My Opinion On The Warriors

i am very upset that this movie isn’t free due to the amount of information on juvenile huntington’s disease that is needed for everybody, it’s incredible and everyone should watch it but it shouldnt cost to educate so many when the need is so huge

researchers do not directly tell anyone this information unless you go out and get it, and then you have to pay to know the answers you can’t get yourself.. how fair is that? my opinion is that it should already be free they can collect donations without making people who are already suffering try to figure out how to get it pay for it watch it and try to forward it to their doctors and therapists, you know how much worse jhd gets in a year, you may say a year so that they can put all the money in research but it frusterates me because you know how progressed jhd gets in a year you know how many people are new to jhd and need this information and cant just get it… i’m allowed to have an opinion on this this has nothing to do with jhdkids its about everyone you don’t have to like or agree with me but i think its unfair to especially the jhd families I love all of these children

I completely agree everyone should watch it, i’m upset for everything it can’t be if it were free for another year and more to get research money, if the jhd research is all riding on this one video we’re in a lot of trouble and then how did it keep going without the video?

https://help4hd.org/events/the-warriors-fighting-the-incurable-juvenile-huntingtons-disease-is-now-available/

 

Frusterating

my body has all these needs and wants from this stupid brain issue that shouldnt be controlling it, hot cold, soda dairy water, full outfits loose clothes pajamas house dresses, and a bazzzillion other things it wants me to sleep bundled and stiff to feel good enough to sleep obviously issues from sleeping like that for so long, now its pis*ed i need pressure to feel right, now what kind of side effects will that have besides feelling the way it should ugghhh!!!!!!

Leap

why love a movie about graceful ballerina when i stand up and fall backwards almost twisting my ankle.. i think it’s because she is so strong in passion and heart and reason that the moment she finally leaps across the stage in her final performance is stunning, Dottie got a scrape on her leg im not sure how, me n mom keep a book of the days i have so i can remember them.. i miss my bitty boy terribly, if i focus too much on me dying it drives me insane on what to do, so i cherish what i can and live my life the way i normally would otherwise. I wish the other jhdkids could talk and relate but they can’t that’s kinda sad they can’t but they are all soo cute i love seeing their photos, it amazes me seeing their childhood photos compared to their now ones but you can still see how absolutely beautiful they still are, and if you can’t your missing out, even though we’d prefer a cure they’re still even more amazing at how they handle this they’re so inspirational to even me, i found a pair of sunglasses that fit well and get rid of polarized lights, i think we’re going to try a dentist but wha we have to be close to our hospital because of the med we’re trying i don’t know if we can even pull it off but its a big enough need to try for it i still don’t think i could stop moving for them the seizures and falling and everything seems to come all of a sudden to me, the only time i think im about to have one is i get severely ill at that point i hope its a seizure and not a bug that overexagerates

check out our amazing inspirational beautiful kids jhdkids.com

Journey

Life is a heck of a journey but there’s also so many amazing pieces and i think if we keep faith we can get through it, just look at all the things that noone but you could do and see how much you make a difference in this world, even when it feels like you’re going to break it’s too hard it’s going to be okay just trust in jesus it’s all going to be alright just keep going. Easy to say compared to how hard it is i know but i believe in yous and i love you all very much.

-Jacey-

family with the kids

Fall Down or Fly

when i feel good enough i write what today was like or yesterday was like what i can remember of it, haven’t written in it in awhile because never feel good enough to, ironic right? i’ve had Mom write for me. I mispell kids names i’ve been spelling for years it’s been hard to control a tv. A new children’s movie is too hard for me to follow. Jesus tells me it’s all going to be okay that i’m going to be okay over and over i’m going to be okay i think it started during an unconcious seizure now heaven is so close i just welcome it holding my sabrael and seeing sully again sometimes seeing a jhd child free, while going through this life still alive helping the kids as much as i can.

My Baby Boy

My baby boy Bitty Sabrael boy, handsome boy.. 13 years since my diagnosis and you were there for every second you chose me from the start I love you more then i can put in words i know how amazing we made our time together well you made mine especially you saved me so many times even though you passed yesterday i know i’ve gotta make it the rest of the way until God says it’s time i get to see you again, in a way i’m glad you dont have to watch me die first because you wouldve been heartbroken so i’ll just meet you there i pray so much to meet you there with karli daddy sully and everyone our journey together is never going to end so like the quote says i’ll hold you in my heart until i can hold you in my arms again heaven and earth can’t seperate us we’re meant to be together i know it i miss you so muchh and love you soo much my baby boy ❤

sabrael spring.jpg

Realism

i miss meghan and shane and judy and carissa and cory aidan karissa meghan o donnell crista princess karli belle talking to them seeing them made it worth it not as unreal as everything seems in the community now true realism i miss them soo much if time could pause..

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