Covid Chronicles

Covid…it’s a weird thing. It is something that has affected our entire land. There’s not one person that hasn’t been impacted in one way or another-other than maybe indigenous tribal people that are landlocked without visits to stores, that totally rely on the land for living, & without any imports & exports (now I’m sounding like Sonny from General Hospital…, he was in the import/export business). As I’ve written about before, we (as in our family) have not really been affected as far as not being able to do activities during our shut down phase, we never really do anything but go out to eat & work any way. I do however miss taking Jack to the movies, especially this past summer. There is something about going into a movie theatre on a sweltering summer day & enjoying the coolness of the atmosphere with a Coke & popcorn in hand.

Mama & I are still able to take our trips to Southern Pines for our food reviews so our routines haven’t changed much. But the one thing that has changed for me are my shopping habits. I know Belk wonders what in the world happened to that woman that bought $300 worth of clothes every few weeks & her coupon never worked by the way & would return 50% of the items! Belk has always been my stomping ground, I’ve written a blog about that before. You need a funeral dress, go to Belk. Need a dress for a wedding, go to Belk. Need a pair of black pumps, Belk. Belk was always an essential part of my life. I’m no clothes snob that’s for sure, I buy clothes from Walmart, Roses, Family Dollar, doesn’t matter to me as long as I like it. During this pandemic, I’ve come to realize shopping is no longer an activity I enjoy. There is no where to go to show off outfits, plus, I don’t care to wear anything nice. If I ever wear anything other than a Berry Patch t-shirt, Ava asks where I’m going all dolled up! It will be the same hairstyle, makeup, shoes, pants/shorts that I wear with my BP shirts, but let it be a plain white tee, I must be going to the White House! I still have to do my Berry Patch shopping, so I’m able to get some of the same thrills. I’ve never been one to have clutter & stuff just to have it, but I seriously got tired of having bags of clothes in the house & having to deal with them. The task got to be daunting. I stopped shopping for things for myself cold turkey & haven’t missed it at all. I wish stopping eating were that simple!

What a year this has been for all of us, some have suffered more than others due to Covid. My heart from the very beginning has gone out to the elderly that may have already been confused about being placed in a nursing home or those in mental facilities that can’t have visitors. I have to wonder how many of these poor people passed away from a broken heart, not Covid? We’ve had challenges with our business that has affected us personally this whole entire Covid season. Things that just make you cuss! When you own a family-run business, you honestly can’t help but feel things personally. It’s hard to separate work & home, it all begins to run together. What a season we have had. It was certainly our busiest one yet.

When the new year began in January of 2020, we were facing a lot of the same issues with Jack that we’ve had to deal with for the last few years; scammers, instant demands, possible aggression & the return of new & old seizure types. How could new seizures erupt I wondered, I thought Jack had already gone through each seizure type there is, but his life motto has always been to prove me wrong! As the year progressed, we saw the strong resolve Jack once prided himself on somewhat diminish as his health has declined since the beginning of October of this year. Eating is nothing that concerns Jack like it does most of us. Using the bathroom is not anything he wants to take time to do. Sleeping has become an important part of his regimen now. I’ve seen the time he has gone without sleep for three straight days, now he sleeps 16 hours a day. It’s weird how life does a body. There are sides to Jack’s more hyper side of his personality I desperately miss, but I’m not going to lie, I am enjoying the calmer side of Jack that this change has brought along. It would be totally awesome if he could be like this & enjoy food again. Jack is the sweetest, calmest person in the house now. I’m not totally convinced this is a permanent change, he did go through a bad cycle in early October like he normally cycles through, but Christmas is coming up, so he could be acting this way because Santa is coming. I certainly pray the change will be one that is cemented harder in the asphalt than a light post at Food Lion-and let me tell you, they are rooted in the ground well! I’ve hit one head-on & totaled my Suburban, even moved the engine! Story for another time.

I have worked on this blog for several weeks now & throughout these last few weeks, the night I am finishing this has been the most challenging night I’ve had in a while. Jack is extra needy, clingy, wanting my attention more than ever. He called me this afternoon requesting Mama Noi’s subs. As always, his eyes are bigger than his stomach & he ordered two large subs, two orders of fries, & two drinks. I’ve been in his room for over four straight hours with him rolling all over me, touching me, getting upset if I don’t understand what he’s saying, & him wanting to sleep in my bed tonight-that is not anything I can take. Lee Berry is lucky I allow him to sleep in the same bed as I lol. I’ve heated the one sub he has allowed to sit on his bed all day & night three times-it’s midnight & the one half still isn’t half eaten. I fed him two jello cups manually, held his cup for him to drink two cups of liquid, watched Friends with him, fetched the heating pad, listened to Christmas music, read a story, the list goes on. On top of all that, I spent a large part of my day on the phone with one of the pharmacies which is a mail order pharmacy about Jack’s medicine that the doctors office messed up. As I was busy doing everything with him tonight, it struck me that I think Jack’s wisdom teeth are coming through causing the issues we are seeing now, at least I hope that’s what is wrong. What is simple for most, is extremely complicated for Dravet people. Only time will tell.

Ava wants us to have another child. That girl is off her rocker! Having Jack is like caring for a newborn. In my fit of frustration tonight as I was getting the heating pad for Jack, I told Lee I was too old to be working this hard (not exactly in those nice terms). Covid has left us all ill (like ill-box ill, not Covid ill), bored, some fitter, some fatter, any way you be, be nice. We are all socially-challenged at this time. Don’t go causing problems with the people you are around the most just because they are the people you ARE around the most. Have I lost you on that one? Those who know, know! It’s tough, I get it. Our family was quarantined before quarantine was a thing, have been for 19 years & we survived, you will, too. Do good deeds for others, it makes you feel good. Throw a roll of toilet paper to a neighbor, spare a hand wipe, anything that will make another’s heart rejoice. Let’s all hope this is the last Covid Chronicle I write about, hopefully soon the title will be Shut Down Lifted!

Worry…

We are told it is a sin if we worry. Not only am a sinful person, I am especially sinful in this arena. This is something all good parents are guilty of no matter what the age of our children. Both Lee & myself have spent more than 20 years worrying relentlessly over our children, in particularly, Jack. I reported last week in a blog that Jack was in a bad cycle. He’s not been eating, not ingesting a lot of fluids, & he’s been sleeping a lot. Bed before 11pm, not waking til after 1pm the next day & that, is with a lot of work. It is so scary trying to wake him because he can be combative when awoken, he’s also been napping in the afternoons & evenings for a couple of hours . We’ve been in this stage before, but it never gets any easier, Lee & I both think each time around, the cycles last a little longer & become more difficult to break-this one sure has. Last Friday, he ate four apple slices, two of them he allowed me to put peanut butter on. I had to feed those to him because he said he didn’t feel like it. He didn’t eat anything else for another two days. It seems like the bad cycles which are also good cycles-I know that may not make sense to most of you, let me explain. It’s awful in that he is not getting nutrients, looks bad, feels bad, sleeps too much. It’s good because he is no problem whatsoever, his kind heart shines through no matter how bad he feels. When Jack is eating & sleeping on a regular schedule or pulling one of his all-nighters, he eats everything in the house (as long as it’s take-out lol), gets into internet trouble, & is an illbox. There are no in-betweens with Jack, it’s one extreme to the other. I would love for there to be a happy medium.

A week ago, Jack did something that I thought he might would have lasting damage. Note: the bad cycle had already started prior to this. It scared me to death. Jack is mischievous, always has been. He once pulled Coleman’s first tooth because Coleman was scared for it to come out. Jack had heard us talking about Coleman’s loose tooth, we would try to pull it & Coleman would cry hysterically, we didn’t get anywhere. Jack took matters into his own hands. Jack snuck into Coleman’s room at the age of four & yanked it out of Coleman’s head after he went to sleep. Coleman comes running down the hall covered in blood, we had no idea what had happened. Jack had happened! Looking back, it’s so very funny to us & one of my favorite stories about the boys growing up. Since Jack has gotten most of the attention his entire life due to his life threatening condition, he is very needy for companionship & attention. If my evenings aren’t spent in his room sitting with him, he is apt to do something foolish. One of his attention-seeking schemes is falling. In the past, he faked a seizure by fake falling & pretend jerking at one of Ava’s birthday parties. She was getting gifts & all the attention & he hated it. These stories are to show an outline of what kind of prankish behaviors he has. Fast forward to a few nights ago, Jack already had his nightly dose of meds. Some of the meds make him sleepy & he is already lethargic from not eating, so what he did was exasperated by himself to the nth degree. Jack runs through the house all the time, that is nothing new. On this night, I was in the kitchen by a little table we have in there when Jack came running from his room & into the kitchen when he threw himself over the table, flung his body backwards which was all on purpose at this point, but what he wasn’t expecting was the rolling chopping block table behind him. When he threw himself backwards, he hit the back of his head on the corner of the table which is metal & pointy & fell down. I had a ballgame that night at 8 & didn’t get home until late so I did not have the opportunity to spend any time with Jack as of that point because I had to take a shower as well. After he hit his head, Jack was out. He wasn’t knocked out, but he closed his eyes in a pretend sleep (which he does often as well) & ended up falling asleep while pretend sleeping. I was worried sick. I naturally thought the worst. Lee, Ava, & myself carried him to his bed & all I could do was pray & tell myself he was going to be okay. I worried he would have a head injury. Praise the Lord, two hours later, Jack woke up & started talking like everything was normal. I was still awake praying when he awakened. The Lord knew I needed to know he was okay before I could go to sleep.

We’ve tried enticing Jack for two weeks now with his favorite foods from hotdogs from Dixie Burger or their flounder plate, to happy meals, to Chinese food, but he just isn’t budging. Many Dravet patients have g-tubes as a result of a lack of nutrition, this would be a wonderful option for Jack, but he absolutely would not tolerate it or have it. This is one of the perils of having such an aware disabled child to care for. If Jack didn’t have behavior issues, we could take him to the doctor without problem, run labs as needed, everything that is currently complicated & difficult with Jack would be so much better. Over the last week, Jack entered a state called obtundation. Obtundation is a state of seizures that occurs pretty much all the time. For him, it is head tremors, eyes deviating, staring off, not to mention, he’s severely constipated. His refusal for care is heart breaking for Lee & myself. Think of your own child or loved one having a virus & not eating for a few days, how that breaks your heart. This has been going on for nearly two weeks now. I can sometimes bribe him into eating an applesauce or jello, but he needs fat. As I made some medication changes along with his doctor last night, I prayed over Jack that the Lord would help break the obtundation state of seizures with the increase in meds. I’ve also contacted his doctor about possible palliative care. I am hopeful that Jack will be a candidate for palliative care, hopeful they can provide in-home hydration that I feel sure will help him feel so much better when he enters bad cycles. Each time Jack allows me to feed him something, my heart swells, I pray with each spoonful of Jello that it will give him enough nourishment to make it through to the next day & that the next day, Jack will wake up famished.

As Jack lies in bed day after day cuddled up with his blue Care Bear bundled in blankets, I realize how fortunate I am to have been afforded the luxury of being able to stay home with Jack when needed. If I need Lee to be at the house, he’s home within minutes. As tortuous as some of the days have been, there is a silver lining in the knowledge that we did & will continue doing everything possible to care for all three of our kids. Watching Jack suffer over the last few weeks has been excruciatingly painful. Living with someone that is suffering is one of the hardest things we have yet to deal with. The pain we experience when Jack is violent is terrible. The heartache we feel when he is withdrawn & interacting with strangers & being scammed is different from what we experience when Jack is not physically well. It’s easy to dislike someone when they are being mean, vile & hateful, but when suffering enters, the emotions are totally different. I ask of each of my praying friends that you pray that Jack will wake up hungry again, that the obtundation seizure state will end, & the medication increase will be a smooth process for him. Thank you all for each prayer you’ve ever blessed us with, keep them coming.

This is Jack on Halloween as Tenderheart Care Bear. Halloween was difficult & different for him this year. Not only with the virus going on, but Jack was really weak & having a ton of seizures. Although he dressed up, he didn’t get to enjoy it & we only had three treat or treaters.

Big white house

When I was a little girl, even a young adult, I admired large houses with neat yards, swimming pools, nice cars. This meant to me that the folks that lived there were people that didn’t have any problems, lived a comfortable life, had no worries. Now of course, I know this to not be true. There’s a house in Pinehurst that I would love to have. To me, the house screams security, safety, calm, peace. It has lots of windows, lots of trees, the yard is peaceful looking, it looks like a dream, but who really knows what goes on in that house. There could be secrets in those closets so disturbing that could become national news. There could be an abusive husband that lives there, a person with a terminal illness may live there, the possibilities are endless. I like to think the best, so I’m going with the idea that the people that live there have an amazing life. I’m more of a Pink Houses type of gal-it’s a song by John Mellencamp if you’re not familiar with. Irony, it is a funny thing! My last blog was titled Jack & Diane, yet another song by Mr. Mellencamp. Who knew that I would write two blogs back to back centered around his songs. Thankfully, Jack & the person “Diane” he was being scammed by faded. Jack’s behaviors are very cyclic, some cycles lasting longer than others & vice versa. We never know what we’re going to wake up facing on a daily basis, even an hourly basis. As a follow-up from the last blog, “Diane” some how, some way, got the phone numbers for several people in Jack’s contacts. He foolishly gave the person his login info for CashApp, which I think the person was able to find contacts via that app. I don’t know why these scammers are so stupid. “Diane” sent messages to several people in Jack’s contacts asking for their friendship. My sister Jodie happened to be one of those. She asked “Diane” to call her, Diane asked why. Jodie said, “you said you want to be friends, so let’s talk”. After that, she didn’t hear any more from the scammer.

One of the advantages of Facebook is that I have been able to connect with other parents who also have kids with Dravet Syndrome. It is a small group of members, I think there are a little over 2,000 members on one of the Dravet Syndrome pages. That many sound like a lot to you, but in the grand scheme of the world, it really is a minuscule amount due to the rarity of the disorder. About once a month, there is a parent who makes a post about his or her child passing away as a result of Dravet, whether it from a seizure or SUDEP which is sudden unexpected death in epilepsy patients. It is so scary knowing what obstacles face Jack, but also very comforting knowing what all he has survived. Jack goes through cycles that you all have read about through the years, those cycles are either behavioral, mental, sleeping too little or too much, or not eating or binge eating. When he gets into a bad cycle of sleeping too much & not eating which is his current status, it is very worrisome. Having Dravet, Jack’s level of pain tolerance is very high so we don’t know if something is bothering him until it gets really bad. When he’s in this particular cycle, Jack is also very sweet & kind. This cycle is definitely a double-edged sword-on one hand, we have a caring young man that is not getting into any trouble online, but he doesn’t eat & sleeps way too much. So during this phase, it is always difficult for Lee & myself because we don’t know what to expect health-wise with Jack & to top it off, he is also having frequent myoclonic seizures (the ones I call the little seizures). The myos have been our major crux for Jack’s whole life. They have been the most complex type of seizure (and he has several seizure types) to treat with Jack’s disorder.

I was recently told that Lee & myself play the victim game & take our frustrations out on others because of Jack. Now that simply is not true! If that were the case, I would of burnt down Cracker Barrel in Moore County a long time ago (a joke for those that follow mine & Mama’s videos). Not to brag, but I have had people tell me for years that they don’t know how we do it. Many often comment that they never see me not smiling. Truly that is not always the case. For me, if you act like a butthead, then that’s exactly what you’ll get back from me. I’ve learned that when people have nothing else to say bad about you, they often reach for what they think will hurt you the most & in our case it’s about Jack. I will tell you how we do it, it is by the grace of God. There have been times I have wanted to give up, but that will was not fully there thank goodness. Imagine days, weeks, months, & years of holding your child from the age of 6 months through his current age of 19 as his body seized uncontrollably & there is nothing you nor doctors can do to stop the seizures. Seizures that typically only occur starting in the evening around 7pm & lasting all through the night & into the early morning hours. Time when your own body is to be resting & recuperating from the day. I haven’t had the pleasure of a full day or nights rest in 19 years, nor has Lee. So when people impart drama on me or my family, I just want to absolutely cut the fool. It’s not important to me. What is important, is keeping my family safe, happy, & healthy. That is all that should matter to anyone, I just don’t know why other people can’t see this. I guess if you don’t have life-changing responsibilities, you don’t get what is really important in life. Every time I open Jack’s door in the morning if he’s still asleep, which he’s been sleeping to nearly 1pm everyday, I wonder what I will find. And maybe I do carry some of my frustrations around, who the hell wouldn’t with the things we have to face on a daily with Jack, but I’m surely not rude on purpose unless you are to me. Maybe it’s just my RBF lol, but I try to conduct my time on earth being as happy as I can with the circumstances given to us. Our circumstances can be depressing, now tie that in with managing a business, the struggle gets really real!

This is a picture of Jack taken this week (October 2020). In these pictures, I see sadness. I see a young man that doesn’t feel well. I see a body full of eagerness to be a normal teenager as well. Jack loves going hunting & in the picture of him with the orange coat on, he is not himself, nor is he in the bed. Jack looks unwell in both of these pictures.

As we watch Jack go through this particularly difficult stage, it is a constant worry, but all of his stages are. Death has each of our numbers, it’s inevitable. But to worry about the death of your child with a severe disorder that could call him home sooner than most, puts what’s important into perspective. I do find myself comparing our situation to many others, simply because other people’s drama & problems seem foolish when to me& Lee when we have to deal with issues like Jack does & we do as his caregivers & so many others in this world go through challenging issues & illnesses. We will keep on keeping on as best we can until our time comes, but we will do whatever it takes to keep extra negativity out of our lives & the lives of our children because we already have enough to deal with. Until then, I will admiring my favorite house in Pinehurst. I will continue to think that it is warm, inviting, & full of love & laughter inside & I look forward to building one of those big houses one day, but don’t be surprised if ours isn’t painted aqua!

Jack & Diane

Is life one big game? Some say that it is, it certainly is a common statement I hear from others. Our life choices whether we care or not what others think, affect the people we love the most. Life for The Berrys was not so terrible over the summer like it has been in past summers due to Jack’s choices. Sure, there are everyday troubles or inconveniences here & there, but those that follow our journey with Jack, know that things have been relatively calm behavior-wise. As the old saying goes, there is a calm before the storm. Dealing with a lack of sleep is manageable. Coping with running around to restaurant after restaurant everyday to get food for Jack is deal-able. However, dealing with people that try to pull the wool over Jack’s eyes infuriates me, scares me, & potentially threatens our financial security as a family. Scammers trying to prey on Jack’s disabilities is nothing new to us. Over the last week, we have noticed Jack becoming more withdrawn, wearing headphones more often, closing his door which he hasn’t done any of this in a long while. Life this summer for Jack has really been all about games on his phone & that was so refreshing to us, such a much needed breather. We really enjoyed our summer of “freedom”, but it all came to a head too soon.

The only time I can safely look at Jack’s phone is when he goes to sleep. Sleep has been a fleeting situation here lately for Jack so I haven’t been able to do much investigating until the last few days. Jack is back to searching for a wife or a bride as he calls her. He has no idea that most of the time, his searches lead to a male (more than likely) in another country. After he went to bed a few nights ago, I started my other job as a private investigator. Upon my digging, I found conversations between Jack & “Diane”, ironic given that one of Jack’s favorite songs & mine as well is Jack & Diane. Diane asked Jack to download CashApp which is an app on a phone to send people money through. When Jack responded that he didn’t have any money to put on it, “she” said it didn’t matter, only wanted the pin for the CashApp. I’m not criminally-minded enough to know what this person could do with a pin for a cash app without any money tied to it, maybe some of you could help me with insight on this. She also wanted pictures of our house, told Jack she was coming to see him but needed gas money to get here, wanted gift cards for gas. She sent risqué pictures of herself with many promises, one to become his bride. He also called the bank & this is a hallelujah praise moment to small towns & wonderful friends, Jack wanted to start a checking account. Our friends there called me right away with an alert. They referred Jack to talk to me or Lee. When this stuff starts happening, I worry myself sick wondering what I can do to break the spell these idiots have on Jack. I asked my sister’s fiancé to call Jack with his deep voice & impersonate the police. He did & I think it frightened Jack a little, but sadly, Lee had to go purchase an eBay card for another person that was claiming to come marry Jack the next day. I’ve had to hide all of our checking account information, any bills with personal info, basically my whole life is under my bed! Have you ever seen those commercials for LifeLock? Well, we need that. I’m terrified someone is going to hack our entire home. Not only did “Diane” message Jack, she also messaged me & a few other people in Jack’s contact list asking for money. How she got their numbers, I don’t know. She even wanted to know our phone carrier, which has made me super nervous. I know Jack did not give her these people numbers so how did she get them? If anyone has any advice on this, send your comments my way.

The last text was from me after Jack went to sleep that night. “Diane” is in gray, Jack in green. It’s so sickening that everywhere he turns, there is someone nearby scamming him. He has been conned out of thousands of dollars of our hard-earned money, & let me tell ya, our money is literally earned through blood, sweat, & tears-lots of sweat! After three years of going through this with different “women”, not one has yet to come see Jack, but yet he still wants to send them money. Taking his phone away is not an option. Talking to Jack about these people is not option because he doesn’t care nor listen, only he knows what is best. Our hands are tied. We live in a totally scary situation in which we have no out. Please pray for Jack to get away from these people & that these low-life scammers will vanish from his life. To Jack, life is one big game. It’s always been about who wins for him & no one is winning but the scammers in this case. And feel free to harass this person on the number featured in the picture!

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!!!