Female Head of Household (FHOH)

I sit in Jack’s room on Thursday afternoon February 25. The sun is out which has been somewhat of a rarity in the southeast & perhaps the United States. It is also warm outside. I would love to be outside today, the weather forecast for the next week is nothing but rain. Jack hasn’t been well. In my last post, I touched on the fact that Jack was in a state of seizures. The good news is Jack isn’t feeling well, the bad news is Jack isn’t feeling well. I think he might have a little bug (which I hope that’s the reason) & the bug may of generated the seizures & it is not from Dravet in & of itself (or could be a bout of acid reflux). He’s had several bouts of loose bm’s & that alone is not anything he’s dealt with since he was a young boy in elementary school, Jack has also thrown up several times today. If he would go to the doctor, the list of maybes could be easily cleared up. It’s so sad knowing there is help out there for him but he won’t seek it.

When Jack is sick, he is extremely needy-much like most of the male species & he only wants me. Again, fitting for the male species, they typically only want the female head of the household (FHOH). The FHOH title has few benefits. In fact, I can only think of one, caring for your loved one & that’s it. Jack is driving me nuts during this sickness. It is hard being the only one that can comfort him. If he’s not in a full-on sleep, I have to be in his room. More precisely, sitting right beside him. It’s been a full 24 hours since Jack has had any of his medications, so nothing to offer support for his behavior has been taken. He tried to take meds earlier this afternoon, but threw them up. He didn’t take them last night because he slept from 9:30pm-12:30pm the next day. From what I can tell, the seizures are somewhat improved. Jack has been wanting me to lie beside him in the bed & I did until I couldn’t take it any more. He was being aggressive to me by squeezing my legs as hard as he could with his, squeezing my fingers, acting like he was sawing my arms off. It is beyond frustrating. I want to take care of him & help comfort him & he wants me to, but he doesn’t know how to accept the comfort I think. Then I have to make-up a lie in order to get up from his bed & sit in the recliner in his room. Today it is, “I need to sit in your recliner so I don’t catch what you’ve got & that I’ll be able to take care of you”. I am held hostage during his awake hours. I’ve had enough of NickJr! Paddington Bear, Bubble Guppies, all the infomercials of which Jack wants it all. Yes, they have infomercials on kids cartoon networks. Jack has already started on his Christmas list for this year. What makes it even harder, he won’t use his voice. He points & air spells things for me to figure out. Talk about frustrating. I’ve got taxes that I need to get busy on. Farmers, for some silly reason have to have their taxes ready by March 15 & I am way behind. Usually I’ve got it all tallied up, not this year.

I still have yet to hear from Jack’s neurologist. Email them they say, it’s a quicker way to get a response. I’d hate to see it if I called. Maybe writing a letter & mailing it would produce a faster turn around time! I’ve always tried to be sympathetic to medical personnel. We’ve been in emergencies with Jack ourselves so we know what takes priority, but this is ridiculous. He has drifted off to sleep, I’m afraid to move out of the recliner since it is a little noisy when I get up, so I’m hostage once again & he has the remote! The progression of Dravet seems to get worse every year. I was surely hoping that Jack’s young adult years would be smoother sailing but it seems like that isn’t going to be the case. His health needs are becoming more frequent, his neediness for me alone is something he is truly dependent on & obsessed with. It’s hard for me to believe anyone would be obsessed with me lol. It’s usually just weird men that are obsessed with the unusual earrings I wear. As badly as Jack wants me & only me whether he’s sick or not, he still wants a caregiver with him at home as well. He gets upset if no one comes to the house to watch him. This is strange to me. He stays calling me all day & asks me to leave, but wants me home at the same time. All very confusing & taxing to my mind. If Jack didn’t have the aggression, our lives would be so much better & more relaxed. I simply don’t understand why he has to have that trait. Because of the aggression, we often feel like we need at least two people in our home depending on what type of mood Jack is in. One to call for help & the other to hold him down. I have prayed for the aggression to be released from his body more than anything I’ve ever prayed for in my life. I figured I’d do a little blog while I sat in the recliner since I didn’t have anything else to do. To all of you FHOH’s, my hats off to you!

Riding Out the Storm

It’s been a while since I’ve blogged. Since my last blog, Jack was on a binge of uncontrollable eating, not sleeping, wanting anyone he knew to buy this & that for him, placing ridiculous food take-out orders without consulting with Lee or myself first, talking 200mph, & anything & everything he was doing was all in excess. All classic bipolar behavior symptoms. This story is nothing new to those of you that follow Jack’s journey. Finally, there was a halt & all the ridiculousness calmed down significantly just recently, but with the calmness, another type of storm brews. As I have talked about numerous times in the past, there is no happy medium with Jack. It’s either he is high as a kite or down really low or sick or plagued with seizures. So after his high period, we have yet again entered the low phase/seizure phase. The low phases are characterized by lack of eating, sleeping way too much, lethargic even after sleeping 16 hours, not calling anyone. When Jack doesn’t call people, it is very concerning for us. He goes from calling me 20 times a day to now nothing at all. As much as Lee & I welcome a more relaxed Jack after his high, we certainly don’t want this. As worrisome, annoying, & downright scary behaviors only a few years ago & into last year with Jack, neither one of us want this. Only a few years ago Jack was expecting a person he was being catfished by to move in with us & sleep in his bedroom. Thankfully, Jack has not been interacting with anyone online in quite sometime. That has been a major blessing for us. He went from forcing us to buy gift cards that he claimed were for himself but actually for the catfisher multiple times a week to now asking for a card for himself occasionally so he can purchase a Blue’s Clue dvd or some other novelty. That transformation has been amazing to watch & we are forever grateful for the change every single day. I was sick each & everyday that Jack awakened wondering what kind of trouble he would get in. There was the time he called a taxi to go to Dollar General, tricked his caregiver & actually got into the taxi & started down the road. The time some of the evil people he was in chat rooms with kept calling 911 on Jack & when I got home, our house was surrounded by two cop cars & there was nothing wrong-talk about a heart stopping moment. By the way, Lee was home with Jack & was totally unaware of the police outside & their lights on! Or the time Jack came out of his room saying vile, disgusting things to me that he had never heard before nor knew the meaning of all because some of the people he was in a chat room with told him to do that to me. We have been through the terrible teenage years with a teenager that never leaves the house! It is absolutely unreal to think of the evil Jack has gotten into without leaving our abode.

The lethargic stage Jack is going through can also indicate seizures. Jack’s entire infancy, childhood & preteen years were nothing but seizures. Once he was able to get on the only drug made for Dravet (at that time), the seizures lessened, more importantly, the drug was able to stop the prolonged seizures that landed us in the ER many, many times. That drug has been a blessing to us. Jack began going through puberty at the young age of 8, which is when we saw a huge increase in the violent behaviors. The tendencies are still there for the behaviors, but I think because he has gone through puberty, they are of a lesser degree, but still as powerful. We are fully aware & mindful that the threat of an increase in the violence can come back at any time, but we are hopeful that they won’t & pray daily that those urges will forever be released from his body. Getting back to the lethargic stage, it is hard to differentiate between tiredness & seizures sometimes. It can be both or one or the other. There are times that Jack’s seizures aren’t so clear cut & I am afraid that is what is going on now. Having a seizure or seizures makes him tired as you can imagine. Just after Christmas, Jack began having a lot more seizures & was being violent afterwards which unfortunately is one of the sad side effects for some that have epilepsy. We increased some of his medications & he settled down seizure-wise for a minute. Now thanks to the “honeymoon phase”, he is starting to have more of the little, odd seizures now. Seizures are tricky. The smallest of movements that can appear normal to most people, are detected by excellently trained Mama’s, as in Jack’s case. Seizures are sneaky. I know there can be trouble on the horizon when Jack starts sleeping too much. Little things like trembling of the head for just a split second or a fluttering of the eyelids let me know something is up & yet another storm is brewing. He floats between a conscious/semi-conscious state when he’s like this.

I’ve suspected seizures for a few days now. Last night it was confirmed with longer moments of what I described above along with staring off & a curve of Jack’s lip that’s not normally there. I emailed his neurologist immediately, now we wait to see what the next plan is. Could be days before I hear back from him. In the meanwhile, I gave a bolus (extra meds) of one of his seizure medication. It is so sad to me every time we have to increase one of Jack’s meds which has been frequently over the last year. For the longest time, Jack was on a steady dose of meds & it worked as good as it could-meaning he didn’t have the types of seizures I’ve just described. The amount of medications he takes breaks my heart. Pill after pill after pill & swallows them all at once. The bad part about it is, Jack can’t function without them. The amount of seizures he has with the meds is ridiculous, so without, I can’t even imagine. Y’all be praying that the seizures will cease & Jack will have a rejuvenated spirit. Dravet is an ever-changing disorder. What’s the same one day, can be turned completely & utterly upside down the very next day. I can kiss Jack goodnight & end up in the ER two hours later. The evolving of Dravet is never ending. Whether it’s seizures, behaviors, GI issues, bone issues, & so much more, the change of patterns hit so quickly that you never see them coming. Some parents of Dravet kids say the ages of 6 months-2 years old were the hardest seizure-wise or from puberty-the end of puberty. So far, all ages have been the worst for Jack. We expected to see a calming in seizure activity as he entered the young adult stage, that hasn’t been the case so far.

I’ve got a neat little story to share with y’all that I know God had a hand in. Sunday afternoon, there was a homeless man with a large cart walking through Ellerbe. He hung near The Berry Patch but never came to our place which is surprising to me since it is the Bermuda Triangle of Dryland. That evening, Jack & I wanted to ride to Dairy Queen (yes, we go to other ice cream places lol). Jack brought his wallet. I questioned him to death wondering why he would bring it, but he never gave me an answer. He knew I would pay for his food & we weren’t making any more stops-for one, he was in his bedroom shoes. It was dark when we left, at the exit ramp at The Berry Patch, the man had setup a tent right there on the side of the road, more like the shoulder of the road. It was a very dangerous spot actually I thought to myself. I planned on getting him a hot meal from Dairy Queen & drop it off to him after we got our food, it was a very cold night for us Carolina people, around 30 degrees. When I started to place our order, the employee said their credit card machine was down. Well, I never have cash-ever! Guess who did, Jack! How unusual it was that he would bring his wallet with him knowing that I was paying. Jack said I could use his money, but was very hesitant about me doing so. He didn’t seem to understand clearly why I needed the money & that I would pay him back as soon as we got home. He is very tight! I then decided it best not to get the man anything to eat because Jack was already getting annoyed with the fact that I was having to use his money & that may of rocked the boat. After we got our snacks, Jack ate a little, his appetite isn’t a tenth of what it was, we headed back home. I looked for the man & his tent when we got back to the area, he was gone, the tent was gone. Not that a few dollars would of made a difference to me if I would of used my money or Jack’s, but I have to wonder if this was God’s plan. Maybe He knew I was going to try to help this man & that’s why DQ’s credit card machine was down & maybe that’s why Jack brought his cash. Maybe this man would of been up to something strange if I would of stopped. It definitely was a moment that made me think about how powerful the presence of God is.

As I type this blog, I am in bed where I usually am during blogging sessions, I’ve wound down from the day as much as I can, I lie in bed worried about Jack. I am down. Worrying about his constant seizure state, then what if the seizures incite violence, worrying about his overall well-being brings me to a low. Typing the last sentence of the above paragraph helps comfort me though. God is never far away. We’ve seen many changes in Jack through prayer & I am going to hold on to that belief that this phase will be healed quickly. It’s impossible for me to be anything but on edge all the time. It is truly hard to be the person I know that God expects me to be with all that goes on with Jack, whether that is a friend, Mother, wife, daughter, employer-it is dang hard. I make mistakes, we all do. I don’t blame the mistakes on Jack circumstances but do think the stress of the situation attributes to a lot of the things I feel bad about at the end of the day. The worrying is pointless, why I don’t know this by now I’ll never know. I’m trying hard to remain like Joseph, being faithful that God is going to pull us through this situation. Thank you for reading & thank you for your prayers.

My heart yearns to see this precious smile on Jack’s face again. This was several years ago at Disney when we took Lee’s aunt Vickie for her first trip along with Mama (her second & last trip), Coleman (who is there now on business-that’s what they call it nowadays???), Ava, Lee & myself. We love Disney, but it’s too hard to take Jack & too much on him. Only a few years ago we went & went all day & into the evening, riding most rides with him. It is one of my most favorite pictures of Jack. Now the trip didn’t end up so well. When we tried to wake Jack to head back home on the last day, he erupted like a volcano & fought Lee, but this will be a forever favorite smile of mine.

Prepping for Hibernation & a few other things

In elementary school, most of learned about hibernation. When we think of hibernation, we often think of bears. A bear packs away the food prior to winter in order to store calories to make it through the cold winter days & nights. When I learned about hibernation in school, I did not realize I would later live with a bear that practices hibernation at various times all through the year! Jack has eaten more of my home cooking over the last two weeks than he has in 3 years! I’ve made three tremendous pots of chicken & dumplings in 5 days. All we hear Jack say is “dumplings, dumplings, dumplings”! He has literally turned into Jethro Bodine! I only wish we had the clout & house the Clampetts had & of course that cement pond, & who could forget the wooden stick Granny threatened to beat Jethro with all the time-that might come in handy when dealing with Jack & Lee from time to time. Wouldn’t mind having Mr. Drysdell as a neighbor either! As Jack began eating his way through our house, I thought he was eating to become stronger, I only wasn’t sure how the strength would come into play. He really was frail prior to his increased appetite, when you sustain on only a cup of applesauce a day, what can you expect? I thought to myself many times as Jack’s eating increased, that he was eating for an attack. Turns out I was right.

Jack has a hard time, finding middle ground is not something his life was designed to do. He’s either plagued by the seizure monster, not feeling well, or into something that causes trouble. These are three circumstances that I have had to accept being his Mama & that wasn’t an easy feat. I am a fixer. I want to help people the best way I know how & fix their problems. This holds true for not only our kids, but for everyone. If there is something I can do for someone, I’ll do it if it will make their life simpler. I can not fix Jack. I’ve tried every homeopathic remedy along with every medication there is. I could absolutely kick myself for falling behind on what was a near disaster this past weekend. In fact, I have made a note to myself as a reminder that when Jack’s appetite increases so drastically, that I need to make medication changes to compensate for the increased caloric intake. When I tell y’all he has eat, he has EAT! Since Christmas, he has woken up everyday eating chips of some kind. He is currently on a Chester’s Cheese popcorn kick, eating three large bags a day plus plain Lay’s chips. They must be only Lay’s, his extravagant self gets that from me, I’m a Lay’s girl. I bet the inventory takers at the Ellerbe Food King, Dollar General & Family Dollar wonder why the sudden increase in Chester’s Cheese! He wouldn’t touch cheese puffs in the past because they turned his fingers orange, now he can’t get enough & three bags a day aren’t enough. There is cheese dust all over our house. I find it on various things like my dresser, the soap dispensers, my clothes-I am his napkin! He is also on a Fiji water kick, the expensive square shaped bottle. There is some evidence that Fiji water can help some that suffer Dravet syndrome & other epileptic type syndromes, something about the silica in the water drawing out aluminum in the brain. He ironically & suddenly got on a Fiji water high the day after his seizure/aggression troubles, so there’s that expense now. This is his trashcan in his room in less than three hours, and also a picture of him laid up on the bed eating them without a care in the world other than when the next bag coming.

Last Sunday, I put out an urgent prayer request for Jack on Facebook. He had three grand mal seizures & tons of little ones in less than 10 hours on that day. It’s been years since Jack has experienced violent & multiple seizures like that. The first one, he went to sleep right after for about an hour which is the ideal situation for him for recovery after a seizure. Some people experience aggression after these types of seizures which is what happened following the last two. Right after the second grand mal, Jack walked into the kitchen & collapsed. After grand mal seizures, Jack is disoriented, weak, & loses his ability to speak for about an hour. If there is ever a time for him to be violent, it is after a grand mal, but it is still extremely scary. After he collapsed, Jack started kicking the floor like he was trying to knock a hole in it. It was Lee, Ava & myself home with Jack during that time. He then started grabbing everything that was in site, knocking over barstools, kicking the trashcan, throwing the rug, etc. As we called for backup in case he got even more out of hand, we let him has his fit without intervening because that could possibly mean we or he would get injured. As backup made it to the house, we had a porch full of people waiting to help restrain Jack if needed. He finally came back to himself & immediately started crying. Jack hasn’t cried in years. This was heartbreaking because I knew then he didn’t realize what he was doing in that moment but as he was coming out of it, there was some recollection about what he had done. About four hours later, he then had yet another seizure. This one, I stayed in his room with him during the whole event. He was on his bed, wanted to get up right after the seizure occurred but I was able to get him back down, but sure enough, he kept raising his fist like he was going to hit me. I talked comforting & quietly to him & he would put it down, only to lift it again a few seconds later. This went on for 30 minutes. At that moment, I was as spent as Jack. My heart was breaking because I didn’t know what the night had in store for us. I called Lee’s sister to come spend the night with us in case Jack had to go via ambulance to the ER to break the seizures and/or violence so she could stay home with Ava. After calling the peds neurologist on call at UNC, we decided it best to give extra meds to help get us through the night & avoid a trip to the hospital during this pandemic. I prepped myself to be ready for a hospital visit, laid out clothes to slap on quickly, shoes out, medication list out, dishes put up & clothes put away. With Covid restrictions & my nerves tore slam up from the threat of violence on Jack’s end, I told Lee he would have to be the one to go in with Jack through the ER. I can’t face that aggression alone. I handle all the medical stuff, but I absolutely didn’t want to have to go through that, it scares me beyond belief.

I ain’t gonna lie, our night was tough! Jack was awake at 2:30am wanting to get in bed with us.I always deny him sleeping with us, it’s worse than sleeping with a bed of wild hogs, but I couldn’t this time because of the predicament he was in earlier. So it was Lee, me in the middle & Jack in our king sized bed. Of course being a man, Lee slept, I did not. Jack was on me like white on rice. He tossed & turned, kicked, thrashed, sat up, talked, you name it, he did it. Finally not able to take it any more, I kicked Lee & myself out & gave him the bed to himself. I slept about an hour & a 1/2 that night. Scared to be at home with Jack alone the following day, Lee stayed home most of the day with us & his caregiver was here as well. Jack made it an entire year without a violent outburst, his last one was Christmas 2019 right after a seizure. There’s that to be grateful for. None of what we do as parents & caregivers to Jack would be possible without the help & support of family & friends. Mama came to get Ava, but little did I know she was having an active angina attack on her way over to our house. I felt so horrible! Lee’s Aunt Vicki & Uncle Chuck came to help support us, & Jake VunCannon came for backup. I can deal with almost anything I have learned, but the one thing I can not deal with is the violence from Jack because I have learned first hand just how threatening & dangerous he is & can be. I get the phone book out & start calling people when I think he’s going to be violent if the opportunity arises for calls.

I did increase one of Jack’s main Dravet medications & that is always an adjustment to his body & to us. I say to us because the transition on his body affects the way he acts, moves, behaves. This week has been anything but easy. He fidgets constantly, moving from one end of the couch to the other, one room to the other, putting his feet ON not IN your face, doing annoying things, still eating everything. He’s been calling in orders at Number One Diner, La Cabana, demanding for us to take him to the Mexican Hardee’s (that’s La Cabana for the non-locals). Jack’s OCD is at an all time high, he is loosing everything but yet goes nowhere, he’s wanting me to buy him everything under the sun, & he’s been waking up in the middle of the night every single night. We’ve had to put up the coffee pot (Jack was making coffee at all hours of the day/night), my Alexa is hidden (not really sure where, now), the neck massager gone because he wouldn’t leave alone, & so much more. We really have had a stress-ladened week. The good things are he is eating & pooping, the bad thing is everything else! I have to leave my own house just to get some peace & even then it’s not true peace. My time spent away is texting Lee asking about Jack, or Jack calling me, or worrying about whether or not he’ll have a seizure & what will Lee do for backup. It really is a tough situation. We absolutely 1000% could not do it without faith, prayer, & the support of family & friends. Thank you to all that stopped what you were doing & prayed for Jack Sunday. No one was injured & Jack didn’t have to go to the hospital. Please pray with me & Lee that Jack will never have another violent outburst again. I know & believe that God can heal Jack from that affliction. Love & many thanks to you all. πŸ’œπŸ’œπŸ’œπŸ™πŸ™πŸ™

P.S. Notice all the takeout boxes of food on the counter? This was all ordered from Number One Diner, plus, I was cooking a huge pot of dumplings .

Granted Christmas Wishes

Most of you know my complete and utter disdain for the Elf on the Shelf. It has been an approximate 15 year problem. However, this season with the elf was not bad at all. Jack felt poorly for most of the elf’s presence. Now that Christmas and the elf have returned to the boxed hell they came from, we are hoping that Jack can get back to his normal. Christmas as well as all other celebrations really put Jack on edge. He can get irritable, aggressive, rowdy, refuses to eat, drink, and/or lack of sleep. This has to do directly with Dravet Syndrome. Anything out of routine or his ordinary, changes not only his world, but ours as well. We were concerned with how Jack would do during Christmas l. 2019’s Christmas brought a seizure on Christmas Day evening & he became violent afterwards. This Christmas (2020) was a huge difference in the celebration of last year. We actually had to beg Jack to get out of bed, he didn’t want to wake up & didn’t until after 9am. Jack’s health has changed drastically since last year. He is more frail than ever. He fell several times Christmas Day interacting & doing things he normally doesn’t do all the while unaware of all the Santa gifts laying around the house. It really is sad to see the changes that have taken place with Jack over the last few months, but he always seems recover but the stretches are becoming longer.

I’ve blogged before about Santa Claus being the smartest, hardest working transgender human alive. Men just get all the credit & they don’t be doing nothing (in most cases)-excuse the slang, this is how me & my Mama actually talk! Why is this fictional character a male? In old movies & books, Santa is portrayed as a very hard working man. One that would put the Christmas tree up when he came, set all the toys up, play with the toys for a minute, & then off to the next house. Not saying men aren’t hard working, but whoever came up with the idea that Santa was a male was not right in the head. There are Daddy’s all over this world & I will go ahead & make the statement & say most Daddy’s never know what their children will be receiving from Santa until Christmas Day when the smartest, hardest working transgender Santa lays the gifts out. Fictional Santa never would roll his eyes about getting Christmas boxes down from the attic or sighing over stringing the lights! Our Christmas this past year was a little different from others. It was very calm & relaxed, a much welcomed experience. Holidays put such a stress on Jack both mentally & physically all due to Dravet, it’s one of the characteristics of the syndrome. Because of the anticipation Jack experiences with the arrival of Santa, he stopped eating & drinking. The times he did eat or drink, I had to feed him & hold the cup for him. How he survived that long period of time without proper nutrition amazes me. The willpower & resilience Jack has is something to be in awe of. Jack wasn’t wild, aggressive, nor sassy during Christmas. He checked out his stash of gifts, hung out with us during breakfast, played with the Power Ranger rare morpher Santa brought most of the day & soon retreated back to his room. It really was a pleasant day.

Here are a few highlights of what I think the best gifts the kids got. Coleman was gifted with home stuff. For those that don’t know, Coleman now lives around Winston Salem & has a job as a supervisor at a plant. You know you’re getting old when Santa brings you pots, pans, & kitchen towels (and I realize Santa visited a 20 year old-we do it for Jack). I thought I was doing good & got him a fancy charging bowl for his iPhone & a Roomba-no such luck. The boy already had them. Coleman is so hard to buy for. He’s like me, if he needs something, he buys it. Jack enjoyed all of his gifts with his shoes being one of his favorites. They are shoes made for special needs people that can’t tie or slip boots on. They zip all the way around & look like high top, lace up sneakers, they were a special request of his. Jodie gifted him Michael Buble cologne. Lawd, he has sprayed the world with that stuff. Lee & I are both very sensitive to smells, I rarely wear perfume & hate scented lotions-love them on other people just not myself. I am hating Michael Bubles guts right now. Upon entrance of our home, there is an overwhelming scent of cologne. Last night after pleading with Jack to stop spraying it, Jack went into mine & Lee’s bedroom after Lee was asleep & sprayed our bed down. I didn’t know it until I went to go to bed myself. I didn’t sleep all night because of the scent. I had to rewash the sheets I had just washed along with the comforter. We are going to pour it out tonight & put water in it!

Mama got Jack an Indian flute which was one of his requests. When the order came in, she got not one, not two, not three, but four flutes-this is starting to sound like an infomercial! She only ordered one & it must be a standard practice to send so many because the first one broke within hours, the second one broke the next day & Lee has glued it multiple times already. The third one will be given any day now I’m pretty sure. We love our 2am concerts by our new flautist!

The most love/hated gift anyone received outside of the cologne, was Ava’s big gift, a puppy! Now neither Lee nor myself are dog lovers. We just don’t have the time & I was chased by a pack of dobermans when I was young so I never cared for them. Ava has wanted a dog forever, but with our lifestyle with Jack & work, I never even considered entertaining the idea, plus, I certainly didn’t want to be cleaning up after something else. But with school being virtual this year & last year & Lee & I at work a large portion of the day, Ava needed something to help keep her company. I foolishly thought a dog would be perfect. She was gifted with a labradoodle. It would be fine if Jack acted like he did during Christmas, but that has changed drastically. As suspected after the holidays, Jack’s appetite kicked in & thirst came back. He has eaten a tremendous (think church homecoming-sized pot) of dumplings I made since Sunday night & today is Tuesday. They are gone, no one else dared to eat any. For the first few days, Jack didn’t care about the dog, even wanted Santa to come get it. Now that Jack’s energy has been restored, he is wild & the dog is wild, they are feeding off each other. Ava is getting aggravated & not able to enjoy the dog because Jack wants him in his room all the time & won’t allow us to disciple the dog when he does something wrong. I had a not so brilliant Santa moment! Jack is running through the house with the dog & running is not anything Jack needs to be doing.

The next most loved/hated Christmas gift is the one to myself. Seeing everyone make posts of their cute coffee bars, I thought I’d jump on the trend as well & set one up. I don’t like coffee but Lee & Ava do. Well, Jack has taken the coffee bar over as well. He makes it at 11pm, wants to drink it 24/7. I was hoping it would of turned into a blessing in helping to aid his problem with constipation, but it has not. I left the tags on the table…thank goodness, it’s going back ASAP!

Now that the holidays are over, Jack’s eating has improved greatly, his energy levels have replenished, & he is back being wild & out of sorts, & the worse part is, he has started back having more seizures. Once we made it through the last bout of him being in a constant all day long seizure with medication increases, he went nearly two months without any at all. I noticed a few days ago that the small seizures have slowly crept back & as I work on finishing this blog, he is in recovery from having a grand mal seizure. One more calamity I omitted, when it rains at the Berry household, it literally rains! Ava’s room is upstairs along with a 1/2 bath. Directly underneath the 1/2 bath is mine & Lee’s bedroom. Last week was such a crazy week for us at the Berry Patch trying to get everyone their vittles needed for their New Year’s meals, so Lee & I were both stressed, but a good stress. Lee calls me in a frantic tone just two days before New Year’s saying that Ava had flooded the upstairs bathroom & water was coming out from the ceiling fan in our downstairs bedroom onto our bed. I knew this had to be a sick joke-I was wrong! I get home to every towel we own on the deck wringing wet & a bucket to catch water in on our bed. There’s a very good reason as to why you should put your clothes up after folding them, they might get flooded! All the clean clothes that I had washed, hung out to dry, & then folded were soaked! We really can’t make this stuff up, there are so many bizarre tales that I could include in this blog, but I know you’ve probably lost interest by now. Any way, Christmas 2020 was great, 2021 is not going too well & we even ate the hog jowls, blackeye peas, pork loin, & collards! Just think what the year would be without the good luck meal! πŸ·πŸ½πŸ€‘βœοΈπŸ™πŸŽ…πŸ»πŸ™‡πŸΌβ€β™€οΈπŸΆπŸΎβ˜˜οΈπŸ’¦πŸ₯¬πŸ’£πŸ§¨πŸ’ŠπŸš½πŸŽπŸ§ΈπŸ’œπŸ—―β€ΌοΈπŸ†˜πŸ†˜πŸ†˜πŸΊβ˜•οΈπŸ—πŸ“πŸ‘ŽπŸ»πŸ‘πŸ’©πŸ˜©πŸ€¬πŸ€¬πŸ€¬πŸ€ͺ

Christmas Miracles

Christmas is almost here which brings forth a wonderful Christmas miracle for myself…the Elf on the Shelf gets to return to the attic! This hasn’t been the worst season with that confounded elf who shares the same name as an annoying purple dinosaur named “Barney”. It’s after midnight as I compose this blog, now that I typed about Barney the dinosaur, I’ll be singing that song the rest of the night & into morning I’m sure. My last blog about Jack’s latest health condition wasn’t the best, it has been one of more concerning times we’ve had with Jack since it was such a prolonged period. The lethargy, refusal to eat & drink, medication refusals, having his days & nights mixed up were very scary. I had reached out to his neurologist to come up with a game plan for labs but I didn’t think that would show anything. One of the conditions associated with Dravet that fits the symptom bill I just described are high ammonia levels, this can be measured with lab draws, which is not an easy task when you have someone that can be explosive & combative at the mere mention of a doctors appointment or going to the hospital. When Jack got into a similar situation back this summer, labs were all good, so my gut told me doing labs were not what was ailing Jack, I didn’t have any idea what was until about a week ago. Last Saturday night, Jack was his usual clingy-self when he’s not feeling great. I convinced him into riding around Ellerbe to look at Christmas lights, there was one caveat, I had to stop by Carroll’s Pantry for a scratch-off! Of course I agreed because he would be moving & that was something he hadn’t done in a while. Jack wasn’t into the lights at all, our outing was not any longer than 25 minutes. As soon as Jack got back inside the house, he vomited in my hands. Jack never vomits, he also used the bathroom three times that night which he never does either.

I’m so thankful he vomited that night! Things finally started clicking into place for me. My Grandma always said when people have hiccups it’s a form of indigestion. Well during the whole time of Jack’s mystery illness, he’s had the hiccups even with a sip of water. I am kicking myself constantly for not picking up on this sooner. The morning before he vomited, Lee fixed Jack a bowl of grits. Desperate to get calories in him, Lee added butter, heavy cream, & cheese to the grits. It was too much fat, that’s what made Jack vomit, the high fat aggravated his reflux even more. Back when Jack was on the ketogenic diet for treatment of his seizures, he had severe acid reflux because the diet was 90% fat. As he was weaned off the diet, he still had it, just not as severe. As he turned into a teen, he never had any further issues with it or so I thought. I wondered if acid reflux was causing Jack to feel as badly. Nearly every Dravet kid I’ve read about has reflux, most of them have a very high tolerance to pain & can’t tell Mama’s when something seems weird or painful. It’s up to the investigative mind of Mama to figure out most of the time. I started Jack on Nexium the next day & boom, we have a different child! I can not believe it took me so long to figure it out. Not once did Jack complain about his throat burning, belly hurting, esophagus hurting, some of the signs were there for me, but I couldn’t piece the puzzle together until he vomited. For now, Jack is doing much better eating-wise. Sleep is still another issue. A few weeks before Jack started to improve, he began waking up in the middle of night around 4am every morning, this has continued & he extremely annoying which anyone is when your sleep is interrupted. I’ve only been asleep a few hours by then, Lee being the early bird he is, rises at 5:30am every morning. It’s hard for him to get back to sleep once being disturbed at that time & me as well. It’s he’s hungry, needs a bandaid, can’t sleep, cold-all the while I’m laying in bed sweating like a whole hog (hormones & all). He’s got every blanket in the house piled on him, long sleeves & pants, & I only have on a tank nightgown with the fan going. The puddles of sweat are ridiculous! Then he starts wanting to get in the bed with us which is not anything I would wish on my worse enemy…maybe. As I write this blog, I have fixed fatback three different times for Jack. Thank goodness for an air fryer! He’s now going to be up all night thirsty, the cycle never ends!

I’ve been lacking in Christmas spirit this season. Largely due to Jack’s condition, I was actually worried he would end up in the hospital around Christmas. All I did was put up a tree. I had large hopes for my tree this season, I wanted it to be a piΓ¨ce de rΓ©sistance. I ordered some really pretty twinkling fairy lights for the tree before thanksgiving, they never came. They were lost or delayed in the abyss of a FedEx truck. Jack fell the night we got our tree & scraped his hand, he has yet to leave it alone which is one of the reasons why he’s been up in the middle of the night. Lee threw on plain clear lights which I’m not a fan of personally, now 1/2 of them have burnt out. I don’t even care & not even going to try to fix. Onto the next Christmas miracle, Jack received a very special gift from a family friend this week delivered straight from the North Pole! Now if this video doesn’t help you find the Christmas spirit, I don’t know what will. This was such a special surprise to Jack that he was thrilled to receive. Our friend knew the challenges we were having with Jack & his eating issues, so the box is full of food goodies & other Christmas treats that he has loved, especially the hat!

It’s such a challenge being the main caregiver to a special needs person. You are their everything while often times, you have to be the everything to everyone. You have to learn to build a life around the special needs person with the help of others. There are so many people that we depend on & helpers along the way. We truly appreciate the love gift Jack received. It blessed his day & ours, greatly.

Berry Christmas, friends! πŸ’œπŸ’œπŸ’œ

Update on Jack

There is no cute, witty title for this blog, only as update on Jack. As you are tucked away in your bed, body preparing for the next day, my day has just begun. Jack has been on a mixed up schedule as of late, similar to that of a newborn with his days & nights confused. He is sleeping a lot again, not eating enough to keep a bird alive, & not drinking much either. He’s also been very irritable as well, much of that stemming from the lack of adequate nutrients. Some days the most he eats is a cup of applesauce & jello. To say it has been a stressful few weeks is an understatement. His wants & demands are definitely a struggle, wanting me 24/7. What makes matters so bad, he refuses to go to the doctor & be checked. Life was so much easier when he was tiny & I could physically pick him up & load him in the car. Compliant he is not.

Jack went to sleep Monday evening around 7, he tossed & turned, slept rough for a while & finally got settled in for a restful slumber a few hours later. I didn’t try to wake him in hopes that he would sleep through the night, but I knew what happen & it did. For once the house was turned down by 12:30, all my tooth care (which I’m fanatical about) done, & I settled in in bed reading when I hear Jack puttering about a few minutes later. Which was actually fine with me. I prayed hard Monday evening. I prayed that Jack would turn around, that when he woke his thirst & hunger would be restored as well as his spirit. And that’s exactly what happened. Jack wanted to eat! He ate 1/2 a can of chicken & rice soup, a pack of Ramen noodles, & drank two little Cokes. Was I mad that I was boiling water at 12:45am, heck no, I was elated! Jack & I hung out as I fed him his meals & watched Friends. I’m so thankful God answered my prayers in real time. So often prayers are answered in God’s time, but He knew this was a necessary request. Jack drifted off to sleep close to 2am, I prayed that he would sleep soundly & awaken with a smile on his face & doesn’t sleep all morning & into the afternoon like he has been doing for about two months now. By the time Jack awakens every afternoon, it is way past time for me to leave the house for the day, but I have to stay til he is up to see what kind of mood we are going to have to deal with for the day. Medication refusals are something else we are having to deal with again. I get why he hates taking meds. He has to do it every single day, twice a day & it’s a lot. Jack has always been a fella that is all or nothing, so he takes all of his meds in one swallow-never understood how he can do that! So now instead of him taking his meds when approached, he uses different things as a mode of control. Like he’ll take them if I make him laugh, which he never does, he’ll take them if I make his arm better from where he fell which I obviously can’t-things that are unobtainable, undoable. It takes a lot of bartering, begging, pleading, praying to get him to take his medications & there are some days he flat out refuses. Everything we try to get him to do comes with a stipulation. A friend of ours brought Jack a bunch of fatback, she makes the absolute best there ever has been & Jack loves it. When I offered him some, he told me only if he had a squeeze-bottle Fiji water. I don’t know of any place in the county that sells it in a squeeze-bottle. Where I am going with this, he is controlling the situation by giving an unreasonable request that he knows can’t be fulfilled just to get out of eating & even if I could, he still wouldn’t eat it.

What I think is wrong with Jack this time, is he is depressed although I can’t be 100% certain. He is subject to depression even though he doesn’t know what it is. You all know the troubles we’ve had with Jack communicating with strangers online & Jack hasn’t had any interaction at all with anyone online in almost two months. He has been anticipating the arrival of Santa & the confounded Elf on the Shelf so badly that he had truly avoided his phone most of the time he is awake. I guess he figures he needs to stop cold turkey in order for Santa to come visit! This has resulted in him sleeping too much, not eating or drinking, & being very blah. His only forms of entertainment are the little tv he will watch, clipping his nails excessively & picking his lips which he has ruined both, both are a bloody mess most of the time. We are between a rock & a hard place with Jack a lot of the time. At least when he is busy on his phone, he has an appetite & is energetic.

Now please don’t get me wrong, I think I am misunderstood in some of the blogs I write. For years, people encouraged me to write about Jack’s story so they can keep up with him. I only write the gospel & the gospel is not always pretty, heartbreaking even at times. People that criticize me saying that I am complaining about Jack have it all wrong. Would I rather he of led a life seizure -free, wonderful behavior, be medication-free, be suffer-free? 1,000% yes! But none of those things have been true for Jack, ever. And when I write about our/his struggles, it is for no other reason than to update the folks that want to know & so that our praying friends & family can help us pray for him. For anyone to think I could not love any of my children only makes them a sick individual. If there weren’t any true, unadulterated love for Jack, I would have thrown in the towel a long, long time ago. Trying to be a fair parent to all three, four if you include Lee, be a good daughter, running your own business, making food review videos & more, is a hard task. I make mistakes often, but I have been the best mother possible to Jack & hopefully one day, all three will be in agreeance. Only those that have had personal experience raising or caregiving a special needs person will truly understand. If you will all join our family in prayer for Jack, it would really be appreciated. Please pray that his appetite & thirst will be restored, that Jack will become more energetic, & the light will return to his eyes. Thank you all! πŸ’œπŸ’œπŸ’œ

Covid Chronicles

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

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

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

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

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

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

Worry…

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

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

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

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

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

Big white house

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

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

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

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

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

Jack & Diane

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

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

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