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

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

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

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

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

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

Can you see the plume of vapors from the Dermaplast?

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

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

Author: dravetsyndromeblog

44 year old Mama of three kids, wife of a farmer, & business owner.

2 thoughts on “Should of bought a lottery ticket…when I had the chance.”

  1. Amy, I was reading this story to Fallon and telling her what all you have to deal with with your business and Jack and she said, “ you mean, My BerryPatch?” I don’t know how you stay sane but you and lee have done a great job!

    Liked by 1 person

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