When Peace is the Missing Piece

How is it possible to be a faithful Christian when life is so very difficult is a question I ask myself often. I’ve asked myself a billion times in Jack’s 20 years on earth, how is it that so many people carry on wonderful lives of travel, happiness, joy, health, carefree living & the most important gift one can have, peace. I don’t understand why we aren’t able to obtain peace, I mean I feel like we are good people, I am mean (mainly because of a lack of sleep), but we don’t do harmful things to anyone & we try to help anyone that needs it. I’m not even slightly jealous of friends that hangout with other friends, go on nice trips, ride boats on the lake every beautiful weekend in the summer or even those that work only five days a week. All of that would be nice, it’s nothing I really care about at this point in my life, all I want is a healthy child & peace. Why Jack’s life has to be so full of suffering is beyond my thinking ability. It really does seem so unfair & unjust that Jack has to suffer everyday.

What does having an unwell child do to a person? I can’t speak for all, but I know there are commonalities, especially in the Dravet world. There is a huge adjustment in one of the most important daily routines of life-sleep. When Jack first started having seizures, he was only 6 months old. Coleman was 21 months old, Lee was a busy farmer & I was a 26 year old stay at home Mama. Though young, I was already sleep deprived from nursing Jack, then keeping up with a very energetic Coleman, then Jack began having seizures all day & night long which continued for many, many years. Then we had Ava & the sleep deprivation started all over. I wouldn’t take anything for those years, they are actually what helps me get through the lack of sleep now-they trained me! How I wish I liked coffee, can’t stand the taste of it at all, but I sure do need it. Can’t drink energy drinks either, so I am an au-naturale sleep-deprived fool!

Another thing that has changed in myself is a lack of empathy. People can get so bent out of shape about little things & I am continuously saying I wish I had only that to worry with. Admittedly, I have turned into a callous person. I don’t mean to be & I’m not sure when it exactly happened, just a buildup over time due to trauma. Is it a fight or flight response, I’m sure it is, I’m not so cold that I don’t care about people, I have a great big heart for those going through very difficult times be it medical or personal. It takes something major to get me to cry, not that I ever really cried to start with & I’m glad, the only makeup I wear is mascara & it would be a shame to ruin that as it is the only thing that makes my eyes appear open! I think most things are foolish that people carry on about, but when someone told me I had a dark shadow above my upper lip (aka a mustache)-that cut! The fun has been zapped right out of me. There’s not one desire I have to do anything extracurricular except when I was playing softball this fall & my heart wasn’t in it this time as it usually is. Any of the fun that is seen on my videos with Mama is pure force. If I’m out, it’s because I am forcing myself to not yet go home to my unhealthy son. Is this selfish? Yes it is, is it cold, yes it is. Is it needed, yes it is. I know if I go home directly from work, I will continue to work for Jack. Fetching this or that, him worrying me, being his one & only. I am straight up the only person Jack wants from the time I walk in the door until he goes to sleep at 1 or 2am. Jack’s disorder has also changed my whole love of doing things I once found joy in. Decorating our home for each season, now it’s summer pillows on the futon almost year-round & a Christmas tree only at best. Shopping, don’t care a thing about it, although I have to a lot of it for The Berry Patch, I find no pleasure in shopping for me. I use to sweep our porch several times a week, now it’s about twice a year. I used to love reading, wore out our local library, but I couldn’t tell you the last time I partook in reading for myself. The energy nor joy is there any longer. Some of the changes were rapid, others developed as Jack’s disorder worsened.

Self-care is yet another downfall of the special needs parent. My love for exercise was true! I was watching 1000lb Sisters the other night & the sisters brother Chris is trying to lose weight for gastric bypass so he is starting to exercise. The trainer he is working with asked him if he liked exercising, he said “No, they don’t nobody like exercising & if they do, they already skinny!” How right Chris was (I talk like him too)! As a youngster, I would wake up at the butt-crack of dawn on Saturday mornings to exercise with Richard Simmons, Jane Fonda & any other person I could find. When I took gymnastics, I stayed for the ladies workout after I had already whirled my way through the studio for two hours for my lessons. Then I got into walking & I could not miss my walks for nothing, until I did. Being healthy was always a top priority for me & now it is not because I don’t have the time nor desire. Life happened. It happened too fast, too crazy, & too plain brutal for us. Personal health nosedives when taking care of a loved one.

One of the most scary changes has been my memory. Sometimes I feel like I have early onset dementia & I am being totally serious. The things I forget are worrisome & the things I remember like so & so wanted a bushel of Dixie Lee peas or this person wanted a box of canning tomatoes, but it’s also comforting to know I may not have dementia if I can remember things like that. I do forget things like picking up Jack’s prescriptions of all things or calling the doctor. Inadequate sleep changes your way of thinking, reaction times, everything. Every relationship you had and/or have will falter including the ones in your home as a result of having a special needs child. Many will think you aren’t doing enough, some will think you’re too much of a helicopter parent, others just don’t care to be associated with you when they once were very active in your life. You get forgotten about, people no longer ask you to be a part of things & that’s understandable when we never could do things because of Jack’s condition. An old friend used to call me smiley a few years ago, can you believe that! There doesn’t seem to be much of that going on any more. I feel guilty doing anything for myself when Jack isn’t doing well, including laughing.

The type of stress we are under & Jack’s little body is in, is unbelievable. With him being in starvation mode currently, he is weak & depleted. Two weeks ago I started him on a medication that was supposed to help stimulate his appetite, but we ran into an issue that I am unable to say 100% what happened. He was lethargic upon waking that morning but not unusual when he is in a bad cycle. New med was given & he slept all day on & off. He had planned on going hunting with Lee that day but when Lee came to get him, he was too tired to go. Jack ended up calling me 30 minutes later demanding for Lee to come back home & get him, which he did. After getting to their destination, Jack slept the whole time. Lee had to carry Jack in the house because he wouldn’t wake up. Blaming this on the new medication, I swore I wouldn’t give this to him again-much like all the other stimulates, they all put him in a catatonic state. We are honestly between a rock & a hard place. I have never seen anything like this. I was by his side from 8pm-1pm into the next day, even slept with him. Jack developed a cough in his sleep shortly after I fed him some dumplings friend Nora Hudson made for him. He got strangled on them & I thought that was causing the cough. Later on he told me he didn’t feel good & Jack never complains. My first thought was he has developed pneumonia. It comes on quick with Jack & there has never been any warning that he had it. Jack is more prone to it due to several factors-epilepsy (aspirating), lack of moving around, & getting choked easily. I dug around & found an antibiotic & got it in him & his doctor called in one that morning. He slept & slept, into the late afternoon. When he was awake, he was in & out. Requested food but would only eat tiny bits & then start coughing. After a full 24 hours of antibiotics, he was better, but coughing up lots of phlegm. So very thankful for his doctor that listens & is so helpful. He did complete eating a whole bowl of soup after that rough 24 hour period. Honestly, I never know from day to day if he will end up in the hospital or not.

The trials Jack are going through currently are all because of Dravet & I have to wonder if it is from my pleas with God. Back when Jack’s behavior was so violent & we lived every moment in fear of him, I pled with God to take that away from him, the evilness that lived inside of him would rear its ugly head almost every single day. Our prayers were answered after several years, but with that came different types of worry & scariness-health changes & some violent streaks are still within but no where near what we were going through. We were & are in a damned if you do, damned if you don’t situation. The clinginess Jack exhibits towards me is exhausting. Moments alone to myself are a rarity. Moments spent with Lee alone are not to be had. We are on totally opposite sleep schedules. If I want to spend time with anyone including Lee & Ava, we have to do it after work at a store or a restaurant because if I go home, I am Jack’s. It is unhealthy to be someone else’s possession but I am & there is nothing we can do about it. He has no interest in anyone else in the house spending time with him. And not to mention the impact of having a special needs child with other children, they suffer. They are often pushed to the side & it seems to them they have been forgotten about.

I got a new car (new to me) two weeks ago & I have yet to open the door to it. We’ve been looking for a while now & had to get this one shipped in & also had to buy it before looking at it. When I woke the morning Lee got it, he said go look outside. I did, I wasn’t even excited. Haven’t driven it, nothing. I’m actually afraid to drive it with my luck. After hitting a dog a few weeks ago, I have extensive damage to the front of my Yukon, done on the same day Lee had it detailed-it was just about to be sold too. Berry luck is unlike any other luck in this world-not good! We have a new, young driver on our insurance now & I hit a deer last year, Lee hit one the previous year, & he reported some hail damage last year. We are probably going to get dropped from our insurance we’ve been told. Great! What the heck is insurance for? And now Ava has been involved in an accident. Someone ran a stop sign & her car got totaled, though not her fault & the person didn’t stop that made the error. We just got her another car yesterday. This will make three newish cars purchased in a month! Who other than a Berry does that! Not only all of this, but someone tried to steal Lee’s tractors (yes tractors with an s) on Thanksgiving night. I’m so sick of people. A few years ago, Lee hit a bear, now who else in our county can say that?

Friends of mine/customers step-daughter was injured while she was running when a car struck her. She has been in the hospital for over two months now & has a long recovery ahead of her. Our customers husband said it best, a parent is no happier than their saddest child. That statement certainly holds true for us & if you are a parent, you know those words are 100% factual. If y’all can continue to keep Jack & us in your prayers a little more extra, we would surely appreciate that. This too shall pass is a favorite saying of mine, I surely pray that this feeling that we are in & Jack’s mode of health changes all for the better very soon. The single most valuable lesson I have learned with having a special needs child is how very precious peace is. Having a sick child makes you realize that nothing materialistic, any feuding you have in your life or drama are of any relevance at all. Peace is what I crave the most & I can’t obtain it. I need prayers to help me accept this life. Rationale brain knows that I have done every single thing possible to care for Jack, non-rationale brain says I haven’t done enough & can do more. I am haunted by the fact that Jack is not doing well. I know I have done for Jack all that he will allow. I still keep trying, aiming for other alternatives & treatments, but am exhausted both mentally & physically. If I were a lady of the 90’s & newspaper ads were still a thing, I would run a newspaper ad saying:

Married woman, late 40’s seeks peace from a crazy, hectic, sleepless life. Any Sugar Daddy’s available??? If you are willing to enjoy delicious, home cooked meals by a 1/2 nutty Mama & in turn stay up for third shift with son, you are hired!

Not really…but maybe (y’all don’t tell Lee)!😂😂

Hanging by a thread

When one gets thrown a punch, it seems as though the punches keep being thrown for a while-at least in my experience. Regardless, one must roll with the punches. Frustration with life seems to attack Lee & myself often. Running our own business is a challenge in itself, but we are so grateful & thankful for the nearness of our business to our home, the folks that help us, & the flexibility we are able to have as far as tending to Jack goes. Jack is so very needy & demanding that it is hard to see the rainbow over the clouds. As I reported in my previous blog, which was more of a comedic tale, Jack is once again in another bad cycle, all stemming from constipation. He barely eats anything at all. His hydration nurse tested positive for Covid about two weeks ago & he hasn’t been able to get that nourishment, which has made more of a negative impact than I would like. I am still on a constant quest to find something that will help Jack poop regularly. The meds they gave him from UNC, he hates with a passion & I get it. It is a huge dose of an unpleasant liquid. Jack knows if we try to mix it with juice or food, he absolutely refuses to take it. When he poops, you’d think we won the lottery. I never would of thought my life would revolve around the worries of whether someone is regular or not. But here I am! I didn’t realize until last year that being stopped up causes fatigue, irritably & that’s what we are dealing with along with a severe lack of appetite. He was at least drinking several cups of whole milk a day & Fiji water (remember only the best for Hugh Hefner). Me, I drink water out of a spigot! His water must be from the finest, most expensive reservoir on earth! The drinking has tapered off as well.

The peculiarities of Jack are very hard to deal with. Hugh recently wanted a Smart Water, these can be purchased at our local Dollar General, but it could not be a regular Smart Water. It had to be the bottle with a squeeze top, we got lucky that our small town had such! He took a liking to this bottle & actually drank several full bottles of water out of it in one day. A few nights ago, Jack wanted milk in the special squeeze top bottle-of course it was 1am when he made his request. The blooming nozzle would not come out so I poured the milk into the bottle without spilling it, surprisingly. I got the funnel out but it was slow go, I gave him a partly full bottle of milk & I knew he was going to complain about it. When I handed him the milk, he said the very thing I knew he would, “this looks like the amount you would give a pet”. First off, he wasn’t wrong, but at 1am, I was in no mood. He demanded for me to wake Lee so he could get the top off. Most children you could reason with, not this one. He’s as hard-headed as they come! So I walk into our pitch black bedroom & wake Lee to open the sacred bottle. Knowing full well what would happen when I was finally able to fill the bottle up with milk, Jack did not drink any of it & not much makes me madder than waste. When I went to close the living room & kitchen down for the night, Jack went & woke Lee yet again to tell him thank you for opening the bottle. Not only is he hard-headed, he is kind as well, but at that hour, we were both too annoyed to be thankful for that moment.

Jack’s farm bottle as he referred to it

As Jack falls into yet another bad cycle, he sleeps too much during what are most folks awake hours & then is awake during what are most peoples snoozing hours. All this means, I am awake during normal awake hours & awake during sleep hours as well. I honest to goodness this past week have felt like what the walking dead look like on the outside, on the inside. Two nights in a row I only was afforded 3.5 hours each night. In this difficult cycle he is in also brings attitude. He’s had a BK Whopper warmed up countless times that he has been trying to eat for two days now. I try to stay on top of him & encourage him to eat & drink through the day & night. This is a daunting task, so nerve racking. Jack has recently gotten into Tom Brady & collecting NFL stickers to put in a book he bought from GameStop. This was considered a blessing to me because it is something positive & harmless…or so I thought. Y’all know I am not a girly girl, my nails are still trying to recover from the awful gel nail hell I went through back in early September, plus I like to keep my nails super short. If I see a speck of dirt under my nails, I feel so dirty. The stickers are so aggravating to peel off & of course Jack wouldn’t lift a finger to do this on his own. Everything he does, he MUST have someone else involved that he can boss around & control. As I’m trying to peel of the stickers, I remind Jack to eat. After I did a few (because I was annoyed trying to peel them off without any fingernails to help), I told him I would do the rest after he finished his hamburger. He shouted at me & said in his best demon voice “you’re gonna make me upset”! This was a warning. If I had not gone back & finished the rest of the football stickers upon Hitler’s orders, there is no telling what he would of done-truly. I really prefer Hugh Hefner over Hitler any day!

I have 1/2 moon indentations on my nails from my first & only manicure experience.

What is really frustrating to us is the running we do to appease Jack. The Whopper he had been working on for two days was sitting on his lap when he saw a Taco Bell commercial. He called me while the burger sat in front of him & wanted me to get him three tacos. Of course I did thinking this would be the magic thing to get him to eat, he didn’t. On Sunday mornings, Lee buys our employees breakfast every Sunday. It’s a little treat to reward them for working all week. He usually would get Jack a bowl of grits & a gravy biscuit, but most of the time, they would go bad because he had no appetite. Well Lee finally stopped buying breakfast on Sundays for Jack since it was a waste of money. This past Sunday, Jack demanded a gravy biscuit. Lee was already home, it was lunch time for us by the time Jack awakened. To keep Jack happy, Lee went & bought some biscuits from the grocery store & a can of gravy, assembled it all at the Berry Patch, delivered to Jack. He ate about 1/4 & never touched the rest. Our refrigerator looks like I don’t know what. There is nowhere to put anything or get something out without the pyramid of Jack’s leftovers & opened drinks Jack never finishes tumbling out. The foul language we use when opening that fridge is shameful! We are scared to throw anything out in a timely manner because he has been known to get very upset over his food not being in there.

The pyramid of food stacked, we say a quick prayer before opening our fridge that nothing falls out.

Jack’s peculiarities are vast. We don’t cut his food unless instructed, we ask what kind of dish he would like it in, what kind of cup is extremely important also. Last night I was getting him some cheese dip that he requested, put it in a little glass dish & I was chastised for that. He said he was an adult & didn’t want it in glass. I said there is nothing more adult than a glass dish! This fella! My writing is only venting & sharing with those that are interested in Jack’s condition. People will absolutely ruin anything if you let them. I’ve had people criticize my honesty multiple times since I started writing about Jack & his condition. I feel like people needed to know about Dravet & what all it actually entails for him & us. A large majority of people thought I stayed at home all day doing nothing, although it’s not important what people think of me, it still hurt me to the core. This has not been a great day. Just this evening, I hit a family’s dog, it could not of been helped, but I sure did feel bad. It was a reminder to me how quickly life can change. We know this better than most. When Jack is hanging on by a thread, I often wonder how in the world does he continue. That child was built with more resilience than anyone I have ever known. There is a lot of studying going on in the gene world of Dravet currently, I think they need to study what makes these kids so strong. They truly go through more than any diagnosis I have ever heard of. I pray that Jack’s thread will turn into an unbreakable chain, one that will help him get to the point that he can enjoy life again. I’ve been in communication with several older Dravet parents recently & many see the same issues we do in Jack. Loss of zest for life, low energy. Is it the progression of Dravet or a realization that they are unable to lead the same life as their siblings or other able-bodied people causing depression? I’m going with the progression of Dravet. Ava just turned 16 last week & had a great party. Even though we smile, our hearts are never fully happy because Jack is never able to attend family functions. I love to take pictures as you probably already know if you are a Facebook friend of mine, I feel so empty snapping memories when Jack can’t complete the circle. I have accepted it, but it doesn’t make it any easier. Pray that Jack’s thread will turn into a steel chain, thank you each for your love, prayers, & concern.

The case of the upside down ironing board

Many of you have been anxiously awaiting this blog post about the ironing board turned upside down on our bed after midnight & after Lee had already been in the bed asleep without the ironing board on top of the bed. This whole ordeal spurred because I got sick on my stomach. I truly am beginning to think the purpose of my existence is to provide God with comedic relief, especially during such trying times as the ones we are living in-He really needs some laughter these days! Saturday night, Ava had a stomach problem which I have written about before, it’s called cyclic migraines. She had a spell in the middle of the night with that, or so I thought. When I talked with Mama Sunday, she described much of what Ava went through with herself that same night. I figured they must of had a little bug. I closed The Berry Patch at 7, but I had the Pioneer Woman’s 16 minute chicken pot pie on my mind plus, Jack had a request for shrimp, scallops, & clams. Of course Hugh Hefner did! Our fine grocery store of Ellerbe, Food King had shrimp & scallops thank goodness! He also requested a pumpkin pie after seeing a few cans of pumpkin that I had lying out on the counter. I was going to experiment with a recipe I saw on Facebook. Jack got the idea for the seafood from watching my fave Guy Fieri on Food Network. I have always, always, always said I was going to write a rendition of If you give a pig a pancake book about Jack. If Jack sees something, it leads to something else & the trend continues all day fetching this or that, doing this or that. I also had a ton of clothes to deal with. It had been a rainy/cloudy week & I wasn’t able to hangout clothes until this day since the sun was finally out (y’all know I’m a hippie). I had also ironed several things that needed attention. My aunt has always said a good indication of getting a stomach bug is an increase in hunger, I’ve never experienced that because I’m always hungry, but I definitely had an increase in energy. Those clothes have been awaiting by the ironing board for months-no joke! Why I waited til then to do it, who knows!

Well, Sunday night just after midnight, I got the sudden urge to vomit & all I could think about was never eating food again-y’all know I was sick if I never wanted to eat again! Thankfully I never threw up, but I got weak as water, hot, belly aching. Throwing up is so traumatic for me. I never do, but when I do it’s so hard, loud, & vile. I feel like Billy Blanks has done the P90X inside my very out-of-shape body. To the bathroom I ran! I looked like our customers, the ones that have a certain gleam in their eye signaling to us they need a bathroom, pronto! We are always able to predict what a customer wants just by the look in their eyes, call us the produce psychics. Be it peaches or strawberries in December, Dixie Lee peas in March, thank goodness we can at least have the restrooms year round! There’s a look in the eye for all things produce related, not just what Gary Puckett & the Uniongap sing about in their song, Woman, Woman when he croons “a woman wears a certain look when she is on the move”. Remember that tune?

At that hour of night is mine & Jack’s witching hour. I get him up to take him to the bathroom, brush his teeth for the night, give meds, change clothes if needed, read the Bible while he’s on the toilet or sing songs while Teddy’s nosey self tries to barge in on our time. But with my belly grumbling, I knew Jack would not get any Mama time that night. After my first run to the bathroom, I figured we must of had a quick, little bug. I have ovarian cysts that erupt from time to time & when I do, everyone in Ellerbe knows it. I holler & cry something awful. Lee was well rested by this point, he had had seven naps from 7pm-midnight & I ain’t lying about that so I didn’t feel bad about collapsing on our bed begging him for ice water. He shot up like a light & asked if it was my uterus! I didn’t even know he knew what a uterus was! I wanted to be my usual sarcastic self & say “fool, I’m not pregnant” 🤣🤣 but there was no energy for that. In Lee’s rush to get me some ice water after I collapsed on the bed for my parched throat, he takes the ironing board & throws it on top of the bed upside down.

The calamity continued, after going to the bathroom again, the toilet decided to clog. I’ll tell you, they don’t make commodes like they used to. We remodeled our house during the governments “save water” campaign-MISTAKE. My advice to all new couples is to purchase a washing machine, dryer, refrigerator, & commode from a very old house having a yard sale! We don’t have enough water in any our toilets to cover the hole hardly. This is the “hole” issue-pun intended. That dinged-danged commode gets clogged all the time! So that was another issue Lee was going to have to deal with. Doesn’t a commode always clog during a terrible moment? As I was on the throne, Jack tried his best to get into the bathroom. Sweetly he asked from the other side of the door if I needed anything, then he said, “what about my pumpkin pie?” I can’t tell y’all my thoughts on this one! When I finally got to come out, I began feeling better & sat down in Jack’s recliner for recovery & support. Lee was full-on in Mama-mode but very aggravated & sassy. I get it, he gets up early & deserves a nice sleep, but I got immense pleasure from him having to do my duties, too much pleasure in fact. Jack wanted all his clothing to be changed even down to his undies. While Jack was waiting on Lee to come back & help, Jack called me over to his bed to investigate what was on his legs. There were pure white dots speckled all over his thighs, I had never seen anything like it. My mind already delirious from sickness, I began running through disorders in my head convinced Jack yet another rare condition of the skin this time. In walks Lee with a wet washcloth, it was toothpaste! I needed to rest! Lee had already gone through the interrogation of questions while Jack was using the bathroom & brushing his teeth which I found so comical, but the questions still kept rolling. As I sat in Jack’s recliner watching the spectacle, I snorted with laughter, the kind that makes you cry. Nothing Lee did was right. I was saying in my head “welcome to my world”. Let’s face it, most duties fall on the Mama’s, so being able to watch this brought me the utmost joy.

Quick update on Jack. He hasn’t been doing so well this week. He fell into a bad slope due to constipation. So we are back to trying to get him to ingest liquids & food & trying to get him to sit on the commode which is such a struggle. I can’t tell y’all how much time it takes to get Jack to just ingest a cup of drink. None of us mind doing anything for our kids at all, but just imagine the patience it takes to do that & then the eating. So much of my time is devoted to Jack trying to provide just the basics for him to live, not to mention the time just hanging out & sitting with him. If y’all can be in prayer that Jack gets over this hump quickly, we would appreciate it.

There you have it folks, a tale of an ironing board, cooking, sickness, & laughter all rolled into one. By the time Lee was finished being a Mama, he was good & ill with me for laughing like a hyena. He went to bed pouting, I went to bed laughing for once instead of crying and/or frustrated. And pictured below is Jack helping me make the pumpkin pie he ate only one slice of which I had to make when I got home from playing two softball tournament games after 10:30pm the day after my bug. Let’s hope this is the last sickness of the year!

Jack called the popo

What a total relief it is to not currently be consumed with fear. Those of y’all that have kept up with my blogs over the years know the disastrous struggles we have had to face with Jack; fear of attacks, actual violent attacks, him befriending strangers, us having to purchase gift cards for strangers online & trying to move a stranger into our home, Jack doing things to his body because someone online told him to, & not to mention the severe medical issues we’ve had to deal with. I will say since Jack has been born, this is the most relaxed I have been & even that isn’t much. I’m so used to being uptight & wound-up from the unexpected & the expected that I kept literal knots in my body (chiropractor visit today for the first time in years). I’m no fool, I half expect this to change by the time this blog is issued. It is so difficult for me to speak the truth even when it’s good truth because often times that truth is spit back in my face like a raging fire. Jack has struggled with his energy levels since coming home from the hospital during his unfortunate incarceration at UNC hospital for nearly two weeks back in May. Originally, he was hospitalized for malnutrition issues in which his team wanted to place a feeding tube immediately, but I knew in my heart & every fiber of my being that Jack would not want that nor would he tolerate that. Thank you Jesus that I have guardianship over Jack or I would of been facing jail time I feel certain. I was berated more than once, told that a feeding tube was Jack’s only hope, asked if I had guardianship over my own disabled child more than once, made to feel like a total & complete failure as a mother, had to meet with the hospice team on several occasions because that’s what they were sending us home with, & all the while I did this alone due to Covid (how many of you are tired of hearing “due to Covid”?). No parent should have to face any of that alone, it really was one of the most trying times of my life, I cried myself to sleep every single night & then some. Jack was released from UNC once the team saw they could not break me down into the feeding tube talk & released him with pneumonia that no one knew about. I tried my best to tell them Jack was sick but they didn’t listen. After being home a few short hours from the first hospital release, Jack was in an ambulance barely breathing. Once things calmed down with the pneumonia & Jack made it back home, he was eating us out of house & home, he began gaining weight which was wonderful, was using the bathroom regularly, & not sleeping as much, we were thrilled but the huge amounts of food he was ingesting was causing his medications to be metabolized differently & seizures increased, which meant violence was knocking on our door (violence after a seizure is a commonality for Jack). We watched him tear our kitchen apart back in January after a grand mal seizure. Thankfully & woefully, the eating started tapering off in a huge manner rather quickly. Thankful because that meant we would not have to add or increase seizure medications which is always scary, woefully because the lack of eating & drinking were slowly driving Jack back into a malnutrition state. I tried everything under the sun, moon & stars when Jack’s eating failed. From his beloved year-round elf leaving special food gifts, to buying water from his favorite country of Australia, to of course buying his most fave meals from Chiba, Dixie Burger & Bojangles. Sadly, none of these items held any will for him. Jack was listless & sleeping a lot yet again & I knew another hospital stay was on the horizon. Through a friend, I found Jack’s hydration nurse. Her presence has been a wonderful blessing to us. Jack respects her & values what she has to say, unlike his stupid parents lol, after all, Jack is a young adult who thinks anyone that lives in his house is an idiot! Each time his nurse would come, his blood pressure would be extremely low. This came from being severely dehydrated & it is also a Dravet thing, couple the two together & it makes a very bad recipe for health. Jack simply did not have the energy to eat nor drink. I am always looking for alternatives for treating Jack at home. One, he doesn’t like nor want to go to the doctor, two, natural alternatives have helped Jack almost more than conventional meds in some cases. I have known how to treat Jack best a time or two, so for those that say don’t question science, think again. I have always & always will question science. There are too many incidents in Jack’s medical history that science was questioned & Mama was right.

After going through much of the summer with fatigue, dehydration, starvation, listlessness, I again started researching alternatives. On a Facebook ad of all places, I was lead to a vitamin patch. I got the ad because of all the searching on Google I was doing to find something to help Jack. Jack takes so many pills & he takes them all at once, I’ve never seen anything like it. He pops them all in his mouth at one time & down the hatch, unreal! Not only were we able to remove one behavior medication late this summer, we were able to reduce the dose of another one & hoping to get him off of it real soon since behavior isn’t a top concern at the moment. I’m not going to play with any of his seizures meds because they do seem like the right cocktail at this time. I ordered two different varieties of the vitamin patches, one was iron because he has been known to be deficient, the other was an energy patch. I prefer to do small changes at a time so we will know what works or doesn’t for Jack. I started with the iron patch, no changes. Then I started with the energy patch a few weeks later & boom, he came alive! He has had the energy to eat & drink! With his blood pressure so low, he had the desire to eat but not the will. This patch has changed that. He isn’t gorging like he was when he arrived home from the hospital back in May, but he is eating one to two meals a day & popcorn, plus drinking more which has made his blood pressure rise (and that’s a good thing)! What’s different about this patch is how the vitamins are delivered, they are absorbed so much better through the skin than in capsule form. I’m so very thankful for this particular Facebook ad. I have fallen down the rabbit hole of many Facebook ads that have proven to be junk, not this one though. And what makes this all so much sweeter, Jack is actually eating things we cook at home instead of drive-thru food. This has been a true enjoyment for us. The amount of food wasted & money thrown down the drain from takeout meals was really astronomical. Just tonight he wanted me to make him potato soup.

vitaminpatchclub.com

Jack has been more mobile since he has been more energized. Sitting outside for nearly nine hours one day, enjoying Dancing with the Stars in the living room with me, calling people on the phone again. If you are a follower of ours, you may remember back this summer the trouble we are having with the neighbors barking dogs. I tried to lean on the sympathetic side of our neighbor but she apparently has not one by explaining to her our delicate sleep situation which is basically we ain’t getting none! After repeated messages to her, I was called a Karen & self-absorbed. I truly hate what our culture has done to the beautiful name Karen, I have always liked it & thought it was so elegant. One particular morning, the dogs were cutting up early, for hours. It woke Jack up, he wanted to walk over there & confront her, but I was able to deter him by saying we would let the police handle it. Ha! We’ve had to call the police several times because the dogs get out of their fence, come on our deck or porch & bark incessantly & I am not sending her messages or going over there, things could get ugly. Last Friday, Jack’s caregiver Sherry called me to inform me Jack called 911 because the neighbors dogs were back in our yard. I called Lee & he rushed home & talked to the deputy. We have a wonderful sheriffs department that is very understanding & caring towards Jack & we are so thankful. I bet that neighbor thinks “Karen” called the police on them again, she didn’t know we have a “Chad” in the house, too (sorry all Chad’s)! Jack is a leader, albeit he doesn’t often go about things in the right manner, he is still a leader. We do not get the neighbors though, they undoubtedly must take tranquilizers when they let these dogs out!

Every bit of this positivity could change in an instant, but it feels so good to be able to breathe & not worry as much. We honestly never know what Jack may do from day to day, ie calling the popo! Jack tickles me often, he can be really funny but he has such a dry sense of humor & gets angry when someone laughs at something he says. This is so hard for me because I find so many things hilarious & have a hard time containing myself. I’m the kind of girl that has been known to laugh at a funeral or a wedding totally & utterly uncontrollable, but that was before life got so stressful for me. Now if I laugh, it’s just a quick burst, I haven’t had a crying fit of laughter in a long, long time. I’m like the song Harden My Heart by Quarterfish. Tonight Teddy & I were playing, Jack was in the living room oblivious to Teddy until Teddy ran through the living room, bound himself on the couch & ran back through again. Jack said, “Teddy is like an Australian boomerang”. I died laughing. Not only was that funny, it was using such quick wit, something that people don’t think special needs people have. Jack is very quick witted! He got really upset that I was laughing at what he said & that made me sad that he was upset over laughter. He had the ultimate revenge plan held over my head though. Jack told me if I didn’t stop laughing, he would delete all my shows I recorded on the DVR! He is evil lol! Below is the video of Teddy running around & throwing himself on the couch like a boomerang.

Teddy the boomerang!

Another moment of hilarity was when Jack asked me about Halloween. He wanted to know if Biden was going to allow Halloween this year. I didn’t respond much because holidays tear his nerves up. Jack said “he ain’t said nothing about it”! Then he said, that Biden & Roy (Roy is our governor here in NC & spelled out) L-E-A-V-E!” Jack has never forgotten what Roy Cooper did to his birthday celebration back in 2020. Cooper shut down nearly everything & Chucke Cheese happened to be one of the places, Jack is accustomed to going to the one in Greensboro, NC to celebrate & all because of Covid, we had to ride to South Carolina to celebrate since their restrictions were/are null compared to NC’s. He is a funny guy! What a pleasure the last few weeks have been for us. Though we still have to be extremely accessible to Jack-running up & down the road to buy 9 volt batteries for an elusive Power Ranger toy, an eBay gift card, or my favorite, phone cord chargers which seem to have the life-span of three weeks max, it still has been a wonderful respite for us, one that we pray will continue for a lifetime!

Ode to the old comforter

I will soon be 46 & my menopausal symptoms or PMS symptoms showed-off tonight at 1:15am. I’m not sure which because I still have my curse but I sure was ill as a hornet. Had it not been for Jack’s sensitivity to anything outside of the norm, I would of tore our house down! It’s safe to say most of America is on edge. We have a lunatic running this country, Covid is running rampant, there is a great amount of division, very firm but different beliefs about Covid, Ivermectin, vitamins, the vaccine & just about everything. Not only do I get worked up about all of the above, my neighbor that has the two constantly barking beagles now has a rooster that crows. What fun! Not going to bed until after 2am while waiting on Jack to fall asleep & now being awakened by a rooster is pure & utter torture. Along with the rooster, there are ducks. We live in town limits. This woman literally has her pick of two houses (she owns both), the one she is in which is right beside us or one across the street & all because torture loves me like no other, she just had to move in beside me where her backyard connects to ours. I am the only neighbor that has complained to her, everyone complains to me but nobody else does to her. The town doesn’t do anything either. I’ve already had the police over there. It really is a frustrating situation. I even spent $200 on a box that is supposed to keep the dogs from barking, it does not work, but how can it when the woman has a mini farm out back with chickens & ducks that get hunting dogs wired up? Enough about those nuisances. Any way, Jack has been wanting a new comforter. He really wants a wrestling comforter. Although we aren’t sure why, he never watches wrestling but talks about Charlotte Flair a lot & her Daddy, Ric. Fun fact I found out when Jack asked me to look up Charlotte’s manager, their last name is really spelled Fliehr. My younger Saturdays were spent jumping up & down on the couch rooting for Dusty Rhodes when he & Ric were fighting. I thought the Nature Boy’s last name was actually Flair. It only took 37 years to find out the truth, all because I’m Jack’s secretary! Jack’s comforter was actually Coleman’s. It has been around for many years. It has been peed on countless times, vomited on one time too many, washed & dried, washed & dried, & washed & dried 1000’s of times, all this mainly because of seizures. It came from Walmart & that comforter has been through it. It still looks every bit as new as it did when I bought it. It kind of makes me sad that it won’t be around any more. When Coleman wanted a new one, it was a sign he was growing up, now, I guess that is the same deal for Jack. The end of an era.

Of course Jack wanted me to buy the comforter instantly, but I thought maybe I could get him to put in a little work if he wanted it, try to show him that he needs to work for things he wants even if he can’t “work” for items he wants us to purchase. I agreed we would purchase him a comforter if he drank three cups of liquid a day. I’ve told y’all how Jack has zero desire to drink any type of fluids. When I give him his day medications, he takes two sips, 12 hours later, the same amount of liquid that was there that day is still there that night. He gets that mess from Lee. Lee Berry will eat every meal I cook for him & never drink a drop of liquid & sit in his recliner hiccuping because he hasn’t drank anything (which gets on my last nerve if you couldn’t tell). When we go out to eat, Lee requests for his tea to be put in a takeout cup to drink through the day, he never touches it. I blame him for this & Dravet! Seriously though, Jack has lost all sense of thirst which is a characteristic of Dravet just like not having a sense of pain. What got my nerves so riled up tonight was because of our deal. We had a baby shower for an employee of ours this evening so we didn’t get home until around 8:30. When I got home, Jack had not touched his drink from when I left at lunch. I reminded him of our deal. It was a mini-bottle of Sunkist, something most young adults would throw back in a matter of minutes. He held it, nearly spilled it several times, held it some more, two hours went by-nothing, still the same amount as before was in the bottle. At 10:30, I reminded him he only had 1.5 hours left before the deal was broken. He then requested a grape koolaid drink. I took it to him. At 11:15, the Sunkist that he held for hours did exactly what I thought it would do, spill all over his bed. Jack would not get up for me to clean it either. This is the kid that if he gets one droplet of water on his tshirt, he must change immediately. He was soaked & so was each layer of the bed. Jack is extremely particular about his bedding, you’d think he was Martha Stewart so I knew this was going to be an issue. I don’t consider myself a frivolous person. I love to recycle, use what I have until the last bit is gone, if I don’t like something, I find someone that does, I recycle everything & I definitely do not have anything in excess, sheets being one of these-that is changing after tonight’s ordeal! By midnight though, Jack drank the grape koolaid, plus a cup of water so he made his goal, mostly. With aggravated nerves about the spilled drink, he had me pour the water that was already in a glass into another glass before he would let it touch his lips. What an annoyance to me & only added to my frustrations!

Naturally, Jack would not get up until 1:15am for me to clean everything up. He expected me to wash his bedding, wait on it all & then makeup his bed. It would have been 5am before all that would be done! I’ve written a blog about my confounded washing machine before & it is not a kind one (neither the blog or my washing machine). It takes 1.5 hours to wash sheets in my machine! Maytag lies! If the makers of these washing machines would spend less time worrying about the lid locking (which is a child safety precaution) & running more water to fill the washer, they might could make a washing that actually cleaned clothes (this makes me heated as well if you couldn’t tell). I mean I have never! I never as a child had the urge to climb inside a washing machine & if I did, I surely wouldn’t turn it on with me inside. It’s the adults that are the stew-pied ones in this world, people with big fancy degrees (and no offense if you have one, if you have stuck with me throughout my blogs, you’ve got good sense lol). So at 1:15am, Jack finally decided to get up & let me wash his comforter. I told him there was no way it would all be done soon, his response was he could wait up on it. But I knew what would happen. He would fall asleep around 2am, then wake at 4am angry because his bedding wasn’t on. I had to improvise or else I knew there would not be any sleep for me. Without a spare set of sheets to fit his bed, I ended up having an extra set for mine & Lee’s bed which is a king size, Jack’s is a full. Jack was in the bathroom while I was stripping down his bed & everything was going wrong. First, I was changing a bed at 1:15am. Secondly, he spilled that drink on purpose to get out of drinking three cups of liquid. Thirdly, he had every piece of junk & tiny guitar picks piled up on his bed. Most of it was so small I couldn’t see that it was on the bed & it fell on the floor. Making a king size set of sheets fit properly on a full sized bed for Mr. Martha Stewart himself is not an easy job. I was having hot flashes, I was ill, I was tired. I slammed the remote down that of course fell on the floor. I wanted to tear the house down at that point. Thankfully, Jack was satisfied with the sheet placement, my improv passed inspection!

So a story about a spilled drink led to several other stories all to get to the point of me on the verge of a nervous breakdown all because of changing the sheets at 1:15am. The crazy things that goes on in our house after midnight is so funny to me when I look back on it all (after I have calmed down). All I can say is, I am so thankful I was not doing all this from a hospital bed. Each day Jack avoids the hospital, I am a happy camper. We often have to find blessings in unique hiding places! Here’s to hoping Jack can holdup to his liquid intake deal for a week & that it sparks a natural thirst. I’m also going to be making some medication changes so if you will be in prayer for both of those requests, our family would appreciate it. Now go find your blessing in a crazy way! Cheers!

Preying vs. Praying

Life is tough, I think that has been the beginning of many blogs to describe life for our family. Life is also weird. Our lives are often tough & weird at the same time. Tough for the obvious with the challenges we face caring for Jack & weird based solely on the Bermuda Triangle of Dry Land, aka The Berry Patch. It was only less than two years ago that we were dealing with the unbelievable with Jack. It is so hard to believe that he called a taxi & got in it just a few years ago. If you missed that blog let me know & I’ll send it to you. Jack’s behavior was also through the roof. We were running around town all the time buying gift cards for people that were scamming Jack claiming they would be his girlfriend, he told me one night that some gal was gonna move in with us & there was nothing I could do about it, & he talked to all sorts of strangers & told them all where we lived, we owned The Berry Patch, practically everything about us. He was looking at inappropriate images, talking about inappropriate things & not even understanding what any of it meant. Jack also did things that I can’t even speak of & never will. The summer of 2019, Lee & I were really getting serious about residential placement for Jack. I started recording Dr. Phil even though I dislike those type of shows to see if he had anyone on there like Jack & what he did to treat them, I have never once seen a case like Jack’s, even wrote to Dr. Phil but never got a reply. We went through complete & utter hell as a family. Jack tormented us & had no idea he was doing so. Jack was oblivious to our fear of strangers showing up trying to move in, kidnap him or Ava, the financial burden he placed on us multiple times a day with buying gift cards for a strangers affection, plus the fact that he could whoop our tails in a matter of seconds. I was armed at home with mace should Jack attack. We absolutely had a disaster on our hands.

Practically Jack’s whole life, we’ve been involved with a social worker for this or that reason most because of his medical needs, but as I mentioned above, the summer of 2019, we were preparing to place Jack somewhere so that we were not threatened on a daily or lived in sheer terror of him. I learned that there was no place for Jack, or that’s what the social worker basically told me. Now I know nothing would be like home nor would he get cared for like he did at home, but something had to be done, Jack’s behavior was killing us. I wrote many, many blogs begging for your prayers for Jack. We prayed ourselves for the evil to leave Jack & the sick people that were preying on him to leave him alone & for Jack to loose complete interest in the apps such as What’s App? or dating sites which was causing so many problems. While strangers were busy as bees preying on Jack, we were busy as bees praying diligently & fervently for Jack to find complete & total disinterest in the bad things the internet had to offer.

While we wanted an instant miracle, God had other plans. For years, the torment continued from Jack. Physical abuse from him, scary situations he would get himself & possibly us in, & he was plain mean. He would talk to us terribly & Jack has a very caring heart. It was so scary that I keep a bottle of wasp spray in the living room prepared to blind the predator that might show up that day. Not to mention he would stay awake for days on end. It was a really trying time for us. I’m not ashamed to admit it because God knows my faults, but I would fuss at God & wonder why every single aspect of Jack’s life had to be complicated & scary. I am ashamed of thinking God had given up on us as a family, on Jack. I did not keep the faith throughout. I am weak. Though weak, God helped us through a horrific situation that only God could. It took a while, but it was in His time. The day will come when I ask God why we had to go through such hardships with Jack. The answer has got to be something amazing! It took a long while as I said for things to change. The change took place when talk about Covid started to arise, late in the year of 2019. This was the first time Jack’s health had significantly shifted, ever. The shift was something most Dravet families have dealt with or deal with on a daily basis. Jack was always like a bull in a china shop with us, so the change was slightly welcomed but also new & uncharted territory. In the mornings prior to his change, he would get up bouncing off the walls, calling everyone in the world, would grab hairbrushes & throw them at lights & bust them, pick physical fights, he ate lots, & drank tons of fluid. After following up with the social worker about the lack of facilities for Jack, I told her to hold off because the Covid restrictions were so rigid for people in homes & restrooms, plus, Jack was doing really well as far as the bad stuff was concerned. I can not imagine ever placing Jack somewhere but I certainly could not ever imagine putting him somewhere where no visitors were allowed. It breaks my heart so much to think of the people in those types of facilities that could not have any family support & they did not understand what was going on in the outside world, which I don’t either myself either any more.

During my prayers when Jack’s behavior was so threatening, I prayed that the evil Jack partook in would cease. I begged God to stop it, pled with Him & He did. It wasn’t immediate, it wasn’t within a month, but it happened. Were these changes something we willingly would have asked for if given a choice, the answer is no. The changes that Jack has gone through have been difficult to accept from all of us. As the changes in Jack’s health began, we thought it would be temporary, now we are learning that it may be permanent. I question myself often wondering if I prayed for this for Jack. Realistically I know that I did not. I asked for changes, but I didn’t really know what kind we would be granted with. Acceptance of Jack’s newest condition is a hard pill to swallow, however, it is God’s will. Is he healed from all of craziness we had to be privy to, I’m not 100% sure on that. We are not sure if he will ever revisit that again, but we sure hope he doesn’t. Jack still has violent tendencies, still has refusal bouts for medications, still has a lot of demands, these are manageable. He has not tried to move a stranger into our home in 1.5 years, he has not called a taxi to take him to Dollar General to buy a gift card for a fake girlfriend who is catfishing him online, he is not talking to us in rude, derogatory terms like he was previously. This is what we prayed would stop & it has. All the glory to God for blessing us with that miracle!

Jack is weak now, but he is the most resilient person I have ever known. He is not in need of a hospital stay at this time. With the help of his hydration nurse, the hospital has been avoided, praise Jesus! He eats about every other day now, which is leaps & bounds better than before & drinks more now. I am so very grateful that the bad bad is gone. The lesson I have learned is to not give up on prayers. Prayers are heard. Prayers are answered. They are not always instant which we think they should be. There are days that I’m down so low thinking about Jack being weak & not eating, but I try to remind myself where he was. Jack is now more tolerable, sweeter, & so much easier to get along with. I cherish the days he is mobile & wants to get out of bed & interact with us. I absolutely loved taking him to the movies last week no matter how much it cost. It was a blessing to me, I would of paid $1000 if that meant getting him out of the house & having fun. He loved the game room most of all. It was a perfect situation to take him because no one was there & I mean no one. I feel so sorry for the movie theaters now. Please go out & support them, do it in honor of Jack! Just be sure to take a suitcase with you in case your child plays in the game room, you may come out with a ton of loot like me!

Jack’s loot!

Confessions of the sleep deprived

If you have a healthy child & you don’t already know it, you are blessed. Now I love Facebook. I love seeing pictures of friends kids smiling, playing, interacting with other children, it’s truly a wonderful sight, but it also hurts. We rarely got that gift with Jack. Seizures were always at the forefront, stopping any sort of fun, extra activity we tried to have as a family or just having fun being a kid. Jack could jump on a trampoline for ten seconds & boom, a seizure would strike. Had to get rid of the trampoline. He would have seizures at VBS, had to quit going. He would have seizures during family gatherings, had to limit those. Have seizures during every birthday party he ever went to, had to stop going to celebrations. When the kids were smaller, riding bikes was not something they could do much of because the exertion it took to ride one induced seizures. The normal everyday occurrences that we all have taken and/or take for granted, had or have to be shut down for Jack, & that also meant a division in the family. Either Lee or myself would stay home with Jack & the other would take Coleman & Ava here or there. Rarely has there been any unity with the five of us. If so, it’s at Christmas & we are all walking on eggshells even then.

Most of you know Jack recently celebrated his 20th birthday. Jack is the type of person that starts planning his next birthday the day after his special day. I felt like the excitement of his day of birth was contributing to his refusal of food & liquid, much like what happened Christmas of last year. He was so anxious & worried about what every single person in the family was going to get him, it worked him into a big ole knot. Though it doesn’t look like it from the outside, one of the characteristics of Dravet is not being able to properly handle excitement like typical people. Couple that with severe constipation from refusal to eat, drink, & take his medication, it’s a recipe for disaster. Jack has zero reasoning skills, so I can’t sit down & talk to him about the damage he is doing to his body, although I have tried. Come hell or high water, Jack was going to Chucke Cheese to celebrate his birthday. Picture trying to take an already fragile human to a game room, but imagine taking a fragile human that hasn’t eaten or drank anything of significance in weeks, nor pooped. It was awful. Jack couldn’t hold his head up for nothing. Being dehydrated causes low pressure. Low blood pressure causes fatigue & other things. Jack could not hold his head up, couldn’t talk loud, did not interact with any games. We have celebrated countless times at CC & each time we have always had to pry Jack away from the games to get him out of that place. This time it was rather easy to get him to leave because he was so tired. He got in the car & crashed. He slept the whole way home, Lee had to carry him inside the house, he slept all day & evening, just completely wiped out. The next day, I felt sure he would be hospitalized soon. Thankfully, Jack slowly started to come around the day after his birthday. He asked for drink, asked for things to eat & ate them. What a relief! I had already sunk into a deep depression thinking about going back to that hospital under such terrible restrictions with Covid. I mean I was down. I made myself sick with worry because I knew I would be the one to stay with Jack & not be able to leave for a breather since the hospital has become more locked down with the increased number of Covid. Doing that alone with Jack is so stressful but only because he can be extremely uncooperative & violent.

Jack has been eating, not a ton like he has during his other extremes, but enough to keep him home. There is still a HUGE resistance to taking his digestive medicine, I am praying for a bowel movement so big we have to call the plumbers to come unstop the line! Jack has still got his days & nights mixed up, hugely. As I work on this blog, I am watching him sleep. He fell asleep around 5pm & is still asleep at 12:45am. I am up because he typically awakens around 1:30am when he sleeps like this & he needs his seizure meds particularly because he didn’t have his day dose, refused to take them. He woke up one morning at 5am, didn’t go to bed til 2am & stayed up until 11:30am only to go back to sleep. Reminds me of a babys/toddlers schedule so much. Only this go round, I am much older & iller to have this kind of lack of sleep. If I don’t get a decent amount of sleep (at least five hours), my heart goes crazy & I have been feeling it last week & this week. I have a minor issue of mitral valve prolapse, nothing too serious, but inadequate sleep causes me to have extra heartbeats as well as tachycardia.

Speaking of hearts, how many heart attacks can one have before they fall over dead? About a month ago, it was the blind falling in our bedroom that made Lee & I think someone had busted the window out at 3:30am. We were completely skeered too death! The last one happened just a few nights ago. Ava has something called cyclical vomiting, think of it like having the symptoms of a migraine without the headache, vomiting spells & severely upset stomach. She’s had it for years, took an episode of Grey’s Anatomy to figure it out (literally) & a doc at Chapel Hill. We thought she was outgrowing it, until she gave Lee & myself our most recent heart attack & I’m not even lying. I am an organ donor, if anyone gets my heart, they are going to be getting a strong one or a worn out one, 50/50 shot! At 3:30am (the witching hour in our home), I heard a murderous scream from upstairs, Ava was hollering my name. Lee & I jumped up thinking someone was in the house or knocking on the door. I ran upstairs & Ava was having a spell. After tending to her, Lee told me he twisted his ankle getting out of bed, then ran into a drawer he opened. This is a wild place to live! I was recently called a Karen & self-absorbed for complaining about my neighbors barking dogs that we’ve been forced to deal with all summer long & told by this person I needed to sleep more which is ironic because it’s her dogs that are keeping me from doing just that. This only adds to the list of wildness that I am surrounded by.

She also told me I thought I was the only one with daily struggles which is just not true. I know the struggles a certain friend has with her job, various friends with a multitude of illness and/or hardships, the struggles a friend has with the loss of her son. How any of that is relevant to her dogs barking I don’t understand. I know that our struggles with Jack are not the only ones in the world, I’m merely a select few that chooses to write about them. Sometimes strange, funny, sad or all of the above. I wish I didn’t have stories to write about. I want to not have struggles, but the reality is we all have them, big or small. Struggles are relative, but struggles create courage. Our family has had to face some of the most unimaginable things ever, but the one blessing I pray each of them gather from the stress of our lives is the gift of courage. If we don’t have courage, then we no longer have drive. My drive looks different everyday depending on what has gone on at work or with Jack. Some days my drive looks like this, an unmade bed. 99% of the time, I make our bed, but every now & then, I can’t muster the energy to do that little thing. It takes no time at all & has always been a priority of mine as an adult. Makes me feel better, sets the tone for the day. On the days I can’t, I shut down, I am depressed, but thankfully I have courage & soon gonna have an air horn 🐶🐶🐶!

Outdone

I am outdone, I have met my match. My match would be Jack. I get so very annoyed & irritated with him. I know he can’t help it, but that doesn’t make our dealings with him any easier. It baffles me how he doesn’t have any urges to drink any form of liquid for days on end. Although the hydration therapy has helped some with Jack’s energy level, it hasn’t restored his need for thirst, although it has helped with his hunger cravings slightly. I would like to be a 45 year old runaway & I’m being dead serious, but then I think about what the consequences would be & I think better of that option. Poor Lee would have to become me & that is something that even Bruce Jenner isn’t able to do! The daily struggles of trying to get Jack to sleep, trying to wake him, trying to keep him awake, getting him to take his medications, trying to beg, plead, deal with him to get him to eat & drink even the tiniest of morsels is becoming more than I can handle mentally. When I worked at the hospital years ago, I used to have to go to the psychiatric unit to do EKG’s, I thought it was a creepy place, now, it doesn’t sound like a bad place to go! If I even tried to express in writing what a typical day has turned into with Jack, I would be unable to convey the extremes. Not meaning to sound boastful, but we literally bend over backwards everyday to try to accommodate him so that he may do any of the above things listed. The lengths we go through each & every single day are unimaginable. I’ve always said even Steven Spielberg couldn’t make up a story like ours & it just absolutely makes me sick that our lives have come to this. Jack will never understand what I have go through to ensure he doesn’t get into an altercation with us. He’ll never understand the money we have invested in him on a daily basis to keep the peace. He’ll never know the hours upon hours I have spent trying to research things that might help this condition or that condition. The amount of reading I have poured into my brain to try to better understand him or help him. The fights I have had to go through with Social Security-the harassment from that office alone is worth a lawsuit, the phone court cases I have had to do to get insurance to pay for his medication, that damn elf that leaves special surprises throughout the year to try to entice him to eat. The list is endless. It now feels like I have done all of this for nothing. I don’t want it to feel that way, but it does.

As a parent of a severely disabled mentally & physically child, you never get a vacation, a relaxing moment, or peace. I guess this is a woe is me blog. Will I be admitted to a psych unit? Doubtful, but who knows. I do try to make the best of our situation, but it gets to be too much when you have a child that will not give an inch. This is a rundown of Tuesday & some of Wednesday:

11:30pm Monday, Jack goes to sleep without taking medications.

3am Tuesday just a few hours later, Jack wakes up. It’s too late to give him his medications, plus, I’ve only been asleep around an hour because Jack typically wakes up around 1:30am when he goes to sleep early. He did not, waited til 3am. Played with his guitar & on phone. He was up til around 8am, that’s when he hollered for me because he was falling off the bed. Had to go put him back on it.

8:30am, both Jack & myself fell back asleep. I didn’t wake til 11am (which I hate sleeping that late), he didn’t wake until 2:30pm & that was with begging & pleading. Meds didn’t get taken til 3pm & that’s very late. Ideally the meds needs to be taken at 10 or 11am & this is because he is on an ADHD medication that impacts sleep in a negative manner if taken to late.

3pm, wants Pekin Wok (Chinese). When I go to town to get supplies for the Berry Patch, I was going to pickup food. Just my luck, the restaurant closes on Tuesdays now, I guess yet another casualty of Covid. I had an appointment in Moore County at 4:30 so I just said I would get food there. After my appointment & running a few errands, it is discovered that no one in Southern Pines/Aberdeen (the area I am in) serve the Chinese food Jack is requesting, so I have to go back to the other side of town again to get this food & boy was it expensive-$70 worth. I come home, give him the food, he eats NOTHING! This truly makes me angry. Lee & I work so hard to make a living & Jack wastes so much of it. Case in point, he also wanted a new phone case Tuesday because he doesn’t like the one he bought two months ago any more. I couldn’t find one to fit it, Lee went to Family Dollar & bought two & neither one fit. He also fell asleep early again without taking his meds & woke up at 5:30am ringing the bell for us to change his clothes. He had taken off all his clothing except his underwear. He could of easily put more on, but no, had to involve us. Was up for a few hours & fell back asleep yet again & had a hard time waking up. He is sleeping, but he’s not sleeping good or at the right times. The next thing he wanted to do was go to Walmart to get a 1941 Batman comic book. He doesn’t care a doodle about a comic book, but wants them for some reason. When I tried to explain to him that Walmart doesn’t carry old items like that, he didn’t believe me.

Our hands are tied with Jack. We can’t force him to do anything. If we try to force, we are met with a force that will tear the fool out of you. The resistance from Jack is enormous. It is heartbreaking because I know there is help for him in the eating & drinking department with taking the appropriate medications or a feeding tube, but there is a saying that used to be popular, “my body, my choice”. This is essentially what Jack is saying to us without saying those exact words when we try to get him to go to the doctor or suggest a new treatment option. There is only so much we are allowed to do. With that being said, Jack is not only suffering, we are as well. We suffer in that Jack’s health is failing & our hands are tied & it is breaking our souls. We are also outdone that we do so much & nothing helps. Even talking to Jack about what is required to live hasn’t helped. He literally has only had four sips of water over two days & that was only to take medication. Now imagine us trying to do all this & hold down a regular job, another reason why we are grateful for The Berry Patch, the people that support us & the wonderful people that work for us. even if we do work like Trojans. I say it at least weekly, there is no help for the mentally ill.

This is nothing but a venting blog. People still stop & ask me about Jack when I see them around town, so I wanted to do an update too. Poor Ava had two of her wisdom teeth cut out Monday & is trying to recoup. She was originally supposed to get all four out but the doctor changed his mind about the other two when we got there saying that the top two were still in her sinuses, so she’s got to go through this all over again…allegedly. And Coleman had a virtual interview for a potential job in Idaho today. Things are changing for our family, but Jack’s situation has remained the same. Thank y’all for listening, thank y’all for caring.

Vacation Aftermath

I don’t know about with you, but often times there is hell to pay when you come home from a vacation. I wouldn’t exactly call ours a vacation, it was just two nights & I got severely sunburnt. I tried the Preparation H cream, poured a beer on me which nearly caused me to die because it was so cold, & many other remedies. Our vacation centered around the water from our evening speedboat ride, a day by the ocean unfortunately resulting in a severe sunburn but totally my fault (my belly hasn’t seen the sun in 10 years), a dolphin cruise, but regretfully our parasailing adventure was canceled due to a storm, eating of course & nothing decent enough to speak of. I was blessed by our Creator in many ways, cooking was one of those blessings, it’s also a curse. It is so very hard to enjoy a meal without critiquing how it could improve. I’m a hard restaurant sell & I really wish I wasn’t. Other than having severely burned skin, I came home to a home without Teddy-he’s at training camp, plus, I came home to a sleepy Jack at 5:30pm who hadn’t drank anything all day or ate anything other than an applesauce. It’s so very hard to keep this life going at the pace we do. I tried so many things with Jack when I got home from mashed potatoes & gravy-he spit them out on the first bite & he usually loves them. I tried some of the protein gelatin cups I bought before he went into the hospital two months ago-spit it out. I can’t blame him on that one, it stunk something awful. I gave him some vitamin chews that are supposed to stimulate his appetite after all that. I also made a protein pudding cup that is currently chilling & I’m praying he’ll eat that. After doing all that & with all the encouraging in the world, I wanted to have a mental breakdown because he didn’t eat anything. This lifestyle is exhausting mentally more than anything. I get so absolutely frustrated with Jack’s circumstances. He can’t help any of it I know. Trying to maintain a household, a business, & the full-time job of tending to Jack is a lot on a person. When I left on Tuesday morning, Jack had two Gatorade’s on his nightstand from the previous day, when I got back, he had drank some out of those Gatorade’s not much & only a few sips of water through Thursday. When I came home, I tried my best to get him to eat all these things, drink different things. Nothing was good enough. He wanted a Mt. Dew in Coleman’s Wolfpack cup, but never drank a sip. Then he told me he wanted it in his Daddy’s Rockingham Rockets glass. He will do absolutely anything to get out of eating & drinking. I just had to go in another room & cry because I got so irritated with him. After going through his list of demands, he still doesn’t eat or drink.

All this with Jack’s decline started a few weeks ago when he started worrying about his birthday. He’s a child that starts planning for his next birthday the day after his birthday. With Dravet, the kids can not handle excitement. A lot of the time seizures result during special events or gatherings. Lee & I both think some of Jack’s problems this go round are due to anxiety over his birthday. The anxiety causes him to be knotted up inside with the inability to eat which in turn has caused him to be lethargic amongst other things. All he thinks about when he’s awake is his birthday, going to Chuck E Cheese, his cake, & what gifts he’s going to be receiving. Jack tells everyone what they can get him. I’m not saying this is the whole issue, but it’s definitely contributing to it. When I returned home from our beach trip, Jack was listless, down, even like that for the two days I was gone, but as the evening progressed, he perked up, played his guitar, played music. It was like he was depressed that I was gone. I am his BFF. I never wanted to be my child’s BFF. I wanted them to be able to experience a best friend on their own & keep the friendship/mother/child relationship separate, at least while they were young. Then as they got older, I would welcome a best friend relationship. As you can tell, having a physically & mentally ill child that relies solely on me is very difficult. Every single day it is something. Whether he’s feeling good, drinking lots, eating lots, I’m having to run around town buying food or gift cards for him. If he’s feeling bad, I run around town trying to find something for him to eat or drink. It’s completely crazy the lengths Lee & I go to accommodate Jack.

Another extreme we went through was just yesterday. As I’ve mentioned, Jack is getting back into bad shape again with not eating or drinking. Partly because of Dravet in & of itself, also because he won’t take his pooping medication like he’s supposed to. When a person gets dehydrated, their bowels get dry-up. Dehydration also causes fatigue, vomiting, low blood pressure, all of which Jack has exhibited. Back when Jack was last hospitalized at UNC, a local friend told me about an in-home hydration service. The service is provided by an RN. She comes to your home & offers hydration and/or different cocktails like vitamins to help perk people up & avoid a hospital situation. Of course this is not covered by insurance, but it beats the alternative. I talked with her Thursday & she came out on Sunday afternoon. Jack was very receptive to her, she was so wonderful with him. She gave Jack two bags of fluid & some vitamins. After the infusion, he requested some soup & drank it all, even drank two cups of drinks. A huge win! I purchased from Amazon (thank goodness for the convenience of Amazon) calorie boosters that don’t change the flavor of food or drink that gives him an additional 330 calories from one small cup. Some of you enjoy my blogs, some think that I shouldn’t disclose this information, but I am grateful for our story being shared. Without me sharing Jack’s story, I never would of known about the in-home hydration therapy. If you’d like more info on this service for yourself or a loved one, here’s the info: https://hydreight.com/bp-charlotte/

On a lighter note, Jack’s new guitar has been replaced. In case you didn’t know, we lost Jack’s old guitar & we had to buy another one (another reason to be thankful for Amazon). I don’t know who was happier to get the guitar, Lee or Jack!

The goal is to try to get Jack on a biweekly hydration schedule to help curtail a hospital stay. We surely don’t want to have to go that route again & he is adamant about not going to the doctor. I blog in weird places, right now, I am sequestered inside Aldi after doing my Berry Patch shopping because it is raining so hard. And of course there’s a strange man that won’t stop staring at me, he’s giving me the creeps. Over the last three days, I have seen enough rain (and creeps)! I’m also starving, might start eating the beef jerky I bought inside the store! I wish Jack had a little of my hunger pangs & I had some of his lack of desire for eating. Life is never an equal balance for us, although researchers say it’s important to have balance in all areas. I have an over abundant surplus of stalkers, hunger, weight, & more distress than most people. On the other hand, I have not enough sleep, time, or sanity. And I’m a Libra, our sign is a balance scale! Plus, I slightly hit Lee with my car today (he is okay). I did tear into the jerky’s, I bought four varieties. Three will land in Lee’s truck (I give him everything I don’t like), the clear winner is actually the pig jerk. It’s softer & more flavorful.

Any who, y’all keep praying for Jack to bounce back without hospital intervention. 💜💜💜

A trip to the beach

Y’all I’m at the beach for more than a day! Well, it’s only two nights but I’ll take it! I’m away for from home without Jack for the first time since 2018, unreal. This was a reluctant beach trip on my part because of Jack. I don’t like leaving him & upsetting his routine in the slightest, but when you have more than one child, it’s hard to not do that sometimes. Coleman doesn’t care a hill-of-beans whether we go anywhere together, & if I’m honest, Ava doesn’t either-she’s a teen & probably hates her parents right now lol. How I would love to have Jack here with us if his circumstances were different. He would love the ocean, picking up shells, the fireworks people are STILL shooting off, the rides. Unfortunately, it’s hard work taking him anywhere & he physically can’t handle the stimulation. Coming to the beach is a definite treat, I love hot weather, the sun, the fun, but it’s also something I don’t enjoy because it involves lying to Jack about my whereabouts & possibly disrupting his routine & the people that help me out to make this trip possible. On this trip, I brought Ava & two of her friends. This was much needed for Ava more than anyone, I’m fine without ever going anywhere. What I wouldn’t love for Jack to be divinely healed so he to could share in the fun things of life. We’ve enjoyed our first day here. We ate of course, bout had to show a little gal at the hostesses stand of the restaurant what manners were, went to Broadway at the Beach & rode the wild & crazy speedboat. Ava didn’t want to originally ride it, but was glad she did-so much fun. The boat captain drove like me so she was used to it! When the Berry Patch does whatever it does at mine & Lee’s retirement, I’m heading there to get me a job as a captain, wonder if they allow knee driving? A DJ came around with his music & microphone playing Staying Alive while we were waiting in line for the boat ride & just because I wasn’t doing the John Travolta, that man called me out in front of everyone. Out of 200 people, I’m the one that gets called out.

We tried to go to Krispy Kreme & foolishly, they close at 10. Now ain’t that ridiculous? Why at Myrtle Beach would they close so early? Probably couldn’t find any help, oh well, that’s another topic for another time. Now we are sitting on the balcony of our hotel listening to the waves crash at 11:30pm & watching fireworks. It’s nice watching the fireworks considering I didn’t get to see a one of the ones we sponsored for the Fourth of July! I broke the news to Jack about me not coming home as late as possible Tuesday evening telling him Ava wasn’t feeling well & the doctor that is going to be doing her surgery in a few weeks needed to do some testing (she’s having her wisdom teeth extracted soon). I hate lying, I certainly hope that doesn’t come back on me. Jack was sympathetic, but said he didn’t like it. Mama stayed behind to help with Jack overnight & into the morning. Lee gets up very early & has a hard time understandably staying awake while waiting on Jack to go to bed which can get pretty late sometimes & sometimes he doesn’t go to bed at all! I am very thankful & grateful for Lee, Mama, & Sherry (Jack’s main caregiver) who have made this trip possible.

Our plans for our only full day here on Wednesday are to lay out (such a southern term), go parasailing, find oceanfront dining if possible for supper, & trying to get a Hot Now Krispy Kreme doughnut. Note: I don’t even eat them, just trying to give them the full beach experience. All people love KK doughnuts except me. I was telling Mama late one night about how hungry I was, she said “well, I normal person would eat a bowl of cereal”. I asked why I wasn’t normal, I hate cereal, too. Give me a raw turnip with salt or a cucumber at midnight & I’m satisfied! It’s so peaceful sitting on the balcony listening to the ocean, but melancholy at the same time knowing half your heart is back in Ellerbe & being lied to. Also, Teddy went to training school today so he won’t be home when we get back, I’m super bummed but he needs some schooling! I bet he thinks we’ve abandoned him.

Many of you have asked how Jack is doing & the news isn’t great. He’s hanging in there but totally out of the popcorn phase. I knew it would come but I was sure hoping it wouldn’t. The eating he was doing has come to a near halt. He once again got backed up because of the lack of food intake, liquid intake, & not willing to take his meds like he’s supposed to. After many attempts to make him poo, he finally did but it only stimulated his appetite a little. These cycles are a commonality with Dravet. I’m just hoping he doesn’t get in the same shape he did before his hospital stay a while back. I’m praying his appetite will become stimulated again. It’s all or nothing for Jack. I’ve got some tools in my back pocket I can use & will at the end of the week if things aren’t looking better with his eating. The ups & downs of this syndrome change like the wind. Jack had a virtual appointment with his new doctor as well as labs & a chest X-ray last week. All was great with those, good news! I was actually very concerned that his hemoglobin was dropping again but it hadn’t. I was also beginning to wonder if I was going to be able to make it on our beach trip, Jack turned very irritable over the last few days, but he has since normalized.

Y’all join me in prayer that Jack’s appetite will increase if you will. Also pray for us as we parasail…I’m skeered! I’m actually more nervous about being in the ocean water when we come down because I do not like being in water I can’t see through. It feels weird not being at home as I have now just crawled in the bed of our hotel room. There is no shutting down of Jack’s room, unloading piles of Power Ranger toys off his bed, I won’t have a baby monitor to listen out for, or peach cobblers to make. It also feels dirty, like just plum dirty. I don’t like others peoples stuff. Y’all know my experience with the one bedbug, I’m always worried about getting another one or 500 because I’m pretty sure insurance won’t cover me burning down the house in case we get an infestation! We also get breakfast here complimentary which I haven’t eaten breakfast in years. And I can’t believe I forgot my floss, I feel even dirtier now! Night y’all or good morning depending on when you read this. 👙🐬🐠☀️🌊