Blue Christmas

Christmas is either a joyous season or a sad season, hopefully it was joyous for you, but for some, with the passing of loved ones or no family or friends around, it can be a tough holiday to get through. This Christmas season for me was a particularly Blue Christmas as Elvis so sweetly & sadly made into a melody. Christmas Eve felt different for me. I was iller than a hornet, really filled with anticipation of what the day could potentially bring. I wasn’t sure if Jack would show out or have a seizure, he didn’t-saving all of that for Christmas day. Christmas Eve went well if you consider worrying every single moment a great thing. Jack was sassy & demanding. At noon he ordered me to wash his bedding before Santa arrived. His request came too late in the day for this, if you’ve kept up with my blogs, you know I hangout all of our clothes & I have a “cuss-said” new washing machine that takes an hour or more for one load & the clothes would not be dry by dark. I somehow reasoned with him that it would be best to wait another day, miracles do happen! Jack’s main caregiver was able to stay with him while the rest of our family Christmas Eved at Mama & Daddy’s that evening. This isn’t the first Christmas we’ve celebrated with everyone excluding Jack, we’ve done this for the last few years. There is way too much going on to take Jack anywhere or have more than two visitors at our home at a time. Exclusion is a necessity sad to say. Nothing would make me any happier than to see our whole family have get-togethers & everything be normal. One thing I love to witness are families together & having a good time, the next thing I love to see are teenagers hanging out having good, clean fun. It always makes me sad for our family & for Jack knowing that he will never get to experience this. One time (and I mean one time only), Lee & I took all three of our kids & a family friend to Dairy Queen one Sunday evening. All four sat at a table together while Lee & I sat separately, we sat back & watched. Their togetherness, smiles, & laughter brought me so much joy. I think about that night often & wish there could be more.

All Christmas Eve day, Jack with his infinite amount of computer smarts found the number for the NORAD Santa Claus tracker. He called those people 500 times on the 24th questioning Santa’s whereabouts. I can’t believe they didn’t block his number! I was really worried about Christmas Eve/Day. I just knew Jack would fight sleep per his usual, but he drifted off fairly easily & stayed asleep until 7am. He woke us all up ready to see what the jolly old man left for him. Jack was so polite & cordial on Christmas day, using manners that I haven’t seen in a long time…there was a reason for this as I will explain later! Jack enjoyed his Christmas gifts, loving his Pokémon treasures the most. Not sure if Coleman was pleased or not, one of his gifts was a patio set for his apartment-getting old is no fun! One of Ava’s treasures was a suture kit-she aspires to work in the medical field. One of the best gifts I received was the return of the Elf on the Shelf into his box!

As an 18 year old, my idol was Martha Stewart. I looked forward to watching her show everyday & hearing her famous quote of “it’s a good thing” after a particularly beautiful masterpiece whether a flower arrangement or a perfectly prepared panna cotta. Martha was the one who taught me what a boning tool was-Google it, it’s a real thing! I even tried to mimic her look around the age of 22 with her hairstyle.

As Lee & I were planning our wedding, Kmart came out with their line of Martha Stewart home-goods, I was over the moon. Our bedding & bath linens were all Martha’s. Martha taught me a thing or two about cooking, organizing, horticulture, & she helped develop my love for the perfect denim or white blouse (which I’m still on the hunt for). There were segments of her show that I always disked though, the crafting & sewing parts. I have never been a crafter or seamstress, never will. My Mama & sister can craft up anything & can draw beautifully, Mama can also sew like a Vietnamese sweat shop worker. I on the other hand can not do either. What a disappointment! I tried to keep my house like Martha would, neat without lots of extras. My ideas of decor are a few nice pieces, an unusual lamp, & photographs of the kids I have taken through the years. I don’t like “stuff” just to have it. The decor in our home has to be meaningful and/or beautiful to me. As I watched Martha over the years & into the early years of our marriage, I planned on entertaining just as she did with family & friends. From preparing an elaborate meal or a party with heavy hors d’oveures with libations, that was going to be a reality for me I just knew it! One of my biggest dreams was the purchase of a Christmas party outfit to wear at said party. The said party would of been an elegant soiree thrown at our home. Of course, this became a fictitious joke in our family as I was only able to host one Christmas Eve party at our home & that was when Coleman was two. Jack, age one had recently began the ketogenic diet as treatment for his seizure disorder, the diet was working perfectly & our lives were calm for the moment & that was my one opportunity to throw a party. I loved entertaining & hosting this one party! Now, when Mama, Jodie, & myself are out shopping & see something sparkly (we are all fools for sparkle) we deem that particular garment as our “Christmas party” outfit, which needless to say has never came true! We have always shown up at Mama’s for Christmas Eve & Christmas day in our regular clothes such as blue jeans & perhaps a festive red sweater, this year my sweater was a fancy cowl neck camo print & you can always count on Lee in his Berry Patch shirt. I don’t even dream of a Christmas party outfit any more. Sequins still put me in a trance, but they no longer hold the magic they once did for me since I know this is “party” will never happen.

Back to reality, Christmas Day was actually easy, but we experienced the calm before the storm. Jack was extremely well behaved the whole day, amazingly so, using manners we hadn’t seen in quite sometime. Later that afternoon, we all went to Mama & Daddy’s for Christmas dinner, leaving Jack behind with his caregiver yet again. We had a great meal & played Pictionary, what a fun time we had with my sisters family & ours. Lee & Ava went home separately since they go to bed early & Jodie followed behind to take Jack his Christmas gifts from her. While Jack & Jodie were visiting, Jack had a seizure. He’s been way overdue for a big seizure as I call them, a full on tonic clonic convulsing one. I find the more big seizures Jack has, the better he behaves in the long run & the better he eats. The seizure builds & builds that it makes him so crabby & causes him to have a lack of appetite as well. As I was on my way home to see about Jack during the seizure, I prayed that he would not become violent afterward since that is a new symptom we have unfortunately seen this year. He did in fact do just that. Ava was frantic when she called me as I was about to pull into the house. She told me Jack had punched Lee while Lee was trying to get Jack up from the floor. Violence in the postictial stage (after a seizure) can be an occurrence-wouldn’t you know it would be just our luck! After getting Jack to his bedroom, no further than the floor, he acted like he was going to become aggressive again. So I did what any woman does prior to a physical alteration, I prayed & took off my earrings. Dazed & confused from the seizure, I was able to convince Jack that he needed to let me help him onto the bed which meant me picking him straight up off the floor by myself onto the bed. My back paid for that the next day. I called Jack’s caregiver & Lee’s aunt & uncle to come over in case we needed backup in the event of another violent outburst. Watching vigil & scared to death at the same time, Jack awakened in a good mood with no recollection of the events that had transpired. He took his evening meds & was soon back to sleep, I thought he was going to have a good night, I was wrong! A few hours after going to sleep in his own bed, Jack came & got into ours-I had not even been asleep yet. I didn’t sleep Christmas Eve night due to getting Santa stuff ready nor Christmas Day night due to Jack getting in our bed. He thrashed & jerked all night long, even punching me in the head several times. Finally at 4am, Lee & I got out of our bed & went into the living room where we waited wide awake & wondered if Jack was really asleep or planning an attack. Thankfully, he was really asleep & slept until noon. Lee had to leave to check on Berry Patch stuff, I was laying on the couch with the remote in one hand & mace in the other. What a terribly awful way to live.

The rest of our holiday week wasn’t that bad. Jack is currently on an eating binge & eating anywhere from 8-12 fried eggs per day on bread with extra mayo. With this eating binge, I know there is a growth spurt occurring. His medications are being metabolized differently now that his appetite has kicked up. The myoclonic seizures that once plagued his every moment of the day & night have returned. These types of seizures for Jack involve his head dropping & upper body losing control for a split second. Imagine if you were falling & you catch yourself, that’s what it looks like. For the first time ever, Jack has started noticing his body doing this. He has never consciously felt a seizure that I am aware of. I didn’t tell him what it was, I explained that he was probably cold because he can be very dramatic-not downplaying the seizures because they are very scary to us. I can’t fathom what his brain & body must feel like. So then there’s that statement. You’ve got someone with a mental & physical disorder as severe as Jack’s, how can you not blame his poor brain for doing crazy things, especially when he doesn’t have reasoning skills nor understands his condition at all. Now with the old seizures returning, Jack is going through a medication increase which is scary because the side effects of more meds is not “a good thing”. Many Dravet parents say they see negative behavioral changes during this type of increase, but also with the increased seizures comes an increase in poor behaviors so it’s a damned if you do/damned if you don’t situation. It has always been a strange phenomenon to me as to why Jack is so nice & kind the day of a seizure. Everything is please, thank you, can I help you, he is so very complex, then as a seizure builds, he can be so mean & hateful weeks prior to it. Jack also had another seizure this week, he went months without any big seizures & he’s now had two in the last week. Thank goodness he did not get physical after it, I had a whole team praying for us as soon as he came out of the seizure.

Of all the things Martha taught me, she never taught me how to deal with what we have been going through for 18 years. I thought I was destined to be so much like Martha. My Martha Stewart coffee table book has become a distant memory that hasn’t been opened in about 18 years. The life I thought I would be leading is also a memory of yesteryear. Maybe “it’s a good thing” I didn’t follow Martha so closely as she ended up in jail-although jail sounds like a better option than the proverbial jail I’m living. Martha made a comeback in a big way after her time in orange. She & Snoop Dog have a hit show that I don’t ever miss! Perhaps I’ve got a big comeback headed my way!

I know I could protect Ava with everything in me if need be, but if you think it could potentially actually kill you, then it’s time to know when to fold ’em. Maybe that’s why this Christmas felt so different for me, in the back of my mind, it felt like this would be the last time all three kids would be under the same roof at Christmas. Where Jack’s roof will be, I don’t know. Calls have already been put into place. The one thing that has held us back from exploring homes other than the obvious of not wanting to relinquish care of Jack, is getting psychological testing. I can’t get him to the doctors office to have the testing performed. The testing allows the social worker to guide us to the type of home Jack would need to have placement. Luckily, a friend has put me in contact with someone that is willing to come out to the house & we can pay him privately to test Jack. The endless array of paperwork will soon begin, the countless questions from healthcare professionals will start, the pit in my stomach formed already. How will this whole scenario go down plays in my head 24/7. My mind is never free. Every thought revolves around Jack. Every decision I make from going to the grocery store to planning a night out involves thinking about who will be here with him, who can I call for backup if something goes wrong, even my dreams are all of Jack. I know other people have dealt with this type of situation, I know there are other people in more dire need than us, but the knowledge of these facts does not make moving forward any easier. We’ve done the best we can, but Jack is stronger than four men combined. That’s right, my 5’9, 125lb. bedridden fella could whoop any mans tail. I try to envision a life with Jack in another home, I can not. It hurts my heart to know he might not be a permanent being as I walk past his room everyday. Will he ever speak to us again when & if this move occurs. The what-ifs in this situation are killing me. This whole ordeal feels like mourning a person that is still with us. Life may be safer, Ava will feel more secure, but thinking of someone else caring for someone I have devoted my heart, my safety, & my soul for every single day since birth is crushing. Knowing that there are people that are not going to treat him well is also another concern. I want to be like my Mama & Daddy so bad, I just want to go home & watch Andy Griffith & chill, this is all too, too much to deal with. This is “not a good thing”.

Author: dravetsyndromeblog

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