I don’t know how I got here. The realm of reality seems so real yet so unreal, like a veil you have to pull for it to be fully real, except you can’t pull it, life does. I’ve always promised myself when I was younger, I would die before my little sister, I would die before my father, I would die if i ever got the temper of my father or started hurting people. I obviously never kept any of those promises, but I never expected for God and Jesus to actually pull the veil and save me. When I was told Karli was sick it didn’t hit me until I walked out of the room and in front of her, and I started crying and Karli asked why I was crying, my mom said it’s because i’m afraid to get shot.. Karli started crying too. Even at her school concerts i’d cry and couldn’t help it, but i didn’t know that reality still hadn’t hit, until the nurse came in my room. She said to come say goodbye, no it’s not possible it can’t be, saying goodbye isn’t in my reality. Life was never as real and as painful as it was when I went into her room and seen her lips were blue mom and erica snuggled up to her and she took her last breath. She was free. It hurt worse then I thought ever possible, just hold her bunny and curl up on the couch and cry until you run out of tears, and cry even after that. We gave Daddy her pink rabbit and he held it as tight as he could, and then he died 2 months later. I think it’s because of his grief of losing her. There was so much life, we were going to go to California for the cure Karli believed it. Then the life was gone just like that empty. When I heard someone from a group in Orange County, California had said that they want to have a child and it’s fine because the child wouldn’t get sick until it was older and then by then they’d have a cure.
That was when I had to make the real hd.
Making movies helped me get through everything, show everyone it’s real and it’s here and before Karli and Daddy passed away I made movies mostly of them updated. I have turn back times and more videos now, but it’ll never actually be the same without them.
With all this pain hitting me of getting sicker and grieving, it all hitting me at the same time. Flipping chairs over from attacking and falling and bruising my bone, but I got lucky so far. Just thinking of a future of more pain and my sister getting sicker and my mom having to stay here and watch instead of being with her grandchild more sickens me. I’m really good at the computer somehow but everything else is affected wheelchair walker speech device we’re editing and so many seizures and attacks and aches and stomach pain and anything and everything you hate and despise the most is what juvenile huntington’s disease is, it doesn’t even deserve a name. Back when we were home and I was up on the stairs, by my birthday, we got the results back. Positive. I had already been clinically diagnosed and I knew I was sick, but again here comes the veil. You’re fine, oh I knew this already. Bam. I’m crying on the stairs and my dad is throwing another one of his fuc* you everything and everyone moods, anger, the reason he went in a nursing home. He got really scary. My mom was saying Karl look at your daughter up there she’s crying her eyes out!! I think the most painful needle i’ve ever had was the one that took the blood for my results. That’s when I got Sabrael, I didn’t get Dottie until Ellie had her and now she’s my service dog and I love them both very much so.
The one person we never thought would be sick was Erica, and she was positive for jhd too.
Showing the world these kids and what jhd is like, helping them see that they need help, that they’re not there to be used for money for the adults, that they’re children and need their own help, and hopefully helping parents with information and relating to eachother and symptoms that aren’t apparent but are there and most people don’t know, and what helps. I love these kids. I just added a new child named Erin she’s 22 and has jhd.
Telling the world.. look at this, you see this, this is real and true and even if you ignore it it’s still going to exist and the hourglass is going to run out.
They’ve been helping with bucket lists and medical for the kids, someone even donated books for the kids so they can create their own imaginary world’s to escape to. Every millisecond that I survive is a victory. I wish I was home and free, but then there are times in my life where for a moment you have and are so blessed with and say thank you Lord for me surviving today.
jhdkids.com scroll down and you can donate to the kids 😉
this is my favorite picture because for all the time back then that I pushed for a family picture, I finally got one