Ridiculous

I go through my room and Sabrael’s not here, i go into the dining room and room and Sully’s not there, Ellie’s not where she usually is on the couch or on the recliner with me, my Dad’s not in his blue recliner in the living room, and you can go in the living room half of it has stars on the cealing from Karli’s room, she’s not in her bed or her chair, she’s not at walmart at midnight anymore. My body says it wants this slushy so i drink the fricken slushy, nope now it didn’t want it and you’re on the floor most the day screaming and crying in pain throwing up your body won’t stop moving and it’s hard to breathe your lungs are spasming everything is just shaking and hurting so bad and you can ask God to take you and it’s not happening, because it’s not your time yet.. what kind of hel* is this.. where you can feel broken and shitty and still have to deal with the bullshit juvenile huntington’s disease desides to do and it can’t be helped or fixed. I know what you’re thinking and no, hemp cbd doesn’t work it’s not magic for me. I’m waiting for God’s Will and God and Jesus help me through all of this. but seriously.. i want it all back, but if i go back then i can’t go forwards to where i see them all not sick. So i just have to survive until God says it’s my time.

family with the kids.jpg

RIP Beautiful Ayla

rip Ayla beautiful good girl I miss you and love you always!! Even though you didn’t live with us the last half of your life i’ve always missed and loved you still  you’re so special our little baby Ayla girl

ayla (17)Ayla (52)ayla and mebella and ayla (5)1979529_10153981589265253_1606338370_nAyla (48)

Double Sided

When you see in yourself what you’ve been afraid to see. When you have movements and oddities that you’ve always watched and been saddened by. When you feel the symptoms and can share advice thanks to God, but not have to watch it from the outside. When you’re fears come alive. Nothing is safe. God and Jesus are your rock. When you ‘have’ to accept that you’re sick and people leave and things change all the time it does whatever the hell it wants when it wants to even if it doesn’t make sense and even though you’re feeling it, noone really wants to be there to see it or hear about it. You have juvenile huntington’s disease, and you know you hurt others not on purpose but by not even knowing it. Finding out that you’re more like something you don’t want to be and can’t control it. Having a stroller instead of a car. Having puppies and not human babies. When you avoid people because you can’t see what could’ve been. Having to watch people do things you used to be able to in front of you. Having no energy left in you because you’ve lived it out. Knowing you’re going to die but don’t know when and how do you live your life if you know anything could happen at anytime, and i know even healthy people say that but c’mon this is a monster disease we’re talking about not a theoretical scene “getting hit by a bus” really?! Having to hear others talk about you’re jhd issues like you are the disease.. do this around, this will distract someone with, sometimes its yes i couldn’t, but other times it’s just me having this disease and being put into a category how to change my mind when talking, how to etc.. how to handle someone with jhd, that you have and so it’s like trying to be controlled, except i’m a person not a robot. The honesty about people who left and who’ve hurt you coming back on after you die and putting up pictures and saying things positive that they wouldn’t do when you’re still alive. How fucked up is that. Is all of this. People can’t tell you what you can and can’t do. You can’t be programmed from an instruction manual, even if it did exist which i think would actually be great to have. The frusteration of having this and trying to change things that can’t and won’t be changed because it’s a repeat every time. Noone can truly say anything about it unless they have it. I love all the jhdkids and know they go through so much too and deal with all of this it’s not as lonely. It helps that God and Jesus showed me the way straight through the journey to get this set up and on here the passion to want to do it pilot it and keep going until you can’t anymore. God’s Will. There’s the don’t ignore me because i’m sick etc.. but that’s also repetetive the actions that they give. and i tried to fix it and couldn’t. Just wanted to break the cycle. Guess i’m too much in jhd to be able to, or if anyone can at all. and noone truly knows how scary everything can get and the fear of knowing the pain of losing people when they die and you feel pain you wouldn’t wish on your worst enemy. Noone can understand that unless they have actually been through it, otherwise it just seems like a mirage, something that you know will happen but when it does you’re never truly prepared because it’s unbearable. Thank you God and Jesus for being here, in life and in death for us all, when we’re called out in God’s Will Timing.

Figures

Literally, figurines we ordered lots and they relate to movies and animals im not sure what connects the movies to the figurines that i need the connection, who knows.. great distraction from convention though, mom let me order new book for alexa to read to me so it makes it better.. im just worried they didn’t give out the jean miller in memory of kelly juvenile hd award i wish someone knew. Everytime i think something it literally blinks out so i use a voice recorder as a reminder, more jhdkids also, sad they’re sick but exciting to add them. Prayers for them all. My lungs spasm bad if i’m not in front of a fan and have been using my inhaler a lot more. My ipad too i guess the film we got to go over it works.

Imagine..

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.

 

Absolutely Everything

when you have me(Jacey) a 26 year old with juvenile huntington’s disease.. crying and whining into a baby camera that’s attached upstairs to my moms bedroom because i forgot my meds are and need more to fix the seizures to i can sleep and stop breathing like that and can breath and even needing her to get you water and everything it’s pathetic right, having to be this low.. it is pathetic how low the disease can go to make you in that situation. You didn’t do it, this dam* disease did. You’re not pathetic, you’re brave for still being here no matter how hard the journey is and what mistakes you made. You just have to remember that just keep strong in God and Jesus hold on and keep faith in them. The disease does all of this to you, and it leads you to your breaking point, but you survived it many times thanks to faith, God and Jesus. If one person can, and another, and another holding on to waiting for God’s will, and another and another and another we have so many brave kids fighting this that there’s no way you could call them anything but Heroic Incredible Inspirational and Comforting in knowing you’re not alone. Even when it take’s so much of your family even your little sister(Karli) at 13 dad(Karl) from hd 2 months later and older sister (by 2 years) (Erica) diagnosed with jhd, and a sister who doesn’t have it different dad (Karisa), and a Mom(Jane) who has to handle it all. God has a plan and we just need to hold on tighter then on a rollercoaster or even we’ll fall off that when it comes time to face death in the face and be scared and everything at once you’re going to need it. Just try to Stay. Just Stay.

IMG_2004.JPG