Hanging by a thread

When one gets thrown a punch, it seems as though the punches keep being thrown for a while-at least in my experience. Regardless, one must roll with the punches. Frustration with life seems to attack Lee & myself often. Running our own business is a challenge in itself, but we are so grateful & thankful for the nearness of our business to our home, the folks that help us, & the flexibility we are able to have as far as tending to Jack goes. Jack is so very needy & demanding that it is hard to see the rainbow over the clouds. As I reported in my previous blog, which was more of a comedic tale, Jack is once again in another bad cycle, all stemming from constipation. He barely eats anything at all. His hydration nurse tested positive for Covid about two weeks ago & he hasn’t been able to get that nourishment, which has made more of a negative impact than I would like. I am still on a constant quest to find something that will help Jack poop regularly. The meds they gave him from UNC, he hates with a passion & I get it. It is a huge dose of an unpleasant liquid. Jack knows if we try to mix it with juice or food, he absolutely refuses to take it. When he poops, you’d think we won the lottery. I never would of thought my life would revolve around the worries of whether someone is regular or not. But here I am! I didn’t realize until last year that being stopped up causes fatigue, irritably & that’s what we are dealing with along with a severe lack of appetite. He was at least drinking several cups of whole milk a day & Fiji water (remember only the best for Hugh Hefner). Me, I drink water out of a spigot! His water must be from the finest, most expensive reservoir on earth! The drinking has tapered off as well.

The peculiarities of Jack are very hard to deal with. Hugh recently wanted a Smart Water, these can be purchased at our local Dollar General, but it could not be a regular Smart Water. It had to be the bottle with a squeeze top, we got lucky that our small town had such! He took a liking to this bottle & actually drank several full bottles of water out of it in one day. A few nights ago, Jack wanted milk in the special squeeze top bottle-of course it was 1am when he made his request. The blooming nozzle would not come out so I poured the milk into the bottle without spilling it, surprisingly. I got the funnel out but it was slow go, I gave him a partly full bottle of milk & I knew he was going to complain about it. When I handed him the milk, he said the very thing I knew he would, “this looks like the amount you would give a pet”. First off, he wasn’t wrong, but at 1am, I was in no mood. He demanded for me to wake Lee so he could get the top off. Most children you could reason with, not this one. He’s as hard-headed as they come! So I walk into our pitch black bedroom & wake Lee to open the sacred bottle. Knowing full well what would happen when I was finally able to fill the bottle up with milk, Jack did not drink any of it & not much makes me madder than waste. When I went to close the living room & kitchen down for the night, Jack went & woke Lee yet again to tell him thank you for opening the bottle. Not only is he hard-headed, he is kind as well, but at that hour, we were both too annoyed to be thankful for that moment.

Jack’s farm bottle as he referred to it

As Jack falls into yet another bad cycle, he sleeps too much during what are most folks awake hours & then is awake during what are most peoples snoozing hours. All this means, I am awake during normal awake hours & awake during sleep hours as well. I honest to goodness this past week have felt like what the walking dead look like on the outside, on the inside. Two nights in a row I only was afforded 3.5 hours each night. In this difficult cycle he is in also brings attitude. He’s had a BK Whopper warmed up countless times that he has been trying to eat for two days now. I try to stay on top of him & encourage him to eat & drink through the day & night. This is a daunting task, so nerve racking. Jack has recently gotten into Tom Brady & collecting NFL stickers to put in a book he bought from GameStop. This was considered a blessing to me because it is something positive & harmless…or so I thought. Y’all know I am not a girly girl, my nails are still trying to recover from the awful gel nail hell I went through back in early September, plus I like to keep my nails super short. If I see a speck of dirt under my nails, I feel so dirty. The stickers are so aggravating to peel off & of course Jack wouldn’t lift a finger to do this on his own. Everything he does, he MUST have someone else involved that he can boss around & control. As I’m trying to peel of the stickers, I remind Jack to eat. After I did a few (because I was annoyed trying to peel them off without any fingernails to help), I told him I would do the rest after he finished his hamburger. He shouted at me & said in his best demon voice “you’re gonna make me upset”! This was a warning. If I had not gone back & finished the rest of the football stickers upon Hitler’s orders, there is no telling what he would of done-truly. I really prefer Hugh Hefner over Hitler any day!

I have 1/2 moon indentations on my nails from my first & only manicure experience.

What is really frustrating to us is the running we do to appease Jack. The Whopper he had been working on for two days was sitting on his lap when he saw a Taco Bell commercial. He called me while the burger sat in front of him & wanted me to get him three tacos. Of course I did thinking this would be the magic thing to get him to eat, he didn’t. On Sunday mornings, Lee buys our employees breakfast every Sunday. It’s a little treat to reward them for working all week. He usually would get Jack a bowl of grits & a gravy biscuit, but most of the time, they would go bad because he had no appetite. Well Lee finally stopped buying breakfast on Sundays for Jack since it was a waste of money. This past Sunday, Jack demanded a gravy biscuit. Lee was already home, it was lunch time for us by the time Jack awakened. To keep Jack happy, Lee went & bought some biscuits from the grocery store & a can of gravy, assembled it all at the Berry Patch, delivered to Jack. He ate about 1/4 & never touched the rest. Our refrigerator looks like I don’t know what. There is nowhere to put anything or get something out without the pyramid of Jack’s leftovers & opened drinks Jack never finishes tumbling out. The foul language we use when opening that fridge is shameful! We are scared to throw anything out in a timely manner because he has been known to get very upset over his food not being in there.

The pyramid of food stacked, we say a quick prayer before opening our fridge that nothing falls out.

Jack’s peculiarities are vast. We don’t cut his food unless instructed, we ask what kind of dish he would like it in, what kind of cup is extremely important also. Last night I was getting him some cheese dip that he requested, put it in a little glass dish & I was chastised for that. He said he was an adult & didn’t want it in glass. I said there is nothing more adult than a glass dish! This fella! My writing is only venting & sharing with those that are interested in Jack’s condition. People will absolutely ruin anything if you let them. I’ve had people criticize my honesty multiple times since I started writing about Jack & his condition. I feel like people needed to know about Dravet & what all it actually entails for him & us. A large majority of people thought I stayed at home all day doing nothing, although it’s not important what people think of me, it still hurt me to the core. This has not been a great day. Just this evening, I hit a family’s dog, it could not of been helped, but I sure did feel bad. It was a reminder to me how quickly life can change. We know this better than most. When Jack is hanging on by a thread, I often wonder how in the world does he continue. That child was built with more resilience than anyone I have ever known. There is a lot of studying going on in the gene world of Dravet currently, I think they need to study what makes these kids so strong. They truly go through more than any diagnosis I have ever heard of. I pray that Jack’s thread will turn into an unbreakable chain, one that will help him get to the point that he can enjoy life again. I’ve been in communication with several older Dravet parents recently & many see the same issues we do in Jack. Loss of zest for life, low energy. Is it the progression of Dravet or a realization that they are unable to lead the same life as their siblings or other able-bodied people causing depression? I’m going with the progression of Dravet. Ava just turned 16 last week & had a great party. Even though we smile, our hearts are never fully happy because Jack is never able to attend family functions. I love to take pictures as you probably already know if you are a Facebook friend of mine, I feel so empty snapping memories when Jack can’t complete the circle. I have accepted it, but it doesn’t make it any easier. Pray that Jack’s thread will turn into a steel chain, thank you each for your love, prayers, & concern.

Author: dravetsyndromeblog

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

2 thoughts on “Hanging by a thread”

  1. Amy, I pray daily for Jack. Asking God to touch him with his healing n loving hands. I lift you up for Gods unbounding n everlasting mercies n graces, to me you are an angel for all you endure. Some people are heartless an understand nothing. Ignore these kind of people. May your days get easier, God bless you today n always. Kaye

    Liked by 1 person

  2. prayers for all, especially a strong chain. Also as I read about the stickers a small seam ripper might be helpful, since you have “no nails”.

    Liked by 1 person

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