Tuesday February 9, 2010

I just finished reading an entry by my lovely younger sister, in her blog, about two mothers in a store, and the horrible way they were treating their children. I have to agree with Tammy when she says it is heart breaking when you know parents don't cherish their children, when they treat their precious ones like vermon. You never know what life will throw at you. One day your child may be here with you, and the next, they are gone. I know of several families that have experienced this. It is so awful! I know there have been numerous times in the past when I have had a hard time being thankful for my kids. On those days when contention runs rampant, and energy seems to ooze from every pore and nothing you try to do to help the situation does, you want to pull your hair out. On those days, it is hard to be grateful for your kids. But at the same time, since Ashley has been so gravely ill, I have come to appreciate my kids in ways I never thought possible. I appreciate the bursts of energy, the door slamming, the fingerprints, the string cheese and fruit snack wrappers stuffed in the couch, the little potty drips around the toilet from little boys with bad aims, the mountains of bubbles left in the bathtub soap potions, etc. I could go on and on. What a blessing it is to have those precious ones, entrusted so lovingly into our care. And what a blessing it is to have healthy children. I never thought I would be grateful for a healthy appetite. I never thought I would be grateful for wrestling matches in the living room at scripture time. I never thought I would appreciate the ability to walk around the house or take a bath unassisted or even to brush one's own teeth. But when those abilities are gone, those moments taken, your perspective changes. Those things that once were so annoying are now blessings. I have learned to enjoy every day, every struggle, every silly moment with my family.

As for this day, it was hard and long. Ashley continues to suffer greatly. Her energy is gone. Her appetite waining. The diarrhea is a constant demon, lurking at every bend. Thankfully, the pain in her back and legs wasn't as severe today. Last night, when her breathing was so labored, she asked her dad for a blessing. Jason gave her one of the most beautiful blessings I have heard in a long time. Immediately after he closed the prayer, Ashley began to breathe more slowly. I felt her relax. She fell asleep shortly after and was only awake a couple of times in the night. Today she has continued to be blessed. Even though her burdens were still heavy, I felt more peace in her than I have for a while now. The things that were so awful yesterday, while still awful, didn't take her down as low as they did yesterday. I know Heavenly Father was with His precious daughter today. There is no question about it.

The other hard part about today was that Preston turned up sick. He had a sore throat and cough. I kept him home, and in isolation as much as possible. Jason was able to help me out with that. I took care of Ashley and he took care of Preston. I hope that will keep the germs from cross contaminating. I can't tell you what fear courses through my veins when I think of Ashley getting sick. It would kill her. Hands down, And it wouldn't be a nice way for her to go. If her lungs were compromised any more than they are now, she would be in serious trouble. I pray and pray that she won't have to die like that. I think it is interesting to note, in her blessing last night, Jason specifically said that she would be protected from illness. I was thinking how glad I was that we didn't have sickness in our home. How wrong I was! I know Jason was inspired. He knew Ashley needed that specific blessing. How grateful I am for priesthood blessings. They work!! (0:

So we keep pressing forward.....one day at a time!!!

Monday February 8, 2010

Today was another long, difficult day for Ashley. She was miserable from the very start. The pain in her back and legs continued. Her poor digestive system was in distress, which isn't anything new. Her swelling was about the same. This morning she was breathing alright, but by tonight, she was really working to breathe. I gave her some extra lasix with her evening meds, hoping her breathing would ease a bit. So far, she hasn't had any relief, but I hope she will have enough she can sleep. She has been so discouraged. Every little thing brought her to tears. Nancy suggested this afternoon that we keep her on a regular dose of ativan. She felt ativan would help with the sadness, as well as the anxiety. I do hope it might offer Ashley some relief. It is so hard to watch her cry!!!! I feel so darn helpless!!!

Tonight she felt sick enough, the only thing she wanted, the only source of comfort for her, was for me to sit with her and massage her arms and legs and back. I sat with her for a very long time. I think it was as comforting to me to be near her as it was for her to have me close. I really need to thank the wonderful staff at Idaho Watersports for allowing Jason to come home a little early tonight so I could be with my angel. They are preparing for their big boat show, and I know Jason is so vital at this time. I know it was a sacrifice to let him come home. Thanks to all you wonderful, caring, compassionate people!! I needed Jason tonight.

I had a couple of emails today that made me worry I have given some people the wrong impression of Ashley. I want everyone to know Ashley has never, ever once blamed Heavenly Father for her suffering, or think He is punishing her. She has never once been angry at Him. She knows this is her earthly trial, this is what is going to help her learn what she needs to learn to gain her eternal salvation. She doesn't sit day after day questioning the reason she is still here. Of course she wonders more so at the times when her pain is so unbearable. Who wouldn't? Many family and friends, watching her intense suffering, have also wondered why she has been allowed to remain here for so much longer than expected. We all thought she would be able to return to her heavenly home by now. Ashley knows what awaits her there, and she wants to be free from these earthly burdens. She wants to go home. Our angel has so much faith. She has always said from the beginning, Thy will be done. The day Jason gave her the blessing of release, we directly spoke to her about that very concept. She understood that it may not yet be her time to go, and she was okay with that. The hard part now is that she is so ready to go home. She desires that more than anything. Her faith is not weakening. She knows there is a plan and when the time is right, she will finally be free from the cares of this wicked world. I know she will be blessed to endure this final stretch of her life. I know it will every fiber of my being!!

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.

Friday February 5, 2010

Tonight has been another long day. Ashley did not feel well at all. When she woke, she was puffy in her face and especially around her eyes. She was very pale. Her stomach and lower back looked huge. That is the place where she tends to retain fluid: her abdomen and back. On top of the swelling, she had horrid diarrhea all day long. She did try to eat, but everything went right through her system. It was not a good eating day in the slightest. The swelling in her lower back was bad enough, her back ached awfully bad. It was hurting last night, but today, the pain was so intense, I had to massage it several times. Her pain meds didn't touch it. Ibuprofen helped a little bit, but not much. She was so discouraged with it all!! I don't blame her. I have kept her on ibuprofen around the clock throughout the day, hoping for some relief. Unfortunately, not much relief came.

Tonight she has been having dizzy spells, where she describes her vision as double. I am sure her low oxygen levels contribute to the dizziness. I haven't put her on the oximeter for so long, I have no idea where her O2 levels are these days. I know she is low. Nancy told me not to put her on the oximeter, just so I don't freak out with how low she is. I think Nancy is very wise in this.

Other than that, not much has changed. She continues to decline. This afternoon, I was feeling so emotional. This journey has been such a roller coaster ride. When things look bad, you start preparing yourself for the worst. Then, the situation improves and for a moment, your heart feels a little relief. Then, the decline in health. Once again, the sadness consumes the soul. I felt so sad today. Ashley, bless her heart, this afternoon, was worrying and upset because she felt like it was unfair for her to go to heaven and be happy while we were stuck here in the earth, feeling sad and miserable. I am not kidding. That was why she was crying. She didn't want us to be in pain or to be sad. She wanted us to be at peace like she will be. I sat and cried with her for a long time. Jason came in and sat with us while we weeped. We assured her, we would be sad for a time, but not forever. There would come a time when we would be happy again. The hole will never go away. I have been told that before, but I know, in time, life can be happy. We will be alright. I told her Heavenly Father would bless us and take care of us so our pain would be bearable. That includes grandparents, aunts, uncles and cousins. Heavenly Father is a loving Father. He always takes care of his children. With every trial we endure, comes many blessings. We won't be left on the earth to suffer. It was a beautiful, faith boosting conversation. I was so thankful Jason and I were able to share that moment, together, with our angel.

And so we keep moving forward. What a blessing it is to know we are not alone!

Thursday February 4, 2010

Just a quick update. Ashley isn't well tonight, so I don't have much time to write. Today has been an awful day. All day long, her stomach churned and churned. She attempted to eat a few times, she was so hungry, but was unable to eat without having horrible diarrhea. Tonight she is super weak and her body aches all over. The swelling was so much worse, she asked for extra lasix with her evening meds. She is truly suffering in every way. As one would expect, she is desperately emotional. She wants to be done with this broken body. I don't know what to say to comfort her. There aren't any words. I feel completely and totally helpless. The only person who can lift her burdens is her Father in Heaven. I know He has been mindful of her every hour of every day. He will not abandon her now. I pray that His gentle loving comfort can be in her heart tonight.

Thursday February 4, 2010

I didn't post anything last night due to our circumstances. We actually got the boys to bed just after 9:30 which is really good for us. The cool part was: Jason and I had some time to sit and talk!! YEA!! We haven't had much time for that. Around dinnertime, I curled up on him, and within five minutes, had to leave because Ashley was having another diarrhea attack. These days, our time is few and far between. So I was happy to get a chance to talk. How cool was that!! In the mean time, Ashley was in the bedroom, not feeling good and not letting me know how sick she was feeling. By the time I went in and joined her, she was upset and crying, wanting her mom to be with her. It took me a while to calm her down.

Ashley is so ready to be done with everything. Last night, she was asking me what she had done wrong, that she was still on this earth. She was worried maybe she was being punished. I can't believe she would ever think that! My goodness! She wants to die. She wants her suffering to end. The past few days have been nothing but suffering. She lays there, day after day, to weak to do anything. She can't eat. She can't sleep. She needs constant assistance, even with the smallest tasks. I know it is discouraging! I know it, and what can I say? This situation isn't in our hands. There is a plan and a reason she is still here with us. I have no idea what that plan is, and I am terrified to pray about it. Part of me is so thankful she is still here, and the other part knows she is miserable and that a better life awaits her. I know it would be a blessing for her to go. I know it. But my heart has a hard time accepting it. We are all feeling the strain. Poor Jason is maxed at work and at home. I don't know how he keeps going on day after day. He never sleeps well. He isn't eating well. I don't either. The stress is constant and in our faces at all times. I am so grateful the boys have been happy lately. They seem to be holding up alright. What a blessing that is!! I did find out they are all doing well in school. Preston's amazing teacher wrote me an email after reading my past blog and made sure I knew he was doing fine in school. I was so thankful she took the time to let me know he is alright there. I know I don't get to spend time helping him like I want to. That helped my guilty conscience.

I won't go on much now. I will say Ashley is not feeling a bit good today. She is very weak and swollen once again. She didn't sleep well at all last night, and is exhausted. We will have quiet time this afternoon and hopefully she can rest a bit.

Thanks to everyone who sent us a new batch of freezer meals. I am so grateful for your sacrifices!! Thanks for all the uplifting notes of encouragement. They really help. Thanks to my wonderful brother and his family for the amazing care package they sent this past weekend. The toys for the boys were so cool! (0: Thanks to my wonderful friend Sarah Badger and her family for the huge care package they sent last week and all the emails. You guys ROCK!!! Much love to you all!!!! More to come!!

Tuesday February 2, 2010

I am not going to write much tonight. I don't feel well, and Ashley is not having a good night. We are both ready to turn in and get some rest.

Overall, it was an okay day. Ashley was very tired when she woke. Her body was aching and her stomach was giving her fits again. She wanted to come out into the living room for a little bit, which she did. Our wonderful social worker came for a visit. She wanted to see how things were going and if there was anything she could do for us. At this point, we are taking one day at a time. There isn't much anyone can do for us but pray. I enjoyed the visit with Kennette very much. These days, I don't have much interaction with anyone other than emails. It does get lonely. I don't mean to complain at all. I am so grateful for every second of time I have with Ashley. I know when her time comes, I will not have any regrets. I can truly say I did all I could do for her. I served her and loved her to the best of my ability. I know Jason can say the same. I do hope he won't have any regrets either. He sacrifices so much every day for her and for me. There isn't anything more he could do.

This afternoon, Ashley was just plain miserable. She was hungry but afraid to eat. She did finally break down and ate a little bit, but was hit by a massive diarrhea attack. It was so discouraging for her. I don't blame her one bit. What a terrible problem to deal with day after day after day! I can't offer her any relief. This problem isn't one that can be controlled with medication. It is directly related to her failing heart. I give her immodium, but really, it doesn't help much. I guess by giving it to her, I feel like I am doing something to help. It is such an awful feeling to not be able to offer Ashley any relief. I am a huge fixer. I like to fix the pain, and I can't and it is heart wrenching for me!!

So we keep moving forward. Only Heavenly Father knows what tomorrow will bring. (0: I pray it will be a better day.