Monday February 1, 2010

It was so nice to have my parents here for the weekend. I know they felt like they didn't help much, but they truly did. If anything, the emotional support was a blessing. When my parents are here, I feel like I am wrapped in a warm blanket. The problems don't seem so big. I know they will be blessed for taking the time to come and visit with all of us here.

Ashley didn't have such a great weekend. On Saturday night, she was up and down all night long with horrible diarrhea. She hadn't eaten hardly a thing on Saturday. She tried to eat her steak in the morning, but her stomach was so upset, she ate three bites and was finished. Over the course of the day, she was unable to eat. By dinnertime, she was so hungry she wanted her dad to get her a McDonald's kids meal. It wasn't the most healthy choice, but these days, we don't care if she eats healthy. Food is food, plain and simple. I am positive those greasy nuggets were what set her off. She took immodium before she ate them. She always reminds me to give it to her. I really thought she would be alright. Before bedtime, she didn't have very much diarrhea, but for some reason, about 1:00 it started and it didn't quit until after 6:00. We were both completely exhausted! Poor Jason didn't have a good night either. He hasn't been sleeping well for a very long time now. He wanted to get up and get the boys to church, but being up all night long as well, he was unable to get up. We did make sure to teach the boys their lessons so they didn't miss out on church altogether. I feel horrible we are not going to church right now, but we are doing the best we can. I know Heavenly Father knows we love him and we love church and we love the gospel. When our circumstances permit, we will get to go back. I can't wait to be in church again. I am so lost without it!!

So as you would imagine, Sunday was not a good day for Ashley. She was super emotional and didn't feel a bit good. She wasn't able to eat much. It wasn't that she wasn't hungry, she just hates eating and then having the food go right through her. She told me it was pointless to try to eat. It would just upset her stomach and give her diarrhea. I didn't know what to say to that. It is true. Food of any kind upsets her entire digestive system. She was able to eat better last week. That was such a blessing. But the tables are turning again. And it is so discouraging to my little angel!!

She was able to rest a fair amount over the course of the day. And thankfully we had a better night last night. I do so much better when I am rested, and I know Ashley does too. My parents chipped right in this morning and helped me get the boys ready for school. They also cleaned the house so I could take my shower and get ready for Nancy to come. It was nice to have help cleaning. I have to say though, Jason does a fine job helping me with housework. I never feel overwhelmed by the work that needs to be done. If something is not completed, he will step right in and finish it for me, whether it be vaccuuming, cleaning bathrooms, finishing dishes, supervising bath time, etc. What a trooper Jason is!! (0: And he never, EVER complains. Never. Not even when he is dead on his feet. He will come home and pitch right in. I love him so much!!

Ok, sorry, had to gush again. These days, I can't say enough wonderful things about my dear husband. He is my right hand. Well, this afternoon, Ashley was very tired. She slept before the boys came home and she slept after. While she and I were watching TV tonight, she fell asleep again while I stroked her face. She loves me to run my fingernails over her arms and face, just like her dad. She did attempt to eat a little bit, but only succeeded eating two pieces of string cheese. She didn't even down her popcicles. Tonight she had another episode of chest pain and irregular heartbeat. It hurt so badly, she started crying. I have to say, I am pretty darn proud of myself when those times happen. I didn't freak out. I talked calmly to her, and got her some pain meds. I sat with her until she felt better. Thankfully, it passed within a few minutes. She is super tired now, and thankfully the pain is gone and her breathing is alright again.

So we are off again on another roller coaster week!! I am just so grateful Ashley is alright at the moment. One day at a time. One hour at a time. One minute at a time. Faith in every footstep. Keep moving forward. That is what we will do.

Saturday January 30, 2010

Today wasn't as good of a day for Ashley. She didn't sleep well last night, and was extremely tired when she woke. But that wasn't the main problem. She told me she felt sick, all over her whole body. She wasn't able to eat, (not even the steak!). She was emotional. Every little thing set her off. She was watching the Hannah Montana Movie, and the song Butterfly Kisses came on, and she started sobbing. She told me that song is one that she loves and if it was appropriate, it would be one she would choose for her funeral. Well, of course, that set me off and we both sat crying together. I held her for a long time. She then started apologizing for crying and for making me cry. Oh my goodness my little angel girl is so selfless! Here she was, feeling so ill, and she was still worrying about her mom being sad. I never cease to be amazed by her selfless and charitable heart.

She was finally able to eat a little bit, but only a couple of bites. Her pain was intense enough I gave her hydrocodone and ativan. I sat by her until she was able to rest a bit. She wanted me to stay close all day long. And I did as best as I could. Happily so.

We finally broke down and let my parents come this evening. Ashley was the one who said it was alright if they came, but only if I promised NOT to leave her. They will stay until Monday morning. I am very thankful they are here. I didn't think it would help me relax to have them near, but I was dead wrong. I feel very peaceful knowing we have them. They can't spell me off with Ashley. But they can help with dishes and the boys and such. Tonight they sat down with the boys and played games with them. They kept them entertained while Jason finished up some loose ends from work, and while I sat by my girl. She needed lots of close mommy time, and it was nice to be able to completely focus on her needs.

She started into another episode right after scripture and prayer time. She was very upset when she called me to come sit with her. She needed to be held and comforted. My wonderful man took over. He prepared the air mattress for my parents and helped the boys into bed. I thank Heavenly Father every day for Jason. He is such a good man, and he helps me every chance he gets. I don't have to ask. He is ever watchful and knows what to do. I have said it before, and I will keep saying it, we are a "winning" team! Ha ha ha ha ha! (0: Ok, that was cheesy, but man, it is so true. What a blessing it is to have married such a honorable person who is generous, giving, helpful, and a great teammate! (0:

I have no idea what to expect over the next few days. But I am so grateful for every day. I am grateful for every hug and every touch and every smile I get to share with my angel. What a blessing! What a miracle she is able to be here still, and be comfortable. I know Heavenly Father is watching over our little family.

Friday January 29, 2010

I am really sorry for the lack of update last night. Ashley wasn't feeling very good, and so I didn't want to take the time to blog.

Yesterday was a hard day for Ashley. She didn't feel as good, and she was very emotional. The arrythmias are starting to come more frequently, and as one would expect, they make her feel yucky. Her stomach was not as good, and she had a terrible time with diarrhea. That was her main problem last night. She went and went and went. It was awful!

Right now, Ashley craves meat. I am not kidding. Her favorite thing is steak. She eats steak several times a day. The portions are really small, but she will eat, and has been eating, up to six little portions a day. We have a good system. If she takes immodium before she eats, she can eat the food and keep it in her system for most of an hour. Then of course, the diarrhea comes. Sometimes she will go longer before she has to run to the bathroom. Last night was worse. She wanted some chicken strips from Dairy Queen. Her wonderful dad, bless his heart, went out and got her some. She was able to eat quite a bit of the chicken, but then the diarrhea hit her with a vengence. It was after 12:30 before her body was able to calm down. She slept most of the night, and didn't wake me up until 6:00. That was a blessing! I was worried she would be up several times. Thank goodness she wasn't. We have had a couple bad nights in a row where she is up four times plus. We neither one are able to rest, and it gets exhausting. I don't do as well when I don't get enough sleep. Neither does my angel.

We actually had a really nice afternoon yesterday. Ashley came out into the living room for a little while, and fell asleep on the couch. I decided to let everything go and take a nap while she rested. Rather that fall asleep in the bedroom, where she might not be able to wake me up for help, I made a bed on the floor and slept by her for most of an hour. It was very refreshing! When she woke, I helped her back into the bedroom and we watched the Bachelor on the internet together. I sat and held her hand and stroked her arm. It was a very special, relaxing time for us.

Today wasn't as relaxing as yesterday. Ashley had more episodes of irregular heart beats. She had one this morning, and then another tonight. It was scary! Even with the extra worry, we still had some wonderful time together. She wanted to take a bath this morning. After she baths, she is always exhausted! Nancy arrived as I was helping her out to the living room. Ashley requested being in the living room after her bath, even if she was tired. I was happy to comply. I opened up the blinds and let in the sunshine. I don't think there is anything more inspiring than sitting in a bright, warm, sun filled room. I do think it helped Ashley's mood. It definitely helped mine.

Tonight, Ashley has been really tired. She wasn't able to eat, (not even steak!) When her episode started, it was around 8:30, so I gave her hydrocodone and ativan and we waited. Within a short time, she started to calm down, but she was tired for the rest of the evening. My sister did come over for a little while to bring over some cookies. Ashley was able to visit with them, although after they left, she got upset because she felt so yucky. Visitors are still hard to handle. Excitement of any kind brings on the arrythmias. We have to be super careful about upsetting Ashley.

So into another weekend we go. I pray it will be a good one!!

Wednesday January 27, 2010

I can't believe January is almost over! It seems like yesterday it was Christmas. I sat today and thought over the past month. What an incredible journey we have been on. I didn't think I would be writing a blog entry today, stating that my angel was still here. I really thought we would lose her before Christmas. Then I thought we would lose her before New Years. I never thought she would be here still. I am so grateful we have been given this time with her. I treasure every second. I never know, from one moment to another, how long she will be permitted to tarry on this earth. But I am so grateful for her comfort over the past week. She has been blessed in numerous ways!

Last night wasn't so good for Ashley. Shortly before bedtime, she was having a terrible time breathing. The shortness of breath has worsened. I knew it had, but last night, she was visibly retracting. She was upset enough, I didn't want to take the time to write in the blog. I gave her extra lasix, and her other medications, and sat with her, rubbing her arm and helping her to stay relaxed. I didn't know what the night would look like. Fortunately, it wasn't as bad as I thought it would be. She was up four times in the night, but not more, and she remained comfortable throughout the night. By comfortable, I mean her breathing was ok. No chest pains, although her heart was beating furiously.

This morning, while her brothers were getting ready for school, she had another big arrythmia. She was in terrible pain. She said with every breath she took, she was in horrible pain. I gave her pain medication and ativan, and I prayed. Within a short time, her pain subsided. In fact, she felt good enough, she asked for food and was able to eat. I started breathing again. Over the course of the day, she has remained very tired. She has also been emotional. But I don't blame her. I think she feels her body taking another step down. I feel it. My mom heart is telling me that time is running out.

Ashley's fear today is that she will die while her brothers are at home. This morning, after they left, and her episode subsided, she cried for a very long time. She told me she knew her brothers were already stressed. She didn't want to add to that, and was worried if her heart did stop when they were home, they would be marked forever. She said, "Mom, I love my brothers. I don't want to upset them. I am so scared if I died in front of them, they won't be okay. I don't want that. I want to go when they won't have to watch me die."

She has been upset about that all day long. She has been upset that we won't be okay. How can you tell your child you love with every fiber of your being, that you will be okay when they die? Of course we won't be okay for a time. We have to grieve. I already am, in so many ways!! We all are. It hurts like heck and she is still here!! Her dad was so upset today, after her episode, he was sick to his stomach and had to come home from work. Austin is not feeling well tonight. We will grieve Ashley's loss for the rest of our lives. But that doesn't mean we won't survive. I look at all the wonderful people in this world who have experienced loss in one form or another, and who still go on with their lives. I have a special aunt who had to part with her dearly loved husband. My uncle died the day before I was crowned Miss Mini-Cassia. The day of the pageant, I was so sad. My Uncle Rulon was my hero. He was sick for a good portion of his life, and he never complained. He was so valiant and strong and enduring. I didn't know how I was going to compete with the heaviness in my heart. I had a special blessing from my dad. That night, on the way to the auditorium, I was in the car, driving, and I literally felt my uncle with me. I felt his arms around me, and I heard him tell me that I was going to be great. He would be watching over me. I will never forget that special moment. I know my uncle has watched over his family over the years. My aunt has been so strong!! I can't imagine how she kept going, but she did and she smiles and she lives life to the fullest. I want to be like her. I want to keep smiling and laughing and living and loving. Jason and I have three amazing boys. They are so good and handsome and smart. (Yes, I can say that! Mom bragging rights. Ha ha ha!) I want to raise them to be fine stripling warriors. I want to help them have the desire to return to their Father in Heaven, to some day have their own forever families. It is going to be so tough!! But with the help of so many wonderful family and friends, I know we will make it.

I want to thank several inspiring individuals who have shared their special experiences with me. One of these fine women has four beautiful daughters. I have always looked up to her. I had no idea what she had been through over the course of her lifetime. But she is truly a pillar of strength. She lost her mom while she was very young. She has continued on with such faith and courage. And another special lady who lost her baby not long ago. There is such a wonderful spirit of peace in their family. I feel it every time I talk to her. She has kept moving forward, even when the pain was so consuming!! What astonishing women of faith!! Thank you to all who set such amazing examples to me!! You all inspire me to be so much better! You inspire me to be closer to Heavenly Father, and to keep moving forward through each agonizing day. I love you!!

Monday January 25, 2010

Just a quick update. Thanks for not thinking I am crazy! Ha ha ha! I appreciate all the comments I have received on my previous blog. It helped to vent. Jason has been super attentive and helpful tonight. I can't say enough good things about my dear husband. He spoils me rotten. He treats me like the Queen of Sheeba. I hope I do the same for him. He certainly deserves to be treated like the King he is! (0: Just to brag on him, (I know he hates this), but tonight he helped clean up dinner. Then he helped cycle kids through the bathtub. He played backgammon with both Preston and Austin. He went grocery shopping, and even picked up a treat for the kids. It was awesome! (0: He is awesome!! (0:

Ashley has been hanging in. Her appetite was good. She wanted to eat several different things. I won't say she ever eats a lot, but at least she wants to and she tries. She did have a short episode of arrythmias right as I was getting the boys into bed. Thankfully, it didn't last long and the pain subsided quickly. My heart always skips a beat when she tells me her heart hurts and it starts beating wildly! But she is alright now. Tired, but alright.

I just wanted to tell everyone one more time, how grateful I am for this trial. I am grateful for every hour of struggle, for every moment of fear and sorrow, no matter how overwhelming it is for me. I am humbled to the dust! It wasn't long ago that I had some problems in my personal life. I took so many things for granted, including my husband. Jason and I weren't as committed to the gospel as we should have been, and our family suffered because of it. Through this experience, we have both come to realize just how much we have to be thankful for. We have gained tremendous faith. Our testimonies have grown beyond belief. Our family is so close. Our extended family is so close. I know this trial was what we needed to help us move in the right direction once again, to grab hold of the iron rod and fight tooth and nail to get our family to the tree of life. Satan has worked so hard on us! I know he is working hard still. And I know we will beat him down!!!

Monday January 25, 2010

Sorry for the lack of post last night. I didn't feel good. Ashley didn't feel good. So we watched a movie and went to bed. I was thankful to get to bed before midnight. Ashley was only up three times after that, so the night was alright. I didn't wake up feeling tired. She is very tired and weak today, more so than she has been over the past few days. Surprisingly, her appetite is fair. She tried to eat two different things for breakfast. She didn't eat much of either thing, but every bite she takes makes me super happy.

Yesterday was another day of comfort. Her pain was under control. Her stomach was under control. The diarrhea, well, that will always be a problem. Her main problem yesterday was the weakness and fatigue. That isn't new, but yesterday, she felt especially weak. She had a hard time moving her legs on the bed. I had to help her several times to change positions. I think it is a blessing her heart has been holding. She still has constant flipping. I feel her heart often and it isn't in a normal rhythm. Thankfully, the major arrythmias have stayed at bay. But we never know from one hour to the next, from one day to the next, if that will change.

We didn't get to church yesterday. Jason encouraged me to attend sacrament meeting, but I didn't feel like going. My body isn't cooperating so well with me right now. I am on edge all the time. I don't feel relaxed. I HATE that about myself. Almost as much as I hate my teeth. I have struggled with this problem my whole entire life! Dang blasted anxiety!!! I wish I could change the fact that I have terrible anxiety. Unfortunately, I can't. I have to accept it as part of myself and keep moving forward. But it SUCKS! When my anxiety flairs up, I get so sick. I can't eat. I can't sleep. My body will hurt all over. I lose weight. (That part I wouldn't mind!) My head feels unbalanced all the time right now. Man, it stinks! I know this is another challenge that will make me stronger. But I don't like it. I can't deal when I feel sick. I get so scared, mostly that I won't hold up under the pressure and I should be able to. I should! So why can't I???? AHHHHH!!! Sometimes I want to curl up in a little ball and disappear forever. I have wished that so many times over the course of my lifetime. I don't wish that now. But I do want my stupid, idiotic body to get a grip! I did call the doctor today to get more anxiety medication. I haven't been taking the whole dose. For one, I didn't want to pay for more. We don't have insurance and the medicine is really costly. Two, I can't go to the doctor right now. I am literally glued to my daughter. Thankfully, they are going to call me in another refill without seeing me. That is a blessing!

I am not the only one who is feeling the stress. Austin turned up with a bald spot on the back of his head. He has had the spot for a while now, but it is getting bigger. I was initially worried about ring worm. We dealt with ring worm four years ago and it was awful!! Jason took Austin to the doctor today and we found out the spot is caused from stress. Austin will need to see the dermatologist so we can work on getting it fixed. Poor kid! I have been so caught up in my own trauma, I haven't thought about the boys like I should have. Preston hasn't been completing his school work as well as he should be. I have seen lots of mistakes. He has been so difficult too. Spencer seems to be okay, but I have no idea how he is really holding up. Our whole home is feeling the tension. I am super concerned about our sons. I know we have a wonderful school counselor who is always available to help. I didn't think we needed counseling, but maybe we do. The boys in particular.

I know I mentioned before that fear and faith do not exist together. I know this is true. I don't mean to fear. Really, I have great faith all is going to be okay. I know Heavenly Father is watching over us. I know we have been blessed in countless ways. But it is lack of faith when my anxiety flairs up with a vengence? I hope not. I don't want to not have faith. I don't want to fear. I don't want to disappoint my Father in Heaven. I want to feel normal. I don't think I have felt like a normal person for so long, I never will.

Okay, enough with the vent. I feel better now. Now everyone will know I am psychotic. Ha ha ha! Just kidding! (0: Ashley is here for today and I couldn't be more grateful!! I love her so!! And she is as comfortable as she can be. God is watching over my angel!! And, I have Jason, who loves me no matter what, no matter how stressed out and strange and not normal I feel.

Saturday January 23, 2010

I can't say enough good things about my wonderful husband. Today, he was my hero in every way! I could not have survived this day without him.

Ashley had a fairly good night last night. We got to be shortly after 12:30. She was only up three times to the bathroom, and only had diarrhea once. I was worried she might have trouble, where she ate right before going to sleep. But not so. She was again blessed. I have no doubt of that.

Today was another day of comfort. Ashley's pain was under control. Her stomach was under control. The diarrhea is an ever present problem. Today was no exception. However, she was able to eat quite a bit by her standards. Tonight her request was steak. I couldn't believe she was asking for that. Steak is not gentle on the digestive system. She ate four small pieces, and surprisingly, did not have a terrible fit of diarrhea afterward. That was not an accident. I know it was a blessing. I couldn't believe how good her appetite was all day long. It is so wonderful to see her eat and be able to keep the food inside her body for a little while.

Tonight she did confess that she felt her heart jumping around quite a bit over the course of the day. This afternoon I was suspicious of that. She was very tired, and as I sat by her, I could see her heart beating furiously. I know the arrythmias will happen. I was thankful none of them have been as bad as the ones last week. I know Ashley's comfort level is not an accident or luck. Heavenly Father is blessing her. I know that with every fiber of my being. I have seen His miraculous blessings showered over her. From last week, when she was so desperately ill, and I was convinced she would not live out the week, to today, with her sitting up, smiling, eating, talking........night and day difference. It isn't her time to go yet, and I can't tell you how I pleaded with my Father in Heaven, asking if she was to remain with us, that her great suffering and heavy burdens would be lifted. They have been! They have been! There is no doubt in my mind that God hears and answers our prayers. Not always like we think He will, but He hears! In the words of a great song I dearly adore:

Here I am again, down on my knees
And with every pleading word, Thy comfort I seek
Though the words are slow to come,
My thoughts are racing by
Peace fills the room, Thy spirit is nigh

He hears me
When I'm crying in the night
He hears me
When my soul longs to fight
Till the morning will come
And the light of the dawn reassures...
He hears me

What a blessing it is to know the power of prayer!!

Ok, it is late but I have to brag on my wonderful husband again. I have to explain why he was my hero today. (Ok, he is my hero EVERYDAY!!) This morning, my children were behaving like the spawn of hell. I hope no one takes offense to that statement, but they were. (Spencer was not the problem. He seldom is.) They were fighting and yelling and picking on one another until I wanted to throw them out! I know they were bored, but at that time, I couldn't do anything about it. I tried being patient and kind, not yelling, trying to referee in a way they both were appeased. It didn't work. I ended up screaming at them. Then I felt awful. I know they are dealing with this situation in their own way. We have tried to be extra patient and understanding with them. I wasn't very patient and kind today.

Poor Ashley heard the commotion going on and she got upset. When she gets upset, she starts having arrythmias, which she did. Her chest was hurting. She was in the bedroom crying, upset, and I couldn't go to her because the boys were having a brawl on the bedroom floor. One of them took a hit to the groin and was screaming in agony. I was trying to figure out what really happened, and why the one hit the other, and trying to calm Ashley down. I couldn't get the two boys apart. Austin wanted to get Preston for hurting him. Preston was screaming at Austin. They wouldn't even acknowledge me. I finally called Jason, in desperation. Bless the wonderful staff at Idaho Watersports! They let him come home. The minute he walked in the door, those boys were like straight arrows. They stayed in time out. (For me, they sneak out of their rooms. They stretch their legs out into the hall, they yell horrible things to one another.) They immediately made peace with one another. Jason sent me into the bedroom with Ashley, and he took over. He built them a huge fort across the whole living room. He helped fix lunch, and then he went outside and played basketball with them. He spent the whole afternoon fussing over our boys. I was able to calm Ashley down and attend to her needs. We rested. I was so refreshed after the break. I was able to come out and be nice. I couldn't have survived without Jason! He is such a good man! For those of you who know me well, I tend to freak out easily. I am extremely reactive. Jason is not like that. He is always so calm. When he is in the house, the entire atmosphere changes. Like I said before, we make a great team. We have to be a team. I can't do it all. I would fall apart. I thank my Heavenly Father EVERY DAY that He gave me Jason, who completes me in every way. He keeps me grounded. He keeps me calm. What a blessing!