Granted Christmas Wishes

Most of you know my complete and utter disdain for the Elf on the Shelf. It has been an approximate 15 year problem. However, this season with the elf was not bad at all. Jack felt poorly for most of the elf’s presence. Now that Christmas and the elf have returned to the boxed hell they came from, we are hoping that Jack can get back to his normal. Christmas as well as all other celebrations really put Jack on edge. He can get irritable, aggressive, rowdy, refuses to eat, drink, and/or lack of sleep. This has to do directly with Dravet Syndrome. Anything out of routine or his ordinary, changes not only his world, but ours as well. We were concerned with how Jack would do during Christmas l. 2019’s Christmas brought a seizure on Christmas Day evening & he became violent afterwards. This Christmas (2020) was a huge difference in the celebration of last year. We actually had to beg Jack to get out of bed, he didn’t want to wake up & didn’t until after 9am. Jack’s health has changed drastically since last year. He is more frail than ever. He fell several times Christmas Day interacting & doing things he normally doesn’t do all the while unaware of all the Santa gifts laying around the house. It really is sad to see the changes that have taken place with Jack over the last few months, but he always seems recover but the stretches are becoming longer.

I’ve blogged before about Santa Claus being the smartest, hardest working transgender human alive. Men just get all the credit & they don’t be doing nothing (in most cases)-excuse the slang, this is how me & my Mama actually talk! Why is this fictional character a male? In old movies & books, Santa is portrayed as a very hard working man. One that would put the Christmas tree up when he came, set all the toys up, play with the toys for a minute, & then off to the next house. Not saying men aren’t hard working, but whoever came up with the idea that Santa was a male was not right in the head. There are Daddy’s all over this world & I will go ahead & make the statement & say most Daddy’s never know what their children will be receiving from Santa until Christmas Day when the smartest, hardest working transgender Santa lays the gifts out. Fictional Santa never would roll his eyes about getting Christmas boxes down from the attic or sighing over stringing the lights! Our Christmas this past year was a little different from others. It was very calm & relaxed, a much welcomed experience. Holidays put such a stress on Jack both mentally & physically all due to Dravet, it’s one of the characteristics of the syndrome. Because of the anticipation Jack experiences with the arrival of Santa, he stopped eating & drinking. The times he did eat or drink, I had to feed him & hold the cup for him. How he survived that long period of time without proper nutrition amazes me. The willpower & resilience Jack has is something to be in awe of. Jack wasn’t wild, aggressive, nor sassy during Christmas. He checked out his stash of gifts, hung out with us during breakfast, played with the Power Ranger rare morpher Santa brought most of the day & soon retreated back to his room. It really was a pleasant day.

Here are a few highlights of what I think the best gifts the kids got. Coleman was gifted with home stuff. For those that don’t know, Coleman now lives around Winston Salem & has a job as a supervisor at a plant. You know you’re getting old when Santa brings you pots, pans, & kitchen towels (and I realize Santa visited a 20 year old-we do it for Jack). I thought I was doing good & got him a fancy charging bowl for his iPhone & a Roomba-no such luck. The boy already had them. Coleman is so hard to buy for. He’s like me, if he needs something, he buys it. Jack enjoyed all of his gifts with his shoes being one of his favorites. They are shoes made for special needs people that can’t tie or slip boots on. They zip all the way around & look like high top, lace up sneakers, they were a special request of his. Jodie gifted him Michael Buble cologne. Lawd, he has sprayed the world with that stuff. Lee & I are both very sensitive to smells, I rarely wear perfume & hate scented lotions-love them on other people just not myself. I am hating Michael Bubles guts right now. Upon entrance of our home, there is an overwhelming scent of cologne. Last night after pleading with Jack to stop spraying it, Jack went into mine & Lee’s bedroom after Lee was asleep & sprayed our bed down. I didn’t know it until I went to go to bed myself. I didn’t sleep all night because of the scent. I had to rewash the sheets I had just washed along with the comforter. We are going to pour it out tonight & put water in it!

Mama got Jack an Indian flute which was one of his requests. When the order came in, she got not one, not two, not three, but four flutes-this is starting to sound like an infomercial! She only ordered one & it must be a standard practice to send so many because the first one broke within hours, the second one broke the next day & Lee has glued it multiple times already. The third one will be given any day now I’m pretty sure. We love our 2am concerts by our new flautist!

The most love/hated gift anyone received outside of the cologne, was Ava’s big gift, a puppy! Now neither Lee nor myself are dog lovers. We just don’t have the time & I was chased by a pack of dobermans when I was young so I never cared for them. Ava has wanted a dog forever, but with our lifestyle with Jack & work, I never even considered entertaining the idea, plus, I certainly didn’t want to be cleaning up after something else. But with school being virtual this year & last year & Lee & I at work a large portion of the day, Ava needed something to help keep her company. I foolishly thought a dog would be perfect. She was gifted with a labradoodle. It would be fine if Jack acted like he did during Christmas, but that has changed drastically. As suspected after the holidays, Jack’s appetite kicked in & thirst came back. He has eaten a tremendous (think church homecoming-sized pot) of dumplings I made since Sunday night & today is Tuesday. They are gone, no one else dared to eat any. For the first few days, Jack didn’t care about the dog, even wanted Santa to come get it. Now that Jack’s energy has been restored, he is wild & the dog is wild, they are feeding off each other. Ava is getting aggravated & not able to enjoy the dog because Jack wants him in his room all the time & won’t allow us to disciple the dog when he does something wrong. I had a not so brilliant Santa moment! Jack is running through the house with the dog & running is not anything Jack needs to be doing.

The next most loved/hated Christmas gift is the one to myself. Seeing everyone make posts of their cute coffee bars, I thought I’d jump on the trend as well & set one up. I don’t like coffee but Lee & Ava do. Well, Jack has taken the coffee bar over as well. He makes it at 11pm, wants to drink it 24/7. I was hoping it would of turned into a blessing in helping to aid his problem with constipation, but it has not. I left the tags on the table…thank goodness, it’s going back ASAP!

Now that the holidays are over, Jack’s eating has improved greatly, his energy levels have replenished, & he is back being wild & out of sorts, & the worse part is, he has started back having more seizures. Once we made it through the last bout of him being in a constant all day long seizure with medication increases, he went nearly two months without any at all. I noticed a few days ago that the small seizures have slowly crept back & as I work on finishing this blog, he is in recovery from having a grand mal seizure. One more calamity I omitted, when it rains at the Berry household, it literally rains! Ava’s room is upstairs along with a 1/2 bath. Directly underneath the 1/2 bath is mine & Lee’s bedroom. Last week was such a crazy week for us at the Berry Patch trying to get everyone their vittles needed for their New Year’s meals, so Lee & I were both stressed, but a good stress. Lee calls me in a frantic tone just two days before New Year’s saying that Ava had flooded the upstairs bathroom & water was coming out from the ceiling fan in our downstairs bedroom onto our bed. I knew this had to be a sick joke-I was wrong! I get home to every towel we own on the deck wringing wet & a bucket to catch water in on our bed. There’s a very good reason as to why you should put your clothes up after folding them, they might get flooded! All the clean clothes that I had washed, hung out to dry, & then folded were soaked! We really can’t make this stuff up, there are so many bizarre tales that I could include in this blog, but I know you’ve probably lost interest by now. Any way, Christmas 2020 was great, 2021 is not going too well & we even ate the hog jowls, blackeye peas, pork loin, & collards! Just think what the year would be without the good luck meal! 🐷🐽🤡✍️🙏🎅🏻🙇🏼‍♀️🐶🐾☘️💦🥬💣🧨💊🚽🎁🧸💜🗯‼️🆘🆘🆘🍺☕️🍗🐓👎🏻👍💩😩🤬🤬🤬🤪

Author: dravetsyndromeblog

44 year old Mama of three kids, wife of a farmer, & business owner. View all posts by dravetsyndromeblog