Cry Pretty

I love the song Cry Pretty by Carrie Underwood, what I don’t love is knowing what living those lyrics are really like. What a week we’ve had! No sooner than I had literally just published my last blog post of “Satan’s Evil Spawn”, we had an event with Jack. Ava & I had just walked into the house, she from school, Jack’s caregiver was in his room with him. Ava & I were going to have a chill afternoon since it was raining. Our afternoon (we thought) was going to be a Christmas movie, snacks, & laid up on the couch bundled in our favorite blankies. That evening we had dinner plans with some family friends that were coming from out of town. Mama, Daddy, Lee, Ava, & myself were going to meet our friends at a restaurant two counties over. Of course those plans got blown out of the water by Jack. He can usually foresee when we make plans, I think he is related to Dion Warwick & has some psychic abilities. We never mention doing anything extra because he gets out of sorts, only about 25% of the time are our plans successful. The problem that occurred was so embarrassing & disappointing to me. Something yet again I thought we would never have to deal with. As Ava was preparing her snack for our relaxing afternoon, Jack had an explicative episode. That “cuss-ed” Elf on the Shelf left some Elf on the Shelf cereal the previous night. Jack had the cereal in his room, Ava wanted some. Jack finally relented sharing with Ava, but then he wanted some. After Ava fixed a bowl of cereal for him & delivered it to his bed, he told her he wanted milk, not cereal. When his caregiver & Ava both told him he requested cereal, not milk, he called them f***ing liars. My first thought was Jack could get violent if he’s getting this angry over milk & cereal. I immediately had Ava call Lee home to help in case he did get violent, cleared his room of everyone but myself & tried talking to him about different things to get his mind off what had transpired. Jack immediately started hitting his mouth with his hand, wondering if God would forgive him, & of course arguing that he was correct, not them.

Jack has never heard Lee nor myself cuss, ever-although there have plenty of times I would love to at him. This was not a behavior he learned at home, unfortunately, he learned such language on the chat rooms he was so heavily involved in at one time. It is so disheartening to know that this is something else that we may have to start dealing with now. I can’t tell you how much hearing Jack say that broke my heart. Now you may cuss on a daily & use the f word all the time, but I don’t. I have to be real mad & get really hurt to cuss, like the time I got a line-drive to the thigh while pitching a few years ago. Neither Lee nor myself have ever had any of the kids say terse words to us before, not the I hate you, you’re a terrible Mama/Daddy, nothing like that-although they may of wanted to. This was truly a shock to not only me, but Ava. I’ve got a 14 year old that is not introduced to this language in our home & I am not happy about that.

Over the last week, Jack hasn’t been eating or drinking at all yet again. This is a continuous cycle that has been a chronic issue for him over the last few years. He also hasn’t had (disgusting to discuss I know), a bowel movement in over three weeks. On top of that, he usually only urinates once a day, if that. He takes a handful of medications & supplements twice a day, the medication isn’t being properly processed by his body. It’s in the actions of bathroom visits that helps filter the toxins from the body. All those medications keep piling up & piling up with no where to go due to his limited potty visits, which leads me to wonder if that too attributes to his ill as a hornet nature. Many of you know Jack has had a lifetime of seizures, with his earlier years plagued with thousands & thousands of seizures, much of which were hundreds a day, he’s had nearly every seizure type there is. Seizures are so tricky, random, & strange. Did you know a seizure could be in the form a sneeze, cough, or laugh? It is not always the full body convulsing with unconsciousness you see on Grey’s Anatomy. I had been noticing Jack picking at his bedding for two days, appetite even more suppressed than usual, lack of fluid intake, fatigued, more irritable than usual, he was confused, speech was more garbled than usual, a delay in responses, & a strange look in his eye (some symptoms of those having a stroke). Years ago before one of the medications he takes that was developed strictly for Dravet patients, Jack often had NCSE which stands for non-convulsive status epilepticus, this is any type of on-going seizure that is not in convulsing form. NCSE in Jack’s case most often occurred after a grand mal seizure. He would repeatedly blink, drool, was semi-conscious. Once Jack began the medication developed for Dravet, those types of seizures were eliminated. When those seizures occurred, we would have to go to ER when Jack had those which was fairly often to break the seizure with rescue meds that home rescue meds could not. If we didn’t take him in for emergency treatment, the prolonged seizure would last hours or days. It’s been about 7 years since Jack has had an ER visit due to this type of seizure activity. I videoed Jack picking at his bedding after his ugly word outburst & asked fellow Dravet parent friends what they thought was going on. They all agreed with what I thought, NCSE. I thought he was in some type of seizure status, but it had been so long, that I completely forgot about NCSE. Only an EEG could confirm it, but I’m pretty sure he was in that state. I have been thinking he’s getting sick, so I started him on an antibiotic to help curtail any sickness that may be brewing. Between the elf on the shelf & whatever is going on with him internally, he is wiped out-he’s been falling asleep during the day & that is so out of characteristic for Jack. Although he hasn’t mentioned anything about being sick or not feeling well, I can tell he isn’t up to par. Going to the doctor is out of the question, I think he would flatly refuse, so I do the best I can to treat him at home. Below is the video of Jack messing with his bedding. What he is doing makes no sense & has no rhyme or reason.

Progress was made in the bowel department after I administered a laxative today. Thankfully, he is feeling better & has started back eating just a little more. For the past three days, he has only ingested two cups of applesauce & those had to be fed to him because he has been too weak to do it himself & also, so disinterested in eating that he didn’t want to do it himself. His eating for the last few weeks has been very little. I guess his tummy has been hurting from the backup that he hasn’t had an appetite. And Jack doesn’t have the sensors we do that tell us when we are hungry. Can you imagine living like this? It’s sort of like dealing with someone that is anorexic with the refusal to eat, then a bulemic when he does decide to eat (which is rare) because he purges on whatever he does decide to eat. There is so much going on just with him, that it will make your head spin. The only time I can get him to go to the doctor is once a year for his neurology checkup.

What Jack has done upset me beyond. When he acts ugly, it hurts me to the core. I get so depressed & down in the dumps when he gets violent or now talks ugly, that it can take me days to get over the depression bump that Jack’s actions leave on my heart & in my mind. His words and/or actions are repeated over & over in my head. I can remember each episode like it happened yesterday, none of the scars ever fade. Each time something goes wrong, I question what in the world I have done to be subjected to this type of punishment. This is why it is so important for anyone struggling with depression, difficult times, or issues at home to have outlets. It is those outlets that keep the mind healthier than what they would be. When I was a stay-at-home Mama & that was all I did, the depression from Jack’s situation stayed with me for weeks. I would go a week or more & not talk to anyone but the kids, my Mama, or Lee. A few years ago, Mama encouraged me to play in our local ladies softball league, this helped me tremendously. As a stay-at-Mama, I didn’t really have real friends, any connections, since I was so limited in what I was able to do, but now through softball, I’ve made so many friendships with people that I talk with several times a day. Before softball, I didn’t have any of that. Now I have The Berry Patch that I am able to manage on a full-time basis, people to help at home with Jack, softball, church friends & family. These are the things that keep me going. Otherwise, I would be curled up in a ball, never wearing makeup, or doing anything joyful. I may cry a little. My tears are often silent since I can’t show that type of emotion to Jack, but after a day & night of sadness, I’m back up on that saddle again hopeful for a better day tomorrow & just hope that one day I won’t have to cry pretty. On the brighter side, only 6 more days of elf hiding!

Author: dravetsyndromeblog

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

9 thoughts on “Cry Pretty”

  1. Amy th it s is your used to be and still is Aunt Jackie I had no idea. You don’t have to do this alone.im at the beach but my poo hone number I’s 910-280-2707 call me anytime day ou r night I know holly feels same but if you need me call and I’ll be there in 2 hours anytime I mean anytime day night holidays your still family to me always will be I l love ya’ll always will Jackie call no matter what!!!!!

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  2. Amy I want to “ugly cry” for y’all. I’m glad you have found outlets and I’m sure writing is therapeutic. You are an amazing woman and though it’s hard not to ask why me or what did I do, I am certain you did nothing wrong. Your story is giving strength to others.

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  3. Amy I had no idea what you go through each and every day!!! God is going to and does Bless you so richly!!! You are a wonderful beautiful person and I really love you 😍!!! God’s got this sugar!!!!!! Hold your beautiful head high!!!!

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  4. Thank you Amy for your transparency. I often say that telling your story not only helps others, but they help you too. I know that I’ve been through imaginable, but I pray that God continues to give you strength, wisdom and understanding as you go through your imaginable. Also God gives his toughest battles to his strongest warriors and you guys are stronger than the average. You could’ve given up and placed Jack in a facility to care for Jack (which a lot of those places abuse their patients) but you guys chose to keep him home and that speaks volumes because of the love that you have for Jack. I thought that I made it perfectly clear but I’ll say it again, I’m only a phone call away if you ever need me, just need to vent, cry and pray together etc. Hang in there Any, you’re oesn’t of the Greatest Mothers that I know. I love you all. Merry Christmas.

    Liked by 1 person

    1. I hate to give a daily one because it trains your bowels to depend on them, I think I going to give him one every four days.

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  5. I understand your pain and sacrifice. Taylor syndrome is not the level of Jacks but we deal with other things on a daily basis. CBD has eloped with the eating and bowel movements and also behavior issues. We use the oil and lotion. I pray that all our dravet kids will find the answers we need and freedom from this disease. Thanks for sharing.

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