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[–] 1 point 2 months ago (2 children)

Well his mother is also hear taking up some of the responsibility. He takes 11 medications per day, we'll 11 doses only 6 different medications. He is 13 years old and today and still can't use the bathroom unassisted(he can pull off his underwear and sit on toilet but can't pull them back on). Thankfully basically all his medical needs are covered by medicaid otherwise no say we could afford it.

Still alot of work and stress and it's definitely effecting my health and my life. I wouldn't be surprised if it eventually led to death indirectly(for example high stress causing heart issues).

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  • [–] 1 point 2 months ago (1 child)

    That does sound immensely stressful in every direction. I can’t imagine having to deal with so much, and I can’t having to be dealt with so much. I’m sorry things aren’t easier for you guys.

    I don’t mean to pry but I’m trying to expand my understanding of people and their situations and reaction to become wholer, myself. If you’d be willing to answer, and I will not push whatsoever, would you tell me how has it affected your perspective on intrapersonal relationships and people in general?

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  • [–] 2 points 2 months ago

    Umm... Wow that's a complex question. In general people have been good to me and especially when they learn about what's going on in my life. Like one time I put him on the bus to school, finished getting ready for work, arrived at work parking lot and got a phone call. He had a severe seizure for over 5 minutes so school called 911 and he was on way to hospital. I called my boss, gave 30 second explanation as driving out of parking lot and the only response when I got back to work 2 days later was "how is he doing? Good, he's a quick recap of what happened". That makes me positive on other people. His doctors and nurses are generally fantastic and understanding of any issues, not too surprising as mostly they are at a world class hospital for specialized medical needs( cook children's hospital, horrible name but great facility). Actually 1 person treated us poorly, his 5th grade teacher. He had another seizure, we were asked if he had all his morning medicine, we answered honestly "no, we are out of depekot because the pharmacy is out of stock, they said they expect a delivery tomorrow". The fucking teacher reported us to CPS for "medical neglict". Case was dismissed after an interview but seriously fuck that teacher.

    Honestly, it just hurts me mentally. Like everyone is good and nice and accommodating. They understand that it's difficult and requires time and effort to properly care for him. That said even with all that I can barely keep my head above water. The lack of sleep, the stress, the worry, it's dragging me down. I feel like I should be able to handle everything, add on the support we get from services like Medicare and from other people this should be easy/manageable but I feel like I just can't. That makes me feel like a failure. I know it's a tough situation. I know most people would probably struggle too. But knowing a fact like that and how it makes you feel mentally are not the same.

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