Jaceys JHD Journey~ My Story

God inspiring me to get a make a wish electronic shopping spree to make videos, give them the ability to understand it, add social media and the ability to stay typing, i’m still typing on good days, no more ability to really make movies anymore though, maybe rarely, and a jhder with the ability to type is amazing to me how God used me to do incredible things thank you Lord!!

 

Happy Easter and especially thank you Lord and God for setting us Free of sin through The Lord’s Forgiveness 

I’ve been especially scared lately because the dystonia in my throat plus my teeth.. I’ve been eating soft of softer good and bad days but this dystonia has been making me choke and gag and its so long and hurts so bad it feels my throat was grated like cheese. My mom says no matter what it’ll reset itself in oxygen and seizures.. The pain

I watched my little sister die from jhd.. And my daddy 2 months later from adult Huntington’s Disease. To see them get so sick and struggle and survive their different ways, jhd so much crueler then hd but all grief the same. It hurts to watch and lose them sooo bad.

I’m dying and a lot of times it’s so tiring and painful you feel you can’t take anymore but you have to because it’s God’s Will. To feel ready to go yet feel scared and sad to know you’re going to have to go at their timing like Karli and Daddy. I picture me not here my bed and room empty and yet I know what it’s like to lose someone and wonder..

I go through so much and it hurts my family too bad. It’s so unfair to them especially with my older sister getting sicker. Juvenile Huntington’s Disease doesn’t deserve a name. 

As I’m getting to have Easter with my niece im so blessed, also there I worry so much.. When I’m seizing or something or even unable to hold her.. I’m blessed that I still can but when I can’t she sees me like that.. I wonder, how amazing it is for her to get to know me and I her I wonder, what will she remember she’s so little but sooo smart she worries when I’m seizing what happens when one day I won’t be here anymore my family friends my kids those who need me and those who will probably regret so much because peace is yet so easy yet hard in death

So I’m scared, because my swallow and throat aren’t right as is everything else not right in me.. As my swallow worsens i starve to death but with this disease it’s scary what can still happen. 

To show awhile ago something that has progressed I hope no more other jhd children get this or anything else

Never Ever

when i was crying because i lost my sister
when i was crying because i lost my father
when i was diagnosed with the fate of this
when everybody backed away
when the whole system changed
then when Erica also found out she had the same fate
when i grieve of the loss
of the things i can’t do anymore
of the fear of dying
of the pain of living
lying on the floor in pain unable to move
the doctors all playing games saying it cannot be helped
its still the same way to this day the doctors tell me they can’t help
i walk out crying with expectations broken no matter how far traveled
nervous in stores shaking from the pressure of being out
trying not to think of the doctor as he watches my every move
when i feel so alone in this fate as noone understands it its not the same
as adult hd or symptom wise who cares anymore
when i’m still having so many seizures and they’re getting worse
when i find out what i can and can’t eat the hard way
when i find out i cannot eat like i was i never thought it could get worse
until i found out i swallow wrong and can’t be helped only managed
when i decided i didnt want a feeding tube
when i can’t go anywhere or do anything anymore
everyone doing things i can’t do anymore
when i can’t make videos i’ve made my whole life or do much of anything anymore when i can’t sleep or i can’t eat or i can’t stand it anymore
i can continue this list as long as i can write
but my point is
through all the trials and pain and loss and whatever still to come

Who was there?
God and Jesus yes
but who was there laying next to me on the floor whenever i fall or have a seizure comes
with to ease the nervous and depression i owe them so much more then i can give
I Have A Cross And PAWPRINTS On My Heart!!

I’m 23 but like a peer to me one and a half year old niece except i eat softer foods then her so im younger but older in different ways i can color watch kids movies alice in wonderland on my wall i stick to stick figures I can’t draw my age level I can’t eat normal even in restaurants if i can sit through any i have seizures too much she can even make more sounds with her mouth then me when it comes to brrrr or other mouth abilities like la la la 

 It sucks having to be the one left home all the time with my mom, if i get to a restaurant I don’t even know if I could eat from it i take my meds at night in a milkshake so pushing two in a day scary and they can’t help me so being stuck attacking or in my body and even in ridiculous stunt positions i want to do so much i cant even play games through the tv they need to be handheld or i get more seizures I don’t know when I’ll be able to use what at any time it could change no driving having my own little girl half my family passed away I know I’m on the not escapable progression cant travel etc house bound scared relieved depressed worried i get so much pain and even my anxiety is worse in jhd it makes me sick for no reason im trapped the only way is walking forward and its hard wondering did i live my life right i need a handbook a list of what to do I know god and jesus are there and yet they catch me over and over again and still its sooo hard even gatorade has acid water bedtime milkshake sometime gatorade nothing else.. 

Applesauce raviolis pancakes in syrup mashed potatoes pumpkin pie im still blessed on what i can eat because I know what i can only eat on bad days I picture myself gone and it hurts so bad because I know what loss is like and im scared of change everyday all those tests and er visits when hospital lights make me sick due to photosensitivity so i feel flu the whole time throwing up and it’s so hard thinking it’s also not escapable so much behind hopefully ahead but also hopefully not ahead you know what i mean am i okay how am i.. Im still alive and that has to be good enough I can’t even make videos like i used to i made one of the jhdkids and im so blessed i was able to because i cant even use my camcorder anymore only camera when i can im doing what i love that i can still do even if it doesn’t get far the losses are hard but when you’re tip toeing on an electric wire comfortable and doing what that i can still do is pretty good i get watched on a baby monitor and want to be for safety during the night i had to give up books besides childrens and games that are fast for me and too hard I’ve lived preparing for when i get too sick

Never thought i’d be able to make a video again, i’m so exhausted and weak and it’s now more permanent which is sad, so hard to make videos, or even take pictures and upload the, even sadder.. but, thank you Lord.. I made another one!! Hopefully Not My Last!! The ending’s one of the best parts.. I put all the kids in it that I have permission for

jhdkids.com

What is the right attitude to die.. Ive been told why can’t i be like Karli or Erica or even Cathy why can’t i be so optimistic instead of pessimistic how about realistic I’m dying the kids are being pushed back even if there’s a cure for adults it’s not straight for the kids and they go through so much more i can be me my attitude and it should be okay for me to be without people trying to change my way of thinking yes i do wish hd and JHD were the same but they’re not it’s like JHD being deprived and worse is not fair to kids or their families with jhd and people go blind to the differences often i feel on purpose 

How amazing would it be to be allowed to be so innocent so pure so free, to stay a child… running free not knowing death or obligations complications or such pain.. i pray one day i can be free from everything through God and Jesus and never have to know such things again, to just be a child with her family free forever always with everyone there and not hurting and enjoying such life that you can only now see through a child, that i hope we will all become again, i think it says that in the bible no more death or loss.. it sounds amazing

Sometimes I just wish there was something that would show me how to not mess up my life how to know i’ve lived it right.. i like to think that everything thats meant to be will be and that everythings that happened was meant to happen no regrets no what if or shouldve couldve shouldnt of

they say my swallow is off and when i get too weak i cant tollerate food or liquid it does choke or throw up back out, progressively it will get worse until i probably die of starvation.. jello apple saauce milkshake ravioli it hurts watching me die.. all of these tests that i used to wait in the waiting room for for karli to be done with, except it’s me this time

i look for movies i can relate to lorenzos oil glass house good mother winters tale my sisters keeper youd be surprised how hard it is to find one i can relate to that doesnt have adult hd in it and miraculous recoveries

feels like its ripping apart on the side, probably from the twistingg