Tombstone

Once upon a time there was a girl named Jacey. She lived, she got sicker, she is going to die. No, she did much more than that but that’s all she could ever feel, because when she walks into her own bedroom it’s everything she can’t do anymore. The video camera she used to record her family and friends. That aren’t here anymore. The stairs that her wish pup Sabrael God blessed her with for 13 whole amazing years. The same amount of years her sister had before she died at 13, her name was Princess Karli Belle. I think our Dad died from from a broken heart when she died because 2 months later so did he. Discovering a world of devices, places, people. Best friends that died before she did. Friends that didn’t care as much as the ones who passed away, or i guess relate enough. We discovered a world where Juvenile Huntington’s Disease didn’t exist barely anymore. We need to grow it. Show everyone it exists and that children get it and they need their own help it’s not all HD is jhd and ahd, no It’s Juvenile and Adult HD. It’s hard to want to know change, and get them to see it, as many have tried. jhdkids and kids with jhd are important to show they exist, not less than adults, but the adults are already impounded as HD. Not the point.. she promised until she died she would help these kids.

Somewhere in between school issues, surviving watching your little sister die while she’s singing in the school concerts, to being sick with Ellie’s puppies 2 of them Bentley and Dottie, my service dog. Surprise their mom Ellie died too. Somewhere along the way of change, loosing progressing. Soda, ice cream, smoothies, milkshakes, juice boxes, water.. water and gatorade half and half because gatorade has so much acid in it. Listening to the stuff she set up, working on project, sleeping in the same corner of the room dystonic, same spot every night. Blocking out everything with her many activities, games with family turns into another can’t do. She had so much life she set up even when some failed she set up others. When you fall to the bottom and the highest you can reach is a little less pain and back down to aweful again, laying on a sofa the hardest corner by the coldest window, by the bathroom and hard floor.. getting sick even looking at her computer she used all the time and try movies, she can’t watch, don’t pity me. So many just don’t understand. Not even her own family can understand. She can’t even see most her family, not even her nieces. Lights, noise, dizzyness, vomit, stuck in the bathroom, stuck on the floor in the darkest corner, somewhere in all of this life, she died, before she even really did, which is not yet. She’s praying it’s in God’s Time he’s meant for me. Her Mom promised her she could die at home like her little sister did when it’s time. Often she daydreams about just not waiting, about how much she’s already lived and is ready for the pain to just stop, about how many times in her life she’s had moments like this. About how she doesn’t even know if there will be anything higher than this because if anything we all know this jhd progresses and tears you apart, and you never know if you can get up again because it controls her. Maybe tomorrow the disease will let her get much better or she will finally be relieved of the pain, but saddened at what she will never be able to be again. She will never be in this world as Jacey Mukka again.