How was your morning? Probably a lot better than mine. I think mornings were created to be peaceful & relaxing. I have an image in mind of what a perfect morning should be. Waking up around 7:30, cooking a big breakfast for everyone & enjoying that breakfast outside listening to the birds, then head to The Berry Patch for an entire day of work. Our life is so far away from that it’s not even funny! Since the birth of Jack, a calm, peaceful morning has yet to occur. Coleman nor myself really care for breakfast, however, Ava does. Poor thing has to wait until Jack is awake & situated in his room before eating (more on that later) because if he hears noise, he’s up. What it is like to live a day in the life of our family? It’s not as cool as I try to make it seem on social media. Let’s face it, most of us are not going to post the negative, only the positive which is a good thing. Maybe you want to hear it, maybe you don’t & that’s fine too. Let me give you a run-down of our daily activities:
6:30am, Lee’s day starts. 8:30am, I awaken, but am held hostage in my room so Jack won’t hear me & wake up early; 9:30am Jack wakes. Coleman & Ava are still in their rooms behind a locked door because Jack may go upstairs & that’s never a good thing. When Jack wakes, he comes bounding out of his room slamming his door repeatedly, when he tires of that, he starts stomping through the house-to the point where knick-knacks start falling. He runs back to his room, but not before gouging his fingers in my stomach for a mere 5 minutes. No amount of talking him down from this act makes him stop. He likes to think he is a Tiger Sword Power Ranger & he is clawing at his victim. Shortly after a quick reprieve in his room, he’s back out again playing music as loud as possible & singing, following me wherever I may go. Now it’s 10:30am & I am just able to start doing what many were able to do hours ago. I’m late washing clothes, opening up the house, straightening the house, washing dishes from the previous night because Jack was being particularly aggravating. Once his medications kicks in, most days I’m given a few hours of complete & utter silence from Jack. He stays in his room for hours sitting on his bed on the computer or iPad. I want you to think about that for a second. There are days (although limited these days), this boy does not come out of his room for 10 hours. Can you imagine not having any physical limitations as far as walking is concerned & not getting out of the bed for over 10 hours straight & he voids only one time a day, everyday. Jack has gotten some better about wanting to have his bedroom door open, but a lot of the time he wants it shut. I sometimes go in his room & sit on his bed & think how sad of a life this would be for myself behind four walls. He is staring at some sort of screen for hours on end behind a closed door & tv off. Such a sad life for us to watch this, he doesn’t seem to be unhappy though. Jack goes through so many extremes. He is either extremely talkative or doesn’t murmur a word, either hyper or so subdued a house fire couldn’t get him up.
In the early afternoon hours, I really don’t see or hear much from Jack. I am able to do some catching up on my shows, reading, spending time with Coleman or Ava. Then around 7pm, I start with supper. We eat around 8-8:30pm because The Berry Patch doesn’t close until 8:30 every evening. Lee’s days are often 14 hours long. I know it’s a choice in what we do for living, but it’s really hard on Lee not being able to spend time with the kids, myself, & having the burden of working every single day from sun up to sun down & being the only provider for our family. When he gets in, he eats & goes to bed shortly thereafter & that is when Jack starts! He has vampire hours-I’m starting to wonder if vampires are real! You can set a timer to when he comes out of his room, 10:00pm every night & he is doing the same to me at 10pm that he was at 10am. Everyone retreats to his or her room because he’s so aggravating to us all, I’m left to deal with his antics.
10pm is a busy time for me. Most folks are getting ready for bed, I’m just getting started making cobblers or dipping chocolate covered strawberries for our business & Jack is distracting me & right in the middle of it. 10:45pm medication time. 11:15pm, Jack’s in the living room watching Blue’s Clues. When it goes off, he pretends he’s asleep. Why me Lord! I have to beg & plead for him to get up & go to his room. Finally, he goes after I make it into a race to see who can get there faster. Guess what? He’s wide awake! I close down the house & leave Jack in his room alone to let the medication work its magic (hopefully). 12:45am, the house phone rings-it’s Jack! He wants me to fix him something to drink. I take the drink & 15 minutes later, he’s asleep. Jack falls asleep every night with his computer on his lap, music going, iPad on. Cleaning off his bed a night is a chore, Power Ranger toys are piled up on the bed, all those electronics, the bed is just a mess. We were able to increase the dose of his sleeping pill which has helped with an earlier bedtime so much. However, I am having a difficult time getting to sleep earlier than 1:30am because of the 3am & sometimes later bedtimes he was having for close to a year. I’ve got to readjust somehow!
Jack finally falls asleep at 1:00am; 1:30am-Amy falls asleep;
How was your day? Lol
What is really sad, Ava has two friends over today, when they got here, I had to give them the rules. No talking downstairs because we don’t want Jack to come out. He would try to go out to the pool & terrorize them. They can only talk outside & upstairs. Now can you imagine what these preteen children must think. It breaks my heart & I know it does Ava’s that she won’t ever be able to have sleepovers with several girls at her house because of Jack. She & her friends will never be able to run freely through our house like girls do, make a mess in the kitchen, freeze their bras (do girls even do that any more), or have makeovers. Dravet has robbed our family so much & continues to do so everyday.
I get tired of the constant planning. If I have to go to the grocery store, post office, whatever, I’ve got to get someone to stay with Jack. I despise being on such a rigid time schedule depending on others to help me tend to Jack. I feel bad for inconveniencing my Mama & Daddy or Aunt Ruby while I run errands or work. I know they don’t mind, but it is distressing & almost embarrassing to keep asking. It’s always, let me hurry & do this so I can get back to house. Lee & I can’t go anywhere together unless it’s something really important. Everything I do is timed out. I get tired of that. No matter, that’s how it has to be for now. Enjoy life simple inconveniences such as breaking a glass, burning your toast, or even breaking a leg…I’d take those things any day! You never know when a hurricane will blow into your home.
Cruel & Unusual Circumstances 
Coleman & Ava are wonderful kids! You and Lee are doing a fantastic job in raising your kids. They are givers, compassionate, leaders, and so so kind. Amy, I don’t know how you do your daily tasks. You’re such a strong lady! I still pray for you and always will. I feel as though I say the same thing every time I comment. But, I truly mean it. Thank you for bringing “light” to Jack’s unknown illness and to your difficult days. I so wish I could do more to help you. Love y’all ♥️
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