I am outdone, I have met my match. My match would be Jack. I get so very annoyed & irritated with him. I know he can’t help it, but that doesn’t make our dealings with him any easier. It baffles me how he doesn’t have any urges to drink any form of liquid for days on end. Although the hydration therapy has helped some with Jack’s energy level, it hasn’t restored his need for thirst, although it has helped with his hunger cravings slightly. I would like to be a 45 year old runaway & I’m being dead serious, but then I think about what the consequences would be & I think better of that option. Poor Lee would have to become me & that is something that even Bruce Jenner isn’t able to do! The daily struggles of trying to get Jack to sleep, trying to wake him, trying to keep him awake, getting him to take his medications, trying to beg, plead, deal with him to get him to eat & drink even the tiniest of morsels is becoming more than I can handle mentally. When I worked at the hospital years ago, I used to have to go to the psychiatric unit to do EKG’s, I thought it was a creepy place, now, it doesn’t sound like a bad place to go! If I even tried to express in writing what a typical day has turned into with Jack, I would be unable to convey the extremes. Not meaning to sound boastful, but we literally bend over backwards everyday to try to accommodate him so that he may do any of the above things listed. The lengths we go through each & every single day are unimaginable. I’ve always said even Steven Spielberg couldn’t make up a story like ours & it just absolutely makes me sick that our lives have come to this. Jack will never understand what I have go through to ensure he doesn’t get into an altercation with us. He’ll never understand the money we have invested in him on a daily basis to keep the peace. He’ll never know the hours upon hours I have spent trying to research things that might help this condition or that condition. The amount of reading I have poured into my brain to try to better understand him or help him. The fights I have had to go through with Social Security-the harassment from that office alone is worth a lawsuit, the phone court cases I have had to do to get insurance to pay for his medication, that damn elf that leaves special surprises throughout the year to try to entice him to eat. The list is endless. It now feels like I have done all of this for nothing. I don’t want it to feel that way, but it does.

As a parent of a severely disabled mentally & physically child, you never get a vacation, a relaxing moment, or peace. I guess this is a woe is me blog. Will I be admitted to a psych unit? Doubtful, but who knows. I do try to make the best of our situation, but it gets to be too much when you have a child that will not give an inch. This is a rundown of Tuesday & some of Wednesday:

11:30pm Monday, Jack goes to sleep without taking medications.

3am Tuesday just a few hours later, Jack wakes up. It’s too late to give him his medications, plus, I’ve only been asleep around an hour because Jack typically wakes up around 1:30am when he goes to sleep early. He did not, waited til 3am. Played with his guitar & on phone. He was up til around 8am, that’s when he hollered for me because he was falling off the bed. Had to go put him back on it.

8:30am, both Jack & myself fell back asleep. I didn’t wake til 11am (which I hate sleeping that late), he didn’t wake until 2:30pm & that was with begging & pleading. Meds didn’t get taken til 3pm & that’s very late. Ideally the meds needs to be taken at 10 or 11am & this is because he is on an ADHD medication that impacts sleep in a negative manner if taken to late.

3pm, wants Pekin Wok (Chinese). When I go to town to get supplies for the Berry Patch, I was going to pickup food. Just my luck, the restaurant closes on Tuesdays now, I guess yet another casualty of Covid. I had an appointment in Moore County at 4:30 so I just said I would get food there. After my appointment & running a few errands, it is discovered that no one in Southern Pines/Aberdeen (the area I am in) serve the Chinese food Jack is requesting, so I have to go back to the other side of town again to get this food & boy was it expensive-$70 worth. I come home, give him the food, he eats NOTHING! This truly makes me angry. Lee & I work so hard to make a living & Jack wastes so much of it. Case in point, he also wanted a new phone case Tuesday because he doesn’t like the one he bought two months ago any more. I couldn’t find one to fit it, Lee went to Family Dollar & bought two & neither one fit. He also fell asleep early again without taking his meds & woke up at 5:30am ringing the bell for us to change his clothes. He had taken off all his clothing except his underwear. He could of easily put more on, but no, had to involve us. Was up for a few hours & fell back asleep yet again & had a hard time waking up. He is sleeping, but he’s not sleeping good or at the right times. The next thing he wanted to do was go to Walmart to get a 1941 Batman comic book. He doesn’t care a doodle about a comic book, but wants them for some reason. When I tried to explain to him that Walmart doesn’t carry old items like that, he didn’t believe me.

Our hands are tied with Jack. We can’t force him to do anything. If we try to force, we are met with a force that will tear the fool out of you. The resistance from Jack is enormous. It is heartbreaking because I know there is help for him in the eating & drinking department with taking the appropriate medications or a feeding tube, but there is a saying that used to be popular, “my body, my choice”. This is essentially what Jack is saying to us without saying those exact words when we try to get him to go to the doctor or suggest a new treatment option. There is only so much we are allowed to do. With that being said, Jack is not only suffering, we are as well. We suffer in that Jack’s health is failing & our hands are tied & it is breaking our souls. We are also outdone that we do so much & nothing helps. Even talking to Jack about what is required to live hasn’t helped. He literally has only had four sips of water over two days & that was only to take medication. Now imagine us trying to do all this & hold down a regular job, another reason why we are grateful for The Berry Patch, the people that support us & the wonderful people that work for us. even if we do work like Trojans. I say it at least weekly, there is no help for the mentally ill.

This is nothing but a venting blog. People still stop & ask me about Jack when I see them around town, so I wanted to do an update too. Poor Ava had two of her wisdom teeth cut out Monday & is trying to recoup. She was originally supposed to get all four out but the doctor changed his mind about the other two when we got there saying that the top two were still in her sinuses, so she’s got to go through this all over again…allegedly. And Coleman had a virtual interview for a potential job in Idaho today. Things are changing for our family, but Jack’s situation has remained the same. Thank y’all for listening, thank y’all for caring.

Author: dravetsyndromeblog

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

4 thoughts on “Outdone”

  1. Amy, my thoughts and prayers are with you and Jack and the rest of your family. I can’t imagine what it’s like in the everyday circumstances you have to deal with. May God give you all the strength and guidance so you can handle whatever life throws your way.

    Liked by 1 person

  2. Hello there,
    Sure hope and pray you can find some peace that you deserve. It breaks my heart to see the struggles you and your husband must face on a day to day, night to night basis. We have a severely mentally impaired young lady in our family. She is the daughter of my cousin. She has a dual diagnosis of bipolar and schizophrenia. I have seen how the system literally turns it’s back on parents after the child reaches the age of being considered an adult. Her dad would be going along with her and then stop taking her meds. This of course would lead to needing emergency psychiatric hospitalization. Then, one day it happens, Ann decides she does not want her dad visiting and he suddenly gets told the facility cannot let him even know for certain she is a patient there.
    I only mention this to let you know you are not alone. Once she resumes her meds, she then becomes open to seeing her dad, etc. Seeing all he goes thru and knowing we can’t help is hard.
    When I read your blog, it touches my heart so much. I wish there was some way you could get help for you to take care of you. I am sure you have exhausted all possible avenues for any assistance. Guess I better close for now. Please know you have people that care about you and pray for you. I know you and your family are going to be okay. God’s got this.
    Sending hugs and prayers,
    Love, Strawberry Lady, aka Velva

    Liked by 1 person

  3. it is always good relief when we lance the boil. “Agape” always seeks that which is best for those we love, my prayer is that the Lord will give you a season of respite that your batteries can recharge as you continue to do your best for Jack.

    Liked by 2 people

  4. Hugs, prayers. Hope blog helps releive some of the building pressure. You and your family are doing a great jobin dealing with an extremely difficult situation.

    Liked by 2 people

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