Jaceys JHD Journey~ My Story

Fishy Wonderland names matching theme of course 

In 2014 Me and Mom were talking last night and I can’t have kids, but I came up with what I’d name them
If it was a Girl which i’d hope for, it would be (like ray) Araya Jayne Mukka and if it was a boy i’d name him Rylee John Mukka .. jayne is karli’s middle name and mom’s first name but i’d spell it like karli’s middle name and john is daddy’s middle name if there were 2 boy’s it would be Rylee John Mukka and John Rylee Mukka I’m not too sure about 2 girls, Araya Jayne Mukka and i’ve loved Grace because of our life, Gracie Jane Mukka would be cute then they’d all be connected.. and it’d be spelt like mom’s jane in the 2nd baby girl 
I want a little girl!!
But of course Keky Jane was idol forever 

Karli

Erica 

Karisa

You

Jane as in moms  we made it for fun 

He still has ich(ick) parasites, but has made it a whole week and one day!! the treatments helping him and now we have a heater and extra air pump so we can kill them that way for 2 weeks too and they hate garlic so we have garlic as part of his algae eater food lol, everything we can do i think he loves having the filter carbon free above him probably to feel fresher.. creating another tank alice in wonderland themed with guppies and non glowing ornaments and the background and of course when he gets better he’s going to have his favorite squidward ornament in it for him.. hard to use body so much, i’ll stick to our fish projects and the child building set i got to try to keep my hands still on a diff level

My body is stiffening not just hands anymore it’s like how you feel before you stretch out in the day or like sleeping on one side unable to rollover when it feels u really need to, except its painful not being stiff hurts and feels so uncomfortable but obviously I don’t get to decide anyways I just thought id tell you well I could because when karli did it I wondered how it felt it hurts if its not closed and hurts but less when it is plus the idea of damage pain..  Can’t even remember when I could look at the future and see years lives i only could and now see only moments symptoms pain second minute half hour.. My body locks itself but it isn’t as bad as I thought it would feel but the fear of my inabilities attached is scary as ever walking blankly into the unknown with god guiding me as i walk with god and jesus I can’t be on as much now i need to take this as graceful as possible to try to adapt even if it takes crying for hours I know it’s possible to get through time to go try to be like this thank you for your support and love yous very much my Mom updates jhdkids now for me often with me

Love,

-Jacey-

Always

can’t do puzzles offically my hand my wrist feels maybe its tightening idk i cant do puzzles or legos i don’t dare try to draw or color i used to play the keyboard awhile ago that’s gone i can’t read books, alexa reads them to me.. i can only hold a conversation online offline i cant find the words to complete what im saying and talking to others that don’t know is even harder i try to avoid talking at that point i cant fit everything i need to say on a device or just type it all, it’s so complicated i’m sooo sick of being sickk

the world shows you perfect families and friendships in different ways, television magazines etc.. it shows life as it can’t be, making me wish it could be, even in the perfect situation life still wouldn’t look or be that.. simple.. too good to be true type of life. My last fish the algae eater hoover is dying right now. It’s hard to watch. I remember when they said that about Karli, when she died the pain was/is unbearable impossible to even fathom this pain existing that it was actually possible to lose so much.. it feels like when they’ve passed my Daddy and Karli it’s like a memory of losing them, what i need to understand is

I Have A Little Sister Named Karli

I Have Two Older Sisters,

Erica Is Only 2 Years Older Than Me

My Oldest Sister Is Karisa

Karisa Has A Daughter, My Niece Lillith Jane

I Have A Mom Named Jane

I Have A Daddy Named Karl

It’s all still real and hard to keep in mind the idea that, even though it seems like a moment or memory or trauma you never stop grieving it’s like putting an end to a sentence and surviving afterwards, there’s no end to it.. surviving yes by faith, grieving always it hurts and might not be recognizable but it’s there and maybe that’s what else makes us different from relating to anyone else. We tried getting a special counselor to relate to these situations, my seizures are too bad and that’s what they said they wouldn’t want me falling from them.

One Day I’ll Hopefully Be There With Them, But Until God Says So I Just Need To Stay and Survive Even The Worst Of Worst. I know Jesus is there even in life and death.

Psalm 46:10  He says, “Be still, and know that I am God;
    I will be exalted among the nations,
    I will be exalted in the earth.”

hurt so bad from tightening when I walk it hurts super bad and to the touch too, i’ve been doing good on stretching them out seizures seem to come at night/morning more, i’m a vampire sleep during day awake at night, its not something i can help there’s a lot i can’t due because of it and everything else involved with jhd.. its easy to blame it on me and make it all make sense that way but it’s not true i can’t control it i wish it was that easy i have the best schedule for sleep possible for me, if that means sleeping during the day ive gotta.. my mind is fogged over way more so hard to do too much of what i used to i can’t handle as much by a lot and my memory is soo aweful it’s almost just imediate family names my hands are tightening and hurting too but thats understandable i use them more so they hurt worse tha tway too

crazy hours stomach flu started yesterday around this time or a bit later cant stop seizing or moving whole body hurts and feels shock and everything mixes together, i didnt know you could have everything mix like this, my mom says this is one of the easier flus on healthy people but it kicked my ass, i’m just blessed to be able to drink and take a nap!! thank you Lord for the hopeful end of it so weak all the time anyways exhausted i sleep like a vampire literally erica got me popsicles though and applesauce and water we needed for me. mom says that fevers are good they get out infections stuff, i mean the fever that comes with it i become a dragon lol i cant even seperate things anymore like i used to or comprehend so this was wha, when virus’ turn deadly because your not healthy enough to handle them. I don’t want to get the flu that puts everyone out and not just hindered. I had full body rash a viral rash apparently. i’m glad to be able to come on and see that the jhdkids are doing okay in a sense of a diff kind of okay but an okay still compared to what i was hoping to not see i’m very glad i got to check on them when i hadnt in a while ❤ i survived pretty amazing