Jaceys JHD Journey~ My Story

printed and laminated the new collage of the kids, my memory sucks so im coloring around the kids who’ve passed, my little cousin comes and asks what i’m coloring and i tell him he goes wow almost the whole things colored in… sad and true

6 years ago you went to be with Karli as i sat on the end of your nursing home bed, i love and miss you both soo much yous took part of my heart with yous

My mom built a fish hatchery its cool pregnant fish surprise maybe two

I pick up on things that can make things feel weirder like when a teacher is paying extra attention to your social skills with other kids or not ocd but some people truly do stare at you when you’re being watched to make sure your not having a seizure they heighten anxiety and i feel self conscious and notice my every move some don’t realize and see it the way i do to me its awkward even outside of school because I’m obviously not in school anymore but its the sense between how you look at it i see someone who probably is just a distant seen you before i see a fake hello how do you tell people are real, the beautiful butterflys on my ceiling sending me cards and writing and messaging me if they leave and get busier to me when i get sicker is it me or is it them not making time to talk to me while they still can am I still hurting them even when i leave them be busy most the time

No Regrets

This was so much fun i can feel the cold from here

my stomach was very nice on letting me eat today except when i choked so bad i threw up that wasn’t so great but im very blessed for the time i have like this because of how rare it is

it seems in life one thing always bothers me, how you can never  get out there enough how aweful juvenile huntingtons disease is.. i can yell and scream it yet i’ll still be having seizures and everything else it tortures you with, surviving by miliseconds. It’s worse then you can describe scream shout post you can’t change it but there sure are a lot of people out there who can ignore it. Keep posting and shouting people need to hear it and see it!!

jhdkids.com  because it EXISTS

lets just say the beautiful butterflies you guys sent me i love so much ive been admiring them especially the ones on my ceiling

It’s weird being sick since i missed so much being little because i was so sick and now i’m too sick again it’s ridiculous

I’ve been really depressed lately my future seems cruel and my time now seems pretty dull and I feel like i’m missing something.. i haven’t let the house in awhile but thats normal.. is it because i’m so jerky because that’s normal too, what am i missing

I guess when you’re Depressed and feel like everything is so confusing and lost life gets really…

I wonder if there’s anyone who’s life I’ve made worse.. I’ve for most felt I don’t fit in anywhere, I suppose with my situation it makes sense i mean who can really relate..  but then there’s the ones who want me to stop talking to them I tend to see myself as a burden so i tell them the painful words.. I’ll leave you alone I’ll stop talking I don’t know if its me or them considering I’m sick and so much of me is truly invisible to me.. I knew once I got sick that I couldn’t get as angry and aggressive as my dad was, so what am i truly I can’t see and who have i hurt I can’t truly know if it’s can’t even see a lot of the physical movements of the disease so I’m confused and in a way sorry for those people I hurt 

I think conventions were hard because I got such amazing support and they were there and then they were all gone home even to different countries and that’s how I knew it was so hard because life goes on when you get home and everyone gets busy again and it all disperses and it makes it hurt because you miss what you had, I’m too sick for conventions now but i hope the nya helps the youthand doesn’t party away from them when they were to little or sick to go it hurts thinking about how much I just wanted to hang out and be with them when they left to party not all of them are like that 

i was very blessed with a few who would sit down with me 

youd be surprised how many people in life see you break and still pretend you’re not there not just at conventions 

I’m going to sleep really hoping I don’t get trapped in my body again 

Hanging on by a thread wonderin which ones your last breath amen

Take care of them..

I feel like i have expectations to be so strong and a certain way, but i can only be so much i’m not him or her i’m me and i’m trying and every moment i’m still alive is a victory