Friday January 22, 2010

Do you ever feel like you are in the middle of a terrible storm? Several years ago, that happened to my family. We were on the way home from Utah and had just passed Tremonton, when we got into a terrible snow storm. The wind was howling and the snow falling quickly. Before we knew it, we found ourselves in white-out conditions. We couldn't stop for fear someone would not see us and hit us. We had no choice but keep moving forward. My dad was driving at the time, and I remember having complete faith in him as he guided us through the storm. It was so frightening, not being able to see. But our prayers were heard that night. We were able to get through the storm, to safety. I know we were blessed.

In a way, that is how I feel now. I feel like we are in the middle of a terrible storm. We can't see. We can't stop on the road. We have no choice but to keep moving forward, constant prayers carried in our hearts. We have to trust in someone who can see, who knows the path and with faith, will guide us to safety and peace.

Today was a day of peace. This morning, everything seemed to be in balance. Ashley was comfortable. I won't say she wasn't miserable, but her pain was under control. Her stomach was not hurting. She was able to go three hours without diarrhea, which was a huge blessing. She was able to nibble on a little food. Her face looked less swollen and her color was alright. When Nancy came, she thought Ashley looked comfortable too. At this point, that is our goal, comfort. I always rejoice inside when Ashley has those choice moments where she isn't suffering. The hard part is, we never know when those moments will go away. She may be having a comfortable day, but in a matter of minutes, could go the other way. She could have another major arrythmia, and be in agony, or be taken from the earth. There is no textbook for my angel. There never has been, and sometimes, that drives me bonkers!! But at the same time, this whole experience is part of something greater. Our wonderful Father in Heaven has always had a plan for Ashley. He knows what we don't. I have great faith, if we trust in Him, we can move from one agonizing day to another, and not fear what may happen in that day.

Tonight, Ashley remained comfortable. I made homemade chicken and noodles for her, at her request, and she ate two bowls. Unfortunately, the stupid PLE kicked in with a vengence, and she ended up having diarrhea afterwards. At this point, we know it will happen and we deal with it. She told me she would rather eat what she wants, and deal with the diarrhea, than to avoid the food altogether. Thankfully, the nausea has been at bay for a couple of days now. I pray that stays away. There is nothing more agonizing that feeling sick to your stomach.

What the next few days will bring, I have no idea. Nancy and I talked today about Ashley's pain medications, and what I should do should she go into another awful arrythmia. At this point, again our goal is comfort. We discussed using a little morphine, in addition to the hydrocodone and ativan. I haven't used morphine for a while now. The hydrocodone is working well, and Ashley prefers it. Nancy said if I have given her the highest dose of hydrocodone, and Ashley is in an arrythmia, and in pain, I can give her a little morphine to help ease her discomfort. It is a little scary for me to think about those arrythmias. They are frightening in every way! But we have to be prepared. I can always call Nancy, should something like that come up, but I need to be prepared to give Ashley more medication than would normally be necessary. I need to be prepared, should Ashley decline enough she is in a semi-comatose state, and we have to control her pain. It was a hard discussion. I hope we don't have to face Ashley like that. But it isn't up to me. Faith! Faith! Faith! That is what is it going to take to keep moving forward! (0:

Thursday January 21, 2010

Every day feels like a roller coaster. Today was no exception. Ashley woke up feeling better than she did yesterday. Her face was not as swollen. Her eyes looked a little brighter. She wanted to come out into the living room for a while, which she did. It was nice to see her be out of the bedroom. The sun was so bright today. It brightened my spirit. I don't think Ashley could help but feel the warmth in her heart too. (0:

Throughout the morning, she did well. Her nausea completely subsided, and she asked for food. The PLE , (protein losing enteropathy), attacked her with a vengence. Everything she ate went straight through her. The diarrhea was a huge problem all day long. She was hungry, and felt like eating, but had a hard time doing so because as soon as she did, she had to run to the bathroom. (Okay, she can't run, but you get my meaning! When you gotta go, you gotta go!) I have no idea what we can do for the PLE. There is not much to stop the diarrhea. Believe me, we have tried everything. It is a matter to certainly pray about. The only help she will get for this problem, will come from her Heavenly Father.

As far as her pain level, she did excellent. Her back and arm did not bother her. In the afternoon, and throughout the evening, her stomach was awful. Her poor bottom is sore from going to the bathroom so much. I did help her take a shower tonight to help with the soreness. Oh how exhausting that is for her! As soon as I had her washed and dressed, she fell asleep. I knew she would. She told me, even with the exhaustion, it felt so good to wash and soak her sore places in the warm water. I was glad I could offer her a little comfort.

Tonight, when she woke from her nap, she was hungry. We thought and thought and thought about what she might attempt to eat. She finally agreed on potatoes and gravy. She ate an entire bowl, which was miraculous! But in a matter of minutes, she was on the potty again. But at least she was able to have a little bite of food in her belly. My poor angel!

At the moment, she is very sleepy. Her speech is slurred, but I know it is from the pain medication and the ativan. I do feel she is at peace. She and I have talked extensively about Heavenly Father's plan for her. She was so concerned today that she had offended her Father in Heaven by praying so many times to die. She told me she understands that her life is in His hands. She is ready to go at any time, but she will trust in her Eternal Father. He will take her home when it is the right time and He will take care of her until that time. I am so thankful for her faith! She is such a strong young lady and I tell her how proud of her I am every chance I get.

One day at a time. One hour at a time. Constant prayers. Unwavering faith. That is our formula for survival. Thank goodness for the gospel of Jesus Christ, for the plan of salvation, which constantly reminds us of our purpose on earth, of where we came from, why we are here, and where we are going. I would be lost without it!!

Wednesday January 20, 2010

My dearest friends and family, I have to start off by thanking everyone for the many prayers, thoughts, and service given to our family. We wouldn't make it through this time without so many wonderful angels, surrounding us with love. There is no way we would make it. I feel like the windows of heaven have been opened, day after day. I am so grateful for every moment of peace and comfort. I have had numerous moments where my heart is lifted, where the Holy Ghost fills my soul with peace. I need to feel that peace. I need to know I can do this. I will never be able to thank everyone enough for helping us so greatly!! Thank you!! Thank you!!! Thank you!!!! Thank you for making us better people, through your faithful service and love.

Last night was a better night. Ashley was exhausted. She took her medications early and fell asleep around 9:30. She slept peacefully until 4:00. What a blessing!! I didn't sleep so restfully. I woke up many times, checking her to see if she was still with us. I had no idea if she would live through the night. But it was not her time to go. When the light of morning broke through the bedroom window, she was still here.

Through the course of the day, she remained the same. The nausea wasn't as severe today, although she still had a couple of times when she felt sick to her stomach. Her facial swelling remained the same. I think the swelling over her right eye improved the most. Yesterday that eye looked awful! They both did, but the right was the worst. Thankfully, she seemed more at peace. She was still miserable, but her misery wasn't so intense. I know that was a direct blessing from heaven. Heavenly Father is watching over her. If she is to remain here on earth for a little longer, He will help her to endure. I know this!! I know it! I have witnessed it!

Tonight, she was tired. She slept off and on all evening. She didn't feel like eating, and didn't drink much. The main thing she wanted was for me to sit with her and stoke her arm and neck and face. We sat together, mother and daughter, for a long time. Jason, bless his heart, took care of everything else so I could. He took care of the dishes, helped the boys with their homework, ran to the store, ran to the pharmacy, ran to get Ashley breadsticks, and mediated the disagreements between the boys. He is such a wonderful man!! I thank Heavenly Father every day that I have him as my eternal companion. I would be nothing without him! I couldn't make it through this trial without him. He spoils me rotten every day. He compliments me, even when I wake up looking like the living dead! (0: He hugs me constantly, reminding me every chance he gets how proud he is of me, and the person I am, and the strength I carry inside. Heavenly Father knew I needed him. He knew Jason was the right man to be by my side, comforting me, keeping me calm, leading our home in truth and righteousness. I would be so ungrateful if I didn't express my deep love for him, for his forgiveness and unconditional love. We are a team. Forever.

The one thing Ashley wanted to do today, was to work on leaving messages for those left behind on the earth. She and I have been discussing this for a few days now, but it was something that we haven't been able to do until tonight. Ashley said it needed to be done, before she was too sick to tell me what she desired. She went through each member of my family, Jason's family, all her cousins, her grandparents, her good friend, and dictated to me what she wanted to tell them after she is gone. Oh my gosh! As if my heart isn't already ripped into pieces! I am going to save these messages for a later time. Ashley and I have a plan for them. I know it will be special when the time comes to share those messages for all of the people she loves so dearly.

The other discussion we had tonight, was about prayers. Ashley has astounding faith! She does! She always has. Tonight she asked me if I thought, Heavenly Father thought Ashley was angry with him because her prayers have not been answered in the way she desires. She prays every day to be taken from the earth, to be free from her burdens. She is still here, and I think she may be here for a little time yet. I assured her, Heavenly Father knows she is not angry. I explained to her that when we pray, we have to pray Thy will be done. Prayers aren't always answered in the way we think they will be. We have to trust in God. He is all knowing. He is all wise, and He knows what is best for his children, even Ashley. If she is here, there is a reason she is. He will bless her to endure. He will give her the strength to live a little longer. He will fill her soul with peace. I know it! And tonight as we discussed this, I knew she knew it too. Thy will be done. If we all continue to pray, and trust in our Father, we will be filled with peace. We will have the understanding we need. Our hearts will be comforted as we watch Ashley day after day. Don't ever doubt that!!!

Tuesday January 19, 2010

Ashley has continued to decline through the course of the day. When she woke, as I mentioned in my earlier blog, the first thing she did was try to throw up. Thankfully, after a few minutes, she was able to calm down enough to get her medications down. After that, she slept. I stayed awake for a little while, but soon the exhaustion got the better of me. I went back to bed around 11:00 and slept off and on until 1:00, when Ashley woke me up to help her get to the bathroom. She was nauseated then, but I couldn't give her any nausea medication for another hour. I did make her some peppermint tea. I made some for me too. As you can imagine, my stomach was in knots.

For the remainder of the afternoon, she was so tired, she kept drifting off to sleep. She would sleep for a few minutes, then wake up to make sure I was still at her side. All she wanted was for me to hold her hand and stroke her cheek. She wanted me to be right by her side, even when she was sleeping.

At 3:00, she wanted to go out into the living room. She stayed out in the living room for almost an hour, but had to lay down on the couch after only five minutes of sitting up. She looked so awful! Her face was so swollen, her eyes looked like little slits. Her speech was slurred and she was terribly pale. While she was in the living room, she wanted some chicken noodle soup. She took one bite before getting sick again. I helped her back into the bedroom, and she promptly fell asleep again.

The one special experience that she and I had today, was after she had gone back into the bedroom. At that time, she was having chest pains again. She felt dizzy and desperately sick. She wanted me to pray with her. She offered the most heart wrenching prayer! She could barely speak. She thanked her Father in Heaven for her family, for her mom and dad who have taken such good care of her. She plead with Him to forgive her of any sins she may have committed. She told her loving Father she was ready to go. She told him she felt her mom and dad and brothers were ready to let her go, and that we would be alright when she did. She told Him she wanted to come home. She was so tired of the pain and suffering!!! She prayed that we would be able to let her go, that we would be comforted. She told her Father she loved Him, and that she knew, He would help her. All I could do was cry!

It wasn't more than 15 minutes after she finished her prayer. She looked at me and told me that she felt so warm and happy inside. She said she hasn't felt the Holy Ghost so overpowering for a while. She said, "Mom, I know Heavenly Father is with me. He told me that you would be alright. It is okay for me to go now because I know you will all be alright when I do."

For the evening thus far, she has sleeping. She did try to eat a little, but was too tired. But you know what? She is at peace. I don't see the fear, the pain on her face tonight. She is in a place where she can rest for a time from her burdens. I know that is a direct answer to prayers.

I know many of us have questioned why Ashley has remained on the earth for so long. We have wondered in the silent chambers of our hearts why she hasn't been able to be relieved of her pain, despite her great faith and desire to be free. The one thing I know, and I do not doubt, is that God has a plan for her life. I have known this since the day she was born. I knew this when she was two and survived all those surgeries. I knew this when we brought her home, (she was 2), and she declined so much, they told us she would die. They told us her heart wasn't even pumping, just rocking side to side. She was so ill, the Make A Wish Foundation granted her a wish. In January 2000, they sent us on a trip to Sea World in San Diego. But she didn't die. She lived. She grew stronger every day. I still remember the day we returned to Primary Children's and she was improved so much, one doctor had to come look at her to believe she was that well.

We knew she had a plan at the age of 5, when again her heart was in trouble, and they didn't think she would live much longer. We knew that when she got to first grade, and the electrical system in her heart was all out of whack, they didn't know what would happen. I could go on and on. Her life has been one miracle after another. There is no doubt, she had not yet fulfilled her mission on earth. But now, her life is drawing to a close, and I feel she has fulfilled her purpose. Perhaps these last few days have been for me, to help me let go. I don't know. But I do know, this sweet angel has impacted so many lives. I don't think she will ever know how much she has touched all of us, inspired us to be better than we thought we ever could. So many have given of their time and talents to help us, to lift our hearts, to help us make it through another day. What a blessing it is to serve! I can't tell you how grateful I am to have been the chosen vessel to serve this valiant young lady. I have learned so much from her!! Heavenly Father knew I needed her!! I love her with all my heart!!! We will see what this night brings!!

Tuesday January 19, 2010

Exhaustion! Distress! Worry! All words rolling around in my head this morning. I have no idea what this day will bring, but I pray constantly I will be strong enough to keep moving forward.

Yesterday was actually a peaceful day. While Ashley wasn't any better, she wasn't any worse either. Her breathing was fine. Her face looked good. Her swelling remained the same. Her stomach wasn't bothering her as much. I felt pretty good about how she looked. In fact, my heart was silently joyful she was still with us and looking well. While her appetite remained small, she asked for food. I always rejoice when she wants to eat. To me, eating is, in a way, a small victory still. In case you can't tell, I was very thankful for one more day.

As the day wore on, Ashley declined. By evening, she was feeling poorly. Her face and body looked more swollen. She was having a harder time breathing. At supper time, she was hungry, but her stomach was gurgling and carrying on. I fixed her three different things trying to find the one she might be able to take one bite of. No luck. Shortly after 10:00, Ashley started into another major arrythmia. I didn't realize at first that's what was going on. She told me she needed to throw up, so I ran and got a pan for her. She heaved and heaved but nothing came out. At that point, she looked awful. Her oxygen levels dropped drastically. She literally looked purple all over. Her fingers and toes were so cold and discolored! She was so weak and lightheaded, she couldn't sit up. I grabbed her oxygen and encouraged her to at least breathe a little in. I was so scared she would pass out. At that point, it was all she could do to keep from throwing up. The nausea overtook her. She didn't tell me she was having horrible chest pains in addition to the nausea. But she didn't have to. Her heart was beating so hard, her entire body shook from head to toe. I don't think I have ever felt her heart beat so dramatically!! It was simply frightening!! I ended up giving Ashley her nausea medication, which she promptly threw up. She was so sick at that point, she couldn't sit up. So she laid on her side to throw up. She wanted me to rub her chest and stomach. I couldn't even give her more ativan or hydrocodone to help her calm down. She had taken a dose at 7:30, and couldn't take more until 11:30. So we sat, and waited and prayed. She asked me to pray with her. She offered the first prayer. In her prayer, she pleaded with her Heavenly Father to take her home, but only if it was the right time. She told him she couldn't do it. She couldn't carry her burdens any longer. Her words, "Please, take this pain away! I can't bear it! Please, take it from me!"

She prayed if she lived through the night, she would be comforted and that she would understand why she wasn't taken home. Oh my goodness! I was so numb at that point, I couldn't feel anything. I prayed and pleaded with Heavenly Father in her behalf. I prayed if she was meant to go, she would go, and it would be peaceful. I prayed for His mercy for my angel!!! I prayed, no matter what, we would accept His will for her. We would be able to keep moving forward.

I stayed by her side. She tossed and turned for a very long time. I did everything to provide a distraction. I read to her, we watched a movie, I told her a story, I rubbed her back, stomach, and chest, I held her hand. I didn't know what else to do!!

As you can imagine, I woke up a bizillion times in the night, checking on her. She was up and down and up and down. The chest pain and nausea finally subsided enough she was able to sleep a little. She did have to get up to go to the bathroom three times. That was an adventure with how weak and sick she was. I think we both finally fell into a deep sleep about 5:00.

I do have to say, in my pleadings and constant prayers last night, I didn't feel like it was her time to go. I felt like she would live through the night. I have no idea what this day will bring, or if she will live through another day. She looks awful this morning. Her color is terrible. Her face is horribly swollen. Her speech is slurred. She is nauseated and weak and had to throw up as soon as she sat up in bed. My only prayer is that this suffering will end soon. I can't bear to watch her go through another night like last night. I can't bear it!!! When she is the same, not any worse, I have an easier time wishing for her to stay with us. But not after last night. Perhaps that was what I needed to see so I will stop wishing for her to live another day.

Please, please pray for us! Today I feel like I am falling apart at the seams! My heart hurts! I know the only comfort will come through prayer, through my faith in Jesus Christ!!! I pray it comes!!!

Sunday January 17, 2010

Super fast entry tonight. I am going to spend this night with my angel.

Ashley had her blessing tonight at 6:00 p.m. Up until that time, she was very uncomfortable. Not much had changed, and she was emotional and in visual distress. After her blessing, which her dad and Bro. Squires gave to her, she was at peace. I can't describe the feeling. It was like her burdens were literally lifted. She was able to take a bath, and eat a little bit. She took her meds and now is ready for bed. I have no idea what is in store for her. But I know Heavenly Father is watching over us. I know He is watching over our angel.

I am going to go enjoy the night with her.

Saturday January 19, 2010

Oh what a day! We were blessed with the opportunity to fast. I was incredibly proud of the boys. They didn't even blink an eye when we had a family counsel, requesting them to fast with Jason and I. We explained to them the reason for the fast, that Ashley was ready to return to Heavenly Father and was asking for a blessing of release. They were expressly grown up as we explained what that was and why we were were fasting about it. This morning, they got up, and without complaint, happily fasted for their sister. I couldn't believe how willing they were. There was a very special spirit in our home. We had the boys fast until lunchtime, and then we prayed and ended their fast with them. Jason and I continued fasting until dinnertime.

Over the course of the day, Ashley remained the same. She had lots of dizzy spells and moments when she said her eyes were crossed. That happened three times when she was using the bathroom and it was very frightening for her. Her appetite was not great, but she did agree to eat a popsicle, but only after she knew the boys weren't fasting anymore. She didn't want them getting upset seeing her eating, when they were not. Even desperately sick, Ashley was more concerned for the welfare of her brothers that her own misery. I will never cease to be amazed at the inner compassion of my little angel. Even tonight, after dinner was finished, when I was helping her get to the bathroom, she was deeply concerned that I hadn't been able to eat yet, after fasting all day. She told me she would be super quick so I could eat my supper while it was still warm. Oh my goodness how she melts my heart!!!!

Tonight her dad and I came into the bedroom with her. We all three discussed the feelings we had after fasting today. She was very upset at the time. While we were saying family prayer, she tried to go to the bathroom by herself. It exhausted her so much, she had a hard time climbing back into bed and then she couldn't breathe. We found her in a crumpled heap, barely on the mattress, crying her eyes out. When I asked her why she hadn't paged me on the walkie, (which is our system when I am not in the room with her), she told me she didn't want to interrupt family prayer. Can you believe that?? Here she is, so sick she can hardly sit up, let alone climb off and onto the bed, and she is more concerned about interrupting family prayer than about falling!! Bless her heart!! I held her and she sobbed and sobbed and sobbed. She was so scared Heavenly Father would say no, that she couldn't have a blessing of release. She even prayed for strength to accept whatever answer we received. We know, beyond a doubt, it is time to let her go. She is ready. We are not ready, but we will be alright. I don't think a person is ever ready to lose someone they love so much!! The most important thing, is to make sure Ashley knows we are okay letting her go, that we will be alright. We won't be angry. She asked Jason and I two times if we were upset she wanted to die. We both had to gently reassure her we were not angry. We were sad, but never angry. All we want for her, is for her to have peace. She deserves it. She has endured bravely for so long.

After our talk, Jason gave her a very special blessing. It was not a blessing of release, but he did bless her to know that it was alright for her to let go. We were not angry she wanted to return to her Heavenly Father. We were ready and willing to let her go, and we would be alright. It was a beautiful blessing!! I can't believe the powerful blessings Jason has given over the past while. WOW! How thankful I am for the priesthood, that I married a worthy priesthood holder who is in tune with the spirit, and can use his priesthood at any time, day or night. After the blessing, we sat and cried and held our angel. Tomorrow we will make arrangements for another priesthood holder to come and help give Ashley her blessing. She was at peace with that. I am at peace with that. Jason is at peace with that. I know in the strength of the Lord, nothing is impossible. We will be strong. We will keep moving forward.