A quick trip south

As a stay at home Mama, my days with the kids were full of visiting folks, playing outdoors when it wasn’t too hot or cold for Jack’s condition, countless doctors visits for Jack & others in the family, running errands for The Berry Patch, playing, learning, & afternoon naps. One of my favorite things to do when the kids were smaller was to pile up on my bed & watch tv. Our most favorite cartoons were Max & Ruby & Little Bear. These two shows were soothing, not wild, & just plain sweet. The kids would be freshly bathed, in their little pj’s, & smelled so good. It was a calming, relaxing time from our sometimes busy days-very much needed for all of us. As the kids got older, their needs & wants changed, nighttime was consumed by homework for Coleman, an every night multiple seizure ritual for Jack (I’m talking 100’s every single night), & with the energy of our toddler Ava, the nightly routine of cartoons faded.

Two Saturday nights ago, Jack did something really unusual, he hopped on my bed & wanted to watch tv. We talked about how we used to do this when he & his siblings were little & how one of his favorite shows was Max & Ruby. To the thanks of “on-demand” service, we pulled up the sweet little bunnies & enjoyed 30 minutes of absolute calmness. Its been a while since we’ve seen this show, my biggest surprise outside of Jack wanting to watch it, was that Max talks in complete sentences & they have a Daddy. For years, we wondered where Max & Ruby’s parents were, but we both determined we liked the old version better. Unfortunately, calmness quickly went to calamity shortly after the exit of Max & Ruby. Jack wanted to watch I Dream of Jeanie next, which was great, I love that show. He called my Mama & was talking to her while we watched. I laughed at something they were talking about & that’s when the moment was ruined. Jack grabbed my face, shook it as hard as he could & told me to stop laughing. It’s in those sort of situations with Jack that I realize how a victim must feel when being attacked. So that the situation would not get explosive, I shook my head yes to his demand which was to stop laughing, I couldn’t talk because he had grabbed my jaws & was squeezing them. After releasing my jaws, he apologized & of course had an excuse. The excuse was he doesn’t like to hear a girl laughing. That’s what my whole life was built on-laughter! It wasn’t about the laughing though, he is always looking for an excuse, a way out of things. His mind is always churning-churning quicker than Land O’Lakes makes butter. Even when he sleeps, his mind is spinning, talking in his sleep predominately during his whole slumber. So my Saturday night that started out so nicely was ruined in the blink of an eye over what I consider the best form of therapy-laughter. The picture below was taken just before Jack’s attitude changed.

When this type of behavior occurs, it crushes me, drowns my spirit, takes me to a dark, unhappy place that is hard to rise from, but the show must go on. I have to maintain my composure so that things won’t escalate when the very thing I wanted to do was grab his face like he did mine. I have to try to make like every thing is okay afterwards when all I want to do is curl up in a ball & scream to the top of my lungs. I have to be okay because I have a family & a business to tend to. Lee & I say at least a few times a week, that we can’t make up what occurs in our lives. Just the other day, Jack asked me to take him Pokémon hunting. This was right after he woke up around 10:30am. I don’t dare move in our house until he wakes because he can sense me. I told him no. Of course that wasn’t suitable to Jack. He kept demanding. Since my day had just gotten started, I was still in my nightgown, no bra, hair unbrushed, nothing done to myself, Jack was still in only a tshirt & his underwear. He had to go right then & there since there was some sort of time limit on how long a certain character was going to be at the post office for his game. I prayed that no one would come up to my car. Thankfully they didn’t! I had a yellow slip in my car indicting I had a package to pickup, Jack was actually going to go inside in his less-than attire to retrieve the package. I told him it was an old slip, he bought that thank goodness.

I had an odd occurrence Friday evening (shocker, right?). Ava had a volleyball game in Timbuktu, it was literally in the middle of nowhere, two hours from home. We were surrounded by nothing but churches & railroad tracks, rarely seeing a house. I’m thinking where in the world do these people live? We drove for miles & saw ten churches per one house. The sky was black as soot except when it was lightning, might I add, it was lightning like crazy.. It was actually one of the more frightening electrical storms I’ve ever seen. Normally at that time of night, I would be home during a storm like this, candles burning because the power would already be out, calling all the neighbors & family members inquiring about their power, & frustrated because I can’t watch QVC. I wish that were the case! As we watched the night sky light up, we were complaining about having to drive two hours away for this game, but it quickly became like a scene from the movie Deliverance. On the way home, I drove, Ava & Mama were my passengers. Suddenly, the biggest bolt of lightning I’ve ever seen in my life shot down to the ground. Terrified, we all screamed & I immediately started crying & my arms felt funny. I am not a crier unless Jack has given me a fit. The cry had something to with that lightning, it was totally spontaneous & I know I got a little electrocuted. My arms felt like there was energy coursing through my veins, I wasn’t in any pain, I just felt plum out-of-sorts. It was really starting to feel like Deliverance at that point because we also felt like we were lost. Nothing was around us at all. Ava was hysterical, she thought I was going to die, Mama’s nerves were tore up because she thought we were lost & she can NOT tolerate that, & I’ve been electrocuted! That ol’ crazy woman Siri kept telling me to proceed to the route. Do you ever say back to her, “that’s what I’m doing”! I do that…A LOT. We couldn’t get home fast enough! That whole night, I didn’t sleep. My arms & legs felt funny & I dreamt crazy stuff. The next morning I was okay, no harm done…hopefully. Who wants to take a trip with us, it’s always an adventure!

Jack is still on eating a bacon & egg sandwich every.single.night. The amount of bacon he’s going through is not healthy. I know it’s not especially for Lee, Ava, & myself, Jack doesn’t eat a whole lot, so he’s probably fine. Bacon is perhaps the most irresistible food to a non-vegetarian in the world. Do you know how hard it is to resist a fresh pan of cooked bacon in which we have available at all times now-it can NOT be done! Our triglycerides are going to be through the roof! We are like the little dog on the commercial where he is begging for bacon strips.

Last night my heart melted just a little. While the picture below may not look like anything but ordinary, it is actually extraordinary. Jack was interacting in the kitchen which we all know is the family central hub like a normal teen. He actually poured himself a glass of Pepsi, was chatting with Ava & I, & not doing anything foolish. It was so nice! I’ve never really been able to have the pleasure of witnessing this much. To you, it’s probably nothing to have your kids in the kitchen hanging out, to me it was everything!

Unfortunately, my quick trip south was not a beautiful walk on the beach or a flight to Key West, it was more like a walk on the rough side of town. As I try to get over the constant & perpetual bumps in the road, I am reminded of the saying, “this to shall pass”. Knowing that the worst of days won’t last forever & the days & nights may both be long, there’s always a chance for a better day tomorrow-I hope & pray!

Author: dravetsyndromeblog

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

One thought on “A quick trip south”

  1. I hope you get to see more glimpses of the sweet a Jack, did you change his meds as it seems maybe something is transitioning. On the other hand sometimes when people get struck by lightning they become clairvoyant! That would really be cool!

    Liked by 1 person

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