Lee & I were recently talking about timing. Timing is an amazing thing, I find it very intriguing, fascinating even. Some examples of how I think timing is perfect are how home chefs have a whole meal ready & put together all at once, it just magically comes together. Or how when I throw a ball to either first base or third base, that’s exactly where it goes-the ball mystically falls into the glove of the opposite person. Another strange example of unique timing, is how you think about seeing someone you haven’t seen in a while & boom, there they appear.
Speaking of time, Jack’s birthday is coming up Sunday, August 2 to be exact. He’s going to be 19! It is truly hard to believe we have been riding this roller coaster with him for 19 years. The “Cyclone” coaster launched on exactly August 2, 2001 & has not let up yet. Normally, birthdays in our family are celebrated at a restaurant of his or her choosing, gifts, cake, & family & friends would be in attendance. This is not an option with Jack, sadly. I call Jack the event upsetter. Part of having Dravet Syndrome is not being able to handle stress of any kind, whether it’s distress or eustress (meaning happy stress). At nearly every birthday celebration as low-key as ours our, he has seized. Not only at his own birthday party, but others whether family or friends. Countless upon countless times, we have attended friends parties, VBS, family gatherings, games, etc & he seizes every single time. This is one of the reasons why we don’t take him anywhere really. He is far too big now to have to transport after a seizure to take to these places & the risk of him getting seriously injured from a fall from the seizure itself is too great.
I find myself questioning our Creator constantly, though only when Jack is intolerable which is most of the time. I talk to God frequently & ask Him why we have to be tortured day in & day out? What I hear back from God is, “let him go”. Meaning, place Jack in a residential facility. Is this torture a daily reminder of God’s message to me? Maybe. It’s not that I haven’t looked for a home for Jack, it’s only that one has not presented itself to me in a manner that would be fitting for Jack’s needs. I do BELIEVE placement is the very best option for our family, I am not going against God’s message-I am waiting for the right place for most of his needs to be met. In the meantime, I still unfortunately continue to question God on the why’s of the absolute torture chamber Jack puts us through. He is relentless in his forms of punishment upon us. Jack would be a wonderful weapon on his own to torture criminals for information. He would have Jeffery Epstein & Ghislaine Maxwell talking in a matter of minutes. All they would have to do is wait for Jack to wake up in the mornings & they would confess all just for Jack to leave them alone. I scream silently in my head all the time when I’m home with Jack, I roll my eyes every time he calls my cell phone when I’m away because I know there is a foolish demand on the other end, I say bad things that my head only hears when he is acting up which is pretty much all the time. This is no life to live (no life to live-good name for a soap opera).
We have a big beautiful pool that none of us can enjoy. If we swim, we close all the blinds, his door, & have to remain as quite as possible. Swimming with Jack would kill Michael Phelps, Jack runs around that pool like a chicken with his head cut off. Most of the time, it’s not even worth the effort of preparing to swim. He wears you down. Jack started well over a month ago on his birthday planning. He is obsessed with Roy Cooper & his lack of opening up the state of North Carolina, it has made Jack very irritable, at times almost violent. He always celebrates his birthday at what I refer to as Chuck E Hell & we always go to the one on Greensboro, NC. When Jack learned the ones in NC were not opening up because of Corona, he lost it. I was prepared for it & came up with the solution of visiting the one in Florence, SC since their state is a little more relaxed than ours & the drive is about the same. It would be all fine & dandy if he could of been satisfied with that, but no! He was satisfied with going to Florence, but as I’ve said since I started writing, Jack can’t get no satisfaction (with anything)! Jack began calling everyone in the phone book (literally) about his birthday trying to drum up gifts. If he saw a name in the phone book (a strange anomaly for teens his age), he called them. Jack has zero inhibitions. He then began calling Chuck E Hell-multiple times, daily even with questions about their facility & trying to make reservations . Then of course he wanted me to make reservations but I had to have a credit card. Mine of course was compromised (wouldn’t expect any less) & I had to wait on a new one to be mailed to me. In the meanwhile, Jack called our bank to see if he could find out any information on the person(s) who may of hacked my card. Then Jack started watching the video of his kindergarten & first grade year at Hamlet Presbyterian. These are the only kids he remembers from school in the videos, these are his friends to him even though he hasn’t talked to any of them since first grade. He still considers them his friends. He called them to ask them to go to Chuck E Cheese with us. What is so awesome is these kids would of gone, but I knew it would be too much on Jack & he would possibly have seizures & then I would have a mess on my hands with being so far from home. The list goes on & on with things his has done about this birthday. I so wish it was like when he was younger & didn’t pay attention or know anything about dates. He wouldn’t know anything about his birthday until a few minutes before it happened! Jack’s real-life story is mimicked after the children’s book If you give a pig a pancake. One day, I’m going to write a story about Jack in an adult storybook version.
Y’all just won’t believe what all we have had to contend with about this birthday. From Jack’s two caregivers, our family, friends, random phone book people, the employees of BB&T now Truist lol, the employees of The Berry Patch & Chuck E Cheese. It has been absolutely unreal & I think this year has been the worse yet. I dread going to Florence on Sunday. Thankfully, we’ve drummed up several adults that are going so hopefully they can help me keep him occupied & the ride to & fro won’t be so terrible. My biggest worry is him interacting with the games which is why he wants to go & being germy. But there is no virus big enough to keep him at home, we will have to face whatever repercussions that come from our Chuck E trip. He would beat our tails on a regular if he didn’t get to go. Then there is the dreaded junk prize counter to cash in your tickets for some dollar store trinket. It never fails, Jack always wants something that needs 5,000 tickets & he only has 289! Conveniently, if you don’t have enough tickets, you can also purchase items. It makes no difference to me though, I would pay $100 for a shirt & a Chuck E Hell pencil that will never be used just to get us out of there! Seizure-wise, Jack is doing better & Pekin Wok-wise, he is doing so much better. He was on an eating kick, we were unable to fill him up. Once we increased one of his seizure meds, both the excessive eating & excessive seizures slowed tremendously. All I can say is, y’all pray for us!!!