Ever have one of those days you just know is going to be sucky? Of course you do, I just had one of those as many of you know from watching my most recent video on Facebook about Jack & his iPad getting broken. I knew that particular day was going to be hectic, I knew it was going to be bad, I only didn’t realize what form or shape the ugliness would occur. I try to take one day to give to Ava, although my full attention can’t be given to her often times because of business matters, but I do try to make the whole day revolve around her for obvious reasons. This past Tuesday, a friend needed a test subject for a spray tan & I signed Ava up. We had to be there earlier than I like to willingly leave our house due to Jack not being awake, but I begrudgingly shoved forth with the appointment even though I knew there would be hell to pay later that day in some form or fashion. I tried my best to get Jack to awaken before we had to leave. I never like to leave the house without him being awake or having taken his meds. Jack is used to me doing those things & sometimes doesn’t take well to another person filling in for me. As Ava & I made the drive to the spa, I silently prayed for a good start for Jack. While Ava was getting sprayed down, I prayed Jack would awaken happy. The whole time in the spa, I spent my time on my phone texting & calling to check on Jack, so in essence, I was taking time away from Ava. Thankfully, Mama was able to assure me Jack had taken his meds & his caregiver had arrived, all was well at that point.
After the call to my Mama to check on things was reassuring, I got a call from one of our employees that the credit card machines had stopped working, normal occurrence for us. I have some sort of magnetism that causes cash registers, computers & any sort of electronic to blowup. I don’t even have to be in the building for this to happen, guilty by association! Yet another fire to put out. Calling tech support or customer service for anything is not my strongest suit. I am such an angry person by the time I get to speak with an actual human, only to realize I’m talking to someone overseas & most of the time, I have no idea what they are saying. Last time I called SiriusXM about my service, I talked with someone that had very bad broken English & a car alarm kept going off. I had to wonder where in the world she was working from, the pure-t streets of New York City? Any way, when Ava & I got back home so she could bathe after her tan & such, Jack wasn’t in his room. The last month has been very trying with Jack health-wise. He hasn’t been eating hardly enough to keep a mouse alive, or drinking enough for nothing. Most days only drinking one sip of drink for am & pm medication times & that is it. This is a Dravet trait, these kids/adults have feeding issues. Some are medication related, but the main impact is from Dravet itself. Jack has had the passion to eat (maybe), requesting food from here, there, & yonder, but had/has no desire to eat. I say maybe because Jack has a strong desire & obsession with food. He desires to spend our money relentlessly on frivolous things all the time, food is a big one. He is obsessed with ordering food & being the one in control but will not touch it when brought to the king himself. Jack has had a very pale (more so than usual) pallor, not been talking a lot, irritable, & it’s been a struggle to understand him at times because he was too weak to talk. He complained last week about his side hurting, so I asked him if he’d go to the doctor to see about it. He said yes, later that evening he told me he wasn’t going. There is no way to make him so to the doctor at all. I do what I can at home to treat him with what I have. He hasn’t coughed, ran a fever or anything unusual. This is plain out Dravet as well.
Back to seeing Jack out of his bed after the spray tan. He & his caregiver were outside, which was worrisome & only added to my confirmation that today would be a bad day. I’ve always said if Jack gets out of the bed within the first hour of being awake, it’s going to be a bad day. Jack was on the deck with his caregiver discussing having a yard sale for his Pokémon pins. There are several things that Jack loves, its spending our money & making money. He has 100’s of these pins. He & his caregiver setup in front of our house with a table, his pins, & a bottle of Coke he had been nursing on for well over a week. He had a customer within the first minute of being out there!
When has Jack participated in yard sales in years past, it has always been a fiasco. He would run around like a chicken with its head cut off, would ask ridiculous amounts of money for a piece of junk, shake, tremble, eyes dilated. The best way to describe his behavior at a yard sale is like that of a heroin addict. He talks nonstop, hands tremble, pupils dilate-all from the excitement of the whole situation. It’s too much for him thanks to Dravet (another evil characteristic). Not figuring Jack would last long outside since it was hot, he surprised us all & stayed out from 1pm-6:30pm. The ruckus started around 6:30pm just as I was about to go into the restaurant to try to have an enjoyable meal with our oldest, who we had not seen in weeks as well as Mama & Ava. Our chosen spot was Bad Daddy’s Burger Bar. As we were pulling up to eat, this is when the ordeal began, bear with me as I recount the middle part of the story.
It was shortly after Jack got setup for his yard sale that Coleman called wanting me, Ava, & Mama to ride up to Charlotte (his new stomping grounds) to get his old truck. Coleman is a recent graduate of NC State, has a job in the Charlotte area, & just purchased his first adult item, a car! We’ve not seen his apartment yet, so we were anxious to see his new place & inspect the liquor cabinet of course! We helped Coleman do a few things inside his apartment & later helped him load a chest of drawers to return to Big Lots (he is my child after all lol). As we were approaching the restaurant (I am nearly two hours from home), Jack’s caregiver called to explain that Jack was upset & had the potential to become violent. Jack of course has all his electronics outside with him during his yard sale. One of the chairs they were sitting in was black just like his iPad. The iPad blended in perfectly with the seat & his caregiver sat on Jack’s iPad & shattered it. It was in a case, but it still broke. Jack then flipped a chair, flew in the house, slammed the front door & slammed his bedroom door shut. Sort of typical teenage behaviors from what I’ve seen on tv, thankfully Coleman nor Ava acted like that, but when Jack does, we know the outcome could be dangerous. She called me first which I’ve always instructed her to do, I then called Lee who flew home not knowing what to expect. I called Jack & tried to explain it was an accident, it would be replaced, all would be well. Unfortunately, Jack doesn’t have a reasoning bone in his body. He was pretend sleeping which is an attention seeking method he uses often. He can go from pretend sleeping to Ninja fight mode in less than a millisecond. He did not thankfully, although we were all worried terribly he would become violent.
I had to do several things while trying to dine with my family. One was become preoccupied with a brewing situation at home, calling Jack, Lee, or Jack’s caregiver every few minutes to make sure things were calm, reassure Jack I would go purchase another iPad that night. Not only could I not enjoy the company I was in, I had to drop a wad of money on an iPad & case, something that hadn’t been budgeted for of course. The first Target was out of iPads, the second one had one left & it was a pricier iPad more than I had planned on spending. Instead of taking the chance of going to another store & risk them being out, I bought it out of fear & a time constraint. Fear Jack would fight us all if I didn’t come through. I honestly don’t know if I could live through another fight with him. He is too strong for me & I don’t know why. He doesn’t ever move, ever! I walk around all day long carrying heavy boxes, lifting watermelons & such. I am strong, but I’m not Jack strong. Jack’s mind is strong, too. He is the most strong willed person I know. Because his mind is so strong, it keeps his strength going when he is in fight mode. I go through scenarios in my head planning what I would do say if I were in the kitchen & he attacked me. What would I do if I were alone? Ideally, I would love to have a huge net in each room that I could get to to throw over him while I lock myself in a room until help arrived, but that’s not feasible in the least. All I know to do is knock him to the ground & hold him down until someone comes to help, if that would even be a possibility. Once home with the iPad, Jack didn’t even care about the new one. He is still focused on his caregiver breaking the iPad. She is a tough woman! Anyone that willingly stays with Jack is a blessing & I have to believe they will be sporting a crown in heaven one day. Is it an easy job physically, yes, but mentally it is not. And even some days, your physicality gets tested. I am grateful for anyone who puts their well-being on the line for us & him. I ask myself all the time, why are our lives this way? Why must we live in fear daily? Why can’t Jack find satisfaction with anything & why can’t he be reasoned with? As if the Dravet diagnosis isn’t bad enough, we have a whole other list of issues to contend with.
It is so scary living with a ticking time bomb. I’ve never been one to be involved in fights, only getting in one & it wasn’t really a fight when some gal from Rockingham was dissing us Ellerbe gals. Don’t mess with my hometown or people lol. Fights scare me, they always have. Some people are drawn to them, get involved when the issue doesn’t even involve them, record them, encourage the fighters. I hate to see any person hurt, no matter who they are. I’m the person that would be willing to fight if I see an injustice. I’ve seen kids being bullied before & have stopped to breakup a fight or intervene in someway. Never would I be willing to witness an injustice on anyone. I wish we could all be this way.
Humanity…humanity can be amazing. We all makes mistakes, we all have accidents, we all can be mean, overly tired, & my favorite term, illboxes. When I put out my video of riding solo home from Charlotte on Facebook a few nights ago & asked for prayers for a peaceful night for Jack, I was touched by the many prayers our family was gifted with. It was then that I realized people really do care. People are so kind, people have huge hearts. Our family is so blessed to know so many people that care about our situation. My heart breaks everyday for so many reasons, mostly for all that are housed in our home, but it hurts for our entire population. Why people can’t get along & accept each other as is makes me sad. So many people don’t know what it’s like to be a caregiver or have an ailing child or a family member or friend with a chronic, devastating disorder or disease & that is great. Being exposed to these things makes you more compassionate, but it also hardens your heart in some ways like mine has become. I don’t have time for nonsense or foolishness or frivolous things. I know longer care about my looks, what I wear, or what people think of me. My message to you all is simple & one I think we could all stand to learn & practice daily, be kind, unless someone is acting foolish or “stew-pid”, then speak up & act a fool! Also, please continue to pray for better days for Jack. He’s still not eating or drinking & is sleeping more 13 hours or more a day. Although he is getting a large amount of sleep, large amounts of sleep aren’t a good thing for most people, it makes most people extremely irritable. The later he sleeps, the later my day starts. I’m not able to get out of the house now until almost 1pm because he’s sleeping so late. Not sure about why the recent changes in sleep, I may never know or understand. It’s 12:09pm as I wrap up my final paragraph of this blog & Jack is still asleep. There is so much I need to be doing at work, but can’t. Until next time. 💜