Life is tough, I think that has been the beginning of many blogs to describe life for our family. Life is also weird. Our lives are often tough & weird at the same time. Tough for the obvious with the challenges we face caring for Jack & weird based solely on the Bermuda Triangle of Dry Land, aka The Berry Patch. It was only less than two years ago that we were dealing with the unbelievable with Jack. It is so hard to believe that he called a taxi & got in it just a few years ago. If you missed that blog let me know & I’ll send it to you. Jack’s behavior was also through the roof. We were running around town all the time buying gift cards for people that were scamming Jack claiming they would be his girlfriend, he told me one night that some gal was gonna move in with us & there was nothing I could do about it, & he talked to all sorts of strangers & told them all where we lived, we owned The Berry Patch, practically everything about us. He was looking at inappropriate images, talking about inappropriate things & not even understanding what any of it meant. Jack also did things that I can’t even speak of & never will. The summer of 2019, Lee & I were really getting serious about residential placement for Jack. I started recording Dr. Phil even though I dislike those type of shows to see if he had anyone on there like Jack & what he did to treat them, I have never once seen a case like Jack’s, even wrote to Dr. Phil but never got a reply. We went through complete & utter hell as a family. Jack tormented us & had no idea he was doing so. Jack was oblivious to our fear of strangers showing up trying to move in, kidnap him or Ava, the financial burden he placed on us multiple times a day with buying gift cards for a strangers affection, plus the fact that he could whoop our tails in a matter of seconds. I was armed at home with mace should Jack attack. We absolutely had a disaster on our hands.
Practically Jack’s whole life, we’ve been involved with a social worker for this or that reason most because of his medical needs, but as I mentioned above, the summer of 2019, we were preparing to place Jack somewhere so that we were not threatened on a daily or lived in sheer terror of him. I learned that there was no place for Jack, or that’s what the social worker basically told me. Now I know nothing would be like home nor would he get cared for like he did at home, but something had to be done, Jack’s behavior was killing us. I wrote many, many blogs begging for your prayers for Jack. We prayed ourselves for the evil to leave Jack & the sick people that were preying on him to leave him alone & for Jack to loose complete interest in the apps such as What’s App? or dating sites which was causing so many problems. While strangers were busy as bees preying on Jack, we were busy as bees praying diligently & fervently for Jack to find complete & total disinterest in the bad things the internet had to offer.
While we wanted an instant miracle, God had other plans. For years, the torment continued from Jack. Physical abuse from him, scary situations he would get himself & possibly us in, & he was plain mean. He would talk to us terribly & Jack has a very caring heart. It was so scary that I keep a bottle of wasp spray in the living room prepared to blind the predator that might show up that day. Not to mention he would stay awake for days on end. It was a really trying time for us. I’m not ashamed to admit it because God knows my faults, but I would fuss at God & wonder why every single aspect of Jack’s life had to be complicated & scary. I am ashamed of thinking God had given up on us as a family, on Jack. I did not keep the faith throughout. I am weak. Though weak, God helped us through a horrific situation that only God could. It took a while, but it was in His time. The day will come when I ask God why we had to go through such hardships with Jack. The answer has got to be something amazing! It took a long while as I said for things to change. The change took place when talk about Covid started to arise, late in the year of 2019. This was the first time Jack’s health had significantly shifted, ever. The shift was something most Dravet families have dealt with or deal with on a daily basis. Jack was always like a bull in a china shop with us, so the change was slightly welcomed but also new & uncharted territory. In the mornings prior to his change, he would get up bouncing off the walls, calling everyone in the world, would grab hairbrushes & throw them at lights & bust them, pick physical fights, he ate lots, & drank tons of fluid. After following up with the social worker about the lack of facilities for Jack, I told her to hold off because the Covid restrictions were so rigid for people in homes & restrooms, plus, Jack was doing really well as far as the bad stuff was concerned. I can not imagine ever placing Jack somewhere but I certainly could not ever imagine putting him somewhere where no visitors were allowed. It breaks my heart so much to think of the people in those types of facilities that could not have any family support & they did not understand what was going on in the outside world, which I don’t either myself either any more.
During my prayers when Jack’s behavior was so threatening, I prayed that the evil Jack partook in would cease. I begged God to stop it, pled with Him & He did. It wasn’t immediate, it wasn’t within a month, but it happened. Were these changes something we willingly would have asked for if given a choice, the answer is no. The changes that Jack has gone through have been difficult to accept from all of us. As the changes in Jack’s health began, we thought it would be temporary, now we are learning that it may be permanent. I question myself often wondering if I prayed for this for Jack. Realistically I know that I did not. I asked for changes, but I didn’t really know what kind we would be granted with. Acceptance of Jack’s newest condition is a hard pill to swallow, however, it is God’s will. Is he healed from all of craziness we had to be privy to, I’m not 100% sure on that. We are not sure if he will ever revisit that again, but we sure hope he doesn’t. Jack still has violent tendencies, still has refusal bouts for medications, still has a lot of demands, these are manageable. He has not tried to move a stranger into our home in 1.5 years, he has not called a taxi to take him to Dollar General to buy a gift card for a fake girlfriend who is catfishing him online, he is not talking to us in rude, derogatory terms like he was previously. This is what we prayed would stop & it has. All the glory to God for blessing us with that miracle!
Jack is weak now, but he is the most resilient person I have ever known. He is not in need of a hospital stay at this time. With the help of his hydration nurse, the hospital has been avoided, praise Jesus! He eats about every other day now, which is leaps & bounds better than before & drinks more now. I am so very grateful that the bad bad is gone. The lesson I have learned is to not give up on prayers. Prayers are heard. Prayers are answered. They are not always instant which we think they should be. There are days that I’m down so low thinking about Jack being weak & not eating, but I try to remind myself where he was. Jack is now more tolerable, sweeter, & so much easier to get along with. I cherish the days he is mobile & wants to get out of bed & interact with us. I absolutely loved taking him to the movies last week no matter how much it cost. It was a blessing to me, I would of paid $1000 if that meant getting him out of the house & having fun. He loved the game room most of all. It was a perfect situation to take him because no one was there & I mean no one. I feel so sorry for the movie theaters now. Please go out & support them, do it in honor of Jack! Just be sure to take a suitcase with you in case your child plays in the game room, you may come out with a ton of loot like me!