I think losing so many people triggered my nightmare last night, it was complete cruelty, i didnt think karli was dead she was with us still alive and fine and it hurt thinking she could even die and then she did, it hurt sooo bad all over again and i wake up to find out she and daddy are both dead, i hate this disease

me and karli (2)


My Leg

My leg hurts so bad i didn’t know it could hurt this bad by itself by nerve pain, i keep seizing and it twisted my leg and made it feel like a charlie horse bad and then it hurt so bad mom untwisted it and it hurts soo bad and then it went stiff from more seizing stuff and it hurt even worse i was going to be on the floor for the next ice age, i winced and quick as possible got in my bed asap to the right position and it still hurts and this so is ridiculous my head and arm and everything should be killing me more but the worst is my leg i think the end of it will be falling asleep with extra meds at 6-7ish so soon nerve pain is so unfair sometimes my whole body is just stuck not by itself just if i moved if anything touched me it shot out more pain even a tiny bit it hurt 😥 or when you wake up and can’t move but are fully awake and cant talk and you have to wait it out until you can get audible help out to get meds to help your body wake up ughh and my hand shaking but its not worth not trying to type right and it’s pretty good right now maybe my leg is out trumping it the left side of my body is aweful today


They don’t they just don’t anymore and it’s not fair because you do you care and you cant stop caring about people who’ve made such impact in your life i can’t drop them as easy as they can drop me like i’m not already broken this disease sucks, but what sucks even more is the people who just don’t give a damn anymore can drop you when you’re made of glass, if you really care about someone and love them, how do you just let them alone like they don’t matter anymore, how can you make excuses and leave someone you know needs you, how can people do that?? I’m told to let them go but it’s too hard, it’s too much. People don’t understand that excuses are nothing compared to caring about someone, if you truly cared youd make time to keep them in your life, you wouldn’t keep making excuses to make them get out of it. The sad part is i’m starting to believe everything they said. Selfish, sick, destructive, pessimistic etc.. how can excuses make up a persons view on themselves. I have no idea. Somehow they’ve all managed to though. When I remember you I miss you like hell, I remember what you did to me, I try to keep the words in my head to make it logical on how you can leave and not stay like yous promised to. The words just don’t seem like the people I knew. They’re not yous. It sounds like a bunch of people spewing out bullshit. Which I have no idea how long they’ve already done that. I keep saying I and it doesn’t matter,  because not everyone cares, friends talk to eachother, they don’t pick and choose, they don’t find reason to abandon their friend when their dying, and yes i’m using that card because it’s true, it’s not an excuse it’s real. I’ve almost died many times and where were you? You don’t care. Obviously or you would’ve been here!! How do you let something like this go when you so much loved and cared about the people trusted so much. I didn’t need this on top of everything that I’ve survived, so thank you for making me have to survive something this painful and still unable to let it go, because I just can’t. You’re all out of my lives yet you’re still so much in it. If I can let you into my life when i’m dying why can’t you let me stay into your life when you’re busy or finding something wrong in me. I just wanted all my friends to be there like they were together when I died, I wanted to remember them that way and to be in their lives still. Consider me disposable and broken in this category. Why does everyone leave when you need them. Why is it a cycle in jhd to lose people like this it’s not my fault i’m sick, but it does make me see what you guys look like from an appropriate angle of seeing friendship if its real or not.


a website that with creating a family & spread so much love and inspiration as far is it can get through the many hearts and love and stories of everyone, blesses everyone touched by jhdkids as i know i have been by them all, educating, inspiring, helping, or just waking up hopefully as many people as possible. I think a family because we all know how important every part of it is connected by a need sadly for these kids, that outreach could possibly hopefully help too