I’ve watched Karli go through so much and never did I think I’d be able to relate to her later. She took the love faith hope everything when she died and it took so long to figure out how to get some back. Karli and Daddy took parts of us even in our 💕 and I miss and love them soo much and hope and pray to see them soon. Everything is turning into blank space as time goes by because they’re all leaving and dying too.. the point is juvenile Huntington’s disease is your own personal hell.. and I never thought I would understand the pain of it being so bad you want to scream and you cry even when you try to not let it break you symptom by symptom but there’s just so much limit. You screamed in stores in your stroller and i hear and see the things that make me want to crawl out of there too, and the dystonia and hard to breathe and I know I’m not 13 and I know I don’t have or want feeding tube just comfort and dying at home.. but i can relate to way too much now and it scares me that these symptoms are going to keep happening and I know God and Jesus are my rock and you said it yourself through your life how much Faith you had and you were so brave because I can’t always hold it. It’s scary , relief sometimes because i can be with yous sooner and thats scary too. The frustration of not being able to get it fixed or helped and the relief I know i pray I’ll be with yous abd Sabrael and Ellie and Sully and Grandma and Grandpa and soo many more.. i can relate to the frustration of trying to get understanding and losing it and being treated like a person and not a disease while still trying to fix it.. the loss of what you loved to do and pain of watching others do it.. the wanting to try it again and failing.. we’re not the same I know jhd wise and person wise but I understand more and more and Faith is the only thing you can truly hold onto that won’t leave or fail or ruin or anything because you said it to Keep Jesus in your heart ❤️ and you were so excited to go be on his lap.. just taking it moment by moment and thanks to you it’s easier then it would be without you I can’t even imagine it..
At any moment everything can change time keeps moving forward.. my Grandma died yesterday.. i love and miss her she loved family she had a big family then went to every event she could she was supposed to never die, grief is too much everything seems to be that way she’s with gpa and karli and her son jack who died as a baby and she got to die at home where family grew up with her husband she loved Christmas the most i think to gather all the family around.. and her sassy tounge that she stuck out 😇💕
I knew in school i was being watched and listened to and special things put in place but being in my iep i knew so it was great to know but not so great knowing what was happening and being watched and the special things comforting but completely exposed like when you see people talking about how to deal with things and being the one who’s sick you can tell when you’re being specialized like talk to them like this etc and it’s like I’m not a disease but I’m sick with one and people use it to advantage and people use it for manipulating and others just to hurt sorry it’s been so hard to write as much it takes an hour just to decide if i want a candy and if I should reach for it or for when it’s soo delayed bad
We’ve been having bad weather that attacks me through my body which seizures and shakes and jerks and hurts so bad and mom says i have night ones too.. the lightning was like an eeg horrible mean.
There’s a horrible Empty i feel, how do you grief right anyways.. i see where Sabrael would hed chasing the mice away in my room.. i see ellie laying with Mom while her kids ben n dottie play and i see Karli and Daddy in so many places everything is so empty I just push it away in my mind is that even sane i guess nothing really is and I’m really not sane to begin with and healthy is a word not used anymore i even feel empty for the friends i had helping me.. i just wanna scream angry and sad and frustrated and sick of it all so hard it’s all so hard and im soo sick of empty and hurting from jhd and allergic and ashthma and thyroid and food balance and medicine i love God and Jesus i am so very much blessed even when it seems i cant see all of it and i talk and feel because I think it’s because I’m human and he died for us to be saved anyways, I don’t ever mean anything against Faith I’ll die at God’s Will and God Winks are amazing and i can still feel so
Empty and Helpless and everything I’m just screaming and crying and am here. One day i pray I’ll find out why and be with everyone and God and Jesus and suffer no more. Amen Alleluia I can’t wait and i can wait at the same time because it seems dying is confusing like that.
Showing the Honesty and Truth in Juvenile Huntington’s Disease is very hard considering everyone who doesn’t want it shown, or to see it. They only put Adult HD and Nothing about the jhdkids. Huntington’s Disease and Juvenile Huntington’s Disease are VERY Different. For Years Of My Life My Journey Has Strived To Show This.. As First Seen Probably For Alot In The Real Huntington’s Disease Video https://www.youtube.com/watch?v=Dhj2gRvWn3w
the first of many I made, including ones of myself sicker in a seperate account jhdvlogger and Mom’s made one’s also jym092000.. and of course into jhdkids curejhd, i’ve met many many many amazing families and stories and kids and added to jhdkids.com and jhdkids fb and that’s when I ran into Justin and Autumn’s Story With Londen (Wife & Mother) It started as her story In videos etc she posted earlier Like In This Youtube One https://youtu.be/gDH_gbxBjcQ
Then Their Story Started Going Farther and Telling The Truth The Whole Way.. Now Autumn Is Shown All Over With Her Mom Telling Them The Truth Behind Everything and Education So Many People!! It’s Incredible, They’re Truly Heroic.. They Just Won The JHD Youth Award At Convention (Virtually) Which I’ll Share The Link Of Here From Their TikTok
I have to admit, being so sick I was and can be very worried about the future for juvenile huntington’s disease awareness. I’m writing this right now, because I want you to know before I’m too sick to write this down that I’m very thankful and blessed and that we all should be to have them blow everything up with the Honesty Of Juvenile Huntington’s Disease VS The truth people keep trying to keep.. It’s A Cruel Disease a Personal Hel* and These Kids Deserve Their Own Help!! And I Truly Believe Autumn Londen and Justin’s Story and Awareness Can Keep The Future Bright, Because I Can’t Anymore Like That.. So Find Them!! Her TikTok Name is @londen_for_real and All The Families Who Have Lost Someone Or Still Are Do Have Support Networks Like Kinser For Meaghan etc and Things Set Up Even Up To HDYO Is Amazing.. So Please Watch What You’re Using You’re Fundraising and Efforts For Because It’s All So Complex Be Careful.. I hope i can meet you one day Autumn, Keep Smiling Even When You’re Going Down Ok <3..
Here’s Their TikTok https://www.tiktok.com/@londen_for_real
And Their Youtube https://www.youtube.com/channel/UCSbaIqsR8LYWc4xo00LsKBg
Here’s her Facebook Support Page https://www.facebook.com/autumnsadamantadvocacy/
No Good Morning Now..Me Today my progression has hit hard with a hammer it hurts so much more
Happy Mother’s Day To My Mom, I wouldn’t trade you for anyone you’re one of a kind and God blessed me with you wed be lost without you Love You Always
All the time i end up swallowing air drinking etc then i choke and throw up air literally and I hurt so bad from it it’s another one of those things where you yell this is bullshit!! And still end up having to live with it too
Every game I play is more painful than just playing spider solitaire it’s the only one i can handle that keeps me and my body calmer poor Dottie lays by me I can’t chase her as much I feel so bad for her being next to me but solitaire vs chase my body is so mean 😞Daddy played card games a lot he knew soo many with a single deck
Daddy’s Angelversary is In An Hour. It’s so fast coming I miss him sooo much. He’s with Karli now though and hd free. 😇😭