This Is Not Okay

I’m 25, almost died from juvenile huntington’s disease several times in my life so far, while my family watches that we remember watching my little princess karli belle pass away at only 13, and watch my daddy go from family man to deadly scary and he died in a nursing home 2 months after karli except he had adult huntington’s disease,

It is not ok that we lose the baby and father of the family 2 months apart, its not fair that my older sister is watching me go through this as she is positive for juvenile huntington’s disease, and getting symptoms worse while im dying and we lost our family, its not fair my mom becomes my 24/7 caregiver servant, it’s not okay, and living feeling the symptoms watching my little sister and dad progress and die, and then get sicker and sicker and watch my older sister get sicker too this is not okay, nothing in this insinuates its okay nothing!! and it’s not fair my niece from my healthy sister has to watch us this happen to her aunties never getting to have met her auntie karli, not okay and even if you don’t think of it the same as we do but your furry kids see it and try to help too and it hurts them too the losses hurt them so much and it hurts thinking about any of this because it shouldn’t exist its something that shouldn’t happen it’s a family torn apart by a monster that won’t stop until my mom loses her husband and 3 children, karli me and erica, karisas not at risk so neither is my niece and lillis dad isnt either all this pain ontop of the pain you physically and mentally get from the disease and the acts it makes us preform that a 25 year old would never regularly have happen to them, i do wonder if i wasn’t sick would i be a full functioning adult? it would all be so much more okay then this


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.