What a total relief it is to not currently be consumed with fear. Those of y’all that have kept up with my blogs over the years know the disastrous struggles we have had to face with Jack; fear of attacks, actual violent attacks, him befriending strangers, us having to purchase gift cards for strangers online & trying to move a stranger into our home, Jack doing things to his body because someone online told him to, & not to mention the severe medical issues we’ve had to deal with. I will say since Jack has been born, this is the most relaxed I have been & even that isn’t much. I’m so used to being uptight & wound-up from the unexpected & the expected that I kept literal knots in my body (chiropractor visit today for the first time in years). I’m no fool, I half expect this to change by the time this blog is issued. It is so difficult for me to speak the truth even when it’s good truth because often times that truth is spit back in my face like a raging fire. Jack has struggled with his energy levels since coming home from the hospital during his unfortunate incarceration at UNC hospital for nearly two weeks back in May. Originally, he was hospitalized for malnutrition issues in which his team wanted to place a feeding tube immediately, but I knew in my heart & every fiber of my being that Jack would not want that nor would he tolerate that. Thank you Jesus that I have guardianship over Jack or I would of been facing jail time I feel certain. I was berated more than once, told that a feeding tube was Jack’s only hope, asked if I had guardianship over my own disabled child more than once, made to feel like a total & complete failure as a mother, had to meet with the hospice team on several occasions because that’s what they were sending us home with, & all the while I did this alone due to Covid (how many of you are tired of hearing “due to Covid”?). No parent should have to face any of that alone, it really was one of the most trying times of my life, I cried myself to sleep every single night & then some. Jack was released from UNC once the team saw they could not break me down into the feeding tube talk & released him with pneumonia that no one knew about. I tried my best to tell them Jack was sick but they didn’t listen. After being home a few short hours from the first hospital release, Jack was in an ambulance barely breathing. Once things calmed down with the pneumonia & Jack made it back home, he was eating us out of house & home, he began gaining weight which was wonderful, was using the bathroom regularly, & not sleeping as much, we were thrilled but the huge amounts of food he was ingesting was causing his medications to be metabolized differently & seizures increased, which meant violence was knocking on our door (violence after a seizure is a commonality for Jack). We watched him tear our kitchen apart back in January after a grand mal seizure. Thankfully & woefully, the eating started tapering off in a huge manner rather quickly. Thankful because that meant we would not have to add or increase seizure medications which is always scary, woefully because the lack of eating & drinking were slowly driving Jack back into a malnutrition state. I tried everything under the sun, moon & stars when Jack’s eating failed. From his beloved year-round elf leaving special food gifts, to buying water from his favorite country of Australia, to of course buying his most fave meals from Chiba, Dixie Burger & Bojangles. Sadly, none of these items held any will for him. Jack was listless & sleeping a lot yet again & I knew another hospital stay was on the horizon. Through a friend, I found Jack’s hydration nurse. Her presence has been a wonderful blessing to us. Jack respects her & values what she has to say, unlike his stupid parents lol, after all, Jack is a young adult who thinks anyone that lives in his house is an idiot! Each time his nurse would come, his blood pressure would be extremely low. This came from being severely dehydrated & it is also a Dravet thing, couple the two together & it makes a very bad recipe for health. Jack simply did not have the energy to eat nor drink. I am always looking for alternatives for treating Jack at home. One, he doesn’t like nor want to go to the doctor, two, natural alternatives have helped Jack almost more than conventional meds in some cases. I have known how to treat Jack best a time or two, so for those that say don’t question science, think again. I have always & always will question science. There are too many incidents in Jack’s medical history that science was questioned & Mama was right.
After going through much of the summer with fatigue, dehydration, starvation, listlessness, I again started researching alternatives. On a Facebook ad of all places, I was lead to a vitamin patch. I got the ad because of all the searching on Google I was doing to find something to help Jack. Jack takes so many pills & he takes them all at once, I’ve never seen anything like it. He pops them all in his mouth at one time & down the hatch, unreal! Not only were we able to remove one behavior medication late this summer, we were able to reduce the dose of another one & hoping to get him off of it real soon since behavior isn’t a top concern at the moment. I’m not going to play with any of his seizures meds because they do seem like the right cocktail at this time. I ordered two different varieties of the vitamin patches, one was iron because he has been known to be deficient, the other was an energy patch. I prefer to do small changes at a time so we will know what works or doesn’t for Jack. I started with the iron patch, no changes. Then I started with the energy patch a few weeks later & boom, he came alive! He has had the energy to eat & drink! With his blood pressure so low, he had the desire to eat but not the will. This patch has changed that. He isn’t gorging like he was when he arrived home from the hospital back in May, but he is eating one to two meals a day & popcorn, plus drinking more which has made his blood pressure rise (and that’s a good thing)! What’s different about this patch is how the vitamins are delivered, they are absorbed so much better through the skin than in capsule form. I’m so very thankful for this particular Facebook ad. I have fallen down the rabbit hole of many Facebook ads that have proven to be junk, not this one though. And what makes this all so much sweeter, Jack is actually eating things we cook at home instead of drive-thru food. This has been a true enjoyment for us. The amount of food wasted & money thrown down the drain from takeout meals was really astronomical. Just tonight he wanted me to make him potato soup.
Jack has been more mobile since he has been more energized. Sitting outside for nearly nine hours one day, enjoying Dancing with the Stars in the living room with me, calling people on the phone again. If you are a follower of ours, you may remember back this summer the trouble we are having with the neighbors barking dogs. I tried to lean on the sympathetic side of our neighbor but she apparently has not one by explaining to her our delicate sleep situation which is basically we ain’t getting none! After repeated messages to her, I was called a Karen & self-absorbed. I truly hate what our culture has done to the beautiful name Karen, I have always liked it & thought it was so elegant. One particular morning, the dogs were cutting up early, for hours. It woke Jack up, he wanted to walk over there & confront her, but I was able to deter him by saying we would let the police handle it. Ha! We’ve had to call the police several times because the dogs get out of their fence, come on our deck or porch & bark incessantly & I am not sending her messages or going over there, things could get ugly. Last Friday, Jack’s caregiver Sherry called me to inform me Jack called 911 because the neighbors dogs were back in our yard. I called Lee & he rushed home & talked to the deputy. We have a wonderful sheriffs department that is very understanding & caring towards Jack & we are so thankful. I bet that neighbor thinks “Karen” called the police on them again, she didn’t know we have a “Chad” in the house, too (sorry all Chad’s)! Jack is a leader, albeit he doesn’t often go about things in the right manner, he is still a leader. We do not get the neighbors though, they undoubtedly must take tranquilizers when they let these dogs out!
Every bit of this positivity could change in an instant, but it feels so good to be able to breathe & not worry as much. We honestly never know what Jack may do from day to day, ie calling the popo! Jack tickles me often, he can be really funny but he has such a dry sense of humor & gets angry when someone laughs at something he says. This is so hard for me because I find so many things hilarious & have a hard time containing myself. I’m the kind of girl that has been known to laugh at a funeral or a wedding totally & utterly uncontrollable, but that was before life got so stressful for me. Now if I laugh, it’s just a quick burst, I haven’t had a crying fit of laughter in a long, long time. I’m like the song Harden My Heart by Quarterfish. Tonight Teddy & I were playing, Jack was in the living room oblivious to Teddy until Teddy ran through the living room, bound himself on the couch & ran back through again. Jack said, “Teddy is like an Australian boomerang”. I died laughing. Not only was that funny, it was using such quick wit, something that people don’t think special needs people have. Jack is very quick witted! He got really upset that I was laughing at what he said & that made me sad that he was upset over laughter. He had the ultimate revenge plan held over my head though. Jack told me if I didn’t stop laughing, he would delete all my shows I recorded on the DVR! He is evil lol! Below is the video of Teddy running around & throwing himself on the couch like a boomerang.
Another moment of hilarity was when Jack asked me about Halloween. He wanted to know if Biden was going to allow Halloween this year. I didn’t respond much because holidays tear his nerves up. Jack said “he ain’t said nothing about it”! Then he said, that Biden & Roy (Roy is our governor here in NC & spelled out) L-E-A-V-E!” Jack has never forgotten what Roy Cooper did to his birthday celebration back in 2020. Cooper shut down nearly everything & Chucke Cheese happened to be one of the places, Jack is accustomed to going to the one in Greensboro, NC to celebrate & all because of Covid, we had to ride to South Carolina to celebrate since their restrictions were/are null compared to NC’s. He is a funny guy! What a pleasure the last few weeks have been for us. Though we still have to be extremely accessible to Jack-running up & down the road to buy 9 volt batteries for an elusive Power Ranger toy, an eBay gift card, or my favorite, phone cord chargers which seem to have the life-span of three weeks max, it still has been a wonderful respite for us, one that we pray will continue for a lifetime!