Sunday February 7, 2010

I don't think there is anything more unbearable that watching a precious child suffer day after day, and not be able to offer any comfort or relief. Thus has been my plight over the past couple of days. Ashley has continued to suffer tremendously. The pain in her back and sides has been very intense and non-relenting. Even with three separate medications, she has had no relief. On top of the pain in her back, her legs have been very sore. The arm that once had the clot has also been paining her. She was asleep yesterday and in her sleep she cried out in pain because of her arm. I was worried she might be getting another clot in that arm, but it is not swollen, so I don't think that is the case. Truthfully, I think the aches are because of low protein and low oxygen levels. She has been very dusky. I am sure her O2 levels are desperately low. I don't think I have mentioned this in previous blogs, but she isn't wearing her oxygen anymore. Again, this decision was made by her and approved by the home health nurse. At this point, it is all about comfort and oxygen, while comforting to me, is not comforting to her. It dries out her nose and makes it bleed. She burns more energy fighting it than she gains from wearing it. That was a hard thing for me to let go. It killed me when we made the choice to leave it off all the time. I would turn it on and lay it by Ashley on the bed or on the floor next to the bed, hoping she might want to wear it. The other day, when Nancy was here, Norco came to refill the tank, and Nancy suggested I let them take it. They could have. But I just couldn't let it go. I wanted to keep the tank in Ashley's bedroom for a little bit longer. Sometimes accepting these decisions is so heart-wrenching!!!

Thankfully, even though very uncomfortable, Ashley was able to have a decent night last night. She was up only one time, but did have a hard time falling back to sleep. I had to give her another dose of pain medication so she could relax enough to go back to sleep. When that pain kicks in, she sobs in agony. It is awful!! I prayed and prayed and prayed that Heavenly Father would lift her burdens. I felt so desperate at that point, lying there in the darkness, listening to her painful cries!! I know my prayers were heard last night. Within a short time, her cries stopped. Her body relaxed. Her breathing slowed, and she was soon fast asleep. Oh what a blessing prayer is!!

Today started slowly. Ashley did not wake up until after 9:15. And when she did, she was in horrible pain again. I immediately pulled up her morning meds and gave her another dose of pain medication. It took well over an hour for her to feel a little relief. Eventually, Ashley felt good enough, she asked to take a bath. She woke up feeling very sweaty and sticky all over her body. She worries all the time that she is stinky. Today she was especially concerned because our wonderful friend Tasha Johns was coming over to cut our hair. I felt bad Tasha had to come on Sunday, but as it worked out, today was the best day for her and for us. Ashley has been wanting her hair trimmed for a long time, but hasn't felt like having it cut. She asked me the other night if we could ask Tasha to come over to the house, instead of us going to her salon. I asked Tasha, and she said it was no problem at all. Ashley felt good enough to come out into the kitchen for her haircut, and then she went right back to bed, where she stayed for the rest of the day. But at least she was clean and her hair looked darling!!! (0: Thank you Tasha for coming over to make us beautiful again!! Your talents are simply amazing!!!

Jason and I spent the rest of the day entertaining boys and trying hard to keep Ashley as comfortable as possible. There isn't much comfort to be had. She would lie in one position and then change to another, with no relief to her pain. Thankfully, she was able to eat a little turkey for dinner. Other than that, she didn't eat much. And as always, she had lots of diarrhea. Tonight her poor stomach is very swollen, as is her face. She is so discouraged and super emotional. She just wants to be done with this earth life. She wants her suffering and pain to end. Her faith is truly being tested to the full extent. Tonight I suggested she ask her father for a blessing, and her response was "Why? It won't do any good." I know it is hard for her. She knows Heavenly Father loves her, that He is watching over her, but she also knows He won't take her until it is her time to go. She had a blessing of release a very long time ago, and she is still here. I don't know how to help her keep the faith. When she suffers so, when she hurts so much, with no end in sight, no amount of words can lift her dampened spirits. She is the one who has to pray for comfort, for peace, for understanding. She was promised, in her patriarchal blessing, that if she asked, the Holy Ghost would be with her every hour of the day, lifting her burdens, helping her to have peace, but she would have to ask for that blessing. I haven't read her blessing with her for a very long time. Perhaps now is a good time to do so. How my angel needs to know, she is not alone!! Wonderful blessings are in store for her! Her pain will one day be taken and she will be in blissful happiness in a glorious world!! I know that will come.