. When they say hot towels, that’s what they mean, my skin actually feels like it is searing over an open flame! When the technicians start with the callus remover, I can’t take it. Nearly the whole process is painful to me, the best part is the massage chair. I put it on knead the whole time.

Today our journey lead us to Galaxy Nail Lounge in Southern Pines. I am always ashamed to go to nail salons because my toes are ratchet & my fingernails are as well. My cuticles are ragged (why can’t there be a miracle cure for torn cuticles), both nail sets are cut super short, I love nail color on my fingernails but it chips so bad with my line of work, so I prefer it on my toes & will never waiver from Carolina blue or lavender on my toes. I know the nail people wonder why this gal doesn’t get her fingernails did. For one, I hate things under my nails, that’s one of the reasons I keep them super short. Second reason is, I feel like faux nails make me do funny things with my hands (a problem that was instilled in me by my Mama). I purchased a gel nail kit from Walmart earlier in the year, never again! I now refer to home gel nail as “hell nail”! It took strength I didn’t know I had to get 75% of the polish off, the other 25% had to grow out! That mess was the pits. Lastly, is time. I just don’t have the time to do such & really zero desire for that kind of pampering. I need to go at least once a month for my feet due to the blessing from my Daddy, I got his feet! I have calluses all over. At home, I take a straight-up razor blade to them, a trick I learned from him. Last night prior to coming to the nail salon, I soaked my feet in a bottle of cheap red wine & orange slices to help soften my leathery pads, which worked! My feet have been far worse this season than any other. I think it’s because I have worked so hard since our “pan-‘damn’-ic” (as Lee calls it) started. Most days since this ordeal, I am on my feet well over 15 hours straight. Things are getting slower with our business now that some of the kids have returned to some type of school. This is always a bittersweet time for us both. The slow down is welcomed in some ways, but not really. The fast pace of summer business is really a fun time…most of the time.

What sparked me to write about pedicures was thinking about Ava & her age of 14. I was looking at this complete & utter stranger today trimming my nails & coming at my toes with sharp objects & I thought ‘how ridiculous is this’? Ava has been getting pedis since she was 10 or so, if she ever got a splinter in her foot & her Daddy would try to remove it with a kitchen knife (none other than the best made Rada knife), she would start hollering & carrying on something awful! I would have to hog-tie her to allow Lee to remove the splinter. But let a total stranger come at her with sharp & painful objects, charge me $50 & it’s all smiles! People are funny, children are funnier.

If you ever get a chance to experience a spa day, checkout Galaxy Nail Lounge. It’s an extremely clean facility that oddly doesn’t smell like nail polish. I hate going to those places where the smell of nail polish has overpowered the building. There is a nail salon near Kirkland’s that has a competition with which store can have the strongest scent, Kirkland’s or the nail salon. My vote is with Kirkland’s! Every time I visit Kirkland’s, my hair comes out smelling like pumpkin spice! Too bad Ava has dumped that particular nail salon, I could drop her off & shop at the pumpkin spice capital of the world while she got her nails did. It’s strange how your kids can be so different from their parents. Me, I couldn’t stand nails, except for the 14 karat gold false nail (yes, one false nail) that Santa brought me. This was in the 80’s of course when all things tacky ruled. I still can’t believe I wore those things & that they were even a thing! Ava has loved false nails since she was a tiny person. At age 4, she always talked her Aunts or Nan into buying her a pack at “the Walmarts” or Dollar General. I finally got sick of buying them for her because as soon as she put them on, they would make their way onto my floorboard. I’m still finding false Barbie nails in my SUV! Pictured below are Ava’s current hooker nails as I call them!

Ladies & gents, checkout Galaxy Nail Lounge, ask for Randy, aka Sunshine. The girls say he’s the best in the biz! Let us know whatcha think! Meanwhile, I’ll leave you with a quick parody of one of my favorite comedians. Ava used to do this skit all the time when she was younger, she was so funny, cute, & true-if you haven’t heard it already here it is. https://youtu.be/92fD8Cy2zL0

I am back!

In recent weeks, I have not felt inspired to blog. Really, I have been torn & questioning whether I should blog ever again. Some people have messaged me inquiring about Jack’s condition & people asked me about him around town or at The Berry Patch. If you are new to my blogs or are not caught up on them all, then you missed the negative comments I was so unfortunate to have received about how someone thinks I am not doing my best with Jack as his parent. This person said I write terrible things about my son & that I need to let him experience things that other kids his age do. I know all of this is a lie. This person hurt me. Why did it hurt? It hurt because I know his or her comments were not true. I have tired everything in my power to get Jack help, therapies, multiple medical treatments in different states, natural therapies, the list goes on & on. He has been to Disney World three times. There are a lot of normal children that will never get to experience the magic of Disney even once! I may not be the best Mama, but I am a good one, this I know! I will not carry on about this hostile person any more, but I do want to thank the many, many family & friends that came to my defense. You all are my tribe & I appreciate each of you that offered to whoop some tail, offered caring words, & sent encouraging messages. Much love to all of you!

One person made me want to quit writing, now one person has inspired me to write again. I was really fine with never blogging again. As I have expressed before, I actually do not like to write & it hurts my wrists typing! I was always a horrible writer in school. I think it was mainly because I had to write on silly things in my opinion. I am a cut & dry person for the most part. If I had a job that had to have meetings, I would lose it. I would scream at all the ridiculous people asking foolish questions that were addressed in the beginning of the meeting or they should of already known the answer to. I was never good on going into detail about “who is your hero & why”-I could do that in a sentence or two, not wrote an essay on it or writing an essay on my interpretation on The Canterbury Tales. That stuff didn’t make sense to me, although I can still recite what I had to memorize in The Canterbury Tales even though it is all gibberish to me. I wanted to write about what I experienced-food, gymnastics, my Aunts that smoked cigarettes all night long while drinking pots of Sanka & discussing what was wrong with this world, or write about how I disliked brown paneled walls with brass-toned door knobs (sorry Mama). Never ever was I given one of those assignments to show off my writing skills. And coming up with a conclusion was & still is the hardest part of writing to me. Diagramming sentences gave me more horrific nightmares than long division-math was not fun either by the way. I was not a studious student, only in PE! Writing about personal experiences is totally organic for me now which is how I like it! I am thankful I don’t have to do outlines, make rough drafts (although I should), or any of that complicated such & such.

I am a member of several Dravet Facebook support groups. These support groups have helped me with Jack’s care on numerous occasions by asking questions to the forum & allowing someone in similar shoes that I am in with Jack reply with advice or help. Let me just say, if you suffer with an illness, find a Facebook support group, it can truly help. A few nights ago, a fellow Dravet Mama, which in our support groups the Mama’s on there are referred to as ‘Tiger Mama’s’ because of all the challenges we are forced to go through with our children, a Tiger Mama asked a question to the group about her son’s behavior. Her son acts very similarly to Jack although he is a little younger. She was wanting advice from fellow Mama’s that have been or are on the same behavioral journey as her son. As I have preached before, Dravet is more than just seizures. If behavioral issues were taken out of the equation, life would be much better, but in the same breath, seizures can cause behavior problems. I commented like many other Mama’s, giving a brief synopsis of life with Jack & I shared my blog with this concerned, deflated Mama to let her know she is not alone. The very next day, this Mama reached out personally to thank me for writing blogs about Jack. Her son shares some of the many issues Jack does. Her feelings are literally the same as mine, this Tiger Mama just hasn’t found anyone to write so honestly about the behavior issues before. My writings about Jack are not lies, they are 100% truthful, real, & things nightmares are made of. I will not apologize for being honest because through my honesty, it has helped another Mother. A Mother who is struggling with the same decisions our family is facing & living the same hardships we are going through. We have made a connection through my blogs. Although I can’t help her physically, I know that my experiences that I write about with Jack can help her feel like she is not alone.

Just to give y’all an update on what has been going on with Jack since my last blog as a ticked off Mama, things have calmed down significantly with Jack. His birthday tore him up, meaning he couldn’t eat, sleep, nor rest for thinking about his special day. He had a great time at Chuck E Cheese in Florence, SC. We had to go to SC because in NC we are still in phase 2 & our CC is closed. This particular CC was awesome. It worked out so perfectly, the first Sunday of each month is dedicated to children with special needs. The crowd was low, we had a personal helper, & Jack did not contract Corona (it’s been 14 days since him going-yay)! The personal helper he had was absolutely amazing by the way, so very accommodating & caring. There were several touch & go moments while we were there, there were multiple times that we thought Jack was going to have a seizure. In fact, on the way there, I saw him have several of what I call small seizures but are technically called myoclonic seizures. I also developed a migraine on the way to CC. It’s about an hour & a half drive there & 20 minutes into our trip, I noticed that I couldn’t see part of the road. I knew what was coming. I typically get an aura then the migraine hits. I took 5 ibuprofen & prayed that the headache would not get super bad & it didn’t-it was manageable. Once we arrived home, I was finally able to breathe a sigh of relief! Jack is back to not eating very much though. He is in an extremely calm demeanor right now that is so welcomed. I only wish that he could have both a calm demeanor & have an appetite at the same time. His nutritional needs are not being met. A lot of Dravet children have g-tubes but that would NOT fly with Jack. This would help us tremendously if he would agree to it, however, he will not. Ensures are out, he hates them, meds to ramp up his eating affect him negatively are out, so we just do the best we can.

Here I am at the hard part-the conclusion. In conclusion (lol, this is how all my school papers sounded). But really, in conclusion, you all will never know how much your prayers & concern for not only Jack but our entire family mean to us. You each (except for that hateful person with his or her negative comments) hold a special place in my heart. And to my new followers or even anyone I have helped with similar struggles as my own, thank you for sharing your words with me. We each can help one another with love, laughter, & most importantly, hope no matter what your problems are. Until next time….

Dear Anonymous

My last blog post about Jack’s birthday created quite a stir for someone, not only my last blog, but more than likely all of them. When you expose your life like I have done, there will always be people to criticize, disagree, & be downright hateful. This is not the first time I have received backlash for a post, I’m sure it won’t be the last. The person that commented negatively thinks he or she has told me something, all the person did was make me mad, make me have a sleepless night, & made me wish I knew who it was! There are so many cowards hiding behind a keyboard. Most of the time, these “cowards” have no clue what they are speaking about. I blog to teach people about Dravet Syndrome. I blog to let people know who love & care about our family that often ask how things are going. I blog to ask for specific prayers for challenges our family faces with Jack. I also blog to get Jack’s story out there to see if anyone can offer any type of assistance or helpful advice. I am real, factual, & honest, maybe to a fault, but that’s really no ones business but my own. These are the comments “anonymous” left for me.Jack is not seen as a problem, the rages & violence are THE problem. I know this is nothing he can control at all, who would willingly make the choice to live life that way? Mental illness is real. It is often times something that can not be controlled with medications. Does “anonymous” not have good sense? What family feels safe with a ticking time bomb? I wonder what kind of loophole I could find as “anonymous” suggested to curtail violence? We have exhausted meds, doctoring, the help of social workers & more. All outlets have been explored many, many times. Nothing has helped. Does “anonymous” want to take Jack to the beach for a week on a vacation, to Walmart where he collapses on the floor to get attention, or when he pretend sleeps when he doesn’t get his way & wakes up pounding you in the head or when you’re sitting in the living room minding your own business & he comes in & starts whaling on you. Or how about call “anonymous” when my t-shirt got completely ripped in half when Jack was only 11 when in a violent rage? Did this person not read about the seizures Jack has & the injures that come with them & the violence that comes afterwards? But that’s all normal & deal-able, right? What loophole is there when Jack refuses to bathe for well over a month & no longer brushes his teeth? What loophole may I use when he communicates with predators online that try to con us out of money? What special loophole is there when Jack stays up til 5am & I have to work a 10 hour shift plus I have stay up with him to make sure he doesn’t burn the house down? Sounds like “anonymous” has watched one too many Bugs Bunny cartoons!

I have a simple request, if you don’t like what I post-delete, block, or keep scrolling. Your negativity is not welcomed here.

No Life to Live

Lee & I were recently talking about timing. Timing is an amazing thing, I find it very intriguing, fascinating even. Some examples of how I think timing is perfect are how home chefs have a whole meal ready & put together all at once, it just magically comes together. Or how when I throw a ball to either first base or third base, that’s exactly where it goes-the ball mystically falls into the glove of the opposite person. Another strange example of unique timing, is how you think about seeing someone you haven’t seen in a while & boom, there they appear.

Speaking of time, Jack’s birthday is coming up Sunday, August 2 to be exact. He’s going to be 19! It is truly hard to believe we have been riding this roller coaster with him for 19 years. The “Cyclone” coaster launched on exactly August 2, 2001 & has not let up yet. Normally, birthdays in our family are celebrated at a restaurant of his or her choosing, gifts, cake, & family & friends would be in attendance. This is not an option with Jack, sadly. I call Jack the event upsetter. Part of having Dravet Syndrome is not being able to handle stress of any kind, whether it’s distress or eustress (meaning happy stress). At nearly every birthday celebration as low-key as ours our, he has seized. Not only at his own birthday party, but others whether family or friends. Countless upon countless times, we have attended friends parties, VBS, family gatherings, games, etc & he seizes every single time. This is one of the reasons why we don’t take him anywhere really. He is far too big now to have to transport after a seizure to take to these places & the risk of him getting seriously injured from a fall from the seizure itself is too great.

I find myself questioning our Creator constantly, though only when Jack is intolerable which is most of the time. I talk to God frequently & ask Him why we have to be tortured day in & day out? What I hear back from God is, “let him go”. Meaning, place Jack in a residential facility. Is this torture a daily reminder of God’s message to me? Maybe. It’s not that I haven’t looked for a home for Jack, it’s only that one has not presented itself to me in a manner that would be fitting for Jack’s needs. I do BELIEVE placement is the very best option for our family, I am not going against God’s message-I am waiting for the right place for most of his needs to be met. In the meantime, I still unfortunately continue to question God on the why’s of the absolute torture chamber Jack puts us through. He is relentless in his forms of punishment upon us. Jack would be a wonderful weapon on his own to torture criminals for information. He would have Jeffery Epstein & Ghislaine Maxwell talking in a matter of minutes. All they would have to do is wait for Jack to wake up in the mornings & they would confess all just for Jack to leave them alone. I scream silently in my head all the time when I’m home with Jack, I roll my eyes every time he calls my cell phone when I’m away because I know there is a foolish demand on the other end, I say bad things that my head only hears when he is acting up which is pretty much all the time. This is no life to live (no life to live-good name for a soap opera).

We have a big beautiful pool that none of us can enjoy. If we swim, we close all the blinds, his door, & have to remain as quite as possible. Swimming with Jack would kill Michael Phelps, Jack runs around that pool like a chicken with his head cut off. Most of the time, it’s not even worth the effort of preparing to swim. He wears you down. Jack started well over a month ago on his birthday planning. He is obsessed with Roy Cooper & his lack of opening up the state of North Carolina, it has made Jack very irritable, at times almost violent. He always celebrates his birthday at what I refer to as Chuck E Hell & we always go to the one on Greensboro, NC. When Jack learned the ones in NC were not opening up because of Corona, he lost it. I was prepared for it & came up with the solution of visiting the one in Florence, SC since their state is a little more relaxed than ours & the drive is about the same. It would be all fine & dandy if he could of been satisfied with that, but no! He was satisfied with going to Florence, but as I’ve said since I started writing, Jack can’t get no satisfaction (with anything)! Jack began calling everyone in the phone book (literally) about his birthday trying to drum up gifts. If he saw a name in the phone book (a strange anomaly for teens his age), he called them. Jack has zero inhibitions. He then began calling Chuck E Hell-multiple times, daily even with questions about their facility & trying to make reservations . Then of course he wanted me to make reservations but I had to have a credit card. Mine of course was compromised (wouldn’t expect any less) & I had to wait on a new one to be mailed to me. In the meanwhile, Jack called our bank to see if he could find out any information on the person(s) who may of hacked my card. Then Jack started watching the video of his kindergarten & first grade year at Hamlet Presbyterian. These are the only kids he remembers from school in the videos, these are his friends to him even though he hasn’t talked to any of them since first grade. He still considers them his friends. He called them to ask them to go to Chuck E Cheese with us. What is so awesome is these kids would of gone, but I knew it would be too much on Jack & he would possibly have seizures & then I would have a mess on my hands with being so far from home. The list goes on & on with things his has done about this birthday. I so wish it was like when he was younger & didn’t pay attention or know anything about dates. He wouldn’t know anything about his birthday until a few minutes before it happened! Jack’s real-life story is mimicked after the children’s book If you give a pig a pancake. One day, I’m going to write a story about Jack in an adult storybook version.

Y’all just won’t believe what all we have had to contend with about this birthday. From Jack’s two caregivers, our family, friends, random phone book people, the employees of BB&T now Truist lol, the employees of The Berry Patch & Chuck E Cheese. It has been absolutely unreal & I think this year has been the worse yet. I dread going to Florence on Sunday. Thankfully, we’ve drummed up several adults that are going so hopefully they can help me keep him occupied & the ride to & fro won’t be so terrible. My biggest worry is him interacting with the games which is why he wants to go & being germy. But there is no virus big enough to keep him at home, we will have to face whatever repercussions that come from our Chuck E trip. He would beat our tails on a regular if he didn’t get to go. Then there is the dreaded junk prize counter to cash in your tickets for some dollar store trinket. It never fails, Jack always wants something that needs 5,000 tickets & he only has 289! Conveniently, if you don’t have enough tickets, you can also purchase items. It makes no difference to me though, I would pay $100 for a shirt & a Chuck E Hell pencil that will never be used just to get us out of there! Seizure-wise, Jack is doing better & Pekin Wok-wise, he is doing so much better. He was on an eating kick, we were unable to fill him up. Once we increased one of his seizure meds, both the excessive eating & excessive seizures slowed tremendously. All I can say is, y’all pray for us!!!

Should of bought a lottery ticket…when I had the chance.

There are days that are pure torture for a lot of us. Days of heartaches, days that you drop everything, days that you wake up on the wrong side of the bed. I recently had all of the above & continue to do so everyday. Owning a business is tough. Owning a business with a very high demanding, mentally & physically disabled child is even harder. My entire day & night revolves specifically around Jack, even when I sleep, rise, eat, & shower. Raising Jack even at his almost 19 years of age is very much like raising a toddler. There are times I have to feed him, he always has to have assistance in the bathroom, meals prepped-or in his case, purchased, then heated, then reheated again & again, clothes picked out, etc… After coming off a nearly two month long non-eating/non-drinking strike, he has now moved onto a eating/drinking binge. His appetite is insatiable. He calls Dixie Burger almost every other day that they are open to order multiple gravy biscuits & multiple fish plates. Not only does he call DB all the time, he is now on a Peking Wok kick, which is a local Chinese restaurant & it’s also my current location as I sit in the parking lot awaiting his food order. I told Jack he wouldn’t be able to have a birthday party (which is coming up) if he didn’t stop all this food ordering, y’all wouldn’t believe it. It’s utterly absurd the amount of food he orders! Last week, Jack & his main caregiver were Pokémon hunting in town & he wanted Peking Wok. He calls his order in, but I specifically told him not to order more than 2 plates. When his caregiver & he get to the restaurant to pickup the order, the total comes to $65. His caregiver calls me to inform me what was going on & she said Jack was very apologetic for ordering so much & agreed to let them put back some food. I was terrified he would show-out like he did last summer when they went to town. But all because his wants & desires were were not met on that particular day with his first food order, here I am sit in the parking lot of Peking Wok to fulfill his need to spend our money & that need is nothing but a form of control over us. It is simply amazing how mentally disabled Jack is but how conniving he is at the same time. Jack does whatever he can to test our patience, it’s almost like he is looking for a fight.

Last week one evening after we closed The Berry Patch, Ava & I & some of our employees went out to eat. Lee text me while we were eating to say that Jack was pretend sleeping. This is an ongoing issue we have had with Jack for years, it is always used as a ploy for yet more attention. The text from Lee resulted in yet another evening that I spent not able to fully enjoy myself because I spent it worrying about what Jack was wanting by playing possum. When I got home, Jack was fully asleep, there was no play to it. And for him to be asleep naturally that early in the night made me think he had had a seizure. That was confirmed when Jack woke up-he had soiled the bed. Normally after a grand mal seizure, Jack sleeps for 20-30 minutes if that & wakes up violent. This time, Jack slept for several hours after the seizure which was a tremendous blessing to us. He was able to allow the postictal stage to wear off which attributes to the violent attacks afterwards. The postictal stage is an altered state of consciousness after a seizure that causes Jack to be violent & he also losses the ability to speak for about an hour afterwards. It is such a scary thing to witness, even more frightening than the seizure itself, especially with his speech being paralyzed for an hour or so. He doesn’t realize what is going on & why he can’t communicate, which is why he gets frustrated.

By the time Jack woke up, it was around 11:30pm. He woke up unbalanced, but in a good mood. Dravet is an ever changing illness. Jack used to make really loud noises during seizures, the last few times he has had them, he has not been vocally loud at all. There are several reasons why I should of purchased a lottery ticket. First off, he actually slept off the seizure for two hours, this hasn’t happened in a really long time. Secondly, my oven broke on that same day. Y’all know I use my oven a ton, it wouldn’t heat on the inside at all. Lee had to pull the stove out, we researched the error code & were actually able to repair our stove without the purchase of a brand new one with a little assistance from our favorite repair guy, it only cost us $50! Thirdly, we had a photo shoot with Carolina Country magazine because we’ve been nominated as a contender for best ice cream in the Carolinas. For us, that’s a pretty lucky week!

Unfortunately for us though, that’s where the luck stopped. We’ve had some internal shakeups with our business, some leaving for college which makes us so sad because they are such good kids, although I’m super happy they are actually able to go to school. Jack & his food ordering has not slowed down one bit. We’ve spent well over $200 in takeout for Jack only at Pekin Wok in a short span of 10 days. Nothing hurts a Mama’s heart like a child who refuses to eat her cooking. He doesn’t understand nor does he care about the food cost. I am not being facetious in any way when I detail what all he’s been eating. He is an unfillable machine right now. Wakes up eating Chinese, 10 fried dumplings & they are huge, bowls of soup, egg rolls, wontons. This goes on all day & night. Jack is also in a non-sleeping mode as well, even with the assistance of sleeping pills. He was up at 4:30am one morning (not slept a wink) roaming around the house looking for something to eat. He finally decided on potato chips since he had eaten all the Chinese food. The sodium he is ingesting is so not good for him, no wonder his face looks swole to me! His order at Pekin Wok sounds like this: I need four orders of wontons, a large wonton soup, four egg rolls, four orders of fried dumplings, a large order of mixed vegetables, & a large steak & broccoli-spoken in a very annoyed Mama tone. He orders Chinese like he lives in a brownstone in New York City!

Our fridge has been taken over by his takeout. Now he’s wanting a Visa bank card to give to some leech he’s been talking to on Instagram who is posing as someone who is attracted to him. Jack literally is currently the real-life version of Jethro from Beverly Hillbillies. I wish I could be like Granny & get a stick after him & that would be the end of it. He has also has had another seizure within a week of the one I described above which is unusual for him at this stage in his life. I suspect it is due to him gaining weight & metabolizing his medications differently since he is no longer on a food strike. His face is filling in, his shoulders are broadening, & his belly is getting bigger. When Jack had the seizure, he was on our deck. I had just walked inside to get a plate because I was grilling. I heard something fall & it was him. Luckily, he was sitting on the deck seat & not standing, but he fell sort of under the seat. I was home alone, Lee had just closed the Berry Patch & was on his way home & I had also called for reinforcements because I did not want to risk scraping his body on the wood or getting splinters in him which would just create a whole other set of issues, but neither could be avoided unfortunately. He has multiple scrapes on his hands, knees, & feet, now. I used Dermaplast spray to appease his need for attention to boo-boo’s. Bad mistake. He has sprayed that mess nonstop. His room looks like the VFW on a Friday night with all the fumes from the spray. I’ll be so glad when it runs out! This is all we hear all the time now.

Can you see the plume of vapors from the Dermaplast?

Some of y’all probably say to yourselves “why does she do this, why give into him?” We only do all of what we do to prevent violent outbursts which are the most terrifying events I’ve ever experienced. I will never go through that again as long as I can prevent it. We are in a damned if you do & a damned if you don’t situation. So not only has all this happened, but I was also attacked by honeybees at The Berry Patch. We had a swarm come through on a Friday evening & I was stung…a lot! One ended up getting infected of course, I think they were the murder hornets everyone was referring to a few weeks ago. 2020 has sucked!

I use the term a lot, “should of bought a lottery ticket” in everyday conversation. If I find a front row parking spot at Walmart, I say it, if all the stoplights I go through are green, that’s my mantra, if we have good service & good food at a restaurant (strange combo I know), I state that. If I would of had extra money during our lucky week, I would of bought a lottery ticket, but all the Pekin Wok orders literally ate into our extra funds. It’s strange how Jack has flipped a switch in his eating & sleeping habits, this is why I say he is bipolar, he goes from one extreme to the other. Our desire is for Jack to live somewhere else in a nice residential home as long as he is acts the way he does, that really is the safest option for us all. My special request for all that follow our journey with Jack is to pray that we will be led to a facility that can best serve every need that Jack has, but makes it feel similar to home with wonderful people to look after him. In the meanwhile, I’ll be running up & down the road to Pekin Wok, making videos with my Mama, being Jack’s servant, & wishing I had bought that lottery ticket. Y’all take care!

Bring back the old Facebook

What times of turmoil we live in. It makes me sad. The whole energy of our country is off. People aren’t happy any more which is a combo of many things. All the news is bad, people are ill, people are more lonely now than ever. This is how I have felt in the latter years of my life, but I have been able to feed off of others people’s positive energy to improve mine. Now that’s not the case. I’m just blah. As craziness still continues in our home with Jack, I look to other people to help lift me up & that’s not happening any more. People fuss about everything. Anything good that people try to do, there is always a negative Nancy lurking around the corner. It’s more prevalent now because of social media. The isolation that people have been experiencing because of Corona is no joke. Now for me & my family, it’s not really been any different since we own an essential business, the only difference for us, is other people not enjoying life as much & Ava doesn’t have much to do other than work. People don’t have any news to share since there are no goings-on, people are hung up on politics, masks, & negativity. Everyone is a doctor, a nurse, & a public health specialist. Everyone judges you from the way you tie your shoes to how you look. Social media in many ways is the devil. Critics are everywhere. I miss the days when Lee used to call Facebook, Foodbook because all people posted about was what they were cooking and/or eating. As much as Mama & I like to chide about people not being able to cook, it’s all in good fun. Nothing is ever meant to be malicious. We have tried to bring a little laughter into your hearts & home with our videos. But people can be so hateful, some have nothing better to do other than sit on their phones & criticize others. I made three posts on Facebook the other day & one on each one, someone had something negative to say. One was about us having to explain what a soft peach is. Excuse me, but if you don’t know what the word soft indicates, you got problems. So I took that post down. One was about our homegrown tomatoes being in, I was criticized for saying the word mater. Obviously I have somewhat of a vernacular or I wouldn’t write blogs, it was meant to be funny. This has made me despise people. There is no way a person could say nowadays that the sky was blue without some idiot arguing with you. I am sick of it. I would love to close the book on Facebook but can’t because that’s how we reach a lot of our customers. People, you don’t have to comment on everything you read. If you don’t like it, keep scrolling, it’s so very simple.

I was thinking last night about people in similar shoes as we are with Jack, especially during Corona. I call Jack an abuser, although his abuse is inadvertent. The abuse he puts us through is similar to what I think a wife or child of an abuser must feel. Walking on eggshells, afraid of misplacing something that the abuser might need & can’t find, afraid in general of breathing the wrong way & setting off a violent attack. Some people are tortured daily with violent attacks, a lot of those people looked forward to school & work to get away from an inescapable situation. I told Lee that the things Jack said to me & did to me, would put any man I was connected to other than my child 6 feet under, but I take it from Jack. Why you may ask, it’s because the system is broken. There are extremely limited facilities for Jack due to having both mental & severe medical needs. He could go to a place for 45 days no problem, could go tonight, but he has to be out by the 45 day limit. That’s not even an option. When Jack goes somewhere, it’s going to have to be for good. By the time they got him settled down from the transition from home to facility, 45 days would be up. There will not be any coming back because he is going to hate & resent us for taking him out of his home, out of the only place he has been able to find comfort. I can’t even imagine a living a life without him being a part of ours, but it is going to be a necessary evil. Every second of my day & night revolves around Jack. I feel for all of those connected to me, my time for the last 18 years has been severely tied up & my mind distracted with the worries of what Jack is up to. I distracted my mind in downtime a lot of times with Facebook, looking at pictures, being jealous of friends vacations, but I loved it. Those types of things were something that helped me. Now, it’s not fun. Facebook is mean, vicious, political, crazy. People have no life any more because of Corona. People say, “I don’t want to go back to work” or “I love staying home”. Well do it boo boo, but it’s not feasible for most.

There are times that I despise Jack. He can be so mean & hateful. Just this morning as he woke up, he talked to me like he was the ruler of the world. Get me this, get me that, stop that mess were the words I heard. The only difference is, I get to go to work in a few hours & I can forget about his “tude” for the time being. A lot of people don’t have that luxury now, they are forced to avoid work & school due to the shut down & that’s just not fair. The control Jack has over our lives is unbearable a lot of the time, imagine not having any interactions & being holed up in a house all day with a Hitler type without any reprieve. I know Lee & Mama get tired of hearing me complain about Jack & perhaps y’all, but they/y’all are my only sounding board. Keeping Jack in our home has been the most binding, unsafe, detrimental decision we ever made. If I could turn back time, I would of started our journey in finding a home for Jack much earlier than I have. No doubt this is going to be the hardest thing we will have ever had to face to date when it does occur, but it is necessary. It’s scary to think about. It would be easier if we could talk to Jack about it, but our hands our tied. He would flip out.

Jack’s newest thing has become the “stomachache” that some kids fake to avoid going to school. His is to get more attention. Anytime I get ready for work or am delayed in coming home, he starts about his stomach. Now it could be true, but I’m pretty sure he is only complaining about it during those times to get more attention. So infuriating & frustrating.

This blog is all over the place I know, but I seriously can’t take people any more. The majority of all are cool, but some of ya ain’t. I realize that Corona is real, I know that it has taken lives, but the way we are living now is hurting so many people mentally & physically in some cases, economic ways, just all around hurt. Stop being the mask police, stop being the political popo, stop judging every freaking one for having an opinion different than yours. As I said in a previous Corona blog post a few months ago, mind ya business. Too many people are hurting due to being quarantined & shut-in, our children & elderly especially & those in hospitals & residential facilities. Their hearts are breaking by not having any visitors. And I know from personal experience with Jack & my Daddy, that if you don’t have a patient advocate (aka a loved one) with you while in the hospital, mixups happen. All of this is so unfair & now because everyone’s strings are being pulled too tight because of Corona, quarantine, political divide, not having any leisure activities to take your mind off of all of the above, those strings are about to break. We all need to calm down (self included). Think & post about positivity, find things that make you laugh, read, cross stitch, anything to keep negative thoughts & words from entering your mind & the keyboard. Most importantly, just keep scrolling! So although whether people are or aren’t wearing masks can be concerning, don’t make it your life or obsession, it’s annoying no matter where you fall on the decision. You aren’t going to convince an adult either way. Just try to be happy if you have a nice home life, home is everything to us & is a safe place for most of you. Focus on the positive things in your life, not what people are or aren’t doing.

In the Walmarts

Strange things happen at”the Walmarts”. I’m sure their employees have a long list of craziness that happens on an hourly basis, much like crazy people we encounter at The Berry Patch. One of our girls got asked if we had seedless peaches, people are crazy! And never judge someone in pajamas in the Walmarts, more on that later. That’s just a hook to reel you in. Each time I write a blog, I wonder how on earth could I possibly find anything else to write on? I think I’ve told y’all all the crazier stories in my life, and I honestly didn’t know that Jack could do many more foolish things, but he has proved me wrong yet again. His resiliency is astounding, Jack absolutely amazes us on how much he can tolerate (myself included, frankly). For those that keep up with Jack, you know that he is having a severe issue of constipation. I know, not glamorous talk, but this is one of the cruces of his current state of problems. Jack is still continuing his protest on not eating nor drinking. He is irritable. I’ve given him laxative after laxative, stool softeners, tried to get him to go to the doctor, nothing has worked. This is a Dravet problem. He rarely moves, often spending his entire day in the bed, not even getting up to urinate in well over 24 hours spans. Dravet children/adults can be anorexic. Jack is the poster child for an anorexic, he truly has lost so much weight & couldn’t stand to lose any to start with. He now weighs 105lbs & is 5’9. So he doesn’t get up & walk around enough to poop, doesn’t eat or drink anything to get things moving, nor will he drink anything to help combat the issue. Enough about pooping, here’s the sorry.

Jack had over $100. Earned money at that blooming yard sale selling those Pokémon pins last week (I’m in the wrong business). He started around 7pm the other night about wanting to go to Walmart. He’s not been to any store in months. I was unsure if Jack would be able to physically endure a trip to Walmart, but as you all know, telling Jack “no” is a death sentence for me. Luckily for me, they closed at 8:30pm, this would limit our time inside the store. We got there at 8pm & the checkout lines were backed up into the clothing department & beyond. People were trying to get out of there before closing time. Near the cash registers, there is an aisle of Pokémon cards & such. This is where Jack’s first stop was. He dissected every inch of the Pokémon section, which just so happened to be right beside a busy cash register. He was all up on those people in line, sticking his butt out on people, stepping on their feet. Jack was walking like Otis the town drunk because he is actually weak as water due to not having ingested any significant amount of food or drink in weeks. We are both in masks, which is not a good thing for Jack because being a Dravet patient, he can not regulate his body temperature like most people can. That made me even more worried. He also wanted to visit the toy & movie section of the store which is a long way to walk especially if you haven’t walked any further from your bedroom to the bathroom in weeks. We made it to all the departments Jack wanted to hit with an armload of Pokémon junk & with five minutes to spare before closing time. The checkout lines were still backed well into the clothing department. I’m thinking, how is Jack going to stand here this long? Most people had carts full of groceries, we had only five items. He plops down on a table holding folded shirts. As he was resting, Jack became focused on one thing & one thing only, a tear in the cellophane wrapping on one of the Pokémon boxes he was purchasing. When he asked to exchange them, I told him no, we couldn’t get out of line, there was nothing wrong with it. It was wishful thinking me thinking he could be reasoned with. What happened next was a doozy, the inspiration if you want to call it that of this blog. Jack gets up from the shirt table he was sitting on & stands next to me in line & fully collapses on the floor! I just knew he had gotten too hot & had done too much. Thankfully, two precious strangers picked Jack up. One fella walked Jack to the service desk with his arm around him the whole time. Because of this evil, devious Corona crap, there are no seats in the Walmarts! Jack had to sit on the floor for rest. I recognized a guy behind the service desk that I went to school with & ask him for a bottle of water. He gave Jack one, Jack rested a few minutes. Two associates came up to us inquiring about Jack & wondering if we needed any help. All Jack was concerned with was exchanging that torn up Pokémon box for one that the wrap was perfect on. He tried his best to get those ladies to get him another one but neither one understood what Jack was saying. It was then that I realized Jack had faked the whole collapsing episode. He manipulated the situation to get what he wanted. After his break, he got right up & went straight to the Pokémon aisle like nothing had ever happened. What a pure pain his is. Nothing is ever easy with him nor simple. This alone goes to show just how devious, conniving, & mischievous Jack is. He collapsed while we were in line simply to exchange the Pokémon box that had the torn wrap.

Now why do I say don’t judge people wearing pajamas at “the Walmarts”? The family that was standing next to us in line, the Mama had on pajamas & bedrooms shoes, but she raised her children well. Her son was the one that picked Jack up off the floor, including another man that was not associated with the family. All were very concerned about Jack & his safety, two total strangers. I was once again reminded how wonderful the kindness of others really can be. From the strangers that picked Jack up, to the Walmart employees, everyone involved made sure we were okay, even if Jack was faking. In effort to try to get Jack to eat some food, we went to Sonic, but all he wanted was a root beer, I got a Coke. He still didn’t/doesn’t have any desire to eat. All Jack had literally eaten that day was two pancakes, that was the first bit/bite of food in days. I was hoping he was on the healing end of this cycle. I also thought we could kill some time at Somic’s dine-in area because Ava had a friend over swimming with her without Jack interrupting. Of course this would be the night he didn’t want anything but a drink at Sonic. Divine intervention at its best showed up at Sonic though. The family that assisted Jack & I at Walmart were also there, I felt like that was a sign I should buy their meals & I gladly did. It was a small gift for the help we were blessed with.

Fast forward a few days, Jack finally allowed me to take him to the doctor after weeks of me trying. The doctor said it was nothing more than constipation, he did an examination & lab work as well & all was well with that. He is still not eating much at all, nor drinking. We are working on other measures to help aid with his current issue. As I write this blog, I’m hanging out with Jack in his room watching him work on writing Japanese symbols, I am tearful. He wants to be able to do this so badly. His handiwork is that of a toddlers. Makes me so sad that Jack’s condition is the way it is. The last two weeks or more have been very challenging for us all. Jack is needier than usual, requiring more attention than Lee or myself are able to give. He is not wanting much to do with his main caregiver either. He calls me home all day & evening long, is more irritable than usual, & sleeping more. A large part of his problem is not wanting to take the time to sit on the toilet to expel. Jack thinks 100% of my time should be devoted to him. A large portion of it is, it’s just not enough for him.

As frustrating as Jack can be, I certainly don’t want to see him in this condition. We go from one extreme to the other most times, with happy-mediums rarely occurring. I am thankful for the individuals that assisted Jack at Walmart, Jack thanked them personally as well-even though what he did was purposeful. Jack is currently asleep on my lap, it’s just past midnight, I haven’t yet showered from my day spent at The Berry Patch. He looks like an angel to me as he sleeps.

As I reflect on the worse part of that evening, it was accidentally sipping Jack’s root beer instead of my Coke. That stuff is horrendous! And remember to be kind to others in the Walmarts, you don’t know what they are going through.

Had a Bad Day

Ever have one of those days you just know is going to be sucky? Of course you do, I just had one of those as many of you know from watching my most recent video on Facebook about Jack & his iPad getting broken. I knew that particular day was going to be hectic, I knew it was going to be bad, I only didn’t realize what form or shape the ugliness would occur. I try to take one day to give to Ava, although my full attention can’t be given to her often times because of business matters, but I do try to make the whole day revolve around her for obvious reasons. This past Tuesday, a friend needed a test subject for a spray tan & I signed Ava up. We had to be there earlier than I like to willingly leave our house due to Jack not being awake, but I begrudgingly shoved forth with the appointment even though I knew there would be hell to pay later that day in some form or fashion. I tried my best to get Jack to awaken before we had to leave. I never like to leave the house without him being awake or having taken his meds. Jack is used to me doing those things & sometimes doesn’t take well to another person filling in for me. As Ava & I made the drive to the spa, I silently prayed for a good start for Jack. While Ava was getting sprayed down, I prayed Jack would awaken happy. The whole time in the spa, I spent my time on my phone texting & calling to check on Jack, so in essence, I was taking time away from Ava. Thankfully, Mama was able to assure me Jack had taken his meds & his caregiver had arrived, all was well at that point.

After the call to my Mama to check on things was reassuring, I got a call from one of our employees that the credit card machines had stopped working, normal occurrence for us. I have some sort of magnetism that causes cash registers, computers & any sort of electronic to blowup. I don’t even have to be in the building for this to happen, guilty by association! Yet another fire to put out. Calling tech support or customer service for anything is not my strongest suit. I am such an angry person by the time I get to speak with an actual human, only to realize I’m talking to someone overseas & most of the time, I have no idea what they are saying. Last time I called SiriusXM about my service, I talked with someone that had very bad broken English & a car alarm kept going off. I had to wonder where in the world she was working from, the pure-t streets of New York City? Any way, when Ava & I got back home so she could bathe after her tan & such, Jack wasn’t in his room. The last month has been very trying with Jack health-wise. He hasn’t been eating hardly enough to keep a mouse alive, or drinking enough for nothing. Most days only drinking one sip of drink for am & pm medication times & that is it. This is a Dravet trait, these kids/adults have feeding issues. Some are medication related, but the main impact is from Dravet itself. Jack has had the passion to eat (maybe), requesting food from here, there, & yonder, but had/has no desire to eat. I say maybe because Jack has a strong desire & obsession with food. He desires to spend our money relentlessly on frivolous things all the time, food is a big one. He is obsessed with ordering food & being the one in control but will not touch it when brought to the king himself. Jack has had a very pale (more so than usual) pallor, not been talking a lot, irritable, & it’s been a struggle to understand him at times because he was too weak to talk. He complained last week about his side hurting, so I asked him if he’d go to the doctor to see about it. He said yes, later that evening he told me he wasn’t going. There is no way to make him so to the doctor at all. I do what I can at home to treat him with what I have. He hasn’t coughed, ran a fever or anything unusual. This is plain out Dravet as well.

Back to seeing Jack out of his bed after the spray tan. He & his caregiver were outside, which was worrisome & only added to my confirmation that today would be a bad day. I’ve always said if Jack gets out of the bed within the first hour of being awake, it’s going to be a bad day. Jack was on the deck with his caregiver discussing having a yard sale for his Pokémon pins. There are several things that Jack loves, its spending our money & making money. He has 100’s of these pins. He & his caregiver setup in front of our house with a table, his pins, & a bottle of Coke he had been nursing on for well over a week. He had a customer within the first minute of being out there!

When has Jack participated in yard sales in years past, it has always been a fiasco. He would run around like a chicken with its head cut off, would ask ridiculous amounts of money for a piece of junk, shake, tremble, eyes dilated. The best way to describe his behavior at a yard sale is like that of a heroin addict. He talks nonstop, hands tremble, pupils dilate-all from the excitement of the whole situation. It’s too much for him thanks to Dravet (another evil characteristic). Not figuring Jack would last long outside since it was hot, he surprised us all & stayed out from 1pm-6:30pm. The ruckus started around 6:30pm just as I was about to go into the restaurant to try to have an enjoyable meal with our oldest, who we had not seen in weeks as well as Mama & Ava. Our chosen spot was Bad Daddy’s Burger Bar. As we were pulling up to eat, this is when the ordeal began, bear with me as I recount the middle part of the story.

It was shortly after Jack got setup for his yard sale that Coleman called wanting me, Ava, & Mama to ride up to Charlotte (his new stomping grounds) to get his old truck. Coleman is a recent graduate of NC State, has a job in the Charlotte area, & just purchased his first adult item, a car! We’ve not seen his apartment yet, so we were anxious to see his new place & inspect the liquor cabinet of course! We helped Coleman do a few things inside his apartment & later helped him load a chest of drawers to return to Big Lots (he is my child after all lol). As we were approaching the restaurant (I am nearly two hours from home), Jack’s caregiver called to explain that Jack was upset & had the potential to become violent. Jack of course has all his electronics outside with him during his yard sale. One of the chairs they were sitting in was black just like his iPad. The iPad blended in perfectly with the seat & his caregiver sat on Jack’s iPad & shattered it. It was in a case, but it still broke. Jack then flipped a chair, flew in the house, slammed the front door & slammed his bedroom door shut. Sort of typical teenage behaviors from what I’ve seen on tv, thankfully Coleman nor Ava acted like that, but when Jack does, we know the outcome could be dangerous. She called me first which I’ve always instructed her to do, I then called Lee who flew home not knowing what to expect. I called Jack & tried to explain it was an accident, it would be replaced, all would be well. Unfortunately, Jack doesn’t have a reasoning bone in his body. He was pretend sleeping which is an attention seeking method he uses often. He can go from pretend sleeping to Ninja fight mode in less than a millisecond. He did not thankfully, although we were all worried terribly he would become violent.

I had to do several things while trying to dine with my family. One was become preoccupied with a brewing situation at home, calling Jack, Lee, or Jack’s caregiver every few minutes to make sure things were calm, reassure Jack I would go purchase another iPad that night. Not only could I not enjoy the company I was in, I had to drop a wad of money on an iPad & case, something that hadn’t been budgeted for of course. The first Target was out of iPads, the second one had one left & it was a pricier iPad more than I had planned on spending. Instead of taking the chance of going to another store & risk them being out, I bought it out of fear & a time constraint. Fear Jack would fight us all if I didn’t come through. I honestly don’t know if I could live through another fight with him. He is too strong for me & I don’t know why. He doesn’t ever move, ever! I walk around all day long carrying heavy boxes, lifting watermelons & such. I am strong, but I’m not Jack strong. Jack’s mind is strong, too. He is the most strong willed person I know. Because his mind is so strong, it keeps his strength going when he is in fight mode. I go through scenarios in my head planning what I would do say if I were in the kitchen & he attacked me. What would I do if I were alone? Ideally, I would love to have a huge net in each room that I could get to to throw over him while I lock myself in a room until help arrived, but that’s not feasible in the least. All I know to do is knock him to the ground & hold him down until someone comes to help, if that would even be a possibility. Once home with the iPad, Jack didn’t even care about the new one. He is still focused on his caregiver breaking the iPad. She is a tough woman! Anyone that willingly stays with Jack is a blessing & I have to believe they will be sporting a crown in heaven one day. Is it an easy job physically, yes, but mentally it is not. And even some days, your physicality gets tested. I am grateful for anyone who puts their well-being on the line for us & him. I ask myself all the time, why are our lives this way? Why must we live in fear daily? Why can’t Jack find satisfaction with anything & why can’t he be reasoned with? As if the Dravet diagnosis isn’t bad enough, we have a whole other list of issues to contend with.

It is so scary living with a ticking time bomb. I’ve never been one to be involved in fights, only getting in one & it wasn’t really a fight when some gal from Rockingham was dissing us Ellerbe gals. Don’t mess with my hometown or people lol. Fights scare me, they always have. Some people are drawn to them, get involved when the issue doesn’t even involve them, record them, encourage the fighters. I hate to see any person hurt, no matter who they are. I’m the person that would be willing to fight if I see an injustice. I’ve seen kids being bullied before & have stopped to breakup a fight or intervene in someway. Never would I be willing to witness an injustice on anyone. I wish we could all be this way.

Humanity…humanity can be amazing. We all makes mistakes, we all have accidents, we all can be mean, overly tired, & my favorite term, illboxes. When I put out my video of riding solo home from Charlotte on Facebook a few nights ago & asked for prayers for a peaceful night for Jack, I was touched by the many prayers our family was gifted with. It was then that I realized people really do care. People are so kind, people have huge hearts. Our family is so blessed to know so many people that care about our situation. My heart breaks everyday for so many reasons, mostly for all that are housed in our home, but it hurts for our entire population. Why people can’t get along & accept each other as is makes me sad. So many people don’t know what it’s like to be a caregiver or have an ailing child or a family member or friend with a chronic, devastating disorder or disease & that is great. Being exposed to these things makes you more compassionate, but it also hardens your heart in some ways like mine has become. I don’t have time for nonsense or foolishness or frivolous things. I know longer care about my looks, what I wear, or what people think of me. My message to you all is simple & one I think we could all stand to learn & practice daily, be kind, unless someone is acting foolish or “stew-pid”, then speak up & act a fool! Also, please continue to pray for better days for Jack. He’s still not eating or drinking & is sleeping more 13 hours or more a day. Although he is getting a large amount of sleep, large amounts of sleep aren’t a good thing for most people, it makes most people extremely irritable. The later he sleeps, the later my day starts. I’m not able to get out of the house now until almost 1pm because he’s sleeping so late. Not sure about why the recent changes in sleep, I may never know or understand. It’s 12:09pm as I wrap up my final paragraph of this blog & Jack is still asleep. There is so much I need to be doing at work, but can’t. Until next time. 💜