Confessions of the sleep deprived

If you have a healthy child & you don’t already know it, you are blessed. Now I love Facebook. I love seeing pictures of friends kids smiling, playing, interacting with other children, it’s truly a wonderful sight, but it also hurts. We rarely got that gift with Jack. Seizures were always at the forefront, stopping any sort of fun, extra activity we tried to have as a family or just having fun being a kid. Jack could jump on a trampoline for ten seconds & boom, a seizure would strike. Had to get rid of the trampoline. He would have seizures at VBS, had to quit going. He would have seizures during family gatherings, had to limit those. Have seizures during every birthday party he ever went to, had to stop going to celebrations. When the kids were smaller, riding bikes was not something they could do much of because the exertion it took to ride one induced seizures. The normal everyday occurrences that we all have taken and/or take for granted, had or have to be shut down for Jack, & that also meant a division in the family. Either Lee or myself would stay home with Jack & the other would take Coleman & Ava here or there. Rarely has there been any unity with the five of us. If so, it’s at Christmas & we are all walking on eggshells even then.

Most of you know Jack recently celebrated his 20th birthday. Jack is the type of person that starts planning his next birthday the day after his special day. I felt like the excitement of his day of birth was contributing to his refusal of food & liquid, much like what happened Christmas of last year. He was so anxious & worried about what every single person in the family was going to get him, it worked him into a big ole knot. Though it doesn’t look like it from the outside, one of the characteristics of Dravet is not being able to properly handle excitement like typical people. Couple that with severe constipation from refusal to eat, drink, & take his medication, it’s a recipe for disaster. Jack has zero reasoning skills, so I can’t sit down & talk to him about the damage he is doing to his body, although I have tried. Come hell or high water, Jack was going to Chucke Cheese to celebrate his birthday. Picture trying to take an already fragile human to a game room, but imagine taking a fragile human that hasn’t eaten or drank anything of significance in weeks, nor pooped. It was awful. Jack couldn’t hold his head up for nothing. Being dehydrated causes low pressure. Low blood pressure causes fatigue & other things. Jack could not hold his head up, couldn’t talk loud, did not interact with any games. We have celebrated countless times at CC & each time we have always had to pry Jack away from the games to get him out of that place. This time it was rather easy to get him to leave because he was so tired. He got in the car & crashed. He slept the whole way home, Lee had to carry him inside the house, he slept all day & evening, just completely wiped out. The next day, I felt sure he would be hospitalized soon. Thankfully, Jack slowly started to come around the day after his birthday. He asked for drink, asked for things to eat & ate them. What a relief! I had already sunk into a deep depression thinking about going back to that hospital under such terrible restrictions with Covid. I mean I was down. I made myself sick with worry because I knew I would be the one to stay with Jack & not be able to leave for a breather since the hospital has become more locked down with the increased number of Covid. Doing that alone with Jack is so stressful but only because he can be extremely uncooperative & violent.

Jack has been eating, not a ton like he has during his other extremes, but enough to keep him home. There is still a HUGE resistance to taking his digestive medicine, I am praying for a bowel movement so big we have to call the plumbers to come unstop the line! Jack has still got his days & nights mixed up, hugely. As I work on this blog, I am watching him sleep. He fell asleep around 5pm & is still asleep at 12:45am. I am up because he typically awakens around 1:30am when he sleeps like this & he needs his seizure meds particularly because he didn’t have his day dose, refused to take them. He woke up one morning at 5am, didn’t go to bed til 2am & stayed up until 11:30am only to go back to sleep. Reminds me of a babys/toddlers schedule so much. Only this go round, I am much older & iller to have this kind of lack of sleep. If I don’t get a decent amount of sleep (at least five hours), my heart goes crazy & I have been feeling it last week & this week. I have a minor issue of mitral valve prolapse, nothing too serious, but inadequate sleep causes me to have extra heartbeats as well as tachycardia.

Speaking of hearts, how many heart attacks can one have before they fall over dead? About a month ago, it was the blind falling in our bedroom that made Lee & I think someone had busted the window out at 3:30am. We were completely skeered too death! The last one happened just a few nights ago. Ava has something called cyclical vomiting, think of it like having the symptoms of a migraine without the headache, vomiting spells & severely upset stomach. She’s had it for years, took an episode of Grey’s Anatomy to figure it out (literally) & a doc at Chapel Hill. We thought she was outgrowing it, until she gave Lee & myself our most recent heart attack & I’m not even lying. I am an organ donor, if anyone gets my heart, they are going to be getting a strong one or a worn out one, 50/50 shot! At 3:30am (the witching hour in our home), I heard a murderous scream from upstairs, Ava was hollering my name. Lee & I jumped up thinking someone was in the house or knocking on the door. I ran upstairs & Ava was having a spell. After tending to her, Lee told me he twisted his ankle getting out of bed, then ran into a drawer he opened. This is a wild place to live! I was recently called a Karen & self-absorbed for complaining about my neighbors barking dogs that we’ve been forced to deal with all summer long & told by this person I needed to sleep more which is ironic because it’s her dogs that are keeping me from doing just that. This only adds to the list of wildness that I am surrounded by.

She also told me I thought I was the only one with daily struggles which is just not true. I know the struggles a certain friend has with her job, various friends with a multitude of illness and/or hardships, the struggles a friend has with the loss of her son. How any of that is relevant to her dogs barking I don’t understand. I know that our struggles with Jack are not the only ones in the world, I’m merely a select few that chooses to write about them. Sometimes strange, funny, sad or all of the above. I wish I didn’t have stories to write about. I want to not have struggles, but the reality is we all have them, big or small. Struggles are relative, but struggles create courage. Our family has had to face some of the most unimaginable things ever, but the one blessing I pray each of them gather from the stress of our lives is the gift of courage. If we don’t have courage, then we no longer have drive. My drive looks different everyday depending on what has gone on at work or with Jack. Some days my drive looks like this, an unmade bed. 99% of the time, I make our bed, but every now & then, I can’t muster the energy to do that little thing. It takes no time at all & has always been a priority of mine as an adult. Makes me feel better, sets the tone for the day. On the days I can’t, I shut down, I am depressed, but thankfully I have courage & soon gonna have an air horn 🐶🐶🐶!

Author: dravetsyndromeblog

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

4 thoughts on “Confessions of the sleep deprived”

  1. I can only read and try to imagine what life is like for you and Lee but I know it’s nothing compared to what you both deal with. I pray for you both to have strength and for Jack as well! You’re a hero to me…and Lee but I know as a woman and a mother I think we struggle more because we carry these babies and it’s just in our genes to worry more and to nurture our kids and everyone we love! ❤️ Stay strong girl…God has you in his hands!

    Liked by 1 person

  2. So sorry your days and nights don’t seem to have any time for you and your husband to just relax. Your blog is so eye opening and heart felt. Wish you did not have a need for a blog, but am thankful that you write and share what it is like. I had not heard of Dravet Syndrome until I began reading your very well written and informative writings. Thank you for taking time to write, as I try to understand and wishing so much I or someone could help you. God Bless you. I don’t know many people, myself included, who could be as strong as you. Bless your heart.

    Liked by 1 person

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