Dane bramanged, yes you read that correctly! Back when I was in seventh grade in 1987, denim jackets were popular & although I had one, I didn’t quite feel stylish in it because of my Inspector Gadget arms. Tall, fashionable clothing was only for men in the big & tall section! In the 80’s, nothing was in talls, except business suits for women in the JCPenney catalog (that I looked the pictures off of). To make me look more “in style”, I adorned my jacket with buttons and/or pins that had sayings on them. One of my favorites was a white based pin with black lettering that said “dane bramanged”. I thought that was absolutely hilarious! I surely didn’t know that my favorite pin would come back to haunt me. I wore it like a proud Scarlett Letter during the era of bleach blonde hair bigger than our classrooms world globe. I now need that pin back. Not only do I need the pin, I need it in a shirt, hat, headband, shoes, everything just to explain myself! Below, this picture reminds me a lot of the jacket I proudly donned with my precious pin!
Although I am trying to act aloof about my brain, I am actually being very real. During Jack’s unfortunate incarceration aka his three month hospital stay, I slept none. I was there most of the time which meant there was no rest. I heard every syringe wrapper being opened, every beep from Jack’s many alarms & other patients as well, & the constant opening & closing of the door. I have said for over a year now, that I don’t think I will ever recover from what that extreme lack of sleep did to my brain. When we finally did make it home March of 2022, Jack’s sleeping pattern was all messed up & it still is. He’s either up two hours after I’ve been asleep using the bathroom or wanting us to cover him up or messing with Teddy (our labradoodle for those that don’t know), or waking up five hours after I’ve gone to bed hunting for food to eat. Poor Teddy, Jack refuses to let Teddy sleep anywhere else but with him. Teddy’s sleep has truly suffered as well, he would much rather sleep with Ava or myself. Solid sleep is no such thing in our house. When people say they slept like a baby, they have never taken care of a baby. Jack’s sleep cycle is much like that of a baby. I was able to handle the lack of sleep when I was mothering three at a much younger age, but now, it’s getting tougher. I recently read that as a woman ages, her oxytocin decreases which makes her less able to function without proper sleep. I tell Lee all the time that we will never be well-rested, we will always be tired. There will never be a moment of feeling wonderful & rested & that is so sad to me. I get so tired of feeling tired & there is no amount of talking to Jack that will make him change his poor sleeping habits. This is a direct result of Dravet & being hard headed! I’ve also been dealing with a severe pain in my hip that is worse when lying down. I can’t sleep on either side because the pain is so bad, I wake up many times throughout the night tossing in pain, rolling around like a hotdog on a gas station rotisserie oven! Many injections, physical therapy, acupuncture, dry needling, massages, supplements, & new mattress topper designed for hip pain later, I am in the hole $1,000’s of dollars & no better-worse actually. This has been going on for two years but recently has become difficult to treat & more painful. The doctor told me last time that my lower body was like the Kardashians making it harder to break down the pain…aka, you’ve got a big butt & hips, loose some weight is what I heard!
How do I know I have a damaged brain? My recall isn’t what it used to be. I am foggy, forget appointments, mix up names, & totally can not remember the simplest of things. It is alarming but in the words of Tony Soprano, “wattah gonna do?” Jack has made some great strides that a lot of kids make when they are four or five in being able to stay away from home. He has spent the night with Mama & Daddy a few times over the last month & of course he gets over there & sleeps like a 60 year old man! He wouldn’t dare do that for us! Meanwhile, Lee & I are the dumbest people on the planet while Jack is out living his best life at Nan & Pa’s. Lee naps for a few hours from 7-9pm (what men do), then he wants to get in the hot tub. By the time we do that & then have our showers & I do my Berry Patch stuff, it’s 1am & still not in bed! But it’s how life is, I’m not accustomed to going to sleep early. I am so tired during the day but I always get energized at night. I’ve always started cleaning out a closet or drawers after midnight-it’s a prerequisite for me! Part of it is genetics as well. I had an aunt that would stay up all night long & go to sleep around 5 or 6am. And another one that was too scared to sleep at night so she slept on & off during the day. Why she did that I’ll never know. The woman always had a pistol in her purse & nightstand & a cigarette in her mouth! I should of been a man! They can sleep anywhere, anytime.
Jack is now on a pizza kick. Every single bite of food he ingests is pizza, has eaten only pizza for at least two weeks straight. He had slacked off tremendously on his eating for several months & lost a few pounds, this is a common Dravet trait. Dravet patients wax & wane with appetite. While we are more than thrilled his is on an eating kick, it hurts the pocketbook big time. I kid you not, we get pizza every single day from either Mama Noi’s or Ellerbe Pizza & Hot Subs (got to include the word hot or Jack fusses). Most of the time, we get two. The pizzas are really good, but they high! Two pizzas last Saturday cost $42 & that only lasts for one day. They all know who Jack is at our newly opened restaurants in town. It’s a bit of a confusing story. Mama Noi’s has been in existence in Ellerbe for many, many years & always had the same phone number. They recently closed because the owners purchased a larger building for their business. Instead of taking the name Mama Noi’s with them, they are now called Ellerbe Pizza & Hot Subs, but EP&HS took the Mama Noi’s phone number with them which has caused a huge amount of confusion for the people of Ellerbe. I made a Facebook post about it a few weeks ago & the comments were hysterical. So now when you place an order at Mama Noi’s with the different phone number, they make sure to say “we are the across from the gas station”. But Jack still gets it mixed up & there is no explaining it to him. He likes to take charge of situations & often calls in his order. When I ask where he got it from, he says he forgot. It’s unbelievable what these two restaurants have done to the town of Ellerbe! Below is a text about the confusing restaurants.
What gives me great consolation as I go through this dane bramaged period of my life is what Jack used to be. He used to be a child of my own that I feared. I used to carry mace around the house with me & locked every door I went in. I feared talking with Jack because anything I said could be taken the wrong way & he would attack me. Life is way different for us now. Although he runs me around town getting food for him nearly every single day, I’ll take that. He is a changed man, changed to the point that almost nothing he does bothers me, almost being the key word. As I watch grown adults bicker with others on social media or in real life about foolishness, I say to myself, “these people have nothing to truly be thankful for”, and that is heartbreaking honestly. I wonder if trauma causes people not get involved in silliness, maybe that & proper home-training! I sometimes think that certain people could use some real-life problems so they can see what is important in life.
I have questioned God’s plan for my family since Jack was six months old, just four days after his routine vaccinations when he began having 100’s of seizures a day. We weren’t bad people, we loved our Heavenly Father, we helped others. Then when Jack became violent around age 4 quite often until just a little over a year now & completely unmanageable & harmful to us, my faith plummeted. Each of us in our own house feared for one another’s safety. I couldn’t understand why our lives were to be lived in fear & why our prayers were not answered. It wasn’t until I fully gave Jack to the Lord that we got our biggest blessing & that was in Jack’s health crisis. Just a few months prior to Jack entering the hospital in December 2021, I pled with God to let His will be done. Did I know that a three month hospital stay would be our answer, I did not. I worried myself purely sick about Jack & what he was going to do all the time. When Jack was in a critical state while hospitalized I was a nervous wreck, but I also had a calming sense with me most of the time. It wasn’t until recently while reading a Christian based book that I came to the realization that by giving Jack to God, that He had mended our wound. When I think why our family & Jack lived in torment for so long, I like to think it was to help others with our story. I don’t know if that is the case, but I like to believe so. If you are battling a chronic, difficult challenge in your life, I urge you to give it to the Lord, just wipe your hands of it. Say “whatever Lord”, take it from me. Pray about it but fully believe, trust & commit that He will bring you through this.
Facebook ads always get to me. Most of the time, they are pure junk, others, like the one I’m about to tell you about are home-runs! I guess Facebook was tired of me thinking of Jack’s behavior all the time & started running a relentless ad for a probiotic called Neuralli. This supplement was designed for people with neurological problems such as Parkinson’s. There have also been extensive studies of usage on people with ADHD, behavior issues & more. I will try most naturals and/or supplements before I try medication on Jack & myself. I have a few stipulations, one must be made in America. Two, must not interact with Jack’s current meds. Three, must have lots of positive feedback. This one met all of my requirements & boy have I been pleased. I have been very hesitant to talk about this. In the Dravet community we all know that talking about something that is working is often a jinx. This is very scary for me to write truly, but I can’t hide it any longer for fear that someone that needs to try this might miss out. Neuralli is a capsule taken twice a day & can be purchased online. Jack started it this past summer. I started him on it for about six weeks & within of few days of stopping it, Jack had a behavior outburst. He started the probiotic again in August of 2022 & hasn’t had a seizure or a behavior outburst since. The supplement is said that it will help sleep, but it hasn’t helped Jack’s…maybe I need it! It has impressed Jack’s neurologist so much, that they are thinking about opening a study on it. I’ve always wanted to help others that are on similar journeys like Jack’s. When Jack was growing up & had so much scary stuff going on, I had no one. Not one person I could ask stuff to other than the doctor & those visits were quick, and I was often unheard. Everything Jack has been treated with, I have had to research & bring up to the doctor or try on our own. Dravet is so rare that information wasn’t out there until recently. Thank goodness for the internet! Here is the link for Neuralli if you would like to try it for yourself or a loved one: https://benedlife.com/
As Jack was watching the old Batman & Robin with Adam West & Burt Ward this morning & asked me as he spelled out, “is d.a.r.n. a bad word”. The sweetness of Jack has returned & I will take a damaged brain all day long if that means he will forever stay our sweet Jack. Thank you Lord & thank you Neuralli!