It seems when you start you don’t know the difference, legs give out feet twisting, walkers that dont work with my seizures, my camcorder was my safety blanket, making movies through my Make-A-Wish equipment. so much loss and grief losing family piece by piece.. then you.. shaky.. color changing software for laptop, constantly trying to figure out what these movements events that are still cruel are.. of course every time a neurologist said they couldn’t help i cried, no matter where we travel. I loved reading books even in cars, can’t travel anymore. Can’t read books anymore.. shoved into giving up all the books i loved because i can’t do that now, shove in bed unable to do what i loved puzzles, legos, etc.. ok made alexa read my kindle books using my soundproof headphones still works. I drank everything normal in the beginning, then no soda, then no gatorade, no well water.. push i can drink milkshakes at night but always bottled water now… no running leaping jumping skipping.. lots of falling all the time everywhere and seizures even wake me up mom has to give me more of the meds i already have a zillion of,nausea constantly.. i went from excitement and doings to crying at Karli’s concerts and graduations she was soo little. I would happily give up everything to have her and daddy back and sabrael ellie sully etc.. but we get a candy i can eat its constant..then pushed back to something easier.. pushed back to extremely light things, i keep getting worse from this stupid juvenile huntington’s disease. Some days i get to walk a little farther to be pushed backward again. it’s scary knowing this position you’re in right now on a really bad day can’t move, it’s going to be permanent.. from growing to growing back back back to a baby. My niece is learning better how to say her sisters name, Lilli but right now its wiwwy, and it hurts so bad that my speech has gotten younger then a toddlers, when i now talk talk not online but in my body im losing letters..my R and L s are turning into W s. They’re learning as i get pushed back and nothing to press against is a brick wall and i struggle and my only way to get out is to die.. I trust in God’s Will. When it’s time it’s time.. and it’s all so scary and sad and frusterating, and dissapointing, and grieving yourself as if you’re already dead.. i see the love between my nieces and their family unit, i see Nora yelling no Wiwwy don’ truly scared and i cry because of everything it stands for. Love that i’ve grieved in my sisters who are/were sick. Because of all the jhdkids i love so much going through this. My niece Lilli cries because she miss Karli and never met her. It scares me because it’s just the beginning of her being involved with her dying aunts.. I wish i could save her from it.
it seems like kids with Juvenile Huntington’s Disease are more then that. They seem more like family. When i see them happy, excited, amazing memories of them i love them all when they cry, hospitals, progression, death, i cry and grieve, i worry about what happened to me happening to them and that it won’t be a lot of different things. I understand it and am going through it awhile and it never gets easier jhd either makes it different or worse. it says in the bible to love everyone as if they were you’re Family. I love posting updates about them adding to their jhdkids.com page. The best we can do is pray they are as best as they can be pain free for even a second. Special moments to remember. our journey’s have let us meet and some will probably be until Heaven. I love every second any second i spent with them even when i was able to video them. So many are Angels now.
My Journey over years https://jaceysjhdjourney.com #Jhdkids #jhdsucks #juvenilehuntingtonsdisease #cruel #progressive #terminal #disaster
13 years that’s cruel I shouldn’t have to do that many of jhd i hate this it’s cruel 😭 even Carissa Krivanek was alive she was one of my best friends I shouldn’t outlive this stuff its mean
Sick again because i curl up at night and my systems so slow i keep throwing up all the time. I wake with seizures Mom has to medicate me for. jhd sucks.. it hurts soo bad
I’ve been thinking maybe doctors are vampires i mean urine ok but why so much blood, do they need 2 ways to verify I took the valium just a theory. People think im serious but im joking. You see, when a doctor hears my Mom say i have more seizures, 40 minutes long. people go for the cold or flu, but i bet im one of the only people who can leave after that with yet another neurology request, which we dont have. Easter gets so sad without Karli. Over 13 years ive been progressing with juvenile huntington’s disease. Why so long. It all hurts soo bad all the time every day. Only God can know. it’s cruel but somehow important diagnosed at 13 years old. Not fair, i wish i died with Karli when she died at 13 years. My Dad 2 months later in 2010. Maybe it’s to help jhdkids, i used to be best friends with them, we talked and cards Carissa Crista Cory Judy Meghan many more. I wish i could just message them. I love all the jhdkids, a God given gift.
I miss you so much Princess Karli Belle, you taught a lot of the world about how brave kids like you are and how much you faught and lived, and how memories never end. You gave us faith hope and love, and we had to fight hard to regain it after you left our house empty. It’s almost your Angelversary. The day the nurse came in my room and said it’s time. I never thought it could ever happen. I wouldn’t wish that pain on even my worst enemy. You’ll always be 13 to me. Always be my little sister. In 2 months it’ll be Daddy’s Angelversary. Could you tell him how much I love and misss you both. You’re one of my most heroes. He’ll always be my Daddy too. #jhdsucks #angels #Jhdkids #heroes
There are no redos in jhd it gets harder with longer i used to ride bikes go for walks jump rope drink a ton of soda root beer floats we loved i ate frozen pizzas easily puppy proofed an entire room moved around my room i had fave places and things to do and eat puzzles sign language the keyboard scrapbooking i set up tons of electronicics I could walk through stores and not fall or need any help i could play video games through the tv and used a camcorder all the time making movies expirementing slowly it all goes cant eat this anymore so this and so on walking wheelchair stroller cant handle it.. loving the food acid stomaches different food harder to swallow puree tastes aweful hurts mouth.. i make fake lists of where im going and whaT im doing there sarcasticly to handle it Like im going to see picture rocks and a waterfall” tour niagra falls and california to the wonderland ride there i cantt do any of the things im saying and the list of cants is geting longer lasting years of torture with this progression.. we have a code in our family sort of ingrained, like dont talk about what i cant because it hurts.. when someone says lets go to camp i say i cant and disapointing people hurts i cant go see you graduate i cant record it, and i cant be very able to talk this well in my voice even finding words i cant remember… i cant play games i used to love like board games so please dont discuss them all by me.. please dont put stuff i used to do and love by me im good not reminding me of cants.. its all so hard i cant redo any of it i have journeys the hardest is souls is breaks you down straight into your very being your soul so deep pain i hop e u dont have to feel because of all loss living and dying are the worst by far…. thaank you God for family and yous
I kno its not on purpose but when kids in music videos sing about being torn apart to the smallest piece and surviving its like they dont know what hell this is seizures waking up on floors noises changing everything cruel its like a world full of death because thats how bad ive been sick like death i curl up but then my system gets mad and hold in air n makes me even more sick and hot and cold and tired but too movements to sleep even after meds but the meds Just need the right timing n its so confusing gravity hates me my brain hates me more all the pqinf nerves scream in my body some n i cant stop frowing up bc my systems too slow to digest it all n my inhaler kind is gonna be changed bc the world just changes n they think its better i think its ridiculous if it works leave it
I love all the jhdkids and editing fun with videos n pictures and knowing new ones it’s all so sad though because even though i need to know the ages it still is all going to be filled out with ages every single child will die from this without help it’s great to remember them though too It’s why I didn’t keep adding ages because i just kept updating the ages bc they died so fast prayers for them all
From a book i read.. “I thought I had been prepared for Robyn’s death–as much as you could be, I had accepted that she was going to die several weeks ago, but now I realised, I could never have been prepared for it. How can you prepare for something so awful? The human brain simply can’t comprehend that level of terror until it happens and then it hits you like a tidal wave and wipes you out. Grief is a funny thing. Nobody tells you about the awful crying that physically hurts; it comes from deep within your stomach and hurts your whole body–‘keening’ was the old Irish word for it and I could see why it was called that–sometimes it came out of my mouth and I sounded like a wailing banshee. All the love you still have to give now has nowhere to go and so it pools at the corners of your eyes and sits like a brick upon your chest until you can’t breathe. Nobody tells you how every cell, every synapse aches, right down into your very core. And nobody had warned me about the tiredness. The weeks of sleepless nights and living on adrenaline suddenly hit me like a tsunami and I was exhausted. I was so tired, my bones hurt, but still I couldn’t sleep. I couldn’t face waking up again to realise she was gone.” I had lost a child, but somehow the human body kept going and the days were going past and I don’t know how they did, but time marched on. People still went to work, the post still arrived through the letterbox, bananas turned spotted brown in the fruit bowl, and everything kept going on and nothing stopped to grieve
— The Last Days of Us: An unputdownable, emotional Irish family drama for 2021 by Caroline Finnerty
Bella’s really sic cancer n hip dysplagia she hurts so bad and is getting so small by the hour. It’s so hard being unable to help her. I love her so much and don’t wanna lose her too.