Covid Chronicles

Covid…it’s a weird thing. It is something that has affected our entire land. There’s not one person that hasn’t been impacted in one way or another-other than maybe indigenous tribal people that are landlocked without visits to stores, that totally rely on the land for living, & without any imports & exports (now I’m sounding like Sonny from General Hospital…, he was in the import/export business). As I’ve written about before, we (as in our family) have not really been affected as far as not being able to do activities during our shut down phase, we never really do anything but go out to eat & work any way. I do however miss taking Jack to the movies, especially this past summer. There is something about going into a movie theatre on a sweltering summer day & enjoying the coolness of the atmosphere with a Coke & popcorn in hand.

Mama & I are still able to take our trips to Southern Pines for our food reviews so our routines haven’t changed much. But the one thing that has changed for me are my shopping habits. I know Belk wonders what in the world happened to that woman that bought $300 worth of clothes every few weeks & her coupon never worked by the way & would return 50% of the items! Belk has always been my stomping ground, I’ve written a blog about that before. You need a funeral dress, go to Belk. Need a dress for a wedding, go to Belk. Need a pair of black pumps, Belk. Belk was always an essential part of my life. I’m no clothes snob that’s for sure, I buy clothes from Walmart, Roses, Family Dollar, doesn’t matter to me as long as I like it. During this pandemic, I’ve come to realize shopping is no longer an activity I enjoy. There is no where to go to show off outfits, plus, I don’t care to wear anything nice. If I ever wear anything other than a Berry Patch t-shirt, Ava asks where I’m going all dolled up! It will be the same hairstyle, makeup, shoes, pants/shorts that I wear with my BP shirts, but let it be a plain white tee, I must be going to the White House! I still have to do my Berry Patch shopping, so I’m able to get some of the same thrills. I’ve never been one to have clutter & stuff just to have it, but I seriously got tired of having bags of clothes in the house & having to deal with them. The task got to be daunting. I stopped shopping for things for myself cold turkey & haven’t missed it at all. I wish stopping eating were that simple!

What a year this has been for all of us, some have suffered more than others due to Covid. My heart from the very beginning has gone out to the elderly that may have already been confused about being placed in a nursing home or those in mental facilities that can’t have visitors. I have to wonder how many of these poor people passed away from a broken heart, not Covid? We’ve had challenges with our business that has affected us personally this whole entire Covid season. Things that just make you cuss! When you own a family-run business, you honestly can’t help but feel things personally. It’s hard to separate work & home, it all begins to run together. What a season we have had. It was certainly our busiest one yet.

When the new year began in January of 2020, we were facing a lot of the same issues with Jack that we’ve had to deal with for the last few years; scammers, instant demands, possible aggression & the return of new & old seizure types. How could new seizures erupt I wondered, I thought Jack had already gone through each seizure type there is, but his life motto has always been to prove me wrong! As the year progressed, we saw the strong resolve Jack once prided himself on somewhat diminish as his health has declined since the beginning of October of this year. Eating is nothing that concerns Jack like it does most of us. Using the bathroom is not anything he wants to take time to do. Sleeping has become an important part of his regimen now. I’ve seen the time he has gone without sleep for three straight days, now he sleeps 16 hours a day. It’s weird how life does a body. There are sides to Jack’s more hyper side of his personality I desperately miss, but I’m not going to lie, I am enjoying the calmer side of Jack that this change has brought along. It would be totally awesome if he could be like this & enjoy food again. Jack is the sweetest, calmest person in the house now. I’m not totally convinced this is a permanent change, he did go through a bad cycle in early October like he normally cycles through, but Christmas is coming up, so he could be acting this way because Santa is coming. I certainly pray the change will be one that is cemented harder in the asphalt than a light post at Food Lion-and let me tell you, they are rooted in the ground well! I’ve hit one head-on & totaled my Suburban, even moved the engine! Story for another time.

I have worked on this blog for several weeks now & throughout these last few weeks, the night I am finishing this has been the most challenging night I’ve had in a while. Jack is extra needy, clingy, wanting my attention more than ever. He called me this afternoon requesting Mama Noi’s subs. As always, his eyes are bigger than his stomach & he ordered two large subs, two orders of fries, & two drinks. I’ve been in his room for over four straight hours with him rolling all over me, touching me, getting upset if I don’t understand what he’s saying, & him wanting to sleep in my bed tonight-that is not anything I can take. Lee Berry is lucky I allow him to sleep in the same bed as I lol. I’ve heated the one sub he has allowed to sit on his bed all day & night three times-it’s midnight & the one half still isn’t half eaten. I fed him two jello cups manually, held his cup for him to drink two cups of liquid, watched Friends with him, fetched the heating pad, listened to Christmas music, read a story, the list goes on. On top of all that, I spent a large part of my day on the phone with one of the pharmacies which is a mail order pharmacy about Jack’s medicine that the doctors office messed up. As I was busy doing everything with him tonight, it struck me that I think Jack’s wisdom teeth are coming through causing the issues we are seeing now, at least I hope that’s what is wrong. What is simple for most, is extremely complicated for Dravet people. Only time will tell.

Ava wants us to have another child. That girl is off her rocker! Having Jack is like caring for a newborn. In my fit of frustration tonight as I was getting the heating pad for Jack, I told Lee I was too old to be working this hard (not exactly in those nice terms). Covid has left us all ill (like ill-box ill, not Covid ill), bored, some fitter, some fatter, any way you be, be nice. We are all socially-challenged at this time. Don’t go causing problems with the people you are around the most just because they are the people you ARE around the most. Have I lost you on that one? Those who know, know! It’s tough, I get it. Our family was quarantined before quarantine was a thing, have been for 19 years & we survived, you will, too. Do good deeds for others, it makes you feel good. Throw a roll of toilet paper to a neighbor, spare a hand wipe, anything that will make another’s heart rejoice. Let’s all hope this is the last Covid Chronicle I write about, hopefully soon the title will be Shut Down Lifted!

Author: dravetsyndromeblog

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

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