I do know. I have theries, do what you usually would but be sure to make more room for making it better even if it’s just a little thing depending especially on how you can like petting my puppies more, leaving my room to see my nieces for even 10 minutes. I’m scared to due, but also so ready.. i guess it’s when you can’t enjoy things anymore it’s all God’s Will. I’m scared and sad about what everyone will suffer when i die.. even when i picture it i mourn myself it’s aweful it’s deep down in your soul deep pain like nothing you thought it could be. No preparing for the pain. I can’t believe I’m almost 30 but still have Juvenile Huntington’s Disease, it’s time of painall the time progressing cruelly and more painful and soo worse. I know my family thinks they’re not good enough but they’re amazing I love them all im so blessed no matter what happens that doesn’t change. My poor Nieces shouldn’t have to deal with this. The unknown is scary, but Trust in God or you’ll go insane. I’m always just waiting to die. What will it be like, from what.. how long.. a ticking clock I’m so good online but seizures movements stuck positions can’t move, other days i have energy, i feel so guilty not being able to handle outside my routine anymore.. ignoring people and they feel neglected and makes them upset about themselves. If anything the suffering we document will help in the future I pray Lord please make it so kids with this version of hd get at least comforting meds something to help them. I feel guilty and confused about how I’m so mucholder and still suffered everything through the extra years, part of me thinks it’s absolutely cruel and i wish i died early.. but also blessed to see memories I wouldn’t have , guilty all these kids have jhd too and die young.. i wonder what if Karli lived now and i died at 13. It’s not fair. It’s your own personal hell. Theres a saying you only live once but you live every day you only die once.. and be the change you wish in the world. I promised that I’d help the jhdkids as long as I’m able. Don’t be roo hard and n people who don’t understand because they’re still not to that part or their journey.
2 thoughts on “How to die?”
Hi Jacey I wish I could help you but it’s impossible for me. Or have the words to share with you. Reading the posts about the JHD kids makes me cry.
Love you Jacey 💜
God is with you always.