Mail

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

Tomorrowland Pins

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.

God’s Will

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!!

Oddity

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.

I knew them..

Sounds like friends when you have jhd.. you’re great then shattered by them leaving.. it’s a pattern that’s shitty.. i just wish they loved me as much as i loved them maybe they wouldn’t have left i miss having them here with me, but they left anyways and i still miss them and love them and it hurts so bad

this next one reminds me of one particular person who broke me so bad im still shattered, i never thought you’d get sick of me you promised you’d stay until the end and now i just don’t exist, how can you do that to me, how can someone do that to anyone

 

Special

that must be the difference between knowing your being pittied and not wanting to be like ‘special awards’ in school being in a special class and still being part of a class year? being someones favorite special customer in a store because you’re different and not wanting it..and accepting it in a comfortable way away from the different situations pressures.. glad to be out of school and not going in the certain stores as much.