I’ve gotten so much worse and it’s hard everything is harder like even my eyes and muscles and tendons and nerves and everything esp in my wrists and arm and hands and prob afte ri type this worse it gets so almost unbearable feeling and i’ve been waking up unable to move trapped in my body completely, everything is just getting so much worse and even if you can’t see it in how i type it’s like even the nerves in my back get sticked with a bunch of pricks all at once and i’ve been asking Mom if she could fix it and she said she wishes she could and the doctors can’t and it feels so claustraphobic and helpless and just painful and terrible and i want it to stop it fixed not feel it and then i realized.. God can fix it, God and Jesus can heal me!! Alleluia
I talked to my niece today about important things that she needs to remember etc so she remembers me a certain way it’s actually hard to do but feels better knowing that I did it like i know she’ll be okay. Of course everyone will have to be. I’ve learned that everyone in the world is looking for someone to care. For a hero. They need God and Jesus ❤ open their hearts to them.
Have you ever grieved yourself it’s not selfish is it to know how amazing it’ll be for me, yet leaving behind the pain for others. I hope you don’t miss people when you die. I’ve seen Karli and Daddy die. It hurts so bad I wouldn’t wish it on my worst enemy. That’s it though right.. seeing my wonderland room removed knowing how you just want them back so bad, knowing it’ll be me someday.. my family my polka spotted dottie.. my niece who knows me and the one who might not remember me. The amazing butterflies everyone sent and made for me. All the things I love but won’t need anymore after passing away. Looking and remembering I was here and now pain free, I trust in the Lord to get them through this stuff on their journeys. I love them so much and know I always will never ending. Then there’s where I see when I look at it all from my view limited time, not being here anymore playing with Dottie bossing people around working on jhdkids. I’m scared but I’m not that’s the double sided part Me losing where I am and dying when God’s Will. I’ll get to be with so many though and I believe Jesus is there in life and death. Living like you’re dying will just drive you insane on the part of fearing you dying everyday and what to do. You can livelife and still do what you do and wait for God’s Will.
I keep stopping and seeing things so different, how i can feel so comfortable yet know it’s not going to heal me just keep me comfortable, I’ve added the last jhdkid to the book it feels different somehow like I know it’s meant to be my last and acceptance a kind of comfort knowing it’s done the book only taking editing etc it feels like I know how much I’ve done and that through God and Jesus i think I’ve done good and am passing it down trusting in God that it’ll be okay not to worry about it as much as I feel like it it’s out of my control I don’t think it ever truly was in my control.. I just pray it gets keep going jhdkids the start of a new year the start of a new.. hurt at losing so much and love for getting to be able to do what I could and blessed to still be doing things and loss of what it feels like I’m going to miss but comfort in knowing i did so much even if it means remembering and feeling without being able to do. I wonder if I’ll get to meet all of these jhdkids too well not all yet hopefully
I have this book on the jhdkids since the beginning its not a really big important book
just my own little book of the information and i’ve fit in spaces etc and it’s officially down to one space left.. i wonder which child or family will fill the last one..
My niece Lillith has santa grams so Mom went and got envelopes and valentine and Christmas Olaf card I filled out tattoos stickers fell out, and it hurts so much because it’s a reminder of what I can’t do anymore that I absolutely loved doing I’m very blessed I could send them them so many times and I even with the paint it’s a time when I couldn’t anymore but it still hurts
lmao i love this movie but these have been driving me insane
The part in Tomorrowland where they just hand out more pins to people in locations with lions etc and they have to find their way around through to the place without getting hurt trying to get to see Tomorrowland like she did when she fell down stairs into walls almost drown haha thats the part that drove me most insane and how did the robot girl who gave it to her not know where she was or that the pin would do that to her if she’s handed out several others, and the unlimited amount of money for road trips is especially the worst in the move The Space Between Us that was so confusing!! How did they get those ships around so easy from NASA in the US and how were they tracking the kids knowing which store in the world they were in exactly and how were they just there at the exact moment he was about to die how they can’t get past one dog to get a child from Mars and save his life c’mon, only in movies.
I learned the passion to make movies from my science teacher Mr. Dennis and if he wasn’t there and I wasn’t in that grade or anything like that I wouldn’t have wanted to do it. I wasn’t very good at the start because everything was so confusing using the program but he said it was good.
If I then would’ve done a different Make A Wish, the live aid concert to raise money or going to Hawaii or going on a Florida water themed day instead My little sister went for a regular one with give kids the world village.. they said the concert would be too big, i wanted something that would last more than a trip long, i was picking out different kinds of puppies until Mom got talked into letting me get one without using my wish for one.. my Grandma happened to mention someone who at that time happened to have a litter of puppies and I got my yorkie/chihuahua named Sabrael it means the only angel that can fight off the demon of disease. He was my baby my love my child my son my best friend my life he went through it all with me he gave me his whole heart and it gave out when he was 13. I miss him and love him soo much. I have a Dottie now but they are all one of a kind she’s my baby girl named after a freckle on Karli’s nose.
It wasn’t easy right away my Uncle Joel had to show me even how to log in to a laptop I started from scratch and with shitty memory God still gives me the ability blessing to do it still. Without any of the leads he led us too through this like the screen changers and special glasses etc..
I made The Real HD when my Mom heard how someone in Orange County CA was having a child and knew if they had hd they would be older and a cure would be found by then. It motivated me through God and Jesus obviously but it needed and still needs to be known that a child can get this and not live all that way and needs their own help for a cure vs adults with hd.
Since then I’ve documented a lot of my life behind a video camera. It’s great memories and great educational.
If my Mom had known what Karli had sooner they wouldn’t have documented any of the learning trying figure out what it was on video camera Mom used and the school’s recording etc..
My older sister also has jhd and she went to Hawaii with Katie and had an amazing time. I was too sick to go by that point but it worked out great still.
Without any piece I wouldn’t have jhdkids or videos or anything. It’s sad just to think about. If God hadn’t granted me passions and my love for these kids I’d be so much less of a me because they show me incredible things and the world needs them. Even if just for a short time their memories live on and everything grows and I really really want jhdkids to keep growing to educate more and everything I hope God’s Path for jhdkids will be. Even passing it on to different people mostly my Mom it couldn’t continue then. Laura taught me helped me create the website the names the everything she taught me and continued for even just technical support. An amazing girl I know also if we didn’t have her help on the funding of keeping the website up it’d be lost. She has a plan to always keep it going for all of us and the jhdkids. Much support throughout more paths leading to so much and many that make it all possible. God And Jesus Are Incredible!!
It’s not weird because of trying to be prepared but when you’re family talks about you in the way when i die and dying and it hurts them so bad and I know the pain of loosing and I trust God and Jesus and God’s Will.. love hurts but it’s worth it.