this is pretty long so this is why i’m submitting it, sorry if this is troublesome!!! you dont have to post it i just want to share this with you!!
i know this isnt the same as what you’ve gone through, but my older sister had a terminal illness growing up. she’s ten years older than me– i’m 17 now. it started showing at about 12 or 13 years old( so 2 to 3 for me). she was havingg chronic jerks, difficulty comprehending things and seizures. and my mum took her to doctors, tried to ask for help, to do anything at all, but no one would listen or believe her. doctors passed it off. the school didn’t understand. she ended up dropping out at 16 because she couldn’t read anymore, the words wouldn’t sink in and finally at 17 we got a diagnosis. it is called lafora, which is some sort of epileptic disease, and only 200 people in the world have it. there was no cure. no treatment. they put her on different medications for a long time, to just at least stop the seizures but it was a lot of trial an error; and we had absolutely no idea what was going to come. each case is unique, and having only 200 people to work off of was nearly impossible to glean anything significant off of.
by the time she 21, there was absolutely no way she could take care of herself. my mother turned into her PCA (personal care assistant) officially by the government and we moved from the apartment i grew up in to disabled housing to be closer to her father and stepmother (who were useless and barely helped.) it was extremely difficult to adapt to the change for all of us, but especially me just because that’s when my mental illness started showing. anxiety attacks, suicidal thoughts and actions, being put in the psych ward over and over, refusing to go to school because i was terrified of if my sister was going to fall, or get hurt, or something happening to my mother. i went in and out of court a lot for that because of legal reasons concerning school– last year, when i turned 16, i dropped out. I’m still trying to work on my GED.
last february, my sister was put in the hospital for surgery to get a tube put in her stomach because she could swallow anymore. by that time she couldn’t even go to the bathroom by herself. but the surgery seemed to go well, and she was going to be released and sent home by the end of the month. flash forward to then.
but her health was so delicate, and everything went wrong at the last second. her body couldn’t handle it anymore, not all that it was going through. the doctors told us she had about a week left to live.
a week turned into 5 days, then 3, and the next day they said it was until that night. so on march 1st last year, she passed away. it felt so sudden and unexpected, like accidentally dropping a glass on the floor and it shattering. my mother was a wreck. my sister father and stepmother and other sisters were too. but i just shut down and went numb. like, my sister just died. she was gone so quick, just like that. but honestly, i’m glad that she passed when she did. i’m horribly sad still, because she’s not going to see me become an adult or do anything but i’m so glad she’s not in pain or suffering anymore. that’s my one greatest blessing– that she’s at peace.
sorry i know this is long and not the same as your situation but i can relate to the frustration that literally no one was listening or believing us. and no one really cared. like her avoiding doing homework wasn’t her not wanting to do it or anything, it was because she slowly stopped being able to read and tried to hide it. it still makes me angry that all the shit she went through, could’ve at least been lessened and easier to deal with if we had support. but yeah i just wanted to tell you this because that post you made really made me feel understood i guess? sorry and thank you for just reading this!! and making that post about your disability!!!