Worry…

We are told it is a sin if we worry. Not only am a sinful person, I am especially sinful in this arena. This is something all good parents are guilty of no matter what the age of our children. Both Lee & myself have spent more than 20 years worrying relentlessly over our children, in particularly, Jack. I reported last week in a blog that Jack was in a bad cycle. He’s not been eating, not ingesting a lot of fluids, & he’s been sleeping a lot. Bed before 11pm, not waking til after 1pm the next day & that, is with a lot of work. It is so scary trying to wake him because he can be combative when awoken, he’s also been napping in the afternoons & evenings for a couple of hours . We’ve been in this stage before, but it never gets any easier, Lee & I both think each time around, the cycles last a little longer & become more difficult to break-this one sure has. Last Friday, he ate four apple slices, two of them he allowed me to put peanut butter on. I had to feed those to him because he said he didn’t feel like it. He didn’t eat anything else for another two days. It seems like the bad cycles which are also good cycles-I know that may not make sense to most of you, let me explain. It’s awful in that he is not getting nutrients, looks bad, feels bad, sleeps too much. It’s good because he is no problem whatsoever, his kind heart shines through no matter how bad he feels. When Jack is eating & sleeping on a regular schedule or pulling one of his all-nighters, he eats everything in the house (as long as it’s take-out lol), gets into internet trouble, & is an illbox. There are no in-betweens with Jack, it’s one extreme to the other. I would love for there to be a happy medium.

A week ago, Jack did something that I thought he might would have lasting damage. Note: the bad cycle had already started prior to this. It scared me to death. Jack is mischievous, always has been. He once pulled Coleman’s first tooth because Coleman was scared for it to come out. Jack had heard us talking about Coleman’s loose tooth, we would try to pull it & Coleman would cry hysterically, we didn’t get anywhere. Jack took matters into his own hands. Jack snuck into Coleman’s room at the age of four & yanked it out of Coleman’s head after he went to sleep. Coleman comes running down the hall covered in blood, we had no idea what had happened. Jack had happened! Looking back, it’s so very funny to us & one of my favorite stories about the boys growing up. Since Jack has gotten most of the attention his entire life due to his life threatening condition, he is very needy for companionship & attention. If my evenings aren’t spent in his room sitting with him, he is apt to do something foolish. One of his attention-seeking schemes is falling. In the past, he faked a seizure by fake falling & pretend jerking at one of Ava’s birthday parties. She was getting gifts & all the attention & he hated it. These stories are to show an outline of what kind of prankish behaviors he has. Fast forward to a few nights ago, Jack already had his nightly dose of meds. Some of the meds make him sleepy & he is already lethargic from not eating, so what he did was exasperated by himself to the nth degree. Jack runs through the house all the time, that is nothing new. On this night, I was in the kitchen by a little table we have in there when Jack came running from his room & into the kitchen when he threw himself over the table, flung his body backwards which was all on purpose at this point, but what he wasn’t expecting was the rolling chopping block table behind him. When he threw himself backwards, he hit the back of his head on the corner of the table which is metal & pointy & fell down. I had a ballgame that night at 8 & didn’t get home until late so I did not have the opportunity to spend any time with Jack as of that point because I had to take a shower as well. After he hit his head, Jack was out. He wasn’t knocked out, but he closed his eyes in a pretend sleep (which he does often as well) & ended up falling asleep while pretend sleeping. I was worried sick. I naturally thought the worst. Lee, Ava, & myself carried him to his bed & all I could do was pray & tell myself he was going to be okay. I worried he would have a head injury. Praise the Lord, two hours later, Jack woke up & started talking like everything was normal. I was still awake praying when he awakened. The Lord knew I needed to know he was okay before I could go to sleep.

We’ve tried enticing Jack for two weeks now with his favorite foods from hotdogs from Dixie Burger or their flounder plate, to happy meals, to Chinese food, but he just isn’t budging. Many Dravet patients have g-tubes as a result of a lack of nutrition, this would be a wonderful option for Jack, but he absolutely would not tolerate it or have it. This is one of the perils of having such an aware disabled child to care for. If Jack didn’t have behavior issues, we could take him to the doctor without problem, run labs as needed, everything that is currently complicated & difficult with Jack would be so much better. Over the last week, Jack entered a state called obtundation. Obtundation is a state of seizures that occurs pretty much all the time. For him, it is head tremors, eyes deviating, staring off, not to mention, he’s severely constipated. His refusal for care is heart breaking for Lee & myself. Think of your own child or loved one having a virus & not eating for a few days, how that breaks your heart. This has been going on for nearly two weeks now. I can sometimes bribe him into eating an applesauce or jello, but he needs fat. As I made some medication changes along with his doctor last night, I prayed over Jack that the Lord would help break the obtundation state of seizures with the increase in meds. I’ve also contacted his doctor about possible palliative care. I am hopeful that Jack will be a candidate for palliative care, hopeful they can provide in-home hydration that I feel sure will help him feel so much better when he enters bad cycles. Each time Jack allows me to feed him something, my heart swells, I pray with each spoonful of Jello that it will give him enough nourishment to make it through to the next day & that the next day, Jack will wake up famished.

As Jack lies in bed day after day cuddled up with his blue Care Bear bundled in blankets, I realize how fortunate I am to have been afforded the luxury of being able to stay home with Jack when needed. If I need Lee to be at the house, he’s home within minutes. As tortuous as some of the days have been, there is a silver lining in the knowledge that we did & will continue doing everything possible to care for all three of our kids. Watching Jack suffer over the last few weeks has been excruciatingly painful. Living with someone that is suffering is one of the hardest things we have yet to deal with. The pain we experience when Jack is violent is terrible. The heartache we feel when he is withdrawn & interacting with strangers & being scammed is different from what we experience when Jack is not physically well. It’s easy to dislike someone when they are being mean, vile & hateful, but when suffering enters, the emotions are totally different. I ask of each of my praying friends that you pray that Jack will wake up hungry again, that the obtundation seizure state will end, & the medication increase will be a smooth process for him. Thank you all for each prayer you’ve ever blessed us with, keep them coming.

This is Jack on Halloween as Tenderheart Care Bear. Halloween was difficult & different for him this year. Not only with the virus going on, but Jack was really weak & having a ton of seizures. Although he dressed up, he didn’t get to enjoy it & we only had three treat or treaters.

Author: dravetsyndromeblog

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