Somedays I don't understand how she put up with me, other days I wonder how we even get along? Somedays I wonder why we are so different? Other days I can't get enough of her. Somedays she drives me crazy, somedays I drive her crazy. But you know what...that works for us. She's my mom and I love her more and more everyday.
When I 'take a step back' and look at my mom I am caught in awe of the things that she has accomplished in her life. She's an amazing mother of three. I know that I might be biast (spelling?) in saying that because she is my mom, but in all honesty she is a great mom. Yeah sometimes I don't agree with her techniques or the way that she handles things but in the end I get it. My mom and I haven't always seen eye-to-eye. Throughout my teenage years we disliked each other very much. I think that she saw too much of me in her and didn't like it. Over the last couple of years her and I have really really started to click. We've found our 'goove', what works. And it's awesome, but it's also the hardest thing I've had to do. In getting to know my mom, she's also slowly slipping away from me and the rest of our family.
My mom was diagnosed with Huntington's Disease about two years ago now I guess it was. (For those who don't know the easiest way for me to sum it up is that it's a hereditary disease that affects the nervous system, over time it eventually shuts your body down.) My grandpa (her dad) was diagnosed with Huntington's the year that I was born. So I grew up watching my grandpa 'change'. Which has really helped me but also set me back with my mom. It's helped me in the sense that it kept me informed about the syptoms, etc. But it set me back in the sense that it's that much harder to see it happen to your mom and be completely helpless to stop it. I know that it's something that I can't control, but no matter how many times I am told that it doesn't ease the pain of watching someone you love suffer.
I know that she isn't in any physical pain. It's just emotional and mental. I'm not sure which is better or easier. It's so hard to see her get frustrated when she can't do the things that she used to. I don't even know how to explain it. Take the way that someone you are close to is now, their character I mean, and flip it. Everything is the exact opposite. Strange feeling? I know it all to well. My mom has turned into her opposite. She is no longer the quiet reserved person that she used to be, she is out-spoken, can't concentrate for too long on one thing, has little motivation for anything, and I could go on. Basically I am getting to know her all over again.
It's so hard to see her turning into my Grandpa. Her actions, the little motions that she makes. So much like Grandpa. Which is so scary because I was about 16 when he was at his worst. So I know what these little twitches and choking leads up to. My mom's symptoms are progressing alot quicker then we thought that they would. She's on so many different medications and nothing is making her any better. There's no cure and no matter how many medications she takes it's not going to make it go away.
I feel so ashamed sometimes because I'm embarrased. It's hard to go out in public with someone who everyone else thinks is drunk, or rude, or extremely forward and odd. Sometimes they say it, sometimes they don't need words when their face says it all. That's my mom and I love her but how do I overcome this embarrassment? I know that I shouldn't be at all but it's really hard. People aren't aware of the disease so don't consider it.
I don't understand why she has to go through this. I don't understand why she's not getting any better. I don't understand why people are so judgemental. I don't understand why my brother and sister have to be parents at the age of 15 & 17. I don't understand why my dad has to get to know his wife all over again. I don't understand why no matter how many times I question God about it I never get an answer. I don't understand why I can't find peace with this.
Through all of it though my mom stands strong. She doesn't let anyone see her hurt or her anger. She is the hugest encouragment to me of living life to the fullest. She keeps on perservering.
I guess it's hard for me to since I know that this is what lies ahead for me. I was diagnosed in February 2005 with Huntington's Disease.
2 comments:
hey ash..im glad to read the updates of your mom, i guess to all your questions which are so relevent, i wish i had the answeres you need and would want to hear, but i dont all i can say is the best thing you could do for your mom is stay strong her allow her to see how much you love her and accept her no matter how she acts,twitches ect.
Ash its hard for me to see you hurting in this regard espeically knowing you have the same thing..believe in healing, im serious because it will give hope, and it will be part of your testimony!...we all know there is reasons for absolutly everything even though just cant seem to understand what might the reason for something like this, but through any trial it is supposed to make us stronger..weird hey?but thats what my bible says!
i love you girl and anytime you need to talk about this feel you can come to me..thats what good friends are for!!!
take care
thanks kimmie! i love you babe. your words of encouragement mean bunches to me!
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