rawrbearian

So when I was born, my mom found out she had huntington's. Maybe it was a little after, I don't know. But I grew up with this weird woman who couldn't talk well, had some balance problems, but was otherwise ok. Until I became more and more self aware, and realized that she was deteriorating slowly in front of me. It was little things; forgetfulness, her inability to walk properly (swaying a lot, stumbling), stuff like that. As I got older, it got worse.

She was my mom, but she was also (and moreso) the "lady on the couch". She cried. A lot. And that, coupled with her losing her speech over time, and my father (who remained mostly drunk during the whole thing) led me to believe that she was already gone. I didn't talk to her much. I wasn't completely cold, despite what I probably am, and will make myself sound like. I just didn't treat her as my mom. More like a family friend who was staying for an extended period of time.

Both of my sisters were there for some of it, but when she started getting worse, they moved out and started families of their own. So, I was left with drunk dad and myself. I grew distant to my family. I would play outside all the time, at friend's houses. I read a lot, played a lot of video games. Anything to take my mind off of what was happening. I wouldn't invite friends over, cause I was embarrassed. I didn't resent her, and I still don't, I just didn't understand what was going on, and why I was powerless to help.

The beginning of summer vacation transitioning into 9th grade, freshman year of high school, she went into the hospital. We could never afford care, never afford full time nurses. We did have nurses visit, and some of her friends, who would help. But she finally went into the hospital and I knew that was it. She was there for about six months. Week before thanksgiving. I came home and didn't know where my dad or my sisters were. Started to get worried. Then dad got home and all he did was hug me really hard. I didn't even cry really. It didn't hit me for three days that she was gone. Then I cried, a little. A little more. A lot of it was anger, though. Not quite sadness, because I guess she was better off. Anger though, I remember that a lot. Why my mother? Why us? And self loathing, because I didn't take the time to get to know her.

I regret that, deeply and truly, and will continue to do so for the rest of my life.

I wish I had gotten to know her better. I wish I had said "I Love you mom" more. I wish I had said ANYTHING to her more than I did. I feel like such a jerk for not taking more time with her.

I tested negative for it, as did my oldest sister. My second oldest sister refuses to get tested, but has convinced herself that she has it. She's turning 40 this year, but because of other circumstances in our lives, I haven't talked to her in years. We were never close growing up.

So yeah, try your damnedest to go see her. Tell her you love her a hundred thousand times. Remember everything you can about her. Talk to her friends, other family members, anyone! You may not see this, I may get down voted to oblivion for being a jerk with the way I treated the situation in my family, but please do what you can to see her again (and I'm not saying/implying that you don't want to see her, I'm just really stressing that your idea to go see her if you can is a good idea!) I'd give anything to see my mom again, one last time...

Thank you! I am trying very hard to work through the guilt I have...but it's hard. I miss her so much!