18 Sep 2012
The last few days have been fair. I am down in my back and that has made things much more difficult. I have to sit down while I dress Chris and even then it is hard. Chris is doing fair. I don't know if I mentioned this last post but the other morning when I woke him up he told me he had so much to do. I asked him what did he need to do and he said he needed to go to church. For those of you that don't know Chris that well, he is a very faithful person and loves church but hasn't been for awhile due to his health. It kind of got me because the way he said it was almost like he was, as they say, "getting his house in order". Some days I feel that he won't be around much longer. Other days it is better and I have hope for him having more quality time here on earth. After he ate breakfast (he eats breakfast in his room so he can sit and watch Andy Griffith), I looked in at him and he was sitting on the side of bed and jerking his legs around, his body was shaking and he had his eyes closed. I thought that perhaps he was having another seizure. I asked him what he was doing and he said he was trying to get out of a trap. I told him to just lift his legs up and he said he was trying but they wouldn't move. I could tell he was really trying and he couldn't lift them. Freaky because it was all mind over matter. He really thought he couldn't lift his legs because they were trapped. Anyway, got his legs moved and he is sitting in bed watching cartoons. Each day is more and more foggy. I want my brother back. I want my sweet giggliing funny boy that always has a smile on his face and a joke to tell. The season is changing and soon it will be dark dreary cold days and I don't think I can face those days. At least with the sunshine, there is a feeling of warmth and brightness and hope. I know I need to be strong but some days I feel so very weak. I have to work once again to find that joy. It's there. There is alot of joy in life. There still is alot of joy in Chris. He is now watching Scooby Doo and he loves it so. He puts on his scooby doo hat, and I got him a scooby doo bandana so he likes to wear that around his neck. Now that is funny and joyful in such a good way. I had Chris pick out some halloween stuff and we put up some lights around the house today. I need to put the skeleton up in his room that he picked out. I think I'll get some more lights and put them in his window. I haven't been sharing different things to make things easier to care for him or medications and food. You know, helpful hints. I mean to do that but I get caught up in the sadness. One thing I have figured out it and it is working well now-Chris was waking up every morning with his bed wet. I have a plastic cover on the matress and pads on top of that. The fitted sheet is next with pads on it to catch what leaks out. He wears 2 long pads and 2 pull up pads at night. Still, he is wet and so is the bed. Well, I found that if I tape the bed pads down so they don't move around, the bedding is saved and I don't have to wash his bedding every single day. All I have to do is remove those used bed pads and put new ones down. It has helped alot and has made it so much easier on me and my washer lol. Plus, Chris feels better about it too because he felt bad when he would wet the bed. I tell not to worry about it; no big deal but he still feels bad. My sweet little baby bro.