It seems when you start you don’t know the difference, legs give out feet twisting, walkers that dont work with my seizures, my camcorder was my safety blanket, making movies through my Make-A-Wish equipment. so much loss and grief losing family piece by piece.. then you.. shaky.. color changing software for laptop, constantly trying to figure out what these movements events that are still cruel are.. of course every time a neurologist said they couldn’t help i cried, no matter where we travel. I loved reading books even in cars, can’t travel anymore. Can’t read books anymore.. shoved into giving up all the books i loved because i can’t do that now, shove in bed unable to do what i loved puzzles, legos, etc.. ok made alexa read my kindle books using my soundproof headphones still works. I drank everything normal in the beginning, then no soda, then no gatorade, no well water.. push i can drink milkshakes at night but always bottled water now… no running leaping jumping skipping.. lots of falling all the time everywhere and seizures even wake me up mom has to give me more of the meds i already have a zillion of,nausea constantly.. i went from excitement and doings to crying at Karli’s concerts and graduations she was soo little. I would happily give up everything to have her and daddy back and sabrael ellie sully etc.. but we get a candy i can eat its constant..then pushed back to something easier.. pushed back to extremely light things, i keep getting worse from this stupid juvenile huntington’s disease. Some days i get to walk a little farther to be pushed backward again. it’s scary knowing this position you’re in right now on a really bad day can’t move, it’s going to be permanent.. from growing to growing back back back to a baby. My niece is learning better how to say her sisters name, Lilli but right now its wiwwy, and it hurts so bad that my speech has gotten younger then a toddlers, when i now talk talk not online but in my body im losing letters..my R and L s are turning into W s. They’re learning as i get pushed back and nothing to press against is a brick wall and i struggle and my only way to get out is to die.. I trust in God’s Will. When it’s time it’s time.. and it’s all so scary and sad and frusterating, and dissapointing, and grieving yourself as if you’re already dead.. i see the love between my nieces and their family unit, i see Nora yelling no Wiwwy don’ truly scared and i cry because of everything it stands for. Love that i’ve grieved in my sisters who are/were sick. Because of all the jhdkids i love so much going through this. My niece Lilli cries because she miss Karli and never met her. It scares me because it’s just the beginning of her being involved with her dying aunts.. I wish i could save her from it.
One thought on “Pushed away”
Thank you for posting even when you’re sad. We love you and we are feeling a lot of the same things here. I’m very thankful that you document all of these things. You are very brave. And stronger than you know.
Two of our kids went on palliative care this past week…
Blessings and love,