Category: Seizures

Are you a chosen one? You already know I am. Let me explain. My life of oddities along with the cruel & unusual circumstances I face are no secret to any of you reading this. I tend to always be the one that gets tied up with the weirdos. I could be in a place where 10,000 people were in attendance & that one nut job would pick me out to either harass, ask a strange question, or actually do something to me. I use the number 10,000 because that’s the number of people that seemed like was in attendance at my local Walmart a few days ago. Ava & I were meeting my parents there to pick out some material for a project for one of our Berry Patch remodels. Mama, who is a master seamstress is making a huge curtain for what was once our office that has now been torn down & we need a curtain the size of a wall to cover up the junk left behind from tearing down the office. This is a perfect time for Mama to work on the curtain during quarantine! While we were waiting on Mama & Daddy, I ran into a former coworker of mine from my teenage years. While chatting & catching up, a shopper of “the Walmarts” walked up to us, specifically me. He was holding a bottle of L’Oreal’s finest Garnier Frutis shampoo with a picture of an avocado on the bottle. This man was dressed in what I refer to as pure country attire, had long hair, a very country accent, & there is nothing wrong with any of that! He apologized for interrupting in a kindly manner & asked “is this shampoo for babies?” Or so I thought. I just shook my head yes & thought, “sure, babies can use that”. Ava informed me after the the man walked off actually asked me, “is this shampoo for white people”? Was I being punked? Why didn’t he ask the friend I was talking to or Ava, didn’t I pass this gene down to her? Out of all the people inside the Walmarts, why did this man choose me to ask this to? The store was completely packed with Corona shoppers, surely he could of asked someone else this question. I wasn’t even on the shampoo aisle, I was on the shaving cream aisle. There were other people there, but no, as I say I am the chosen one every. single. time.

Onto more Corona news as if you haven’t had enough! Our business has been doing well despite the bans. We were & are so very concerned about a lack of business which could mean we can’t pay our bills & our employees would suffer as well. So far, people have been buying beans, onions, & taters like they are not going to be coming out for months. This could be a possibility. What we are more worried about is the continuing spread of the virus & possible shut down. We are coming up on prime strawberry picking season soon & wonder if we will have a place to sell them out of or even any customers to sell them to. We are all scared of the uncertainty of this virus. Jack keeps talking about the government, specifically l wanting to know why the government wants to shut down everything & put curfews on us. He obviously doesn’t understand what we are dealing with at all. I’ve gone crazy with Lysol & hand washing like the rest of you, just not toilet paper or paper towel hoarding. I vow not to be like those people on My Strange Addictions & start eating tp as a craving if this gets worse since the only meats for sale at the grocery stores are cow tongue & chicken feet! Some of these tp hoarding nuts might have a lot of paper to eat when this has passed-if it does!

This all seems so weird, like a Sci-Fi movie. I’ve never been too worried about germs-until now. Dravet kids catch everything, Jack has been hospitalized for pneumonia before & when he gets a cold, it wrecks his breathing capability. So I am super worried about this virus. What unchartered territory we are all facing, but the only cool thing about it is, we are all facing & learning from it together. No one has any more answers than the other. There will always be the people that defy what we are being told in order to protect ourselves, those types of people are everywhere in any situation & that is unfortunate-especially in this case. Not only are we worried about the health of the elderly, pregnant women, & those with compromised immune systems, I think most of us are worried about our finances. This whole fiasco could be a wake up call from our Creator. We all need to be humbled & reevaluate our lives. It’s so nice to see kids, teens, & adults back outside again. I’ve seen more people walking in our neighborhood this week than I have in the 10 years we’ve lived at our house. I get so tired of hearing all the stuff on Facebook & tv about the virus, the negativity about our country, the news, it’s all too much, particularly during a national crisis. We need to be encouraging to one another, help each other out, & be understanding as we go through this learning curve. Our lives have changed & will continue to change. Coleman is going to graduate this May, but we won’t be able to see him walk. What an accomplishment for him & us. He will just have celebrated his 20th birthday & he will be a NC State graduate. We are all in awe of him. He is so bummed about missing out on this. Think about the proms, high school graduations, weddings, funerals, American Idol (not on the same scale but that is someone’s dream that will be missing out due to Corona), the athletes that have trained their whole lives for what was the summer Olympics, church, homeschool (I do NOT want to do that), kids missing their friends, elderly being secluded & alone, & the plain old fellowship we are all going to be missing out on. This is going to be especially hard on Ava because school was her out from dealing with Jack. Readjustments will be made, we will carry on, but it doesn’t make the load any lighter.

I’ve been sick with a sinus infection for a while now & won’t go to the doctor because of all of the potential Corona’s floating around. I can’t call my doctor because I don’t have one, I never go (mainly due to me not wanting to know what I weigh). It’s not until you get into situations like this that you wish you could foresee the future. Ava has been wandering around aimlessly. She goes to a small private school that is still uses books (which is awesome btw). They are working on a plan to do things electronically, it’s going to take a minute to figure it out though. Jack has actually been getting more involved in things that don’t apply to electronics, I wondered if he has seen people doing things like this online. I came in from outside & found him doing a puzzle which is so unusual, but so welcomed. Sadly, I finished my taxes earlier this year, I cleaned out about everything I own, vacuumed drawers, washed things that need to be washed a few times each season earlier this year, I did everything I could do before Corona because of my downtime from The Berry Patch. Now my days consist of find funny Corona memes to send to people, sitting in the sun, birdwatching, drinking the water I didn’t have time to drink, & eating. Rest assured, I have gotten plenty of exercise fetching for Jack & walking back & forth to his room for me to look at something. I don’t like being quarantined. I love being busy & having things to do. Lee is having to hold down the fort at the farm as usual. He is taking all the precautions he can in order to come home as healthy as possible, but we just don’t know-I feel we will all come in contact with the virus sooner or later. Coleman is quarantined at his apartment in Raleigh, it’s times like these you want your whole group home even more. Thankfully, Jack has been calm this week, not acting foolish in any way.

I am no stranger to natural disasters, most southerners aren’t. We can’t drive in an inch of snow, school is canceled at the first flake of snow, not too mention hurricane season. When I was a big haired teen donned fully in Rave hair sprayed to max, we went weeks without power or water after hurricanes (several times) out in the boonies of Ellerbe, NC, been through snowstorms where we couldn’t get out for a while, then as a business owner, we survived (just barely) during the aftermath of hurricane Matthew while the beaches were closed due to flooding. Our business is about 90% beach travelers, that was an extremely difficult fall financially for us. We know how to prep-the hubs is a farmer after all & I’m a cook, just not sure if we know how to prep for this long & now with a mentally challenged child who doesn’t understand the complexity & seriousness of Corona. I feel like I am prepping for a perpetual snow/hurricane day each & everyday. I find myself making sure all clothes are washed up everyday, make sure my toothbrush is charged, all dishes washed, but there ain’t no snow or hurricane-it’s a scary virus!

Obviously thus far, Jack & I have survived our Chinese restaurant buffet adventure, but that’s only been 7 days ago. The countdown is on, will we truly know even after 14 days since I have been to the grocery store & The Berry Patch? I wipe & spray down everything like I just wiped a raw chicken thigh all over the house! We survived the one bedbug by not getting an infestation, will we survive Corona as easily? The Berry Patch plans on being open through this crisis, taking all necessary precautions. Remember not only us, but all small businesses as we try to wade through these murky waters. Learn to cook, watch some of my cooking videos on how to cook dry beans that everyone in the world is buying up or some of my other ones. We’ve sold more dry beans in two weeks than we have all summer, fall, & winter put together! If you’re like me, you have several return bags riding around in the backseat of your car to take back to favorite places like Belk & TJ Maxx. I am hopeful for quick reopening of my most liked escapes when this all passes.

Here’s a funny story to close & the reason why I picked this title. I don’t like to always post doom & gloom in my blogs, laughter is a huge part of my life, hopefully, my blogs are well balanced with laughter & sadness. I am BIG into natural health. I don’t take prescriptions unless absolutely necessary, I’ll try to find a home or natural remedy for something in a heartbeat. Many friends already have experienced my holistic remedies. Don’t ever post that you are sick, I will try my dangest to cure you with celery juice or glycerin! I had been reading up on the benefits of pumpkin seed oil to help with urine incontinence. You Mama’s know what I mean. You cough, sneeze, or run, you pee on yourself & I happen to do a lot of the latter two. I’ve always been a well endowed gal, I’m no Dolly Parton, but I’m not far behind! After only a few days of my pumpkin seed regimen, I started experiencing terrible, awful pain in my chest, like in the muscle. It began around my collarbone, even into my arm-I was convinced I was having a heart attack (which wouldn’t be unusual either). I went through the normal-did I pick up anything heavy, sleep on that side wrong, what’s new in my supplement world? Bingo!!! I forgot during my research that pumpkin seed oil can increase the breast tissue. My breasts had already increased one whole cup in just a few days! Once I stopped, I deflated back to my norm. Being a saggy old Dolly Parton runner up is not so bad after all, especially when it was terribly painful. I was glad to be back at home in my C cup. All you girls that want to have implants, try pumpkin seed oil capsules. They will plump you up…quick! It’s too risky to go have plastic surgery now anyway! Increase your bust the natural way! Stay safe my friends!

Corona virus scare, talk, media overload, hoarding is in full effect! Whether you believe there should be shut downs & closings is neither here nor there. This is my last will & testament-just kidding, or at least I hope so. Jack has been the studying this Corona since it started in China. He began by counting the daily infected & the daily deaths country by country. Every morning that is the first thing he checks, even has an app on his phone to keep track of it all. All of this is fine by us, means fewer moments spent online chatting with strangers. Ava bless her heart developed a cold about two weeks ago. No fevers, just a run of the mill cold that we are all afflicted with at least once a year. When Coleman, Ava, or Lee catch a cold, it’s awful. They cough for weeks. It is loud, continuous, & I hate it. I’m the type of person that is easily annoyed by sounds, even people breathing! Now I have the cold Ava had. It began last week with a sore throat, lots of drainage, some coughing, sneezing, & runny eyes-NO fever. I feel it necessary to announce that I do not have Corona if I sniffle or sneeze. Ava is on the tail end of her cold. Please Lord, don’t let Lee get the man flu!

Back to my last will & testament & death on a plate. Jack decided he wanted me to take him to our local Chinese buffet on Sunday evening. He tried to get my Daddy to take him but he told Jack he didn’t want to get “the” Corona. I, was the next alternative. There was a surprising number of people out even amid the warnings of the virus. I love Chinese food if done right, I don’t love this particular Chinese buffet. I’m not a fan of much fried food & am very picky about what meats touch my lips. I filled up on noodles, rice, & green beans & I was left ravished after about two hours because I didn’t intake any protein. After all the warnings & deaths Jack has read about, he stated “I ain’t afraid of no Corona” when I tried to get him not to go. I’m not much of a scaredy cat when it comes to germs, but all I could think about were the tongs & serving spoons on this buffet line (reason for the blog title). The media has got us all not scared, but “skeered” to death! I’m not discussing whether they are right or wrong with their delivery or concerns, I just know they have infiltrated my brain.

Jack was very pleasant at the restaurant, he fixed two plates of food & ate every last morsel drowned in soy sauce no less. He was not quick about it as always while eating, he had diarrhea of the mouth. He didn’t act weird like he did last time we went out to eat at the fish camp, it was a nice outing for the two of us.

What was not unusual for me, was the man sitting in the booth behind us. He was dining with a friend I suppose. The first thing that caught my eye was his hat, read closely.

I have to say, I like the concept! I was waiting on Jack to ask him something or read his hat. It would of been on either way. I am thankful he didn’t notice the man’s hat. I think we (my family) need shirts, hats, pants, pajamas, & socks to wear around Jack. Maybe he will stop calling us with foolishness all day long. The very next night after we ate out at the Chinese restaurant, he calls in an order to Mama Noi’s in Ellerbe. He ordered $30 worth of food & of course he didn’t eat it all. I’m going to have to go up there & tell them if Jack calls them ever again for a call-in to call me before they cook it. He’s got to have the high cholesterol in Ellerbe! His diet consists of takeout only. At one time it was strictly frozen egg rolls & egg & bacon sandwiches, now he lives a life like he’s Richie Rich calling the three restaurants we have in town all the time placing food orders & awaiting someone to bring it to his room on a silver platter. I made roasted red pepper soup the other night for the rest of us. Jack surprisingly wanted a bowl. He finished & said, “Mawmaw (his nickname for me) can cook”! I nearly died! He hasn’t eaten anything I’ve cooked for the family in so long. It was so good to him that he ate another bowl before going to the Chinese place.

Last summer, The Berry Patch made a donation to one of the local factories that produces paper towels & toilet paper. As a thank you, they gifted Lee & I with two huge boxes of toilet paper & two huge boxes of paper towels. They aren’t your Bounty or Charmin brands, but we are so thank for those boxes now even more so than when we received them. It was a blessing in disguise. I’m just thankful I don’t have to go around asking people if they can “spare a square”! #seinfeld #elaine This precious commodity that everyone in the free world is fighting over will splinter your tail (literally), but I ain’t getting involved in that fight…yet! We haven’t had to purchase TP or PT since August of last year. We have so much I have to store it in our junk room.

Have Jack & I sealed our fate for Corona? Will this be my last blog? Am I still hungry? This is beginning to sound like the end of the old Batman & Robin episodes from the 60’s. Any who…stayed tuned for the answers to all of these burning questions. The answer to the last one is yes, continuously!

I am taking the virus scare seriously, mainly for Jack’s sake. He has such a poor immune system, he can’t fight infections like the rest of us. Fevers can be life-threatening for Jack, but I couldn’t convince him of that prior to going out to eat. He doesn’t know or care about the seriousness the impact could have on him. We can only hope he doesn’t want to go out to eat any more. The virus is scary to us not only as parents of a medically fragile child, but as small business owners. Get out & support the small businesses when & if you can. In the meanwhile, spare a square! I will if absolutely necessary!

Memories…they are either good or bad, usually there is no in between. They stick out because they were memorable in a fun, comforting, or difficult time. Facebook is good at reminding you of memories. If we are lucky, we have a ton of good memories. I can’t say that I have a lot of good memories with Jack, most of the times I remember quite vividly are times of emergency & I’m sure that holds true for Lee, Coleman, & Ava as well. Siblings typically get into trouble together, are close, & have good times to reminisce on. This is not true for our kids & that is sad for me as a Mama. They spend their time when around Jack trying to get away from him, rightfully so. Their memories are much like mine when it comes to Jack; emergencies, interruptions of celebrations due to seizures, violence, & not being able to go to functions because of health/behavioral needs. Coleman & Jack are only 15 months apart, pretty much Coleman’s toddler-teen years are flooded with memories of hospitalizations & acute medical care (he’s at NC State now, bet there are tons of memories Mama don’t know about). Coleman was very protective & caring for Jack when they were small. He worried a lot about Jack, but as Jack got older, Coleman’s views changed about Jack when he got older. Ava & Jack are 4 years apart, Coleman is 5 years older than Ava. Coleman spent a lot of time with my parents due to hospitalizations, days of nothing but seizing, then Ava being a newborn & Jack having so many medical needs at home. Coleman was extremely active, I had to nearly hog tie him to get him to sleep or nap. My Mama called me the warden. No one could get Coleman to have his bottle but me, no one could get him to sleep but me. Needless to say, my parents were wore slam out when Coleman stayed, they loved it though!

There were great times that I treasure more than anything, like the times we were able to play outside all day & into dusk without an emergency, the afternoon naps with both boys cuddled on each side of me, reading every night to all three kids was one of my favorite memories. I received a memory recall a few days ago from Facebook. Pictured below is the memory that tugged at my heart, was the inspiration for this blog, & made me long for these times once again. Jack & Ava had a close relationship when Ava was smaller. She was home more often because Coleman was in school (Jack went to a 1/2 day program), she became my little helper. She fetched different things Jack needed or for myself to help with his medical situations, she became Jack’s little nurse, empathized with him, they watched the same cartoons, played together. They truly enjoyed the company of one another. Coleman never, ever watched tv so there was no connection found through tv. This is the sweetest picture & really shows the bond these two once had. Jack & Ava were still dressed in their school uniforms & were playing rock, paper, scissors. How I wish for these days again! Although the times were not easy, the stress level was the same as present day, but Jack was smaller & we could contain him somewhat better than we can now if he does get violent. He was also much sweeter than he is now, but aren’t all kids that way? All of our children were once sweet, angelic angels, now, mine are mean, hateful teens! The smiles in this picture are so bright, the one that touches me so is Ava’s. She was actually able to spend meaningful time with her brother. Ava probably doesn’t remember this, I didn’t either frankly, the good memories replaced with bad ones. While a handful are so dismissive of Facebook, I am thankful for it. It allowed me to store memories of good times without having to tear everything out of my newly organized attic to find these sweet treasures. I would of had to climb over 10 years of tax receipts, Christmas trees, & Easter wreaths just to see these two interacting. Through Facebook, I saw it just by checking Facebook. I thank you, Mark Zuckerberg!

It was such a nice spring day this week without any rain on this particular day (can you believe it?). I went outside to enjoy the morning while I waited on Jack’s caretaker, Jack joined me outside on the front porch. We live in town on a busy road, a lot of people walk for exercise or because they don’t have a car, there is always someone walking by our house. Jack bebop’s on the porch with me dressed in a tshirt, underwear, & a toboggan only, it made no never mind to him if anyone saw him in his undies or not. Most teens would of been mortified! He has even greeted the UPS man in this same attire!

Speaking of memories, I think all of you that keep up with my blogs understand somewhat how very stressful our lives have been & are. This is a funny story about being sleep deprived when the boys were babies. I was already tired from having an extremely active 15 month old (Coleman) when Jack arrived. Coleman started walking towards the end of being 9 months old & was never interested in any toy in this world or anything babies & toddlers typically love. He took apart everything, even asked for drop cords for Christmas when he was 3! As soon as Jack emerged, his health issues began. He was whisked away to the NICU soon after birth due to a heart condition called Wolff-Parkinson-White Syndrome (WPW which has since been resolved with a cardiac ablation at the age of 4). This diagnosis was before the seizures started. Of course we were terrified. WPW can cause the heart to go into SVT which means a super duper fast heart rate in layman’s terms. His was discovered a few hours after birth with a heart rate of 250. Jack was placed on a beta blocker at birth & we were sent home about five days later. I was tired, I was spent! Being pregnant, no problem-I was made to have babies, I never once was sick with any of them. Having babies, no problem. Sleep depravity, Houston, we have a problem! Coleman was not a great sleeper at any age, still isn’t. Jack nursed plus he had what we considered (little did we know) a huge heart problem so he slept with us, plus, he was newborn. The doctor sent us home with Jack’s heart medication that had to be given every 8 hours. This may sound reasonable to you, it was not to us as newer parents of a new baby with a heart condition we had never dealt with & it could be life threatening. The 8 hour schedule the nurses put Jack on for his medication was fitting for them, there is always a nurse on staff, awake, & ready to hand out medication. At home, we thought we had to give the meds every 8 hours exactly to the nurses schedule, I think it was roughly 2am, 10am, 6pm. We were waking Jack up at 2am if he wasn’t already awake for feeding. We were so scared Jack’s heart rate was going to go through the roof & us not detect it that I watched him all the time when I wasn’t nodding off. Like any toddler, Coleman woke up bright eyed & bushy tailed at 6:00am, by this time, Lee was long gone. So it was me with two babies basically & one severely sleep deprived Mama. One night, Jack woke up to nurse earlier than 2am which was the time his medication was due. I told Lee after Jack was done nursing to go find Jack so we could give him his medicine. Lee walked all over the house trying to find this newborn baby who obviously couldn’t walk or do anything for himself. Lee comes back & says he can’t find him. We panic! After a few moments, it dawned on me that I was holding Jack the entire time! That is how very tired we both were! We were so tired that we didn’t even know I was holding the very baby we were looking for! Makes me laugh every time I think about it. Shortly thereafter, we met with Jack’s electrophysiologist cardiologist at Duke & he advised us on how to get away from the middle of the night medicine dose. We learned to adapt to a a very scary heart diagnosis.

Most people that have WPW don’t have symptoms & don’t discover it until an EKG for an upcoming surgery. I remember Jack having a really fast heartbeat in utero, but by the time the ultrasound tech got to me, it had gone back to regular rhythm-it was forgotten about afterwards. Jack also had it immediately after birth & then again during one of the nightly routine newborn checks, that’s when the nurses knew something wasn’t right when Jack’s heart rate was too fast to count. Later on in Jack’s young life at the age of 6 was when we found out about him having Dravet, which was connected to the WPW Syndrome he had. Both are mutations of the sodium channel gene (which is why Jack has Dravet & had WPW), a lot of Dravet kids have heart issues. A lot of the regular population have heart issues & don’t know about it until it’s too late. Just with hearing screening in newborns, I would love to see cardiac screening as well. It is not an invasive procedure to perform an EKG, the biggest feat would be getting the baby to lie still. I think this should be mandatory with all infants, it could prevent unnecessary deaths with one simple, easy, fast test.

Memories are a good thing, usually. Certain smells can take you back to being four years old sitting at your Grandma’s kitchen table waiting on cookies, a particular sound could dredge up the memory of an impromptu beach trip, or the thought of visiting someone at the hospital could bring back a flood of bad memories over the loss of a loved one. Even if the memories aren’t always pleasant, in some cases, we are fortunate to have them rather than not. They are necessary life experiences that give us the tools to cope, deal, & get through life’s adversities.

Some of my other favorite memories of years past of the kids: This is of Coleman with the biggest smile I’ve ever seen from him at Disney on Thunder Mountain roller coaster.

Another favorite of mine is of Jack on the same ride at Disney, his smile was infectious.

And this one of Ava, she is so hot, mad, & tired during one of her goat shows. She was so done with it all she decided to relax with a grape Nehi & give me an eye roll!

And this one of Mama, Daddy, Ava, & my sister Jodie at The Cheesecake Factory in Raleigh. Coleman had a fit to go there, he’s always loved that place. We hate going because the wait is typically so long. We were all mad, we are hungry people & don’t like waiting for food!

Go out & make some memories & take pictures, you won’t be sorry!

Why do I do this to myself? About three weeks ago, I posted a blog about how well things had been going with Jack. Right after I said that sentence, I also said that I would probably regret saying that, boy do I ever! It all started about two weeks ago. Lee was craving fish, so we made a trip across the Pee Dee River bridge for an outing with Lee, myself, & Jack to eat at Welika Lake fish camp. It’s a traditional fish camp a lot of 40 & over aged folks dined at as youngin’s on the weekends while we begged our parents for change so we could see a pack of Vantage cigs fall down from the cigarette vending machine & bask in the glory of the coolness of a York peppermint patty as an after supper treat. Although I detest smoking, the real treat for me was moving the knob to the correct pack of smokes. I still can’t believe little kids were able to do that. Memories! Any way, the spiraling of craziness started on this night. Our waitress happened to be one of our employees in the ice cream shop at The Berry Patch, she knew us & knows of Jack, Jack doesn’t know her but because she knew us, he immediately felt a comfort level of complete & utter freedom with her. Jack couldn’t make up his mind about what he wanted to eat, anything Lee suggested was wrong, I suggested the seafood platter, that was wrong. Jack ordered all kinds of stuff, then when Lee placed his order for the seafood platter, Jack then changed his mind to what I suggested he get-the seafood platter. He didn’t get a salad but I did. As I was preparing my salad at the bar, he makes a beeline to our waitress requesting a bowl so he could have a salad. I’ve mentioned before how we no longer eat meals at the table because Jack does not allow us to eat in peace-he talks constantly with a fork of food in his hand without ever placing it in his mouth. It’s amazing that the act of sitting at a table causes him to have diarrhea of the mouth, talking about crap (pun intended) that none of us have thought about in 18 years! It’s very frustrating & infuriating at the same time since we can’t enjoy the company of everyone at the table. A little while later, Lee sees someone he knows sitting across the restaurant & goes to speak to him. Jack tromps across the restaurant to where Lee is like he’s King Kong stomping, nearly running to see what Lee is talking about-just another excuse to not eat. The child is fascinated with food, but has no desire to eat it most of the time. Once back to the table, Jack kept talking to our waitress & even reached out to touch her on her back while she was with another table. When we scolded Jack for interrupting her while she was with another table, he blamed it on us saying we never told him that. He just acted plain weird from that moment on, Lee & I were concerned he was going to have a seizure or an outburst. After the food arrived, Jack picked up a piece of fish & held that same piece of fish in his hands only taking one bite out of it from the time he got it to the time we made it back to Ellerbe which was roughly an hour or so. We could not wait to get home, it was a mentally exhausting trip that I will never willingly take again!

Since the fish camp night, Jack has been waking up either really early and/or in the middle of night & then tries to get into bed with us. Sleeping with him is scary as well, he jerks all night long & tries to hit whether it’s intentional or not, who knows. I’ve had to start fibbing to him by saying I have been sick on my stomach, Jack is deathly afraid of getting sick. I’m considering purchasing some fart spray (excuse the language) from Amazon so I can have the smell to back up my claim! What really absolutely takes the cake & helps remind me to never say Jack has been doing well were the events that transpired from last Wednesday to current date. Jack had his yearly neurology checkup at Chapel Hill last Wednesday. I did not tell him he had an appointment until that day due to his hyperactivity. I let him wake up & have his meds before breaking the news, although I actually didn’t tell him. His caseworker who is a wonderful family friend & nurse called Jack to tell him he had to go. After much relenting, he agreed. His appointment wasn’t until 4:30 that afternoon, his caregiver went with us which was a huge blessing to me. We made a pit stop before the hospital at the Ronald McDonald House to drop off drink tabs that local friends save for us to donate when we go. Jack wanted to do it all by himself, he acted just like a four year old would, “all by myself” I’ve heard that from plenty of 4 year olds & he exhibited that behavior perfectly. The boxes were heavy & he kept dropping them, but no matter, I wasn’t going to flinch to help him. There was nothing I could do to stop him. He comes back after the first load & says they have T-shirts for sale inside & he wants one. T-shirts & hats are also an obsession of his, basically anything that costs money is! I told him no that I didn’t have any money. After multiple attempts of begging & even threatening, he finally gave up-or so I thought, more on that later.

A friend of mine & Lee’s has been in the hospital, in particular the ICU. I wanted to take her a treat from The Berry Patch because she loves our ice cream. Lee carefully packed the ice cream, we even included our homemade waffle cones. Jack has never met this lady before or heard us talk about her, knows zilch about her. We arrived at UNC at 4pm so I’d have enough time to run the ice cream upstairs & then back down for Jack’s appointment at 4:30pm. I pleaded with him to stay downstairs with his caregiver because the walk is long, long, long-he sits in his bed 99% of his days, I knew that would tough on him. Insistent he is, so there we went marching up to one of the many different ICU’s there. My friends Daddy met us at the locked doors that buzz you in if approved, there is also a sign on the door that says only two visitors at a time allowed. I went back with her Daddy, Jack & his caregiver stayed on the other side of the doors. Jack did not like this! He was determined to go in. I did not stay in the room more than five minutes visiting because I knew Jack would try to bulldoze in like the Roadrunner from Looney Tunes. When I came out, Jack was adamant that he was going to visit my friend. I told him she had to go to therapy. Of course that didn’t satisfy him so he suggested we go back after his appointment. I told him we’d see how she felt.

We finally made it to check in downstairs, the lobby was completely empty since it was close to closing time for clinic appointments. Jack had the huge waiting room alone. He honed on something new inside the waiting room, unfortunately. The picture of what fascinated him is below, it will help give you a size reference of the piece he became mesmerized with. That whole thing is a display of action figurines inside a locked case with a push button light to amaze the smallest or biggest of kids. On top of the case is a certificate telling about the man that made it & that he donated it to the Children’s Hospital. Well, guess what Jack did? He found the man’s phone number, called him, left a voicemail to see if he’d make him one. Now do y’all understand the addiction problem I say Jack has? Where on earth would we put such a monstrosity? He also asked the nurse if the man would make him one. I just so happened to be holding Jack’s phone while he was giving blood when the man called. I deleted the number & the message before Jack ever realized he returned his call. I sure hope he has forgotten about this case! Of course the doctor was running behind, we didn’t get out of his office until 7pm. I didn’t even get to discuss anything I needed to about Jack because Jack kept interrupting, now I’m going to have to email him & it’s hard to convey the troubles exactly via email. Jack of course asked about going back upstairs to visit with my friend & I told him we couldn’t she was still in therapy. After the appointment, it was supper time, Jack hadn’t eaten all day & he wanted to dine at a little pizza shop in the area. He wanted to go in & eat but eating with Jack is so stressful that I tried to encourage him to let’s get it to go & eat on the way home. To which his reply was, “don’t make me get upset”. Being pressured & threatened by Jack is nothing new as you already know, so of course we did what he wanted. I wasn’t about to start throwing punches with him at the pizza cafe parking lot. We didn’t get home until after 9pm. What a day it was!

Since our visit at UNC, Jack became obsessed with our friend that is in the hospital. I suggested he make her a card the night we got home from his appointment since he was upset he didn’t get a chance to go visit with her. Jack couldn’t care one iota about visiting with her. What this was about was control. He didn’t get his way, so he had to figure out some sort of way to feel like he was in control of the situation. He started talking about making the card first thing the next day. It was a very simplistic card, nothing that would take him longer than 15 minutes to make, but no, he had to take 3 days making it! It literally ran him crazy & made us nuts. He was preoccupied with calling the hospital trying to find her room phone number, he was not sure of her last name-I called everyone we knew & told them they were not to tell Jack what her name is. No one has as of yet. He made me draw the heart, made Lee sign it, everything he could of done himself, he made us do except for color it. His statement was that card was going to make her feel 100% better. He’s a healer now! The control for Jack was played out in the demands he made upon us from making the card, signing it, delivering it to her Mama so she could give our friend, & thinking the card was going to heal her. That made him feel powerful. He also called The Ronald McDonald House multiple times about buying a blooming T-shirt!

I call these periods that Jack goes through storms. It is so very difficult to be around Jack when he is storming, hard enough when he’s not storming. How difficult it is to like him when he’s like this. We go from him trying to break the bathroom door down when I’m in there, to unreasonable demands, to instantaneous gratification, the need to have foolish purchases, medication refusals, a sharp tongue, bullying, attempts to untie my robe, rip my shirt, & more-it’s unreal. A video of Jack just the other day while I was trying to get ready for the day. I am used to this behavior, but it is ALWAYS scary!

It is truly a lonely world when Jack is storming. We are afraid to walk by his room in fear he’ll ask us to buy him something or wash ONE T-shirt in the washing machine. We creep around the house fearful to move so he doesn’t notice but his room is in the center of the house, it’s impossible to do anything without him hearing or seeing us. Ava stays upstairs or in the living room with us, out of sight, out of mind-impossible to live fully in our own home. It is hard to like Jack, of course we love him, but he is so wild & unruly that liking him at times is difficult. We all know he can’t help his behavior. I think of football players when I think of Jack’s behavior. How many stories have we all heard about a player with head injuries that lead to violent outbursts, change in moods, or even murders? That is called CTE, chronic traumatic encephalopathy which stems from repetitive brain trauma. I’ve said the number of seizures Jack has had in a lot of my blogs, please do not think I am being facetious about that number. When the seizures began, he literally had 100’s a day. The 100’s were little seizures that are called myoclonic seizures, his head would drop & right arm would lose control. Jack was six months old when this started. Think about this time period, he was learning to crawl, his head kept falling over & his right arm lost control although for just a split second, it occurred in clusters of 100’s of seizures in a few hours time frame. This went on all day & night long ending in full-on seizures with all over convulsing multiple times a day. What a crucial time of brain development & his was hindered by seizing 24/7. This was Jack’s life for a straight 6 months, no medications helped, some even made the seizures worse if you can imagine such a thing. It wasn’t until Jack turned one that we reached a turning point when he started the ketogenic diet as treatment for seizures. No, this is not your meat & cheese diet many people are now partaking in for weight loss. This is a dietitian/doctor guided diet to make ketones. Ketones for some people help stop seizures. All of Jack’s meals had to be weighed in grams, toothpaste, lotions, shampoos had to be investigated for sugars-yes, they put sugars in that stuff & that could decrease his ketones which we didn’t want. The diet was successful for 2.5 years but suddenly the seizures came back with a vengeance. Where I’m going with this story is, I think Jack’s case is similar to the football players I’m talking about. His brain has had so much trauma, probably having close to 100,000 or more (I have no way to estimate, just a guess & that’s probably on the low end). It’s hard to like someone that causes so much pain, fear, & sadness even if it’s unintentional.

So much more has happened with Jack, but I won’t bore you any more with the details. What a whirlwind of a life. Now Ava has started blogging about our journey with Jack. I’ve encouraged her to start writing about her experiences on a personal level. Although we may seem like happy people on the outside, it is really, really hard on the inside. Ava touched on the fact that she can’t have friends over, how she has to sleep with her door locked, how we have to lie about things, hide her phone & computer. It’s so hurtful to not only have a child like Jack that suffers with so many things, but hurtful to see the side effects it has on your other “typical” children. Ava has had people say to her before that she’s snobby, stuck up, goes to a private school. The private school part is true, that was our decision as her parents & the best decision for us, but part of why I encouraged her to write was to let people know why she is like she is. She is hurting inside because of Jack & there is nothing we can do about it. Our hands are tied. I want people to understand her & our situation & not jump to conclusions about who she is as a friend/person. It’s not easy to talk about, but it’s easier to write about. I hope she continues to write & finds comfort through her writing. I spoke with the new case worker over Jack’s case about residential placement just last week, she said it could take a few years to find a place for Jack because he has significant medical & behavioral needs & that these places only take a few people each year & there are very fees facilities for people like Jack. Ava is liable to be grown & flown before we find somewhere for him. So what do ya do? Not much we can other than pray. There will be more journeys with Jack to come I know. Stayed tuned for more from Ava & myself, hope we don’t bore y’all!

If you’re over the age of 40, you’re already familiar with the statement getting old is tough. What makes it so tough the youngsters may ask. You fall apart, your insides get poked, prodded, scoped, scraped, things get squeaky, things pop, things tear, you forget things, you get diseases, syndromes, autoimmune disorders, the list goes on & on (most of which I’ve had the displeasure of experiencing, especially the tearing of things). Aging is particularly hard on women. There is quite a bit of maintenance outside of the regular female upkeep after the age of 40. We start thinking about how to prevent & treat wrinkles, how to be skinnier, we have to color our hair more often to hide the gray (at least I do), shop for better bras & fat smoothing undergarments, eat less, exercise more, we suffer through hot flashes, lack of sleep, irritability (age 40 is when people start officially getting on a woman’s last nerve), & all this is performed while keeping up with our regular duties as wife, Mama, secretary, chef, housekeeper, taxi driver, etc. No wonder the men in our lives get on our nerves. Women should be honored at least monthly by the men in our lives with a special celebration.

Not only do we have to worry about all of this, but the lady community frets about particular exams that darken our doorstep once a year. I absolutely hate participating in the annual female exam. Being a very modest person, so modest that I despise my bra straps showing although that is the trend nowadays, sitting nude with a paper chest cover with the thinnest, smallest bedsheet known to man (what even is that sheet made for, my body IS the size of a bed after all) in a room colder than the ice inside my soul is not my idea of fun. Nobody enjoys this experience. I will say that the office I go to has upgraded to cloth chest wraps-cheers to them! I wouldn’t mind a warm, fuzzy robe that I can open up like a flasher & also so that my lady bits don’t form icicles, but I guess I can deal with frostbite for roughly 30-45 minutes. After doing the “yearly” deed with my doctor, it was time for part two of the ordeal, my mammogram. This is not my first, I am over 40 after all. When I had my first one four years ago, I was terrified. Having heard stories from various people about the pressing of your breasts in a machine, I was more worried about the test at that time than the results! One friend told me how she was pressed so hard by the machine, her muscle was damaged. I thought, my Lord, why do I have to do such torture, isn’t my life torturous enough?

My first mammogram experience went down like this. Prior to my first mammogram, I was unaware that you should not wear lotions or deodorants on the day of testing. I’m writing this so those of you who’ve never had one before will be well prepared. After getting the dreaded call back, I was ushered into my own personal changing room & instructed to strip down from the waist up, remove any lotions or deodorants with wipes they provided. I then slipped into a cloth (highly relevant) top that opened in the front for easy access & went into another waiting room to wait to be called into the mammogram room. It is so not comfortable sitting in a waiting room with other people without a bra, albeit they were all in the same situation as I. Pictured is the changing room, they even provide deodorant for afterwards. They really do care how we smell-notice the deodorant pictured below.

The time quickly came where I was called back into the mammography room, I was sweating bullets & so wished I could of worn my Degree for a layer of protection. I sweated like it was 100 degrees in the room, I perspire profusely when I’m nervous even if the room is cold, I could smell my own self-I was so embarrassed! This picture is from my recent mammo, nothing to be worried about at all!

The mammography machine is awfully large, resembling a robot. It has two large square plexiglass hands that accept the smallest & largest of breasts-remember, this is my interpretation, no correct clinical terms will be used here. The technician instructed me on what was about to go down. One breast at a time would be x-rayed, twice, but both would be squished flatter than a Saturday morning pancake at your Mama’s house. Who knew they could get so thin! She inserted or lifted in my case one boob at a time, I held the mammo machine with both hands, then came the compression, I also had to hold my breath during the x-rays. As soon as it started, it was over. It was not bad. There was nothing to be worried about in the least for the actual mammogram. I did not experience any pain at all, what a relief! I would then spend the next few days worrying about the results from my first mammogram. All was well for my first, second, third, I am now awaiting the results on my fourth exam.

To wrap things up, ladies, don’t believe the horror stories you’ve been told about mammograms, wait & make that call all on your own. Most of the time preconceived notions are no where near as agonizing as what we believed would be true. Be smart about the process; don’t wear lotions or deodorant, don’t go if your boobs are at their most sensitive time, & most importantly, don’t be afraid of the actual test-it’s a piece of cake, or pancake that is!

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

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

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

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

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

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

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

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

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

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

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