Sunday, August 26, 2012

Bishop Call, Ann and Toni

Last night, my dear sweet Bishop and his wife and daughter came over. In they walked with a gorgeous bouquet of homemade flowers.
Oh how I wish this picture did justice to the beauty of these flowers that are turquoise and a brilliant blue. Each time I look at them, I am reminded of the love that they each hold for me. The time that was spent is a treasure for me. I will look at these flowers each and every day of my illness and treatment and use them to find strength and hope in which to fight to regain my strength.

Thomas, Hayden and I had the best talk with Bishop, Ann and Toni. We discussed the doctor's appointments, treatment options chosen, the diagnosis, what this means going forward, our fears, our answers, our blessings, our trials of faith and the love for and from our Savior. Tears were shed, testimonies were born, gratitude was expressed and love within the room and beyond the veil was felt and expressed. It was an amazing couple of hours that will carry me far into these upcoming treatments and will stand as a beacon of hope, reassurance and the path that needs to be walked.

Toni, Bishop and Ann's daughter, is in her 20's and has walked a similar health path with me over the past couple of years. Through this, we have gained a friendship, a mutual understanding of one another and an empathy that runs very deep. I have so much respect and admiration for Toni. She is in her 20's and already learning and experiencing what I am in my 40's. I cannot wait to see what incredible plans the Lord has in store for her in her life. She has an amazing spirit and carries the Spirit of Christ and the Holy Ghost with her wherever she goes. I love, respect and absolutely adore her.

As we talked last night, I expressed to Bishop that when I look back on this year and the testimony that I have gained, the closeness I have achieved with my Savior and the reliance that I have learned to give to Him, I wouldn't change this year. The blessings have far outweighed the challenges and trials.

Bishop asked if I would elaborate on the blessings...what specifically have I gained or been given. With tears in my eyes, I tried to explain some of my most precious gifts that I have received over the past year.

I explained using the movie, 17 Miracles. (If you haven't seen it, rent it today... amazing). As I watched this movie, I had tears streaming down my face. At one point, the pioneers can walk no further, they are worn out, completely exhausted, famined and have nothing left to give, they are completely out of strength. In that moment, angels from the other side of the veil and help push the handcarts. They are not seen, yet the people could feel their burden being taken, the handcart seemed to push itself with ease and the burden was taken from the people.

I have experienced that. I have walked and endured until I had nothing left in me. I literally could not take one more step, lift anything else or feel like I could survive for another 5 minutes. In those moments, I have felt angels, family members that have gone before me to the next life and even moments where the Savior himself, has picked me up, carried me and physically taken over the strength required to walk or preform physical duties here in this life. I can testify that it was power and strength that I did not have that carried me through any particular task I was doing. I have not felt this just once or twice as I have endured the last year of health issues. I have felt it many times. I am always humbled and in awe of the situation when it happens, who am I to receive such divine intervention? Who am I that Christ would extend His love and helping hands unto me? I am a daughter of God and therefore, I am important to Him. He loves me, He knows me, He cares about me and He wants to help me.

I have come to learn so much more about the Atonement. I laugh somedays that I brought this on myself because of a conversation that Jodi and I had 3 years ago at Time Out for Women. In short, I was trying to "DO" enough to make it to the Celestial Kingdom. I have since learned that I cannot merely "do" enough to get there, I must BECOME His in my heart. This doesn't require doing but becoming. Funny, He had to take away all of my ability to do in order for me to clearly understand this concept. But, I do know what is required of us, is that our hearts are turned over to Him. When our hearts are His, we no longer desire to sin, but desire to do all in our power to do what is right and follow our Savior.

I have learned for a certainty that I am a daughter of God. I new this... but I have experienced it on an entire different level. What an amazing journey this has been. I am so grateful for the knowledge and understanding that I am indeed a daughter of my Heavenly Father and He knows me as well... even better than I know and love Hayden.

I have been blessed each and every day... not most... but every day to see the hand of my Savior in our lives. Each night as we kneel down for prayers we express gratitude for the blessings of that day. No matter how hard the day was, no matter the trials or disappointments that came, there are always blessings from the Father. Since we have chosen to look for the blessings as a family, they have each and every day been there. What an amazing eye-opening experience to understand and appreciate that the Father blesses us in some way each and every day of our lives. My gratitude to Him has increased so much this year. I am so grateful for the blessings that our family has been given. We indeed have been truly blessed.

Testimonies have been strengthened.... mine, Thomas' and Hayden's. We have a knowledge that our Savior lives, He knows each of us personally, He knows our strengths, our likes, our dislikes, our shortcomings, our talents and our love for Him. He knows us better than we know ourselves, yet He loves us with a perfect love. He desires for us to find joy in this life.... to find joy in Him... to find joy in service to our fellow man and to find joy in the journey.

All in all, what has definitely been a couple of the hardest years of our lives have also been the best. They have been excruciatingly hard and difficult, they have taken us to the brink and forced us to really look at everything we believe and actions because of those beliefs.

However, the blessings that we have received, the closeness that we have achieved as a couple and a family, the cherished relationship that we each personally have with our Savior and Father in Heaven are far beyond any trial. The things we have gained.... absolutely priceless. We will take these relationships beyond the grave. We will hold the relationships with our Savior, Father in Heaven and each other has been worth every heartache.

This song sums up my feelings of the past year of my life. Somedays I am convinced that Hilary Weeks wrote this song for me personally. It really has been a Beautiful Heartbreak.

Saturday, August 25, 2012

Support Rally

I am in awe of the support that has come to me in this past week. I have been encircled in the arms of my family, friends and loved ones. It is in moments like these of uncertainty and trials where true friendships are felt.

There have been many that I called on for advice, many who have listened, even more that have called, stopped by, emailed me, sent messages via Facebook.

I am touched beyond words with the sheer kindness and love that I have been completely showered with.

I could not let the kindness and outpouring of love go unreported. I also want to express the difference it made, as I was trying to determine what I should do and how strong to fight. The influence and love I have felt has made my determination to fight even stronger.

Thanks to each of you that made a very difficult week, bearable. My gratitude and love cannot adequately be expressed... thank you!

Thursday, August 23, 2012

Neurologist Response

The next day, I received another call from the neurologist, was I sure that I understood that the risks were approximately 70% death? I expressed that I cannot continue to live with my body shutting down on itself and killing itself, one day at a time. My husband and I agreed that the life I have now, is not the way we want the future to look like. We understand the odds and feel good about going forward with treatment.

The Neurologist explained that there was no data out this far. No one else, as far as they knew, that had my condition, without immediate treatment at onset, had survived. They did not know the odds.

I expressed to the doctor that the Lord has chosen to intervene and save my life time after time this year in the following situations that we were aware of: I survived my vasovagal nerve being cut, a complete bleed out within my body, my heart stopping, seizures, grand mal seizures, heart rate significant slowing, unconsciousness, falls, organs shutting down and I am sure more other times that I am even aware. My theory remains, if the Lord chose to keep me here in all the above situations, where I was blessed to receive divine inspiration, that I was confident that He would continue to watch over me and bless me as I face this next hurdle and challenge.

As Thomas and I sat in the temple, I opened the scriptures. The first verse that I opened to was Alma.

Alma 31:31

31 O Lord, my heart is exceedingly sorrowful; wilt thou comfort my soul in Christ. O Lord, wilt thou grant unto me that I may have strength, that I may suffer with patience these afflictions which shall come upon me, because of the iniquity of this people.

Then, this scripture:

Alma 34:41

41 But that ye have patience, and bear with those afflictions, with a firm hope that ye shall one day rest from all your afflictions.

And Finally this one:

Doctrine and Covenants 75:11

11 Praying always that they faint not; and inasmuch as they do this, I will be with them even unto the end.

As I read these scriptures in the temple, I realized that the Lord had a direct message for me. What my Savior is asking of me is to bear my afflictions and trials with patience and I must continue to endure to the end, whether that is to the end of this trial, or until the end of my life. And, as I do these things, the Lord will help my symptoms to ease. The fainting, the seizures, the miserableness of the nerves being attacked and organ functions being limited are all temporary and all will be resolved in time. It is a temporary state.

All the Savior is asking me to do is endure to the end. As I endure, as I take each step forward in faith, as I try to conquer this illness, He who has walked this road before me, He who has already borne this burden for me and suffered the pains of it for me, He understands the depth of my pain, the agonizes shooting nerve endings, the depth of my hurt.

As I closed the scriptures, I said a prayer of gratitude for the answers that I had received, for my Father in Heaven and His continued presence in my life. I felt the arms of my Savior around me. I felt peace. Not peace in the outcome or the journey, but peace that I would not walk this journey alone. The peace and comfort that my Savior, my older brother, and my friend would walk each step with me, and when the journey gets to hard for me to walk, He will gently pick me up and carry me to a point where I can again walk the road required of me.

What more can I ask for? I have been blessed beyond measure and although I am apprehensive about the treatments, the pain, nausea, headaches and all the temporary ailments that this transplant will bring, I am confident that my Savior will walk this journey with me. I may be weak and unable to do what is required of me on my own, but with my Savior at my side, I have faith that together, this is totally conquerable.

Wednesday, August 22, 2012

Long Awaited Diagnosis

For months and months I prayed for a diagnosis, an explanation of some sort in hopes of a treatment. Monday afternoon at 4:00pm, the moment that we had been awaiting arrived. As Dr. Goodman walked into the room I could feel that he had a diagnosis, a name for this illness. As he began describing what was happening to my body, based on test results, he explained that what I have is such a rare disorder/disease that there is not yet an official name for it. He personally has treated 8 patients in the past five plus years for this disease. No papers have yet been written, although Mayo does recognize and somewhat understands this disease.

My diagnosis consists of a combination of Autonomic Neuropathy, mixed with non-existence of Catecholamines (Dopamine, morepinephrine and epinephrine), and the breakdown of my central nervous system. He stated that he has only seen this is a couple of other patients and all were treated within the first four months of onset. My onset was a year ago. He explained that we are in uncharted territory because of how progressed this disease has come combined with the longevity of my body having had experienced the symptoms. Not a good combination.

In other words, we were given a treatment option with a disclaimer of he had no idea if it would work or how well. We had two options.... do nothing, treat symptomatically and minimize my discomfort. Or, we can try an experimental treatment. It is an IVIG transplant of my hemoglobin, gamma globulin, and antibodies, etc. I have 10 to 20% odds of the treatment working to stop the disease from progressing any farther. However, with this treatment comes HUGE and SIGNIFICANT side effects including, transplant rejection, kidney failure, aseptic meningitis, and any of those would likely result in death (70% chance) due to my weakened state.

Thomas and I left Mayo Clinic in shock. We found out that my body is literally killing itself piece by piece, nerve by nerve, organ by organ. My body has no idea what is good and useful within my body and what is bad, so it is attacking everything and beginning to shut down organs and all autonomic functions ie: blood pressure, heart rate, pain sensors, swallowing, breathing, internal thermometer, urinating, digestion, heat intolerance and more....

So, we are supposed to choose taking a medicine for each of those conditions, and any others as the pop up or we try to stop the autonomic system with an aggressive treatment that may or may not work and has a huge risk of death.

What odds are those? I am supposed to choose my body killing itself a day at a time, or go get a complete immune system transplant, that in my weakened state that I only have a 20% chance of it working? If it doesn't work.... death, sooner than later. In my mind, this was NOT the diagnosis or explanation that I was so frantically searching for.

Tears were shed on the way home and throughout that night. Prayers were offered, pleadings with my Savior took place for Him to give me some resemblance of peace and assurity that I would be okay. Peace came but not with an assurance of many more tomorrows.

Tuesday evening was spent in the temple trying to receive inspiration from my Father in Heaven and Savior as how to proceed with treatment. Thomas has overwhelming peace that it is all going to be okay. For me, it took time. I wanted some overall peaceful feeling.. instead, I kept being directed back to a priesthood blessing that I had received earlier... wherein the blessing was giving me answers, "it will work and you will be okay". I tried putting that sentence into the different scenarios. Only one worked....if I try the treatment, the Lord has said it will work, and furthermore I will be okay. Good enough for me... I contacted the autonomic neurology office and told them to please schedule treatments.

Monday, August 20, 2012

Instagram updates

Random Happenings in the Murphy home.

A couple of nights ago we had a huge monsoon storm with down pouring rain. We had gotten back late from a doctor appointment and Hayden had waited up... the mood was getting a little too serious, so Thomas picked up Hayden and literally went and threw him out in the rain. It absolutely ShOcKeD Hayden! He was yelling and then laughing... too funny!
Poor boy was soaking wet! It definitely was fun. We all laughed and laughed about it!
Game night at our house.... we saw The Odd Life of Timothy Green... great movie. At night, Suzi, Katelyn, Brigham and Talmage came over to play. We played Sorry, Zingo, a new Farkle game, ate McDonalds and ice cream sundaes. Fun night!
Legos, legos, legos and more legos... there are constantly legos being played with at our house. They are everywhere! I sure love the creativity that comes from a mere box of legos.
Talmage... what can I say??? This boy brings so much joy and happiness into our lives. If Thomas wants me to stay down, he asks to borrow Talmage. Talmage will cuddle up and watch a movie and I no longer have the desire to do anything besides sit. Love this boy!
Ever since Brigham taught Talmage to do goofy poses, we hardly ever get a real one our of him, he consistently poses. Too funny!
Speaking of crazy poses... Hayden sticks his tongue out all the time. I don't think Suzi is getting far with Hayden's homework right now.
Cuddle bug with Uncle Thomas. Have I mentioned how much we LOVE cuddling with Talmage?
Last Sunday Hayden pulled out the swords. I commented that I didn't know if that was appropriate Sunday behavior. Hayden quickly added, "Ummm Mom, do you think Nephi was gentle and quiet when he killed Laban or aggressive?" Ok Hayden... you win.
Of course, Talmage, being one of the "big kids" had to get in on the fighting action. I will say that he "dies" better and funnier than any of the rest of them!
We still have lots of fun at our house~ luckily, the kiddos are still visiting me. I absolutely love when our home is full of people, laughter and love!

Sunday, August 19, 2012

The influence of one

One of my dearest friends just told me she is moving to Cali. I am so sad. I am going to miss her terribly. We went to lunch today and just talked and talked. I think we could talk for days and never run out of things to talk about. She is an amazing person, one that I look up to and admire so much.

As I have reflected on mine and Marla's friendship and how she has influenced my life, I am amazed with the power of one person.

Marla has changed my life for the good in so many ways.

She was first Hayden's cub scout leader, an incredible one that loved Hayden and encouraged and supported him.

She introduced me to Dr. Shiflet...Priceless.

Frankie, Marla's son, and Hayden have become great friends.

Marla has been one of the people I have been most honest to about my health and feelings and she has loved and accepted me and encouraged me and believed in me... always!

Marla has taught me so much about service and love and giving and caring and the power of genuinely listening. She has taught me that one person can change a life for the better in so many ways.

Marla makes me want to be a better person, be better at my church callings, try hard and embrace life more.

She is a true treasure and one of the greatest blessing to come into my life in the past 2 years during my trials.

I will miss my friend but am so happy for the incredible opportunities that the Lord has placed before her. When she was telling me how it all just fell into place, I could see that the Lord was answering her prayers. He was providing her with all the great blessing that she so deserves.

I keep focusing on all the great blessings unfolding her life and I couldn't be happier for her. I will miss my friend, but am so grateful that the Lord is providing her with all the blessings that she has been praying for for so long.

I am reminded that when we put our faith in the Lord, trust him, do what he has asked that he provides blessings and opportunities that are amazing. I see the Lord's hand in Marla's life and am so genuinely happy for her. I am encouraged and reminded how the Lord can and does the impossible and brings miracles into our lives in the most astounding ways.

I will miss you Marla, but know we will always be friends. I cannot wait to hear how all your blessings continue to unfold as you set out on this new adventure.

Friday, August 17, 2012

Grand mal seizure fright

Thursday was honestly probably one of the most frightening events of my life. As I walked into Dr. Shiflet's office, I felt a seizure starting to come on. My right eye started flicking and the pain behind it started building. I did all I knew how to do to keep it from coming. After a few moments, the symptoms were increasing and pain worsening, I got up and headed for a table to lay down on and pulled out my cold laser. A few seconds, I could hear Dr. Shiflet's voice and stood up to talk to him.

Bad decision. I started into a seizure and went completely out. According to those with me, Dr. Shiflet and Kaitlyn caught me and got me to a chair. I went into a grand mal seizure and was completely unconscious. Dr. Shiflet adjusted my atlas, used an ice pack, red and green lasers and did whatever doctors do in these situations. My pupils went black, my heart was beating rapidly out of my chest and I was completely unconscious. From what I am told, I then proceeded to go into a second grand mal seizure... eyes rolling back behind my eyes, large jerking movements everywhere, and complete loss of consciousness.

This episode definitely took me out the very longest, taking over an hour and a half for me to come back to complete consciousness, for my pupils to go back to normal and my heart rate to settle down. More worrisome is that during this event, I could NOT tell you my name, how to calculate simple 2 + 2 equations or come up with other simple answers.

Dr. Shiflet was absolutely relieved when I finally began to respond and my body started to go back to its normal state. He talked to me and said that although I had been going to him for the past six months, that he didn't even realize what bad episodes these had turned into. It seems that each time I go in for more testing, more nerve stimulation, biopsies, tilt table testing that whatever is happening inside my body goes on fast course for utter rebellion and my body tries harder to fight against itself. Dr. Shiflet told Thomas that he needed to tell the doctors that they needed to come up with a plan with no more testing..I am not a lab rat but a person that is being very hurt by all of the explorations. Although meant to help, they are causing my body to turn on itself at an alarming rate.

Tears swelled in my eyes as I realized all that had taken place, all the time and love that was administered to help me. All other patients were sent to other doctors, were re-scheduled or waited. Dr. Shiflet did everything he could do to will me back to consciousness and help me remain here on earth. He sat by my side for over an hour and a half to help me, trying to treat me and easing my fears.

In those moments following this event, although hard to put into words, were some of the most tender of my life. For in those moments, I was not alone. I felt encouragement, love and feelings of hope and reassurance, lovingly and gently pleading with me to hold on and helping me to muster all the strength I had inside to fight slipping away. Although my body was in complete disarray and my thinking was completely scrambled, a peace and sheer comfort swept across my spirit and I was comforted. I was not alone in fighting to regain consciousness, I was surrounded by earthly and heavenly angels to buoy me up, strengthen me and whisper words of encouragement that life was worth fighting for.

Exhaustion does not explain the fatigue that followed. Words cannot express the fear I felt when I wasn't sure who I was or what was happening inside my mind and body. I slipped in and out of awakened states for the rest of the evening and night. Emotions flew freely as I felt moments of fear and hopelessness to be replaced with feelings of hope, peace and love and an inner strength.

Poor Hayden, Thomas said that he would keep cuddling up to me and asking Thomas if I was going to be okay. Thomas lovingly reassured Hayden many times that his mom had been given many priesthood blessings that the Lord was protecting mommy and he need not worry. My loving boy did all in his power to make me more comfortable. Although I was barely conscious... so absolutely wiped out, he rubbed my feet, patted my back and readjusted my pillows and blankets for me. It rips my heart out knowing how scared Hayden was.

Even more than the feelings of sadness for Hayden's uncertainty, I felt gratitude that I was still here. Although I was in a semi-conscious state, I was indeed still here. The feelings in my heart far exceed any earthly words to represent their meaning. How do I ever express my feeling of gratefulness and gratitude that I was able to wake up this morning and use words and hugs to comfort my son? How deep is my thankfulness that Thomas and I could discuss Hayden's feelings and together come up with words to comfort him?

No, there are no words that adequately express my heart of thanks. Words or not, my Father in Heaven knows the depth of my gratitude, the devotion of my soul and admittance of my utter reliance of my Savior and for his protection and allowing my heart to continue to beat. The words may not be able to adequately express my love but my Savior knows my heart and my love for Him.

There is no doubt that I will forever remember this day, the lessons learned, the sacrifices made and the tender feelings that were experienced. My love has deepened for my Father in Heaven, my Savior and some of the incredible people that the Savior has helped to place in my life.

I don't think I have ever experienced a sweeter hug than the one I was given by Thomas and Hayden this morning. As Hayden wrapped his arms around me and Thomas came over and wrapped both of us in a hug, I offered a prayer of gratitude to my Father in Heaven that I was gifted more time with my boys and another day to walk this earth and experience all the good that has been placed in my life.

Wednesday, August 15, 2012

Typical Day

Today was a typical day. We got up late, rushed around trying to get out the door for school and work. It doesn't matter how hard I try, me and mornings no longer get along. I am so tired in the mornings and my speed is turtle speed, at best. Hayden loved his easy, carefree summer mornings of no rush. Those are now gone and we are adjusting to real life again.

Julie was kind enough to drop me off at work on her way to school. Thomas took Hayden to school after we spent a great amount of time trying to help him understand different narrative voices.

Julie and I hit QT for my morning Diet Coke run before she dropped me off at my dad's house. Work was uneventful. Jodi called and picked me up a little early, we swung by Sonic for my next Diet Coke and headed to make the rounds of picking up kids. First Talmage at the babysitters, then Desert Mountain for Jodi's kids and then to drop me off before Hayden was to be picked up at 3:15.

Brooklyn stayed and played and it was so nice to have Hayden and Brooklyn get along so great. I fell asleep, like usual. Hayden made him and Brooklyn corn dogs for a snack, while I slept.

Hayden had finished all homework and asked if while Thomas was at a business meeting if he and I could watch Green Lantern. I agreed and cuddled on the couch for an hour and a half with my bug. He explained everything to me and loved the movie as if it were his first time seeing it, not his twenty-first.

After a great scripture study on Shepherds/sheep/wolves in sheep's clothing, and some great insights from Hayden. We had family prayer and tucked Hayden into bed.

Thomas and I sat on the couch and talked while he rubbed my feet with my neuropathy medicine. Of course, I fell asleep and we both woke up sometime during the night to turn off the tv and head for our room.

There was nothing unique or out of the ordinary about this day. It has become our normal. We don't go many places. I fall asleep every afternoon when I get home. We stay at home as much as possible. We have a very low key life. Lately, I see the blessings in the ordinary and the mundane. And, for the most part, I have really settled in to our new life. Not the life I had planned or wanted, but one where I get great joy out of just being with my family. For that, I am grateful!

Monday, August 13, 2012

What a Day!

I want Hayden to understand that life isn't all about just parties, celebrations, fun family trips, birthdays and fun times. I need him to understand that life is what happens in between those fun and glorious moments. It is in the trenches that strength is gained. It is in the ordinary that the extraordinary moments are found. It is in the day to day trials of life of learning to overcome and endure that character is made.

Lately, we have had lots of character making moments. Monday was a struggle to get back into the routine of work and school. Work was a rough day filled with seizures, passing out and just feeling downright cruddy. Suzi picked me up from work and took me to Dr. Shiflet to see if he could help me out. I always feel better after he works on my back, do a detox foot bath where my liver and kidneys are dumped and utilize cold lasers to try to minimize the frequency of the seizures. I was in his office for a couple of hours getting all types of treatments. Dr. Shiflet was trying to undo the problems that the last tilt table test caused.

I felt better but was exhausted on my way home. I slept on/off. Joyce picked up Hayden from school and took him to art lessons. She picked him up and met us back at our house. Luckily, Thomas had made enchilada casserole on Sunday so all I had to do is turn on the oven and throw the pan in. I did. Then, coiled on the couch and fell asleep.

Joyce and Thomas said that they came home to me seizing on the couch. The seizures are getting so much worse. Not fun. Sure wish they could get them under control. Thomas used my laser and was able to bring me back.

We were able to have Family Home Evening together and talked about miracles. Miracles in Jesus' time, miracles in our lives and miracles in Joseph Smith's time. We talked that one of the greatest things is that how abundantly we are blessed like in the loaves and the fishes. Not only was it a miracle that so many were fed, but they weren't given just enough to survive, they ate all they could. They feasted. After everyone feasted and ate all they could, there were more left overs than food began with.

I have seen this in my life. I'm not just given the bare minimum of what I need. I am blessed with an overabundance. Blessed with so so much and given so much extra. The Savior is like a parent that wants to bless his children. He yearns to do for us, we just must ask.

A few minutes after 7pm, Hayden was exhausted and begging to go to sleep so we closed FHE and skipped the game and dessert. Right as we ended, we received a knock at the door. We surprisingly opened it to see Bishop Call, Ann and Toni. They came bearing a birthday gift for me. They were sick over my birthday and didn't want to get me sick. How sweet are they.

One of our tender mercies or miracles is the incredible people in our ward family. Our Bishop is such a great man. He is so in tune with the Savior and his will. Such a beloved man. I absolutely adore his wife and daughter. They are so special to me. I was so touched that they thought of me. We enjoyed them stopping by and talking with us for a little bit.

Hayden was definitely sick and woke up a couple of hours later in pain with sinus pain. Poor boy. He awoke, barely able to speak and asked for a priesthood blessing. Thomas gave him one and Hayden was promised healing and relief from the pain. Days later and he is still doing fantastic. He sure has gained a testimony of priesthood blessings and their healing power.

All in all it was a great day. One I want to remember. Not because anything was unforgettable but because it wasn't. It was an ordinary typical day in our lives. The days that I cherish because it means that I am alive and here and still among the land of the living. I hope Hayden realizes that the "good stuff" is the every day relationships, love, communication and friendship shared with family and friends. As I knelt down for bed, I found my prayer full of thanksgiving for all I have been blessed with and all the wonderful people in my life.

Sunday, August 12, 2012

Jodi's Ward

Jodi and Troy spoke in church and Thomas and I had the pleasure of sitting with their kiddos during church. The talk they were asked to speak on was President Monson's talk on where did we come from? Why are we here? Where are we going?

As Jodi discussed this topic during the week, we had many great conversations about these questions. I feel so blessed to really know the answers to those to questions. To have the knowledge and understanding that I lived with a loving Heavenly Father and my older brother Jesus Christ in the pre-existence, in heaven, before coming to this earth to receive a body. We are here on this earth to be tried and tested to see if we will remain faithful to our Father in Heaven. To make choices each day to follow the plan that the Father set forth. To gain a body and learn how to control it. Then, someday, when this life is through, we will die, leave this earth life, but we will continue to live. Our Spirits will be reunited with our loved ones that have gone on before us.

What an incredible knowledge. What a road map. The universal questions of life... where did I come from? Why am I here? Where am I going? I know the answers to those questions and am so lucky to be able to teach Hayden and help him come to his own understanding and beliefs to the answers for these questions himself.

As Jodi spoke, she used mortal experiences to explain why knowing who we are and where we came from are so critical to making decisions in our day to day lives. And, why knowing that this life is the middle, not the end, is so critical.

I was not ready for how she tied my life into her talk. She explained that as I have had miracles and lived through the impossible, save only for my Savior intervening, that I have learned so much. She told how much stronger I am and more equipped with experiences to teach Hayden. She lovingly talked about me being able to endure more because I understand that this life is not the end. No matter what happens to me, I will see Hayden and Thomas again, and continue to be a family with them in the next life.

She expressed how I now take more moments to really talk to Hayden about the Plan of Salvation. I take every opportunity that I can to teach him important gospel lessons and how they apply every day. I use these teaching moments to help Hayden understand that this life is not the end. It is simply one step in the process of becoming more like our Savior.

Jodi was chocked up a couple of times while expressing how my relationship with my Savior has become so much more deep and meaningful during this trial. She is right, I have had quite the challenges, endured more pain that I would have thought possible, I have been stretched well beyond my limits, but it has been in those moments, that I have developed a greater and deeper relationship with my Savior. I have learned how much he knows me, and loves me. My relationship and trust in Him has grown so deep. I don't know if I could have learned the things I have without walking the path I have been down.

I am so grateful for a loving Father in Heaven. As Troy stated so wonderfully, life is long, it is a marathon, not a sprint. We have to pace ourselves. In a marathon, there are points when you feel absoutely broken, but it is in those moments that you dig deeper and pull out your inner strength, rely more on the Savior and become and do more than you ever could have, more than was ever possible.

My relationship with my Savior, my greater understanding of who he really is, the depth of my knowledge and love and adoration of my Savior has just exploded.

I am grateful for Jodi and Troy's talks and being able to sit there and have so much gratitude for all that I have learned, all of the priesthood blessings that have helped me gain strength and understanding. The knowledge that I have been blessed with.

What a beautiful knowledge to be able to answer the questions that I know who I am. I know where I came from. Why I am here and know where I am going when my time on this earth is through. I don't know how I would be coping with my illness if it were not for this eternal knowledge. It grounds me, it helps keep me balanced and helps me to trust my Savior. What a wonderful and priceless blessing that I am so grateful for.

Saturday, August 11, 2012

Birthday Celebrations

Everyone was so wonderful to me. I have been spoiled rotten with people trying to be so good to me. Saturday morning, Suzi took me, Thomas and Hayden to a new breakfast place literally right across the street. We wanted T.C. Eggington's but I just didn't have it in me to venture out that far. It was yummy and nice for a quick outing.

I went home and slept while Thomas and Hayden cleaned the entire house. I mean Hayden cleaned both bathrooms, helped with dishes, cleaned his room, toy room, cleaned all the walls/light switches and picked up the entire house. Thomas said he stayed right with him and cleaned for several hours.

Rosie, Suzi and I went to a late lunch at Brio. It was good. I had never been there before. I loved their bread and seeded crackers. Absolutely delicious. Yummy chicken salad, too. Then, we headed to Frost for some yummy peach gelato.

Julie came over and made me a strawberry fields salad for dinner and we watched P.S. I love you. Lots of fun!

Thomas took Hayden to Cambridge's Back to School Party at Mesquite Groves Water Park. They had a great time. They loved having a guys night out. Hayden enjoyed hanging out with some of his new friends from school. And, he loved every minute playing with his dad.

Yep, I have been pretty spoiled, that is for sure. I appreciate all the love everyone has shown me. It is has been so appreciated!

Friday, August 10, 2012

Seizures Galore

I only worked a couple of hours on Friday before I was completely done. My body had been pushed beyond its limits. I had a ton of events of seizures and passing out all afternoon. Jodi called in the early evening and asked if we could do a kid swap. I laugh as it is always Hayden for Talmage. Jodi took Hayden, Brooklyn, Brigham and friends to see the Lorax.

Talmage, Thomas and I cuddled up on the couch and watched a couple of Disney movies. Man, I sure love my cuddle bug. He makes me smile. I love how much he loves being with Thomas and I. He is easy breezy for us. Thomas loves it because when Talmage is around, I don't try to do anything. I just soak up the time with him and cuddle him..... sheer heavenly moments.

Hayden came home, saw that I was cuddling with Talmage and asked if we could watch a movie and cuddle. I couldn't pass up such a wonderful invitation, so Hayden selected a movie, and, as promised, he cuddled on the couch all during the movie. I may have dozed off some, I may not have remembered the movie, I may have gone in and out of consciousness, but what I do remember and cherish is those precious moments that Hayden wanted to sit on the couch, cuddle and watch a movie. I am sure learning to not be busy and take the time to just stop and be present in the moment. And, oh how I relished in each moment of that evening.

Thursday, August 9, 2012

IEP Meeting-Cambridge Academy

What a week... started out with major testing at Mayo Clinic and ended with an IEP meeting for Hayden at a new school. I was unsure how things were going at his new school. Poor kid, so many challenges and obstacles to deal with right now. As if nothing was going on in our lives, I decided to rip Hayden from his place of stability where everyone loved him and put him in a new school where he has 5 different teachers instead of one. He switches classes. He is in a new environment. There are new rules and new people to meet. Poor boy.

There is no way I would have switched Hayden schools without the overwhelming feeling that Cambridge Academy is where my boy needed to be. So, the three of us took a leap of faith and with more courage than I have ever seen anyone muster, Hayden has attempted making Cambridge his new school. He has done an INCREDIBLE job! I am so proud of him.

I requested a meeting and Cambridge all came together. All of Hayden's teachers were present along with the principal, the special education teacher and special education director. I was nervous... it was my first IEP meeting without people I knew in the room. My heart was pulled to Hayden and I felt terrible for placing him in this new situation.

As I spoke, I could tell the mood in the room lightened. Yes, I definitely want my son to receive all that he can to help him succeed. Yes, I know the law and what schools are required to provide him with. I also want to be and realize that we are all team players. During the meeting, I could see one by one, each other educator in the room begin to relax and realize that if Hayden is happy and learning and growing, that I am happy and will go overboard to help out.

The Spirit was so strong. I was able to express Hayden's needs clearly and accurately. I was able to ask for helps for him and receive more than I even bargained for. Each teacher had already begun to really care for Hayden and all had felt his sweet spirit and his goodness. One teacher summed it up when she said, "There sure is something special about Hayden. I cannot pinpoint it, but I know when I am around him that I want to be better!" Wow, what a phenomenal compliment.

Hayden will receive what he needs... unlimited bathroom breaks, modified homework, verbal testing, modified assignments, extra speech and OT services. What they gave him that I am shocked is that the last hour of the day, Hayden will be with one teacher to four students. Unbelievable. They will review all lessons that day. They will do homework as a group. They will work on the agenda together and review anything he missed. Really? That is an extra 20+ hours a month of semi-individualized help.Fantastic. We also discussed his handwriting issues due to strength... the principal said, No problem... we will get him a laptop. Anything else?

He will still receive everything he had at Liberty Arts plus this extra 20 hours a month, or more.

I feel so blessed. I walked out realizing how much my Father in Heaven is indeed in charge and directing our lives. I was again reminded that if I turn over my life to Him, that He will do far greater things than I could ever imagine. And, oh how much that He loves my boy... I am in awe.

As I walked into my home the song of the hymn, "I Stand All Amazed" flooded my mind an soul.

1. I stand all amazed at the love Jesus offers me,
Confused at the grace that so fully he proffers me.
I tremble to know that for me he was crucified,
That for me, a sinner, he suffered, he bled and died.

Oh, it is wonderful that he should care for me
Enough to die for me!
Oh, it is wonderful, wonderful to me!

2. I marvel that he would descend from his throne divine
To rescue a soul so rebellious and proud as mine,
That he should extend his great love unto such as I,
Sufficient to own, to redeem, and to justify.

3. I think of his hands pierced and bleeding to pay the debt!
Such mercy, such love and devotion can I forget?
No, no, I will praise and adore at the mercy seat,
Until at the glorified throne I kneel at his feet.

Blessed.... Grateful... in Awe.... appreciative......loved.... What a great life!

Wednesday, August 8, 2012

My Birthday

I woke up to a sweet husband and son making me breakfast. Hayden was so excited to give me his card and presents. I was spoiled rotten. A new Sunday dress (the boys did a great job), a jean jacket, 2 new pairs of scrubs (aka my jammies) and beautiful red roses.

I was down flat due to Mayo testing the previous day. Jodi was on Jer duty during the day. We went, got our diet cokes at QT and had a relaxing day sitting on the couch and talking. Jodi ran and picked up take out from Olive Garden, yummy chicken
fettuccine Alfredo with bread sticks and salad. We sat on the reclining couch and ate yummy food and talked and laughed. Talmage entertained us and we had fun just being together. She showered me with a fun "stay at home family night basket" included new games that Thomas, Hayden and I could play and filled with all my favorite treats and a gift card to QT for my Diet Cokes. So thoughtful and fun!

Suzi picked Hayden up from school and sat with me during my afternoon snooze. Her and Hayden ran to Firehouse Subs, grabbed food, another Diet Coke and brought food back for Thomas and I.

Joyce stopped by with beautiful flowers, a cake and cute pink and black scrubs. (I seriously live in the things. So comfy, soft material, plenty of pockets to hold my phone, laser, etc. and yet, presentable for the unexpected guest.) So sweet of her.

Shortly thereafter, Julie came over with presents exploding everywhere. She added new pieces to my Disney village, including a cool Mickey Ear Factory, light posts and cool Mickey Village items. I loved them all!

Suzi stopped back by with a plaque for Hayden with all of his wonderful qualities on it. I need to take a picture. I love it! She added to my Jim Shore Christmas collection which is so fun!

I received phone calls/letters/emails/ texts/Facebook messages and cards from over 100 different people. I was in awe, in shock and in complete disbelief. How did so many people remember? How did so many people care? How did so many people know that I really needed to know I mattered and was loved on this day of mine.

It touched my heart in ways that I cannot express. Thanks. Thank you! I will always remember the incredible love that was shown to me.

Mayo Clinic

Yesterday was spent at Mayo Clinic having tests run, procedures and biopsies. Long day. Lots of pain.
As I drove home with Julie, we talked of the doctors, the new information, the testing, the reality and the hope. My feelings are so mixed up right now. I am praying for hope, for resolution, for treatment options, for understanding, for a course that leads me back to health. I am unsure if that is possible. I am hopeful that it is. I pray that it is. I plead that it is. But, I am so unsure about my health right now that it is a constant struggle.

Of course-testing aggravates the symptoms and causes a lot more pain, passing out, seizures and funky symptoms.

It is nice, comforting to feel like I am with doctors that do understand the pain and unusual symptoms that I am describing. Even a greater feeling when the doctors are able to put into words feelings/pain/symptoms that I have struggled to find adequate words for. I do feel so blessed that I am now with the doctors that I need to be with. Looking back, I am able to see how each doctor, each appointment, each failure, each heartbreak has brought me to where I am today. I am grateful to have come this far. I do have hope.

I certainly am leaning on my Father in Heaven and the priesthood to stay hopeful and at peace with all of these challenges. I certainly hope that I am understanding these blessings and interpreting them correctly. I want to get better. I want to be able to do more, serve more, take care of other more, be a blessing in others lives. I keep telling my Savior that I am not ready to give up the fight or "go home". I want to stay here longer with those I love. I have so much I still want to teach Hayden. So many things I still want to experience and share with Thomas. I want to see my son go on a mission, hear about his first love, experience his wedding, love and snuggle his children and have a daughter in law to cherish and love. I want to grow old with Thomas... I want to sit on front porch chairs and laugh at our lives. Smile at the joy and have a greater understanding of our heartaches and see that they took us to a beautiful place.

When I look at my life from that vantage point, I dig deeper and find more courage, more hope, more strength, more love... more appreciation for life and all of the wonderful blessings that are mine to hold. Hopefully, I will have a lot more time with my family. I'm hoping. I'm praying. I'm believing that I can. I sure hope my Savior and Father in Heaven feel the same way.

Saturday, August 4, 2012

Combined Birthday Party

Stephanie and Rosie threw a combined birthday party for me, Josh and Jake since all of our birthdays are so close together. We had pizza, texas sheet cake, Krispy Kreme donuts, veggies and fruit.... yummy!
Some of the gang sitting around chatting.... Troy, Jodi, Rosie, Jake & Suzi
Talmage kept begging Thomas to go outside and take him swimming.... sucker!
Hayden actually was all grins when he saw that I was actually going to get in the pool with him.
Thomas had so much fun with Talmage. Talmage kept jumping off the side of the pool, the rocks, the table, anywhere and jumping into Thomas' arms.
I love this one with Talmage in mid-air.
Talmage also decided to hit everyone with the huge hammer. He was apprehensive about getting Grandpa. Jodi and I told him to go ahead...grandpa wouldn't mind.
Brigham and Brinley are the bestest of buddies. They had so much fun trying to balance on that boogie board.
Hayden was thrilled that his best buddy Gunter was staying with us and got to come to all the excitement. (Boy did Hayden have a great weekend.... Gunter after school on Friday, watched movies, played Suzi's X-BOX, Amazing Jake's with Suzi on Saturday and home just in time for this party... busy guy).
Kiley did it! She made it to the top of the rope swing.
Gunter and Hayden would attempt jumping from the diving board to the rope swing.
Little Missy... I love when Brooklyn is all smiles.
Of course, Jake and Thomas threw a lot of the kids in the pool. From the looks of this, the kids deserved it. They are both great dads and great uncles. The kids all adore them.
Poor Hayden, he is being tickle tortured even in the pool by Thomas. Hmmm. I am guessing that Hayden somehow egged Thomas' on.
It was a fun night. We love spending time with family. We are lucky to have so many wonderful people live so close to celebrate special occasions.