Saturday December 12, 2009

Yesterday was another awful day. I don't mean to be depressing, but it was horrible from the start. Ashley felt super sick all day long. She and I were both emotional, and I was exhausted, emotionally more than physically. We had both been up really late the night before. She wanted to talk again, so we sat up for a long time, chatting and crying and talking about lots of different things. The new thing she is wanting is for her pacemaker to be turned off. I have no idea where that came from. She brought it up the night before last. She wanted to know what would happen to her if we shut the pacemaker completely off, and if it could be done without surgery. I am sure they could simply put the paddle over the generator, and change the settings that way. I had no idea what to tell her when she asked me such a question. I have no idea what her heart would do, or what other symptoms would be created without the help of her pacer. She asked me if she would suffer more. I have no idea. We spoke to Nancy about it when she came yesterday. Nancy felt like without her pacer, Ashley would die very quickly. Her heart rate would fall dramatically, that much we are pretty certain of. It could make her death a very horrible experience. Nancy felt Ashley shouldn't pursue that idea until she at least completes the 10 days of Flagil, and we talk to Dr. Etheridge. With an infection, her body will have to work harder and she will feel more poorly. Nancy is hoping once we get the infection under control, Ashley might feel slightly better. I don't know if she will or not. Without eating, her body will continue to get weaker and weaker. She still can't eat well, although her stomach is better now that it was last week. That is a blessing.

The point of fact is, Ashley wants to go now. She is so tired of hurting. She has no quality of life anymore. She is too sick to enjoy anything. We can't do projects like we once did. Even taking baths has become a huge task for her. She doesn't feel like reading or drawing or playing computer. The only thing she is able to do is lay in bed. Then lay on the couch, then back to bed. She is too weak to get upstairs. She is too weak to walk around the house much. She is done with it all. And I don't blame her. When I was so sick a few years back, life was so challenging. It was all I could do to get out of bed in the morning, and take care of my little ones. I wasn't sick like Ashley is now either, but there was more than one time that I felt like death would be a better option that living such a miserable existance. And it was a horribly miserable time for me!! So in a small way, I have empathy for her plight. The one thing I want, and I hope this isn't selfish, but I want to have her with us for one more Christmas. If she were to die now, Christmas would never be the same for us again. I struggle with Christmas anyway. I hope that isn't a stupid mother's request. I would never want to prolong her agony. We do have to let her go. I know this. I pray every day I can let her go. But it is so hard. It hurts so much!

I wanted to thank those ward members who were involved with the 12 days of Christmas for our family. Today was the 12th day, and we were blessed to have a special experience. A bag piper from Boise came to our house, drove here in the awful weather, to play music for our little angel. It was such a fun experience. Ashley enjoyed it. The boys enjoyed it. We have all enjoyed the various gifts that have been brought to our door over the past 12 days. Our little elves went above and beyond as they served us. So thank you to all who participated in this venture.

Please everyone be safe as the weather worsens. We love you all. Thanks again for so many prayers and for all your faith!!