May we all find something to SMILE about!

I had to share this picture of Payten. This is by far one of the best pictures I have captured of her, for it shows her true personality, beauty and smile. I love it! What makes it even better in my opinion is, when I took this, Payten had a temperature of 101.5 and bright green secretions, basically indicating that she is not well, but look at that smile you would never guess that she was not feeling well. This is why she is such an inspiration to me. Even though she faces crappy life happen stances she always smiles through it. Even on the worst of days, she will show that smile, it may not stay long and it might be followed by tears, but she still shows it! And that is truly inspiring! I have a lot to learn from this young lady. If I can become half the person she is, I will have done something right, for she is the epitome of beauty, grace, and love. All qualities I want to master. So I am thankful that I have one of the best examples in my life of these qualities and that I can call her my daughter! What a blessing she is to all.

Now this is a picture of Payten two weeks ago, when she was hospitalized for uncontrolled seizure activity. Even during this hospitalization with all she was faced with that above smile would shine through, it may have been short lived, but it shined through. My fear is that the day will come that this smile will not shine through and that is when I will know, that she is done fighting and she is ready to leave for home and that will be one of the saddest days of my life and so I am grateful I was able to capture her beautiful smile, for when that day comes, I will have something to cherish forever!

I want to end with a quote that I believe this top picture of Payten smiling, sums it up beautifully. It says,
      
       When life gives you a hundred reasons to cry, show life that you have a thousand reasons to
       smile!  ~ Unknown

This is exactly what Payten is doing in that picture! She is showing the world that even though I have a tough life and even though I am sick right now and I will struggle with different illnesses and challenges through my life, I will ALWAYS smile, for I always have something to smile about and when I don't, that is when my journey here on earth will be through! May we all learn from Payten and smile, even on the crappiest day may we smile our way through. Because happy people are the prettiest! God bless you all and  may you all find something to smile about!

Progress report on Payten and Pictures of our staycation!

Apologies to you all, for my last post had no update on Payten. Like I said before, not only will this blog be updates regarding Payten, it will be my feelings, heartache, laughter and family memories, but I do have an update so I want to apologize for forgetting to put it in my last post. For those of you who follow me on Facebook, you already know Payten was just recently in the hospital, but for those of you who did not know, Payten was hospitalized last Saturday. The reason being was uncontrolled seizures. Like in my last post, Payten had been having seizures daily, sometimes two or three times a day for two weeks prior to this hospitalization. Her doctor was well aware of the seizure activity and we kept going up on her Keppra (seizure medication), but obviously that was not working very well considering she kept having them. The reason we took her to the hospital, was not because of seizures, it was because she peed dark brown urine and it scared us. We thought it was her kidneys or liver, so we rushed her to the ER to be safe. When we got to the ER she quit peeing dark brown, typical right?! I know! But they still did blood work and a urine analysis to try and figure what might of caused her urine to be that color. Those tests came back normal, so we have no answers as to why she had that dark brown urine. While in the ER, Payten started having seizure, after seizure and so they wanted to keep for at least one night to monitor her and get her seizures under control. She was there til Monday. Not too bad, but still longer than they thought! She was on an IV drip of Keppra the first night and was still having seizures. The next day her seizure activity slowed some, but she still had a few, so they upped her Keppra even more and kept her another night to see how she did and to get an EEG done. She did great, her seizures were controlled and her EEG was normal, Yay! Considering we upped her Keppra to 9 mls., 1800 mg. ( In case you are wondering, that is a lot for a 14.6 kg 4 yr. old girl (well almost 4!)).

Since we have been home, Payten has been doing great! She is back to her baseline health and she is her happy little self again! We love it when she is happy and well, for we have so much fun with her. Today we saw her Pulmonologist, Dr. Panesar and Payten is sick. (Boo!) She will have to receive more breathing treatments throughout the daytime and she will be placed on Perdisolone and Bactrum to try and help clear the illness. Let's hope she gets over this without having to be put in the hospital. It seems like it is getting harder and harder to try and clear simple illnesses anymore for her. I feel like the only thing that works for Payten are IV antibiotics and we have to start those in the hospital, then we can come home sometimes on them if she is stable enough and finish them at home, but it is still a pain in the butt and we do not like to have to go to that extreme, but sometimes that is the only option we have for her. Please pray that, that will not be the case this time and that these meds will clear this illness.

Other than being sick, Payten is progressing well in her therapies. She is sitting independently. She is starting to be able to get up into the sitting position on her own, no she has not fully mastered it yet, but she will soon! She is enjoying playing with toys more and she is more aware of her surroundings and the people around her. She is doing well in her gait trainer, she is starting to take more steps, which is huge and she does not cry when we put her in it! Yay for that! Hopefully we can get her walking in it soon and then we can move on to a walker, who knows, one can hope! She enjoys music and Mommy singing to her. She loves people talking to her and reading her stories. We have found that she is starting to communicate with us by batting her ear. She bats two times for more, she bats one time for yes, and three times for no. It is amazing to see this. For so long I did think we would ever be able to communicate with her, but hopefully we will get to the point of her being able to use a communication device. It would be nice to understand what is going through that little head of hers! She is growing to be so tall. We are actually looking into getting her an actual wheel chair in the near future. I think it will be a good change, people will start to see Payten as the big girl she is, instead of as a baby.

As for her brain, we had a CT Scan done this last hospitalization and it showed that the area that had, had some bleeding on the brain, had cleared up, which is fabulous. But it did show worsening of the deterioration, so we will see, who knows? All I can say is she is progressing and so it doesn't matter what the Scan shows. I have put my trust in my Lord and I pray day and night that his will be done and that if and when it be her time or that it becomes to much for her to handle, he take her home. So when I ask all of you to pray for my sweet Payten, please do not pray to her to get better or to heal per say, rather pray that thy Father's will be done, for we do not want to prolong any suffering, we only want Payten here if it is what the Lord deems necessary for her. We have an eternal perspective and we know that this is not the end, rather it is just the beginning and so to us that is not a heartless pray, rather it is a selfless pray, for we only want what is best for our daughter. And we believe the Lord knows what is best for her, so therefore if we always pray for his will, rather than our own will, we will being doing what is best for Payten. I think this progress report on Payten really shows that all our prayers have been answered and she is progressing despite the odds and the pictures of the brain. I believe that is because of faith and trusting in the Lord. So thank you all for your devout prayers in Payten's behalf, they have not been in vain.

Now, onto something else! My goals I set yesterday in my last post, I failed miserably today at accomplishing the daily ones set. But it is kind of not my fault, the night nurse that comes on Monday did not show up until 10pm, when she is suppose to be here at 8:30pm. Reason being she did not know Payten was out of the hospital, so I didn't get into be until 11pm and therefore did not get up until 6:45am. Oh well, there is always tomorrow! We will see if I can do these goals, pray for me that I can, I am going to sincerely try my hardest to do them. Also below are pictures from the kids and mines day of fun/our staycation! Enjoy, we certainly did! Thanks again for caring enough about Payten to follow her progress and to keep her in your prayers. We do sincerely appreciate it.

This is the indoor picnic we had, while watching the three movies the kids selected! Mac Donald's was their lunch of choice. YUM! Not really, but they certainly think it is and I wasn't going to argue considering it was their day of fun!

Here is the hallway obstacle course the kids and I made! They had a blast going through it! The rules were, no using your hands, and no touching the "lasers" as we called them! But obviously as you can see, Makenna didn't follow the rules very well, for she used her hands to crawl through the maze! They had a blast and we had many laughs!

Sorry if I scared anyone!!! Hahaha! Here is the picture of me after the kids Painted my face like a clown! I know, I know, scary, but they had fun and that is all that matters! I had to leave it on until they gave me permission to take it off! It was way too long, but I obeyed! I think this will be a day my kids will always remember and that is why I added this to the goals I want to keep, random staycation days! This way when my kids are older they will have awesome memories of their childhood and maybe forget all the stress we have had to endure while caring for our beautiful Payter Tater!

This last picture was not taken on our staycation day, but it was taken the Friday after and I had to share it for I think it is so cute! Emmett has learned to climb and he climbs anything and everything! He keeps us on our toes, he gives Payten a run for her money! I seriously believe they compete with one another for Mom and Dad's attention! Oh well, good thing they are so cute or I don't know what I would do with them!!!!! Hope you enjoyed reading this and come back to follow Payten. I will definitely try to be better at updating this blog! Love you all!

Life!

I wanted to take the time to blog for I have been really struggling emotionally lately, I think it has to do with a one year old and lack of sleep, who knows?!?! Anyways, I wanted to give you all a little glimpse into the life of The Merrill Family, I feel that most of my friends and family do not see what our life is really like. Our weekly schedule consists of Monday, Speech Therapy, Tuesday, Occupational Therapy, Thursday, Physical Therapy & Preschool, Friday, Physical Therapy, Occupational Therapy, & Feeding Therapy, and these are not all! These are just the set appointments each week. This list does not include the different meetings with the different agencies that deal with Payten, doctors appointments that we have monthly, in home Nursing that comes weekly, and the other everyday activities of having three other children, such as, Parent Teacher Conference, Dance Class, Music Lessons, Doctors appointments, etc.. Our life is extremely demanding, I have someone in my home daily, if not two to three times a day. This is why I am so nutty about my house being clean, who wants a dirty house when people are coming over? Since my home is a zoo of people coming and going I constantly feel like the cleaning lady.

So my daily schedule consists of waking up, getting Zach and Makenna dressed, hair done, breakfast made, lunches packed, Emmett dressed and fed, Payten dressed, fed and medications administered, all before we have to be out the door by 8:15am! Now lets be real, does this happen, only in a prefect world it does! If I am doing good it happens, but most of the time I get Zach and Makenna dressed, hair done, breakfast made, lunches packed, grab Emmett out of his crib, get Payten up and dressed, pack all her supplies (suction machine, suction catheters, pulse oximeter, etc.) and run out the door, praying I didn't forget anything, then I come home feed Emmett and dress him, give Payten her medications, do CPT and breathing treatments and feed her, while running around like a chicken with my head cut off, cleaning like a mad woman before therapies start! I am lucky if I get a shower, but most days I am the smelly Mom no one likes!!!! I am suprised the therapist keep coming back! Really I am! Hahaha!

 During, before, or after therapy I have to deal with Emmett, whether it be chasing him, feeding him, picking up after him, or trying to get his naps in, it is crazy all the same. I also have to suction Payten, do spot checks on her O2 levels, put trach's back in that she has pulled out (which is on a daily basis in our house, sometimes 2 or 3 times a day!), etc. Also I have to feed her 3 more times during the day, so I try to do her feeds at 8:30am, 12:30pm, 4:30pm, 7:30pm. But they all have to be centered around the different appointments throughout the day, so I have learned that I have to be extremely flexible and schedules go out the window most of the time. She also receives afternoon medications, that is if I don't forget to administer them, which again lets be real, it happens! All of this occurs hopefully before I go get Zach and Makenna from school at 3pm! Then it is afternoon snacks, homework, chores and dinner planning. People wonder why I eat out alot, if you had this schedule you would probably too! Our budget though is not allowing much eating out anymore, so I am having to be more organized and get dinner made! Then we have to get ready for bed, because my husband needs to try to be in bed by 7:30/8, because he wakes up at 1:45am to get to work by 2:50am!

Inorder to do so, we have to clean up our afternoon and dinner mess, get baths done, homework finished, Payten's CPT and breathing treatments, night medications, teeth brushed, stories read, equipment set up (ventilator, pulse oximeter, suction machine, feeding pump.) All this before 8pm! And people wonder why my husband doesn't get sleep. Maybe now you can understand a little better as to why! And this list does not include the nightly ups and downs we have, whether it be suctioning Payten, putting her vent back on, hooking O2 up, or Emmett needing us and it does not include the
different POP-UPS that everyday life might bring such as, family or friends needing help, church/school activities, extra curricular activities, urgent care visits, poop blow outs, ect. So when you see me and you think, wow she looks burnt out, you are probably right, I am! And that is exactly where I am right now, burnt out!

I am not posting this to get on my little box of Tide and say look at me!, look at me!, don't you feel so sorry?! Rather I just want people to see what I and other mothers of children with special needs go through. We not only have the everyday tasks that all mothers have, we have extra things as well and it gets over whelming at times. A couple weeks ago, Payten was having seizures all the time and Emmett was not sleeping at night and so here I was, a mommy to four kids, whom had no sleep and was stressed and worried about one who kept having seizures! I reached a melting point and I was ready to say, I quit! I quit everything! I quit Cub scouts, I quit visiting teaching, I quit therapies, I quit helping with homework, I quit driving kids to and from school, I quit cooking and cleaning, I quit having meetings regarding Payten, I quit all the doctors appointments, etc, I just quit life! And I was quite serious. I was going to call everyone, then I took a few breathes, went for a drive, got myself some lunch and was better! The worries weren't over, the stress wasn't gone, my burdens were not lifted, but somehow I was able to reach deep down and grab the little ounce of courage, strength and determination I had left inside me and use it!

It was not easy to do, but I had to sit back and evaluate my life. I had to figure out why I felt so burned out. I decided I needed to spend more time doing fun things! I needed to slow down and enjoy life, not just endure it! I needed to play with my kiddos more, whether that be barbies, house, legos, video games, basketball, etc. I needed to do it more. I needed to go to bed earlier and get up earlier. I needed to start exercising and eating better. I needed to spend less time on the computer and more time doing things with my kids and husband. I needed to pray more and study the scriptures. Attend the temple on a regular basis. I needed to not go to all the parties, girls nights, etc. rather I just needed to be here, at home with my family enjoying them. Every once in a while doing these things for myself, like going to parties and girls nights will be fine. Just not every week or everytime I am invited!

I thought to myself, I how am I going to do this? How am I going to improve my life and use my time better? The first thing I thought was, I am going to not turn the TV on during the day! I am going to wake up at 5:30 everyday and go to bed early with my husband. I will exercise in the morning and then study my scriptures. I will do more crock pot meals. Be more creative with the things I do with my kids! Make one on one time with them, such as taking them on Mommy me dates. Have movie/game night once a week on Friday or Saturday! Give my kids more responsiblities/chores! And I will stop worrying how perfect my life looks, such as my house, etc and what other people think and worry solely about me and my family. The last thing will be hard, but I will definately try and be better at it.

Last Wednesday I did something out of the ordinary, I broke all the rules! We had a some really stressful days prior to Wednesday and we were all on edge because of it, so I decided to turn off the alarms and let the kids miss school. We had what I am going to call a staycation! We stayed home and took a break from life. I canceled all of my appointments for the day and I took the kids to the store and let them pick out movies, games and treats. We came home and had an indoor picnic while watching the three movies we rented, Where the red fern grows, Flicka 3, and The three stooges.
After a movie marathon, we made an obstacle course in the hallway and sugar cookies. Then the kids colored, painted my face like a clown and we ended our day of fun with a Nerf gun war. It was a blast, a day the kids and I will never forget! It was a break that the kids and I had needed for a long time and I was glad I took the opportunity to do this. So this will be another thing that I will add to making my life a little better, random staycation days!

I am grateful that even though I reached a point in my life where I wanted to run away and hide. A point of throwing my hands in the air and quitting everything, that I didn't, rather I was able to reached deep down inside and find the strength to keep going. I was able to sit back and reevaluate my life and find what would make it better. I am thankful to be able to set new goals and hope that they help me in becoming a better mother to my kids and wife to my husband. I hope that by doing all these things on my list, I can keep myself from reaching this breaking point again and make this thing called life a little more enjoyable and fun! May we all beable to enjoy life rather than just endure it!

Service what a great lesson of Love!

Lately I have been thinking allot about service and it is funny, because that is what one of the talks in church this past Sunday was on and I thought to myself, Wow, how funny is that, this must really be something the Lord wants me to learn! I don't know why, but lately I have been feeling down on myself, I have been feeling like I am not doing enough service for others and I know I should not feel this way, for my life is busy, full of service to my daughter Payten, but even with this knowledge in the back of my mind, I still have been very inadequate.

As I was pondering these things, I thought about my life as a whole. I thought about the past and the present, I realized that I truly find joy in the service of others. I thought about how I was that kid in elementary school, junior high and high school, who would always find the lonely child, whom sat by themselves and I would sit with them, not because I was told to, but rather because I wanted to. I made many dear friends by doing this and I came to realize what a great service it was to those individuals for they needed that love and kindness and just by doing that small and simple act, I was able to bring that service they so desperately needed at that moment.

I thought about  junior high and about when I volunteered as a teen partner, which was a group of teens who served the mentally and physically handicap children and how truly honoring it was to do so. I remember the young man who I served, his name was Jason and I remembered how bright, bubbly, and beautiful  he was, for he was a young man that lived a life of service and love. I remember no one wanting to be his partner because they were scared of him, but I volunteered anyways, for I didn't care, I just wanted to serve him. How truly grateful I was that I made that choice, for I met one of the most beautiful young men I will ever meet in my life and I will never forget my time with him. For his whole life was focused on helping others, that is what made him truly happy, serving others. I loved being his friend, I loved being his teen partner, I loved working with him, for he taught me so much about what it meant to love people unconditionally and to lose yourself in the service of your fellow man. I will forever be grateful to Jason for the things he taught me and for his Christ like love he showed to everyone he came in contact with.

Then I thought about my life after high school and how my love of service did not end. For I went on to serve in different classrooms teaching autistic children and at Church serving the 7 and 8 year old children. I remembered how happy I was, for I loved what I did! I have fond memories of all the children I served during this time in my life and they all hold a special place in my heart! I remember when I served those 7 and 8 year old's at church and I remember thinking to myself, oh boy, they are going to hate me, for I am not fun!!!! I don't have time to create fun lessons with games, nor am I talented enough or creative enough to do so!  But that did not matter, I still served, I still chose to sacrifice my time and teach them. I realized by doing simple lessons and serving them through love, I gave them the best gift I could  ever give them, the gift of love and service! By teaching them the simple lessons I would prepare, that came from the heart, they learned through me, the teachings of Jesus Christ. I remember a mother coming to me and thanking me for my time and service. I am remember her telling me that her son told her he knew that Heavenly Father and Jesus Christ were real because he felt it during my lessons, he told her that he believed the Church was true because he felt the spirit of God when I taught him. What a beautiful, tender moment that was in my life, one I will never forget, for I was taught that it did not matter if the act of service and love was grand, elaborate, or fun, rather all it needed to be was a small and simple act, for that would make the biggest impact on someones life! How truly honored I was to learn this at such a young age!

 Shortly after this I married my handsome, oh so great husband Joseph Merrill and we were asked to serve in Nursery at Church! Hahaha! Oh what joy we felt!!!! At first I thought to myself, oh boy, what fun this will be! We get to babysit every one's children while they enjoy the spiritual lessons at Church!!!! Even though I started out with a not so great attitude, I still accepted the call to serve and I sacrificed my time and I served those children to the best of my ability and I gained a great love for the nursery and was taught another valuable life lesson. I was taught that it did not matter how young the child was, they could be taught and learn the teachings of Jesus Christ! I can remember those children's faces, I can even remember some of their names, Clark, Boe, and Sophie, oh how I loved those children! I remember thinking to myself, why, why should I sacrifice my time in preparing a lesson for these young little children who are not going to listen or appreciate it for that matter. Seriously, what was the point in all this, for these children were too young to understand or care! But I was wrong. Not only did one parent come to me this time, but several parents came to me, thanking me for my time and my service. They thanked me for being diligent in teaching their children and they thanked me for teaching their children in such a way that they could understand and remember and could come home and teach it to their own families. Oh, how humbled I was to hear that, for I thought my works were going unnoticed, I thought my works were going unappreciated, when in all reality it was just the opposite, for they were noticed and appreciated. And again I was honored that the Lord gave me an opportunity to learn and grow through service and sacrifice.

Now seriously, the list could go on and on about the service I have rendered to others and I am not saying this to boast of myself rather I do have a point to all of this. But before I get to that point I want to share another important moment of service, the moment my whole life change for the better, the moment Payten was born! Before Payten my life was about serving and helping others, but after Payten it changed to serving her. No, the desires of my heart did not change, for I still love to serve others, rather my priorities changed. I realized that my life had taken a sudden turn and my priorities switched from serving others to serving my family and their needs.  I found myself no longer spending my days socializing with friends, baking goodies/dinner for others who were facing hardships, etc. and I exchanged it for hospital stays, doctors appointments, therapy sessions, studying medical terminology, learning about lungs and respiratory issues, etc. My life forever changed, for my child was sick and I was all she had.

People ask me how I do it and all I can really think to say is, I just do it. I never have given myself a choice, even though I have had a choice, I have never given myself that option, for I am this child's mother and I will  do everything I can to help her, care for her, serve her. We have spent countless hours at the hospital fighting different illnesses and will continue to spend countless hours there! We have spent many hours learning different things such as, how to listen to lung's, how to place an NG feeding tube (the feeding tubes that go through the nose and into the stomach), how to administer medications, how to perform CPR, what a trach is and how to place/change it, how to suction a trach, how to clean the trach site, what the different medical terminologies that the doctors use are, we learned how to care for and change out G-tubes, we learned what a feeding pump was and how to operate it, we learned when to give oxygen and why, we learned the importance of CPT and how to do administer it, the lists again, goes on and on, but we sacrificed our time as parents and we learned what we had to learn. We did so, because we loved our daughter and wanted to her give her the best life possible and care for her in the best way we could.

I spend my days now, researching programs that are out there that are set up to help children such as Payten. I now spend my days, suctioning, administering medications, giving breathing treatments, going to doctors appointments, going to different therapy visits, spending my free time practicing what Payten learned at therapy, etc. My life has become a very lonely, very demanding, very tiresome life, but one I would never give up. For it is my role as a mother and I take that role very seriously. Yes, I could have taken the easy way out, but I chose not to, I chose to lose myself in the service of my daughter and I did this because I love her. I did this because when I became a Mom, I decided that no matter what, good or bad, I would do it, and I did! I have also learned through all of this, how to except service from others. I have learned how it feels to receive service, I have learned that it takes a strong person to admit they can not do it on their own, I takes a strong person to admit they need help and ask for that help. This has not been an easy lesson to learn, but it has been a lesson I will never forget and I will be forever grateful for learning it.

So the point I am trying to make in all of this, is that we all are going to face different stages in life, we are all going to be given opportunities to help and serve others, to be served, and to not serve or be served, but know that they will come in stages. I realize that I am in a chapter of my life that requires me to not serve others, but rather serve my family, I will always have the desire and love to serve others, for that is my love, but right now the focus is on my family, especially my beautiful Payten, for there is so much she needs and I am not a bad person for doing this. For I know my time will soon come to an end, for Payten will reach a point in her life, where she will  no longer be strong enough to overcome her illnesses and challenges and she will be called home to her Heavenly Father all too soon and all I will be left with until we meet again, our the memories of the service and love I rendered to her. So I apologize if I come across as selfish, unwilling to help, for that is not my intentions, rather I am facing a chapter in my life that is beyond my control that is sucking every ounce of time and energy I have and so as much I as I love to serve others, it is just not my time right now to do so.

I hope this helps everyone to understand the desires of my heart, to understand that I want to help where I can, but that my main focus right now has to be my family. But this in no way means, treat me differently, for I do not want that. This does not mean, pass me by for I am too busy. This does not mean I don't want to be given the opportunity to serve. Please do not think, Oh we can't ask her, for her life is way too busy, rather give me the opportunity to decide for myself, give me the chance to say yes or no and if I say no, understand it is not personal, it just means I don't have time!

I realized by taking the time to ponder these things, I learned to not be discouraged with myself and get frustrated with myself for not being able to serve as much as I would like, but rather I realize that there is power in saying no and learning to serve yourself and your family, before others when it is so desperately needed. For there will always be time to serve others, but your family grows all to quickly and the opportunity to serve them will quickly fade away! I am grateful to my Heavenly Father and to my Sweet Payter Tater, for teaching/helping me learn this valuable life lesson and for also helping me to realize that it doesn't matter whom I am serving as long as I am serving!  

Life is a gift! May we use it to become better not bitter!

We are officially home! Oh how over joyed, yet humbled I am to be able to say this, for I did not believe we would be taking Payten home from this hospitalization, not because I was giving up hope, but rather because of the unknown and the different experiences that I had, which led me to believe that she would be going home to her Father in Heaven. Fortunately we were blessed with more time. I do not understand the why to all of this, or the why to the experiences I had, all I can say is that they happened and I will eventually understand with time the whys to all of this, but for now, I will just enjoy the gift of time the Lord has blessed me with. We were in the hospital for two weeks and during these two weeks I really took time to pondered about life and eternity and God's plan for us. I love a quote my husband came across the other day by Spencer W. Kimball which states, "If we look at mortality as a complete existence, then pain, sorrow, failure and short life could be a calamity. But if we look upon life as an eternal thing stretching far into the pre-earth past and on into the eternal post-death future, then all happenings may be put in proper perspective." I am so grateful for this knowledge, because during these past two weeks, where parts of it were spent watching Payten fight for her life, I was able to find comfort in this knowledge, because I truly believe these things to be true. I believe  that this is not the end, but rather just the beginning of a beautiful life and that whether Payten is here with me on earth or in heaven, we are a family, she is my daughter forever and we will be reunited after death and that is what gets me through tough times. That is what gives me hope, for I do not know what I would do without this faith/knowledge.

While in the hospital, I really have come to enjoy being able to visit with the Chaplin's, for they are not there to argue truth or religion, but rather are there to listen, to encourage and to strengthen and it is so nice to just talk with them and share feelings I have and have them share feelings they have. While I was chatting with one the other day, I  was reminded of control and how control really is an illusion. Yes, we have agency in this life, where we have control over our choices, but in all reality, our life is in God's hands, it is his will what happens to us, yes we make decisions and choices, but many times, things that we are faced with, are not controllable, they are not repercussions of choices we made. Some of are trials are due to poor choices, etc. but I believe majority of life's trials are ones that we have no control over. And I believe God places them in our path to give each and everyone of us the opportunity to learn and grow. This life is not the reward, but rather it is the test and the sooner we realize this, the better we will be and the more prepared we will be to face these trials that fall in our life's path. We are pieces of coal, going through the fire to later become beautiful diamonds and every diamond needs polishing! That is what this life is all about, the refiners fire. We each will have different challenges/trials we will face, because we are all different and we have different learning styles and we are all at different points of growth in our lives and so that is why no two trials are or will ever be the same. But the outcome is the same if we allow it to be. We are all given the opportunity to learn the things the Lord would have us learn. We are given opportunities to learn about LOVE, COMPASSION, UNDERSTANDING, COURAGE, SELF DISCIPLINE, CHARITY, SERVICE, HUMILITY, etc. but it is up to us whether we learn these things or not, because we can take a trial and we can either be bitter from it or we can become better because of it.

It does not matter what the trial is, it may be death of a loved one, marriage difficulties, divorce, not marrying at all, a child born with a disability, a child with a life long illness or one who is faced with a terminal disease, or no children at all, or miscarriages, or losing a job, or a wayward child/loved one, or ill health, or financial hardships, the list could go on and on, but no matter what, they can all teach the same lessons and end the same way, with growth and development. This is the Lord's way of helping us to be able to receive his image in our countenance. We can become as he is, through these life lessons and we do not need to do it alone, he is there to help us. For he has taught us that if we trust in the Lord with all thine heart; and lean not unto thine own understanding and in all thy ways acknowledge him, he shall direct thy path. He will help us! I am not saying that we will not struggle or feel anger or worry about the trials of life, because we will, for we are only human and these are human emotions and reactions. I am just saying that if we learn that we can not control everything that happens to us in life or change some of the things we face and we turn to our Lord for help, we will be able to endure them much more easily and we will most likely learn the lesson he has prepared for us to learn. In no way am I perfect at this, rather I have had three years full of trial, after trial and with each one I seem to be getting better and better at finding the good in them, rather than focusing on the bad. But that does not mean that they are not still difficult, because they are. Nor does this mean I no longer struggle with them for I still do and I still struggle with fully being able to put all my trust in God, because that is a hard thing to do, it is an easy thing to say, to trust in the Lord with all thine heart, but to truly do it ,is hard, but I can honestly tell you, that when I have done this, the result has been amazing. 

My life has been really hard (for me!) especially these past three and a half years and there have been times where I wished I was someone else, but in all reality I love my life for I have learned so much about myself and about others. I have learned that we can not judge anyone for we do not know what they have faced, are facing, or will face. There have been many a times where I have thought, oh, how could they possibly understand what I am going through, they have it so easy, they don't know what it is like to face hardship, then I find out, they have lost a child, or they were homeless for a time being, or their spouse died, or they are a single parent raising children and have no idea how they are going to support them, or their loved one is dying of cancer, etc. Again the list could go on  and on and I realize everyone is facing something, yes, mine is very difficult, for mine is a child who is disabled and suffering from a progressive brain disease and it is something that is relentless, tiresome, emotionally draining, physically demanding, never ending, yet, it could be worse and I am no better or worse off than another, just different. I have learned to have compassion for others and have understanding, because I am not in their shoes and I do not fully understand their circumstance and I am not their judge, nor do I want to be! And I will tell you, this is so hard, because again, we are human and we judge each other, but I can tell you that through these trials I have faced, I have become better at practicing this. I have been humbled in so many ways, we lost our home and I was humiliated because of it and I worried what others thought, but I had to learn not to care, for it was not something we could control, our circumstances were far beyond anything anyone could handle and I had to swallow my pride and I had to learn not care what others thought of me, for they did not know the reason behind it. There have been times where my water has been shut off, or my electricity was turned off and no it was not because of financial problems, rather it was because I forgot, for my life gets so busy, I forget to pay my bills at times and I am being serious!, but I bet when you first read that, you thought really you didn't have money to pay your bills, again don't judge, for we do not know the reasoning behind the why.

Being the mother of a special needs child is hard, you get stares, you get unfair judgements, comments, questions, etc. And People ask me how I can be so patient with others regarding this matter and I think, I use to be that person, all it is, is ignorance. I use to be that person that thought, geese can't you control your child?! Or what is wrong with them? Was it something you did or was it just by accident? And I have had those questions of misunderstanding. I have been ignorant and so I can not be upset with anyone for not knowing or understanding, because you will never fully understand it, until you live it and so all I can do, is be kind, be loving, be patient, be understanding and try to teach them about it. It is hard and there are days that I want to scream at people for their uncaring, mean comments and judgements, but it does not do any good, I just end up feeling bad and so I am better off trying to show them love and compassion, rather than anger and upset. Instead of getting upset because someone sat there and watched me struggle with opening a door or struggled caring the heavy load that I have to carry when I take Payten out or people who sit and stare at me and Payten, I choose to be better, I choose to try to be aware of my surroundings and help where I can and not stare when it is so hard not to. I just try to be better not bitter!

 Because of Payten I have learned  what unconditional love is  and what compassion truly means. I have learned what service is! Not just what giving service means, but what receiving it means as well. I love serving others, I have always found joy in the service of others, but I use to have a hard time accepting  service from others, until Payten, then I was faced at times with  no other choice than to accept it and I that helped me to realize what service truly meant and how great it is to serve others as well as allowing others to serve you. I am truly grateful for the lessons I learned from these past few weeks, for I learned of love and faith and trusting in God's plan and will!  I gained a greater understanding of our Savior Jesus Christ's love for us and for his atonement and what it truly means. I realized the love that our Father in Heaven must have for us as well, for he gave us  his only begotten Son, that he could die for us and suffer for all our sins, so that we could conquer death and through and by his Grace return to live with him again. I came to the realization that no matter what happens, it will be okay, the Lord will help us through it, he knows each of us personally, and he loves us and he understands us. This experience has given me strength.  This life is indeed very hard and we will be faced with many things, but as long as we realize most of them are not because of our choices or wrong doing, and not because the Lord hates us, but rather because he loves us and wants us to learn and grow and become like he is. And as long as we choose to become better and not bitter, and we choose to start seeing the good in life, rather than all the bad, we will indeed become that beautiful polished diamond the Lord wants us to be! We will indeed return to him with honor and we will have his imaged in our countenance!

I have grown to know these things to be true and I hope that you will too and that we can help each other to become better and not bitter! May God bless us all! For we have many blessings, one of mine being that I was able to bring my daughter Payten home from the hospital again, to be with our family a little longer, so that we can learn and grow from her. It will not be an easy road and we are going to have allot more things added to our list of to do's for her, but I can tell you, it will all be worth it, for the reward is to come! And because I have been given the gift of more time, I am going to use it! I will not waste it, but rather treasure it and make the best of it. I will make memories of the time I have, that I will have to hold on to for the rest of my life, for there will come the day that Payten will not come home and those memories will be the only thing I will have! May we all find the joy in life and learn from the lessons life has to offer us! For we are all diamonds in the making!

May God's Will be done.

It has officially been a week since Payten was admitted to the ICU at Cardon's Children's Medical Center and I am sad to say that she is still really sick. On Tuesday evening, I left the hospital with frustration in my heart because the original admission for her was high fever of 105.6 and increased secretions. Which later through a urine sample and blood cultures etc. we found it was because of a severe kidney infection/UTI. They did an ultra sound and found a little damage on the kidneys and found that the left kidney was larger than the right, so they were worried that her Kidney's were refluxing or that the was something anatomically incorrect with either her kidney's or bladder, so on Tuesday we took Payten down to Radiology for a procedure called a VCUG, which is a procedure where they place a catheter in her and then they fill her bladder and put dye through it and take pictures following the dye. We were hopeful that it would show something, not because we wanted another thing added to Payten's list of medical issues, but rather because we wanted answers as to why she keeps getting these kidney/UTI infections. This was Payten's third major infection and we knew that if we kept having infections there, she would eventually go into kidney failure, so we just wanted answers as to why they might be happening, but we got nothing. The test showed little reflux and no abnormalities and so therefore they kind of placed blame on us as parents saying that hygiene can play a role in these infections as well. That really hurt me, because I take great care of my daughter we bathe her regularly and she is not in diapers for long periods of time, she does not spend a long time in the bath, first of all because she can't and second of all because we know that it is not good to do so.

So as I said I left with a very heavy and frustrated heart on Tuesday night, feeling like I was the worst mother in the world. I was so worried they were going to send her home and we would have no answers as to why and be right back in there with more infections, because in my heart I knew something was wrong and is still wrong. Wednesday morning came and I was not worried really about Payten's health, because she was doing better, they had cleared the infection and they were planning on sending her home and I had finally come to grips with that. I thought maybe that is what Payten needed, to come home and be with her family and if she got another infection then we would deal with it then. But when I got to the hospital my world was turned upside down. I walked into her room thinking nothing at all and then I saw my daughter, she was a pale grayish color, hooked up to her ventilator while awake, crying out in pain (some sound was coming out because she was on the vent), eyes sunken in, and fever of 104. I just broke down sobbing. What was wrong with my little girl, no one could tell me. All they could say was that she was in critical condition at that moment and they were taking special care of her and watching her extra closely. That did not bring me much comfort, all I could think was, is this the end? Were all the feelings I have been having actually happening at this moment? I was scared to death, I called Joseph, my mom and had them come down, then we called Joseph's mom a little later and had her come down. We were saying our goodbyes because looking at her, you thought she was going to die, she looked horrible. I even went as far as having my dad pick my other kids at school and bringing them in to see her and say their goodbye. We prayed together as a family and we told Payten that she could go with God and live if that is what she needed to do, we asked the Lord to help Payten not be in so much pain and we told him that if it was his will, we wanted to release Payten's soul to him so that she would not suffer any longer.

We held her and tried to comfort her, but comfort would not come, until they finally sedated her. Then she calmed and Joseph and I took turns holding her while she was in bed and talking to her and singing to her. I told Payten how much I loved her, I told her that she was my angel and that I was so pleased to be her mommy. I told her how grateful I was for the things she taught me about unconditional love, compassion, true happiness, joy, etc. I let her know everything I loved about her, her smile, her big eyes, her curly hair, her laugh, her perfect hands and feet, her personality, etc. And I told her I would miss all of those things. I told her that she did not need to stay here for me anymore, that I was strong enough now to say goodbye. I told her I did not want this for her, that I wanted her pain to go away. I told her that if she saw her Grandpa Merrill or any other family members that had already passed on, that she needed to go with them, that she need not be scared, because they would take good care of her, they loved her as much as her mommy and daddy did and that they would keep her safe until we were reunited again. I told her that once she allowed God's will to be done, that she would be happier, she would be able to run free and skip and jump and laugh. I told her that she would be able to spread her beautiful butterfly wings and fly. I asked her for one favor, I asked her to visit us often in our hearts and to watch over her little brother Emmett for he would need her. Then I kissed her cheek and told her to go with God and live.

Now, I do not know what is going to happen, I do not know if she is going to come home with me, but I do know that I have let her know everything I would want her to know, just in case she does go back to live with her Father in heaven. As of right now, they are still sedating her and giving pain medications, we are going to try to ween the sedative to see how she does and stay on top of the pain  with medication. Her diarrhea is better, she only had one bout this morning, so we are going to try to start some pedialyte and see how she does with that. Still no answers as to why or what the infection is exactly, all we know is her little body is fighting something and we are waiting to see which is stronger, Payten or the infection. We are waiting to see what Heavenly Father has in store for us, whether his will be to allow us to have her longer or if his will is to bring her home to heaven.
Her fevers are still high, even though they have been giving her Tylenol and ibuprofen whenever they can. Her white blood cell count is pretty low, so they are going to keep an eye on that, her lactate is high and they said last night she was is acidosis. But today the acidosis looks a little better, but the lactate is still high. I just wish I knew what the Lord wanted to for her, so I could come to peace with whatever that was/is. I know our family is being lifted through prayer, by some many people who love her, but my sincerest request is that you do not prayer for miracles, I am not saying I do not want a miracle to happen if it is meant to happen, what I would rather you ask in your prayer for Payten is that the Will of God be done, whatever that maybe. Pray for the suffering to end and for Payten to be happy again whether that be here on earth or in heaven, I just want it to be what God wants, not what we as human beings want. Thank you all so much for your love and support, we truly appreciate you all.

Life's an Hour Glass, may we make memories of the past!!!!

I have been on one Hell of a roller coaster ride and am still on it screaming for the conductor to stop and let me off! I seriously am on edge with everyone and everything. Typically when Payten goes to the hospital I am so immuned to it, that I really don't react, it is just a way of life and I say oh well she is here and in a few days she will get to come home and we will go back to a merry little life. But this hospitalization has thrown me for a loop. I don't recall being on such an emotional roller coaster in my life, expect for at the beginning when all of this begun. I am a literal wreck. The only thing that seems to help me is blogging. That is why I have been doing it so much lately. For it allows me a little release from my emotions. For it seems that no matter how loud I scream at the conductor to stop the ride, it just keeps on going, round and round! So when I am on here, I feel free to say and write and do anything I please and that seems to be the best medicine for me right now in my life.

Right now, I feel and I am either crying or wanting to to pull my hair out in frustration. I just want to do nothing! I don't want to deal with anything or anyone. I just want a vacation from life and from reality. I have never had a hard time staying at the hospital with Payten and dealing with all the strife that comes with mothering her, but honestly this time around, I am truly having the hardest time being at the hospital and I have been on edge with everyone around me and that is not me. Maybe I have remained too strong for so long that I am snapping into pieces! And I hope and pray that one day I will be able to collect those pieces up and put myself back together so I can become that strong momma again!

 Like I said before, I had the feelings that I was going to lose her, but that I would probably eat my words tomorrow! Well here I am eating my words!(for now at least!) And that is okay, I am so over joyed to be able to say that Payten is doing better and will soon come home, but I am also frustrated, for I wish it were more simple, I wish that Payten's life was more black and white. I wish it was not so unknowing, but rather and open book that told the future, but alas no life is ever like that! I know that even though she is getting better, this is not going to be an easy road, for Payten is not coming home fully well. She is adding to her list of problems and that is the toughest part for me to swallow, because I want her list of problems shrinking not lengthening! Today, I talked with the Head Hospitalist, I told him that I felt like we have been getting the run around this visit. I told him that I felt like every doctor was telling us something different regarding Payten and her care and he apologized to me. He said that it was as hard a situation for them as it was for us, because normally Payten comes in for the same old thing and they know exactly how to treat her, but this time was different, Payten through them for a loop, for it was something totally different, that they had no I idea on how to help Payten exactly, so they had to go through trial and error to figure out the best way to help her and they still are searching for answers, that will hopefully come tomorrow morning after her procedure.

I guess I am just frustrated with my Lord right now. No I am not angry with him, rather just frustrated, for I do not need feelings and impressions and experiences happen in my life, such as the ones that occurred the past few days, that lead me to believe she is going to be going back home to him, if that is indeed not going to happen. Because, I have been so sick with grief, that I have lost precious time with my daughter and so we had a long talk last night, LOL! And I told him, as much as I want to not be blind sided by Paytens death, I also don't want to experience these emotional roller coaster's, because I am one that believes in listening to all feelings and experiences and therefore it is not fair to me or my family! But at this moment I am glad that I will have more time with my Payten, but I am sad that there will be added struggles to her already hard life. We saw many doctors today and they went over what the plan was for her. They said that due to the severity of her infection, they do not believe it is coincidental, but rather that there is something anatomically incorrect causing the infections and so therefore it was necessary to perform the VCUG to see what that abnormality could be. They went onto say that if they find nothing to be wrong, then we will need to put Payten on a continuous antibiotic to control the infections and keep them from happening. We asked how that would work, for she seems to already be so resistant to so many antibiotics and they said that was a really good question, that they would have to do tons of research and find antibiotics that she has never taken before and use those, but again my worry is that eventually those will lose their effect and what do we do then? The other possibility is surgery to fix the problem, I don't know what type of surgery it would be, meaning what they would exactly do, all I know is that there are several different things that could be wrong, that different surgeries would fix, but each surgery is different, so we again we will need to wait until it is done to know exactly what we are being faced with.

To me, the hardest thing to deal with is the fact that it seems like Payten is doing so well in so many different ways from a therapy standpoint and yet doing so horribly from a health standpoint. It breaks my heart that she has to have something new going on that will require treatments and follow ups. But the doctor said that if we do not do something we are headed toward Kidney failure, and so this is their way of trying to nip it in the butt before that happens, because heaven knows we do not need Payten going into Kidney Failure for it will not be good. So again, even though Payten is doing so much better, she is still not better, for she has some serious complications that have to be addressed. I guess my feelings were right in a way, we are heading down a slippery slop that might not end well. I just wish I knew exactly when that would be and what to expect.

So my prayer for all of you tonight, is that you realize this day, that life is an hour glass made of memories from the past, so don't waste it on the little things. Don't use your days to worry about the not so important things of life, such as a perfectly decorated home, dishes in the sink,  kids behaving perfectly or always looking their best, or your to do lists, perfect grades in school etc. Rather hold your children tight, snuggle with your spouse, call all your loved ones just to talk and say hi and reach for the stars! Please hug and kiss every single on of them as much as you can, tell them you love them often. Don't get upset at your children over the little things, rather allow them to be who they are and let them be little! Don't have them grow up to fast. For we do not know the size of their hour glass, all we know is that once the sand runs out, it is over and all we will have our the memories of the past that we made with the. For it will not be the to do lists,  the perfect homes, the compliments of good behavior,  their grades, rather it will be the memories. That is why I want so badly to take Payten when she is a little stronger on vacation, if I could I would travel the world with her until that small hour glass of hers was empty, but I can't, for I do have life that I have to attend to and other children to care for, so I will have to settle for Disneyland instead.

If time, health and funds allow it, I will take her to Disneyland and I will take her on every single ride she can go on and I will take her to the beach and dance with her in the sand, and let the water caress her feet, for I will not waste my precious time with her, for I am preparing myself because it will soon be at hand the time when heave calls her home and do not want to regret not making memories that I will be able to hold on to, til we meet again. For now though the Lord has given me the miracle of more time, no matter how sad it makes my heart that Payten has to suffer more trials, it is still a miracle all the same, that I will not take for granted. Again, Kiss your children goodnight, read them that bed time story, sing them that special song for tomorrow it may end. I love you all and appreciate all your love and support and you have shown unto me and my family these past few days and years. May God bless you all.