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.