Alive and then

i fell off a tall chair today, my back hurt but mom was there and said my legs should’ve hurt more because they hit the chair worse its weird they don’t God Bless That Helmet!! I keep thinking but they’re going to convention and they’re now going to, it’s hard, there’s only one way I feel at peace with it I’m truly way too sick for it and God and Jesus my savior and our true Father.. this life is full of that everyone’s alive, but when they decide you’ve reached death, it’s not being alive anymore and you don’t have to travel long distances try to endure what you can’t feel pain it’s going to feel so weird not having to worry about that anymore but when the time comes I can meet you there and meet everyone I wish I could’ve met I pray that Amen.


i see videos of myself climbing little mountain walking all over playing ball with karli going through florida parks

karli bravely fought and even unable to get up she watched videos of herself, she loved to be on camera, because she was famous, i don’t

it’s not supposed to hurt anymore, my journey may be mainly memories now, but why does it hurt still, isn’t it supposed to be a sort of peaceful bliss to it, i’ve done so much why do i still want to do all these things i can’t, i need to accept it.. but how?

i’m getting a new stroller instead of a new wheelchair which is great i never knew it was possible i like the strollers

i throw temper tantrums and i’m 24, i think, should i care no is it the end of the world no i feel i have a right to anger in this and am surprised i haven’t thrown more throughout this whole time, so i break down when i want something, my body makes me feel this attachment and i truly believe it’s real if it does that to me how can i react differently

I Am

Noone will have died either I’ll have my daddy and little sister and her baby puppy Sully back maybe even one day i could have a baby and go to college even


why can it hurt so

it feels sorta claustrophobic doesnt it im not saying im not blessed i am extremely blessed, right from the start its like can do this and this cant do this and then this starts and that and it gets worse while other things start muscle attack things that are like seizures except they jerk and twist for hours and you feel all of it and then the normal kind of seizures getting worse glad im unconcious but the after effects still suck, so weak so tired so frusterated so blessed love the lord sooo much i know when they decide then it’ll be my time but for now most the stuff that’d require extreme care is ordinary and it hurts so bad i dont want it to be normal and getting worse, put me in the hospital give me meds to help it at least give me the right doctors i’m already dying but c’mon isn’t there limits

Seizures Suck

Woke up with having had seizures during night or early morning not sure, but i woke up thinking i’d gain my strength back esp in my legs, nope wheelchair weak bed even napped today ridic hopefully i can get more rest to soothe this dam* disease so it’ll let me function better again my new chair isn’t even here yet

they come at night during the day my helmet keeps my head safe and whatever i was doing gets replaced with sleep


i watched perks of being a wallflower, i can relate alot to charly, i guess in the way that everyone does leave, being a jhd child or an adult with hd or cancer or random things happening, it can be mental they can just zone away from you or always be too busy for you it always seems like the only way people become truly Alive is when somebody they love truly Dies.. i’m not killing myself for that and hopefully never killing myself over it like the boy in the movie having so many issues, but people who are grieving more then ever probably know the same, wake up and realize this, that anything can happen at anytime and we never know when or what and it sucks but it’s true

God Jesus and the pain

got locked in a seizure got put in the er so i didnt die from it, they gave me more valium and water and watching me close i got to come home!! i don’t remember what happened but if i would’ve stayed in one again i would’ve been intubated etc they did the tests work ups and i was normal in all they finally got the iv in on the 4th try pricked me on the finger blood draw, i was soo stiff that they had a hard time with anything, but it didn’t hurt so bad because god and jesus, held me in a pain bubble where i try to seperate me from my body but i couldnt but it still worked when i was fully alert it all hurt very badly i went and i flew through the sky like a place between death and life in your head and you focus enough you can fly there with god and jesus and angels and except i can’t fully see karli and daddy and everyone because i’m not fully passing yet