Friday December 25, 2009

The past couple of days have literally flown by. I can't believe it is already Christmas night. Before we know it, it will be New Year's Eve. Time flies when you are having fun.

I am very pleased to report our angel has faired well. While not feeling good by any means, she has not had any more episodes like she had the other night. Today she felt good enough to get up with her brothers and open the "Santa" presents. She stayed in the living room for about 15 minutes before going back to bed. We were up late last night, so it was no surprise she wanted to rest. I hated to wake her up, but she did not want to miss the early morning opening of the gifts. I promised her when she fell asleep last night, I would wake her up with her brothers.

After the first round of gifts, we ate breakfast and then headed back to tackle the tree presents. Ashley again came back out to be with us. I was so glad she felt good enough to join in. I have to relate a really heart touching thing that happened after we finished our tree presents. Ashley got a Build a Bear kit from the hospice workers. She was thrilled about it and opened it up to start putting it together. The bear she was building had to be sewn around the edges. She sat on the floor for almost half an hour working in that bear. I was in the kitchen working on the never-ending dishes, (ha ha ha), when I noticed she was laying on the floor. She got so tired, she simply tipped over on the floor and went to sleep, sewing needle still in hand. I just wanted to cry for her!! We tried to move her into the bedroom, but she woke up and started crying. She thought she ruined her bear forever. I have no idea why she thought that. I sat with her and read through the instructions. She hasn't messed anything up. It took me a while to convince her of that.

This afternoon, we encouraged Ashley to rest as much as possible. It was difficult with the boys running through the house like wild monkeys, but we did our best to keep them sort of under control. Grandpa and Grandma Winn, as well as Ashley's aunt and uncle, Geni and Nick, were coming all the way from Wyoming to see her, and we wanted her to save her energy for them. She was so thrilled to see Grandpa and Grandma. She loves her Grandpa Winn. By the time they arrived, she had rested enough she was able to come into the living room and open the gifts they brought. She visited a little bit, and then went back to bed. Her wonderful Grandpa, and Grandma too, came into the bedroom and spent the evening just sitting by her side. I am so glad they were able to be here. I was worried if they weren't able to come, they would not get to see Ashley before she dies. She is so ready to go. Tomorrow is the day we stop her metoporal, and no one knows how long she will live once we stop that medication. She is already having more arrythmias. Metoporal helps control those arrythmias. Of course, nothing with Ashley is predictable. But she is ready to be done with everything.

For me, this day has been super difficult. I have been emotional since we had our Christmas program last night. I was hoping I would feel a little better today, but I didn't. My heart felt so heavy. It was like a big weight was on my chest all day. As I watched Ashley struggle, as I looked at her swollen, broken body, as I dried her tears, part of me wished for her suffering to end. The other part can't let go. The other part is grieving to the depth of my soul. I don't know what to wish for. I don't know what to pray for. It crushed my heart to know this is our last Christmas with our angel. I just wanted to curl up in a little ball and cry until I have no tears left. I would have done that. But I knew how upset Ashley would be to see me cry so intensely. She is so sensitive to my feelings. The minute I am upset, she blames herself. I don't want that. I can't add to her already unbearable burdens. It is so difficult to find a balance. I feel so out of balance right now. I can't focus. I can't sleep. I feel sick. I feel sad. I know there is light at the end of the tunnel. Right now, it is hard to see the light. I am so scared this week is going to be even harder than the last and I don't know if I am up to the task. And I have to be. Here is where faith comes into play. I know the only way I am going to get through this, the only way Ashley will get through this, is if we have faith. We have to dig deeper than we have ever dug before. We have to reach harder than we have reached before, to our wonderful Father in Heaven, to His Son, Jesus Christ, who can see what we can't. I can't do this alone. There is no way. I don't have the strength. I will crash and burn. Please keep praying for all of us. We need it. Oh how we need it!!