People who can leave run away from you are Fucking Cowards. I wish they cared about me as much as I care about them all. Maybe they’d still be here. It’s like their lives are better without me. I know how much this happens with jhd, it’s unfair. Noone deserves the pain it leaves. The words you’re left with. Bullshit. All of this. It shouldn’t even be a problem for families and people with jhd, it’s just so wrong.
A sweet little boy a year younger then Karli passed away, his name’s Aidan. We met him in Iowa at a jane paulsen study, he loved the barn cat and the dog jan had. He rode the things with motors. The only way we could get about 3 photos with him, besides the group photos was tracking down jan’s dog in the house for him, such an amazing brave sweet loving boy who shouldn’t have to go through this or his family having to either. He survived so much and always had a smile!! So many amazing people who are so needed pass away too soon. It can’t be said I love all of the kids and I think if you do something, do it out of love. Being able to know you’re not alone going through this is a blessing God and Jesus have given me.
It really shoots reality through you, I had a seizure a day and a half ago ish and just missed the hard broda chair bars apparently Mom watched me go down. I remember this is real, it does get worse. I might not feel it we might not see it immediate, if I have to go through more to pass through God’s will i’ll do my best. I don’t know why anyone is meant to be in my life but there has to be some reason.
My muscles are tightening so bad Mom’s had to dress me and with my arms and everything completely tight it hurts and its hard to do but its cold weather and i cant wear a house dress, i talk odd a lot and i cant remember and i seize and i sleep for 17 hours straight and i walk odd and my foot to my hip literally is permanently turned in so i tend to curl up keep my legs closed most the time i dont notice
it’s comforting having seen others go through this before me like Karli.. it’s not as scary but I remember looking at them from a different angle, i’m trying to see what they see in me. I have juvenile huntington’s disease, it’s not my fault. Noone should be treated differently for it. Feeling it happening is so much different then watching it. I guess people don’t really understand. I’m stuck in bed most the time sometimes i do get good enough to go to town when i’m lucky. I’m scared shitless of when convention comes up I don’t think I can handle even the talk of it, so much pain is involved even more then before it hurts to think people put on masks and then take them off afterwards it makes me feel so bad for so many other people and makes me so sick to know it happens..
I made a promise to the jhdkids that even up until I can’t I would help them as much as I could, and it really helps distract me and make my life feel like its worth something everyday rather then not be here to help them. All I can do is try.. Just to survive.. I’m not alone.. this is the newest collage of the jhdkids updated, the first collage is the jhdkids as children and the second of jhdkids older, except some kids haven’t even grown up. We’ve lost jhdkids and we’ve added more. We just need hope for the kids going through this circle that theres hope for at least the newest ones ❤
Managed to sleep 17 hours talent, the seizure i had days ago that twisted my leg surely hurt it but even the doctor checked and it doesnt seem anything wrong but something is i think its either nerve pain but probably contracting more, my memory is fogged out i cant remember so much i could its like i had deep memory and now its very thin very fogged like my movements used to be more controlled now very thin ability between rest and movements when awake
went to the doctor, was completely outright honest like usual, trying to explain why living for other people isnt fair having had thousands of events seizures awake different everything getting worse and how if its all getting worse and downhill cant go back, then why go forward? that dying would be better and noone would have to watch me suffer anymore either. he said i didnt chose to have hd but i do, its not fair, and i cant wish it away. i can’t hurt myself because its not right. i know i have to wait for gods will for me to die but its all soo dam* frusterating, none of anyone can help me with the issues i have because i’m so rare apparently. i just want them to make the pain stop. i close my eyes, breathe and just stay. that’s all i have to do just stay. no matter how much more suffering. i look towards all the kids who’ve suffered and made it like karli and know its possible to make it, it doesnt feel like it but i can make it, i have to make it to gods timing not mine. if everyone could just stay this would all be so much more easier. i’m on 24/7 watch already for seizures etc, why not hide all the sharp objects too. they’ve been hidden for a long time. how many more another thousand movement seizure events, waking up unable to yell for help, how much more. God only knows