Update on Jack

There is no cute, witty title for this blog, only as update on Jack. As you are tucked away in your bed, body preparing for the next day, my day has just begun. Jack has been on a mixed up schedule as of late, similar to that of a newborn with his days & nights confused. He is sleeping a lot again, not eating enough to keep a bird alive, & not drinking much either. He’s also been very irritable as well, much of that stemming from the lack of adequate nutrients. Some days the most he eats is a cup of applesauce & jello. To say it has been a stressful few weeks is an understatement. His wants & demands are definitely a struggle, wanting me 24/7. What makes matters so bad, he refuses to go to the doctor & be checked. Life was so much easier when he was tiny & I could physically pick him up & load him in the car. Compliant he is not.

Jack went to sleep Monday evening around 7, he tossed & turned, slept rough for a while & finally got settled in for a restful slumber a few hours later. I didn’t try to wake him in hopes that he would sleep through the night, but I knew what happen & it did. For once the house was turned down by 12:30, all my tooth care (which I’m fanatical about) done, & I settled in in bed reading when I hear Jack puttering about a few minutes later. Which was actually fine with me. I prayed hard Monday evening. I prayed that Jack would turn around, that when he woke his thirst & hunger would be restored as well as his spirit. And that’s exactly what happened. Jack wanted to eat! He ate 1/2 a can of chicken & rice soup, a pack of Ramen noodles, & drank two little Cokes. Was I mad that I was boiling water at 12:45am, heck no, I was elated! Jack & I hung out as I fed him his meals & watched Friends. I’m so thankful God answered my prayers in real time. So often prayers are answered in God’s time, but He knew this was a necessary request. Jack drifted off to sleep close to 2am, I prayed that he would sleep soundly & awaken with a smile on his face & doesn’t sleep all morning & into the afternoon like he has been doing for about two months now. By the time Jack awakens every afternoon, it is way past time for me to leave the house for the day, but I have to stay til he is up to see what kind of mood we are going to have to deal with for the day. Medication refusals are something else we are having to deal with again. I get why he hates taking meds. He has to do it every single day, twice a day & it’s a lot. Jack has always been a fella that is all or nothing, so he takes all of his meds in one swallow-never understood how he can do that! So now instead of him taking his meds when approached, he uses different things as a mode of control. Like he’ll take them if I make him laugh, which he never does, he’ll take them if I make his arm better from where he fell which I obviously can’t-things that are unobtainable, undoable. It takes a lot of bartering, begging, pleading, praying to get him to take his medications & there are some days he flat out refuses. Everything we try to get him to do comes with a stipulation. A friend of ours brought Jack a bunch of fatback, she makes the absolute best there ever has been & Jack loves it. When I offered him some, he told me only if he had a squeeze-bottle Fiji water. I don’t know of any place in the county that sells it in a squeeze-bottle. Where I am going with this, he is controlling the situation by giving an unreasonable request that he knows can’t be fulfilled just to get out of eating & even if I could, he still wouldn’t eat it.

What I think is wrong with Jack this time, is he is depressed although I can’t be 100% certain. He is subject to depression even though he doesn’t know what it is. You all know the troubles we’ve had with Jack communicating with strangers online & Jack hasn’t had any interaction at all with anyone online in almost two months. He has been anticipating the arrival of Santa & the confounded Elf on the Shelf so badly that he had truly avoided his phone most of the time he is awake. I guess he figures he needs to stop cold turkey in order for Santa to come visit! This has resulted in him sleeping too much, not eating or drinking, & being very blah. His only forms of entertainment are the little tv he will watch, clipping his nails excessively & picking his lips which he has ruined both, both are a bloody mess most of the time. We are between a rock & a hard place with Jack a lot of the time. At least when he is busy on his phone, he has an appetite & is energetic.

Now please don’t get me wrong, I think I am misunderstood in some of the blogs I write. For years, people encouraged me to write about Jack’s story so they can keep up with him. I only write the gospel & the gospel is not always pretty, heartbreaking even at times. People that criticize me saying that I am complaining about Jack have it all wrong. Would I rather he of led a life seizure -free, wonderful behavior, be medication-free, be suffer-free? 1,000% yes! But none of those things have been true for Jack, ever. And when I write about our/his struggles, it is for no other reason than to update the folks that want to know & so that our praying friends & family can help us pray for him. For anyone to think I could not love any of my children only makes them a sick individual. If there weren’t any true, unadulterated love for Jack, I would have thrown in the towel a long, long time ago. Trying to be a fair parent to all three, four if you include Lee, be a good daughter, running your own business, making food review videos & more, is a hard task. I make mistakes often, but I have been the best mother possible to Jack & hopefully one day, all three will be in agreeance. Only those that have had personal experience raising or caregiving a special needs person will truly understand. If you will all join our family in prayer for Jack, it would really be appreciated. Please pray that his appetite & thirst will be restored, that Jack will become more energetic, & the light will return to his eyes. Thank you all! 💜💜💜

Author: dravetsyndromeblog

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