1st Blog post

I don't know if i will keep this up or if blogging here will be the answer for me. But i find it important in the wake of all i have learned about this terrible disease to chronicle my feelings about it and document this journey in some way. Even if it's just to vent. I'm struggling with how to be there for my mom, and be 'ok' with her decisions. I just don't agree with her negativity and the way she's choosing to deal with this. We just have different philosophies on life. But at the same time... i'm not the one who's suffering, you know? I'm not the one who has to consider a feeding tube. I'm not the one who can no longer hold conversations with people. My mom has always been a talker. She loves conversation. I remember even when i was a teenager, how we would sit over the kitchen table over dinner and discuss our thoughts and feelings about a particular subject. I can't even begin to imagine what it's like to not be able to do that anymore. So regardless if i would do things differently, i must remind myself to be patient and loving.. no matter what she says to me. This is my task. I know i can help her in all the physical and mundane ways. But the emotional? This is my challenge and for her sake i must learn to do this. It's not about me. Another user on the forum posted something that i think I will use as a mantra for awhile: 'Support not guidance; love not lectures; a helping hand and not a steering wheel.' So speaking of mundane, i think we are going to try and get an ipod touch with itext and proloquo2go on it. It seems the smartest option to start with, especially if my husband can figure how to rig the speaker to it in an eloquent way. Mom is having trouble with getting state Disability. Not sure what happened but she was having trouble talking to the guy over the phone and she must have said something upsetting because abruptly the guy blurted out 'I'm not dealing with this!!!' and he hung up on her. She's really upset. My uncle is going to go down there and try to get on the phone with her and the state to try and clear it up. Baby steps...