Friday January 15, 2010

Right off, I wanted to let everyone know we are going to have a special fast tomorrow. For those of you who are able, or who would like to join in, we welcome you. We need all the help we can get. Ashley has been asking, as I mentioned earlier, about a blessing of release. Tonight was terribly difficult for her. She was so weak, she couldn't get off the bed to use the bathroom. She couldn't sit herself up. She couldn't eat. She tried to color for a while, but didn't have the energy to hold the crayons. She tried to watch TV, but was so tired, she kept falling asleep. She had problems with diarrhea. She was miserable in every way. She cried and pleaded with me, asking if she could have a blessing of release. I didn't know what to say. I wasn't sure when it was appropriate for such a blessing to be given. Does the person have to be in a mostly comatose state? I wasn't sure. But I felt like the right thing to do would be to fast, to plead with our Father in Heaven, if now is the time for Ashley to be given permission for her spirit to leave her body. She is so ready to be free. One of her biggest fears, when we stopped her sotalol, was that she wouldn't die. She would continue on, day after day like she was. That is what has happened. Her heart thumps and bumps around constantly. I know it isn't in a normal rhythm, but still, Ashley remains with us. Don't take me wrong! I am so thankful for every day she stays with us. I wouldn't trade one minute with my angel. I am deeply grateful we were able to have her for Christmas and New Years. I am grateful she and I have had some delightful time together, while the boys were at school. I am grateful Jason has had some special time at home, with Ashley. What a blessing! But now, it is hard to watch her. She doesn't smile. Her sass is gone. Her laugh is gone. Her bright sparkling eyes are dull and empty and full of pain. She can't eat. She can't walk. She can't sit up without assistance. I can't bear to watch her suffer so!! I know, as we fast and pray, we will know what to do. We will know if it is time to let our angel go.

Last night, Ashley and I had a very special experience together. Ashley wanted to go to her room. She hasn't been in her room for a very long time. We sat on the floor, looking at her things, talking about times past, about things we have done together. We talked about her school. We talked about her friends. We talked about her projects, which now she is too sick to enjoy. It was a wonderful bonding moment for both of us. I think, for just a minute, Ashley felt like herself. She was reminded of the happy times, when she wasn't confined to her bed. There are so many happy memories. It was nice to forget the bad for a brief moment in time.

Throughout the day, Ashley remained the same. Her diarrhea was better today. She still went, but not nearly as often as yesterday. Her face was very puffy and distended. At this point, we won't increase her lasix, even with increased swelling. Her breathing is fine. I can't even tell you how grateful I am for that blessing, and YES, it is a blessing she can breathe!! She has other issues, but she can breathe. We will monitor her closely for any changes there. The main concern today: weakness. Every movement was a struggle: sitting up in bed, getting up to the bathroom, moving her legs under the blankets. It was awful! I am sure the lack of food is not helping matters. We tried to find even the smallest something she could eat. Jason, bless his heart, made three separate trips to three different stores to find specific food items she requested. He even skipped his dinner, when it was hot and ready, to run to McDonald's to get her an item she had a craving for. What an amazing dad Jason is!! What an amazing husband I have!! I have to say, he is my lifesaver. He has taken over all the errands. I haven't had to worry about a thing. I can't leave Ashley for long, especially with her diarrhea like it has been. For me to go to the store, would be super difficult. Without complaint, he takes care of it all. He takes the boys to and from school. He runs wherever he needs to get things for Ashley, and also, for me. I love him with all my heart!!! We are a team, and we are surviving because we are functioning as a team.

Once again, thank you thank you thank you all, for the emails I have received. I haven't been able to respond to them, but they are so helpful!!! When I have a moment of weakness or despair, never fail, in my inbox will be a note of encouragement and love. Then I am reminded that I am not alone. I am reminded I can keep moving forward. Love you all!! Please know how much everyone means to our family!! We are so blessed to be surrounded by such good people!!!