Think about if you had juvenile huntington’s disease diagnosed age 13 can’t remember a time without jhd in your life even thoughh for along time we didn’t know it was called poor Karli. Growing up sick. Imagine you’re teachers telling you what’s in your iep when they’re wong and getting upset about it and ending up back where you started. Keep a cell phone on your kids they need one if they’re able in a situation. Falling in class hitting your head on the desk turning blue not knowing what’s going on when you gain conciousness and being told you just didn’t eat enough here’s chocolate milk, umm where the fuc* is the ambulance, you offered to call for small dystonia we didn’t know what it was but all the bullshi* you get me up walking to a room i don’t even feel right, we went to the doctors to get my heart checked after Mom scheduled it it turned out fine but blue means heart!! Imagine knowing you had good childhood memories and times when the disease wasn’t that important in your life very little young. Forgetting what that feels like and someone reminding you about what you did and laughing thinking they’re laugh with you and you have no idea. Try having people tell you what to do, what i should be doing, dying requires curcumstances changes like what we’re doing etc.. You’re lying you can do that i’ve seen you, if you want to do that you can… things you can’t do anymore, being told how sick you are by people who aren’t even by you, that they still know you even though they haven’t been here through the jhd part. School was never a great place for memories or anything i seperated from my classmates i was in a special room so it didn’t make a difference, i wasn’t with them, i camped with them when i was younger on a trip all these memories are so twisted now, i see classmates i had that have kids and houses and jobs and everything i can’t have but want so bad, do you want to meet up? Sure maybe if you didn’t have everything that would destroy me mentally i would but i really really can’t. They can play with their kids outside, i can have dottie get help when i keep having seizures. They drive, i just hurt and move too much etc not even an option. If you want to know what I can do ask me, don’t assume it. Most of my best memories are in my family trips videos being together, loss is like nothing you thought you’d ever be able to feel even if you’re prepared. I have a life completely different abilities situations i just wish I know I have God and Jesus i’m soooo blessed and they’re there comforting me. I wish it didn’t feel so rejected when you’re alone yelling for help and having to wait it out and taking your meds waiting for them, i wish i wasn’t so alone. I wish people were there with me that help me through it too. I wish that having so many seizures all the time didn’t always have to be so lonely, Mom flipped through a picture book with me yesterday during bad seizures, i wish people would just be there instead of feeling rejected by the world that i’m supposed to stay in until God’s Will. I was sick all day yesterday from the nausea and pain going through my body from having so many dam* seizures i just want them to stop let me go stop doing this to my body just let it go. I have screaming in my head shreaking i have no idea why or when it’ll go away. We’ll just have to pray keep faith stay. and no i didn’t graduate i slid past with a certificate of completion phew that was awhile ago but i’m so glad i don’t have to deal with what so many are dealing with school wise with their jhdkids. Often it’s just blank, literally i stare and nothing makes sense what is that thing, how do you work it, this is a blanket? how do you use it? This recliner is a god send om gosh i feel so much better then before plus the stroller plus the glasses and screen protectors for getting rid of the blue lights etc.. wow. It won’t stop the disease but God sure helped us out beyond blessings with just a name of something leading to something to help. If a jhdkid has ocd and is losing friends, family, at least tell the kid why they’re leaving or left because believe it or not it’ll drive them insane not having closure.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.