Thursday, January 31, 2013


There is nothing brings me as much joy as Hayden and my nieces and nephews. These sweet children have been amazing. They love me. They think it is great that I am willing to just sit on the couch and cuddle and listen. Slow down enough to soak up all their love and joy and stories and questions. With that, my relationship with each of these sweeties, has become so much deeper and richer.

I have discovered that no matter what the trial or challenge, there are always great points about where I am at. One of the greatest joys now.... My relationships with all the cute kids in my life!

This particular day, Jodi had to take Brigham some where.... Not sure. She told Brooklyn that she would pay her to watch me and Talmage. I was exhausted and knew getting off the couch was not going to be an option. I sat down on the couch, Talmage cuddled in and Brooklyn put on a movie. Before it started, both Talmage and I were asleep.

I awoke and moved from my spot to get my heart meds. Talmage fell down in my spot. When I, came to sit back down, since the two kids were on the couch, I sat in the chair. Within moments, Brooklyn was sitting next to me talking and cuddling. Talmage opened his eyes and saw Brooklyn and I on the chair, half asleep he crawled down and climbed on my lap and fell peacefully back to sleep.

So grateful that all these cute kiddos can see beyond my illness and just love me for who I am. No expectations. They just love that I cuddle. I love this role. I do love the life that I am currently living.

New doctor.....New Hope

I went to Dr. Shiflet a couple of days ago. I explained the new doctor's theory and plans for diagnosis. He listened intently as to why the new speculation on what has happened, why and testing required to figure this out. He told me that if it was indeed blood clots like was suspected, he had a treatment to try. He used cold laser treatments on my lungs. He said that if it is indeed blood clotting issues, that this would break up the existing clots in my lungs and I would breathe without such a struggle for a couple of days until my body produces more blood clots. Miraculously, I have not had such an easy time taking a breath in a very long time. It feels amazing!

A sweet friend took me to the cardiac electrophysiologist on Tuesday. The doctor decided to hook me up for 30 days to a live heart monitor that is being monitored continuously. We laughed as the first time the machine went off, we were only two miles from the doctors office and wondered if we should go back. Day 2 and so far so good. The alarm has gone off a couple of times requesting that I put in current symptoms. Keeping our fingers crossed that whatever this is, we are on a road to figuring it out. Three years is a long time.

A different friend came over yesterday and I was catching her up on January events. This month has felt like a lifetime of its own. I was expressing that as I endure this trial, my needs change. The desires of my heart have changed, as well. Three years ago, I prayed for complete healing. Since the first stroke, I wished for no more seizures and passing out but could live with limited movement and everlasting effects of the stroke. Now, almost eighteen months after the first stroke, living through a numerous number of seizures, passing out, heart stopping, additional strokes and so much more, what I consider true NEEDS, has significantly changed.

My list of what I pray for has changed significantly. I now just wish to be able to take breaths each and every day without struggling to fill my lungs with oxygen. I pray that I will be able to keep my long-term memory and that the seizures will stop. I pray that I can stay on this earth as long as I am a benefit to my family and loved ones. I really want to see Hayden serve a mission.

It is just good that life is only given to us one day at a time. As I look back, I would have never of dreamed I could walk this path. But a day at a time, only taking today's required activities into account, it is much more manageable.

Craziest truth... I am really learning to differentiate between needs and wants. The distinction between true desires of the heart and all the extras that I thought I needed in life.

I've been given so much. Each step of the path has not been easy. At times I have walked a slow pace, other moments were ones of struggling to just cling to Inch forward. At times, people have taken my hand and pulled me to the next step and more times than countable, my Savior has gently lifted me and carried me down the path.

But, regardless of how it was done, The Lord, my Savior, has provided a way for me to keep moving. I am more grateful today for each breath that comes easy, than almost 40 years of living with the health to do all things needed and wanted. Breaths are the symbol of life. Those struggled for are the most rewarding ones.

So for today, I will delight in each breath that comes with ease. I will be grateful for each breath that requires effort beyond my own. Because, regardless of how I get oxygen into my body, I know it is my Savior that grants me each new day, each breath of air and each moment of this wonderful gift we call life. And life really is sweet!

Monday, January 28, 2013

Family home evening

Tonight was Hayden's first night at planning, teaching and conducting family home evening. I smiled as he called on himself to say the prayer. He prayed. He told us our lesson was on sin and not committing any. He then walked over and picked up the scriptures. He opened them. Told us to follow along. He opened to Alma 37:30.

Hayden began reading. Alma was talking to his son, Helaman. Alma was counseling Helaman to avoid sin. To withstand temptations. Alma then went on to explain to Helaman the things he should do: pray, read scriptures and to not lose sight because of the easiness of the way to heaven.

I asked Hayden how he did such a great job locating scriptures on obtaining from sin without any help. He said, "but I did have help". He said, "I just opened the scriptures and this is what I turned to."

I smiled as I relayed to Hayden that the Holy Ghost helped him to find the right scriptures. I also relayed to him that I sometimes receive answers that way. I pray for an answer and just let the scriptures fall open and read until I get an answer.

Hayden said, "No. I just wanted to watch Psych. So I figured that since Psych always chases the bad guys it would be the perfect activity to go with the lesson." I replied to Hayden that the Holy Ghost still helped you to find the scripture to go with sin. He said, "Hmmmm. I guess your right. He helped me even though I was just trying to watch Psych. I guess he wants me to learn in any way I can. Even if it wasn't for the right reason."

What a kid. All in all. He did a great job. Boy this kid cracks me up and keeps me on my toes. Even if it wasn't the way it was supposed to, Hayden did learn a lesson. He learned that the Holy Ghost will guide him. If Hayden is ever searching for answers, he will be led to them.

And yes, we ended the evening with an episode of Psych.

Friday, January 25, 2013


Life is funny thing.

Somedays you are up and feel like the clouds are within reach. The next, it feels like the literal bowels of hell have risen together to pull you down to its far reaching depths. No wonder life has been compared to roller coasters, ferris wheels, merry-go-rounds, and every other type of crazy ride and adventure.

Some days seem to fly by with the speed of light. Others drag slowly on, time ticking by so slowly.

Which ever road we walk. Whether on a speeding bullet hanging on trying to catch a deep breath or  feeling that time has stopped to quit ticking, life hands us our own unique set of trials and challenges to face. 

I have spent most of my life wishing time would slow down, trying to race faster and faster to do more, accomplish my lists, go at a faster speed and feeling like I needed to do it all. Lately, my life is the complete opposite. Most days the only thing I accomplish is that I was sucessfully able to keep breathing.

We all face challenges. Hardships. Overwhelming trials. Obstacles that require more strength than we feel we can muster.

Beng sick has provided me with an unique opportunity this past year. I have been blessed to have so many friends come into my home. We sit. We talk. My friends take a moment out of their busy lives to visit with me. As we sit and talk, we share stories. We talk of the unique set of challenges and opportunities that we have been given. We laugh at the funny moments, find joy in conquering the obstacles, shed tears when struggling to find answers and are humbled by the gifts and blessings of our Savior.

I am so grateful for each friend that gives up a portion of their busy day to just sit with me.  It is a break from the monotony of my days. Such a special treat for me to have friends come share their lives with me.

As each friend has spent time talking with me on the couch, there is one common thread, regardless of individual circumstances. Everyone is really trying to do their best in life. Trying to love others, serve, provide for the needs of their families and loved ones whether financially, emotionally, physically or spiritually. These people are good. Their hearts are in the right place. Each one trying to do what is right.

The other common thread that is shared amongst most of those that walk through my doors, is that they do not think they are doing enough, loving enough, serving enough, giving enough and living up to what they should be doing. That breaks my heart. These are incredibly kind and amazing people. They are giving their all each and every day. They are doing their best. They make mistakes, as every one of us does, but their hearts are in the right place.

My wish for you, my dear friends and loved ones, be more gentle with yourselves. Treat yourself as kind as you are to your friends. Give yourselves the benefit of the doubt. Know that although your plans don't always turn out the way you intended, you tried. At times, we all fall short of our goals. We all think we should do more, be better, try harder.

The crazy thing is.... we are doing enough. Each of my dear friends that have called, dropped by, sent notes, prayed for me and shared the gift of the remarkable you, there is one thing I want you to know.

You ARE Enough. You Do Enough. You are simply AMAZING! In my eyes. And more importantly, in the Savior's eyes.

Thank you for sharing a part of your busy lives with me. You bring so much joy to my world. You lift my spirits. You give me hope. You help me find the courage to keep fighting for life. You help me to feel my Savior and His undying love for each of us.

Thank you for imparting to me one of the most precious gifts we have been given in this life...time.

Monday, January 21, 2013

ASU game

Friday afternoon I received a call asking if Hayden and Thomas would be interested in four free tickets to the ASU/U of A basketball game in the 15th row on Saturday afternoon. When I asked Hayden, he responded, "uummm, yeah, are you kidding me? I would LOVE to go!!!" I was taken back by his response and excitement about the game. Jackson was with Hayden and telling me how much he loved basketball and I did remember hat he was on the schools's basketball team, didn't I? I laughed and told him of course he could go.

As Hayden was relaying the message to Thomas that there were four tickets to the game, he said, "Dad, the only question is, which of my friends do I give the fourth ticket to?" I laughed and laughed as I watched the excitement grow in anticipation of the game. They had to wear their ASU shirts. (They wanted to call and bug Uncle Troy and AuntnJodi about going to the game. I told them bad idea. I was pretty confident U of A might beat ASU.)

That night, after much deliberation and negotiation between Thomas and the boys and they decided that Joseph was the best fourth person to go to the game. Good call on Thomas' part. He was the perfect one to to cause any problems. (Doing all we can to encourage Hayden to love Scouts. Most the boys are a year older. Good call on choosing Joseph. Hayden is excited to see him at scouts this week.)

The boys loved the game. They loved having tickets to the suites for food. The boys were in heaven and loved every single minute of it. I heard stories all weekend about the fun of the game. What a special treat! First college basketball game and they were spoiled with all the upgrades. It was so fun for Thomas to get to experience that with Hayden and his friends. They laughed. They joked around. They talked loud. They were having so much fun.

We really are spoiled rotten by some wonderful family and friends that not only take care of our needs but also helps to have a lot of fun adventures. Thank you. Thank you. It was definitely a memory that will not be forgotten by Hayden or Thomas. I am especially grateful. I loved hearing their excitement and laughter and loud voices of everyone talking over the other to tell me about all of their adventures. It touches my heart so much! Grateful. Very very grateful!

Saturday, January 19, 2013

Health Update

Today was a big appointment. Again I found myself walking into a strange doctor's office. No familiar sights, smells or sounds. As I sat in the waiting room amongst strangers, I was so grateful that Thomas had the day off and could go with me. I always get apprehensive meeting new doctors. How do I sum up my store in the 2 to 3 minutes that they want me to? How do I pick my top three symptoms?

I breathed a sigh of relief when a cute seventy year old man starting talking to me. He asked what a youngin' like me was doing at a cardiac electrophysiologist office. I gave him the three minute version of the past 20 months of my life. With encouragement he told me that Dr. Shah was the best. She was gentle, kind and out of the box thinker. Relief poured into my soul. I began to relax as this sweet man reassured me that she would work with me until she figured it out.

When the nurse called my name, Thomas gave my hand a squeeze and reassured me it was going to be ok. He was with me and he was positive this doctor was going to bring answers.

Dr. Shah was extremely nice and didn't rush me through my explanations but asked more questions. She actually looked at the three pages of notes that I had brought in to her details medications, what they were for, prescribed by which doctor and ifmimthought they were working or not. Followed by current diagnosis', ongoing evaluations and expected diagnosis and a list of current symptoms. The last page was a detailed timeline of the past almost two years with dates and tests ran.

The amazing thing is. She read them. She took her notes on my papers. She circled items and asked questions about things. She determined which tests to run, outlined our next steps going forward, her concerns, her gut feelings, and before she left added, "is there anything else I should know? Any illnesses? Random facts? Anything that comes to mind right now, please share." I was in awe. No other doctor has asked me that. I threw in the fact that in eighth grade my immune system shut down requiring heart shockers and that I had had a dozen miscarriages. Bingo. Those were two important pieces of information she needed. She added those to her lists and proceeded with several other questions which changed some other testing to be run. She smiled at me and thanked me. Wow! I was so happy. She assured me she would get right on the tests and be there wit me for a couple of them and would really research to figure this out.

Proceeding forward we are scheduling the following tests: Echocardiogram, Heart Stress Test, 24 hour Holter monitor followed by a 30 day Holter monitor, Ct Scan of my lungs and others such as Tilt Table Test and labs. The Stress Test will require admittance to the hospital. With struggling to walk and talk at the same time due to struggling for oxygen, they do not want me killing over in the doctors office. Dr. Shah is concerned enough that she said she will stand beside me to make sure I am safe and have necessary medical treatments standing by....just in case. What a sweet doctor.

I have been thru this enough times to realize that their first inclinations are not always correct. However, I felt so "at peace" as she spoke that I think she may be headed in the right direction. She believes that my body is throwing all kinds of clots into my lungs, daily, causing it to make it very difficult for me to catch my breath. The miscarriages are a huge indicator of a blood clotting disorder. Along with all the numerous cases of pneumonia that I have had. According to her, most of my symptoms could be caused by blood clots. The stroke, TIA's, seizures, heart issues, breathing struggles, exhaustion issues, coma type sleep and so many others. I guess everything requires oxygen to work.

I know the road ahead is a long one. I know that the testing is just the first step up another tall mountain. I have learned that these roads curve, turn, take detours, have long climbs with no views of the top. I've learned that the path first, those first few steps, seem like a cake walk that can be done forever. But, I have incredible people by my side, a doctor that is gentle and kind, family and friends that love me and my Savior that walks with me until I can no longer climb myself and He then carries me.

As much as testing requires some unpleasantries, I am so looking forward to having someone on my side that really wants to help me get my life back. And I am thankful for a cute little seventy year old man that helped me to get excited for this new doctor that I really think is going to help search for answers for me. Not only was Thomas with me today, I know my Savior was near...helping the doctor to ask the right questions, helping me to know which symptoms and events to bring up, and guiding me with ordered and clear thoughts and explanations. I have hope. And that, is the best feeling of all. 2013 is really looking like it will be a great year!

Money Multiplies

One huge factor that Jodi and I did not take into account when we started this quest of raising money, was that when we started this fight, we partnered with our Savior.

My Savior has been at my side each and every day since this trial began. He has blessed me, comforted me, brought me peace, helped me find answers, helped me to hold on, loved me, worked miracles of all kinds, sent cherished tender mercies, taught me so many lessons and has spared my life.

As Jodi started her quest raising money through Cupcakes for a Cure, she did so with help from our Savior. As I have struggled to breathe, He has sustained my life. We have both asked for His help while trying to find a way to walk the path that has been placed in front of us.

Why I didn't see it at the time, I don't know. As I was reading my scriptures, my studies were brought back to 1 Nephi 3:7. "And it came to pass that I, Nephi, said unto my father: I will go and do the things which the Lord hath commanded, for I know that the Lord giveth no commandments unto the children of men, save he shall prepare a way for them that they may accomplish the thing which he commandeth them."

As Jodi and I talked about Cupcakes for a Cure and were overwhelmed by the sheer number of dozens of cupcakes that would need to be made in order to meet our goals, we left out the entirely biggest piece of the equation. We had partnered with the Savior.

When we partner with the Savior, we are promised if we bring our all to the table and give our time, talents and energy that The Lord will take our effort and gifts, magnify them and create something grand. We are required to give our all but when that falls short, He makes up the difference.

In the past couple of weeks, the outpouring of love, the extreme generosity of so many people and the number of cupcake orders has been astounding.

We are so much farther ahead than we ever dreamed of. Instead of looking too far up the road at what still needs to be raised, the health challenges that still must be faced and the ongoing struggle and battles that must be fought, we are looking at today. We are seeing that The Lord, our most gracious Savior is helping us. He is magnifying our efforts and preparing a way for us to do what he hath commanded.

It is a miracle unfolding right before our eyes. I am grateful for my Savior, His love for me, the many hearts He has touched so that we receive the financial and emotional support we need.

My love and appreciation is beyond words for my Savior, my husband, my son, my sister, my loving family and friends. With the Savior as a partner in finding a cure, I know we are on the right path. In Him, I am placing all of my faith and trust. I know that one way or another, He will help guide me to treatments, cures and the means in which to get there. What a beautiful gift to believe in Him and that He believes in me.

Thursday, January 17, 2013

Cupcakes for a Cure

Cupcakes for a Cure was the brilliant idea of my amazing sister.

Thomas had dropped me off at Jodi's so I wouldn't be alone towards the beginning of January. The new medication I was put on required 24/7 care for two weeks. While there, Jodi told me she had been feeling that she needed to do something to help us raise money to meet our huge deductible at the start of this new year. Her and Troy had been talking and thought she should sell her amazing cupcakes to help us out. Tears poured from my eyes. The love I felt was tremendous. The timing impeccable. It was only then that I leveled with Jodi regarding my last doctor appointment.

Sobbing, I thanked Jodi for her idea. Then immediately said a prayer of gratitude to my Savior. Almost a week before this, I had been to a new doctor. He spent a long time going over all of the details of my tests and treatments as well as talking to me about a game plan moving forward. He said because of our huge deductible and mounting pile of past medical bills that most of the doctors had put us on a cash payment in advance plan. The bottom line of this, unless we raised quite a bit of money and quickly, my life was in danger. In danger of time running out before we could meet our deductibles and get the life saving treatments that I needed.

Jodi too cried and asked why I had kept this to myself without telling anyone. How was I supposed to say this to those I dearly love? Because of the lack of money, my life was seriously in jeopardy? It would tear my husband apart and I knew my family would just feel the burden of trying to help us out and cover the costs. I had almost conceded that it was time to just let go and give up this next to impossible fight for life. I had been pleading with my Father in Heaven to know His will. I had been asking if it was my time to go and I just wasn't listening. I have received so any blessings, so many promises and time and time again been reassured by my Savior. He continued to tell me to keep up the fight, try my hardest to continue to breathe and He would help me find a way.

For one of the first times during this trial, I really doubted. Not that my Father in Heaven couldn't do it but the burden it would create on too many of those I loved would be too much and I wasn't sure it was worth it. That I was worth it.

My sweet sister pulled me in for a hug and told me that we would figure it out and I was worth the time, money and sheer volume of support that this would require. She made me promise to keep clinging to life and to leave the fundraising to her. We sat down and crunched numbers. At $20 per dozen, after subtracting out the costs, we were hoping to make a little more than half on each dozen. Our first key goal was to get to $5300. At that point a percentage of our insurance would at least kick in and doctors may be willing to work a little more with us. I could at least get my medications and receive some testing at that point and then figure out how to pay for any required treatments. As we started crunching numbers, the absolute volume of cupcakes required to sell would be enormous. We were talking over 500 dozen.

Jodi quickly revised our goal and said that we didn't have to do this overnight. We only had to come up with money by the days treatment was required. And with a loving sister standing by my side, I again decided that I would continue to try to keep breathing, and stay alive. I had fought too hard to get where I am at I wasn't going to go down without a fight.

From there, the events that have happened are inspiring and amazing. What we did not count on or factor into the equation is that we didn't just have the two of us on this fight for life but we had partnered with the Savior. What we lack, He makes up the difference each and every time. Miracles happen when He is involved.

Cupcakes for a Cure has now been in business for a couple of weeks and the incredible support of so many has been amazing.

Going forward, Thursdays are cupcake making day. We are hoping to get someone over to Jodi's house each Thursday to help her crank out cupcakes. Cupcakes will be ready for pick up at either mine or Jodi's house after 5:00pm.

The options are a dozen Almond Joy cupcakes (pictured above) or Oreo or half and half. If you would like to do a big order on a different day, please contact Jodi and she will work with you.

I have been receiving so many requests on how people can help and help is appreciated in any form. Cupcake purchases, volunteering to help Jodi bake the cupcakes, donating cupcake supplies, garage sale item donations, monetary donations (there is a paypal button on the right side of this page. Make sure to use the friends/family option if choosing this option) and Prayers. Lots and lots of prayers.

My heart is beyond full. We are absolutely overwhelmed by the extreme generosity, goodness, support and love by so many. Our hearts are filled with appreciation, gratitude and love to all of our family, friends, ward members and complete strangers that have come together to help me in my fight for life. We no longer feel alone, but feel the strength and love of a countless number of people. Thank you. Thank you for all the generosity and love you have shown to me and my family. Our hearts are forever changed.

Wednesday, January 16, 2013

Garage Sale Miracle

I have tried hard to write this post, but as I do, the tears flow so hard.

At the beginning of January, Jodi was going to have a garage sale and called to see if we wanted her to sell anything for us. We went thru and through and tried finding items that may help bring in some money to pay for our deductible and medical treatments I needed. We pulled out our patio set, treadmill, ping pong table and anything else that might bring in money.

Before the garage sale we had found out that all treatments were stalled until we could pay cash up front. Another post coming but we had no idea where or how to,get the money.

Ann was amazing and helped Jodi to run the garage sale. The two of them together sold most of our items. Jodi even sold their old car. While there, Hayden, Brooklyn and Brigham all sold candy and cupcakes to raise money for my medical treatments. Later, Jodi brought me over the money and it was more than our stuff brought in. She told me that we needed it more than I did. I cried and was so appreciative.

Later that day, Jodi's young men's president in her ward asked if the young men could do a service project and collect unwanted items and donations for our garage sale the following weekend. When she called to tell me, I again cried. Here is someone that doesn't know me, I am not in his ward, and has no obligation to me, yet he was trying to figure a way to help us out. I was beyond touched.

On Tuesday evening, after the young men dropped off the donations at Jodi's house, she called me in tears, stating that I would not believe all the incredible donations that came in and the sheer generosity and goodness of people. She picked me up on Wednesday and brought me over to her house to see all the donations; table and chairs, clothes galore, decorations, household goods, baby items, toys and all kinds of items. Jodi's garage was no longer clean but filled with generous donations. Tears welled up in my eyes at the sheer goodness of people.

An email was hen sent out to my ward asking for any items that people no longer wanted and we will pick it up. The donations again came pouring in.... A carload of baby items, tv's, 10 cars eats, crib, and boxes and boxes of clothes, shoes and incredible decorations. Again tears of gratitude and generous donations. And sheer awe of our friends generosity.

Friday came and it was the coldest weekend in Arizona for like 20 years. Still Jodi and Ann held the garage sale on Friday. More donations came in. We even received some very special donations from a couple of my dear friends that were dear to their hearts. (One lost a son a couple of years back to cancer and donated his most precious items. The other lost a brother and dropped off some of his items.). My awe and goodness for people continued. Many friends of mine and Jodi's gave huge monetary donations, as well. Jodi and I both were in awe of how great people are. How generous and loving others are.

Saturday morning came and with absolutely freezing temperatures, again Jodi and Ann, along with Julie, Thomas, Hayden, Brooklyn and Brigham held another garage sale. Even with freezing temperatures, people came and supported our sale.

My love, adoration and appreciation for so many people. I am in awe of the kindness and love that has been shown to our family. People really are good. And have huge hearts.

We will be holding another garage sale in February. If anyone has any items they no longer need, we will be happy to pick them up. Our gratitude is immense. Our thankfulness is beyond words. We definitely are surrounded by the most amazing family and friends ever.

Monday, January 14, 2013


Sitting on the couch, I hear a faint little knock at the door. Thomas answers it and little Rex darts to the couch. He blurts out, "I love you, Aunt Jer". Awe. Melt. My. Heart.

Rex learned how to say Aunt Jer and wanted to come see me. Now, never mind that the next word out of his mouth was, want cookie please, but he said my name. That compounded with a huge hug was the sweetest part of my day. I love this little guy so much.

Sunday, January 13, 2013

Priesthood Preview

Is Hayden really old enough to be attending Priesthood Preview? Hayden was so excited to go with his dad to learn more about the Aaronic Priesthood.

Earlier that morning at church, Hayden had a new Sunday School teacher. Two men, Brother Hamblin and Brother Phillips. The men were so great and told the boys how important it was that they were in church each Sunday. Theses two great teachers told the boys that their lessons were going to be amazing. Because it was so important to them that they attended Sunday school each Sunday, that they gave the children their phone numbers and told them if their families could not come, they would arrange a ride for them to come if they couldn't get there. Hayden was in awe at how these teachers really cared about each of them. That they showed interest in them and their spiritual growth. I think it's going to be a great year of learning for Hayden.

When Hayden received the program for the meeting, he was elated that the quote on the top of the program was a quote by him. "I will do anything for Savior and the Priesthood" by Hayden Murphy. He sat up front with the other 11 year old boys. He answered questions, he participated and even offered a beautiful closing prayer.

He came home so excited about the priesthood. Excited for this next year at church. Excited to learn.

I am so grateful for incredible church leaders that are making such a wonderful impact on Hayden's life and helping him to learn, grow and become a better follower of our Savior.

Wednesday, January 9, 2013

Legos! Legos! Legos!

In case I have not mentioned it enough on this blog... My boy absoutely LOVES Legos.

I laugh as I spoke to someone with a son that is just trying to navigate her way through the newly diagnosed Autism/ADHD/Sensory Processing Disorder world. As she told me that her son ONLY wanted and carried around a Spiderman stuffed doll, I laughed. Oh how the memories came flooding back to my mind.

As soon as Hayden was able to speak, he knew what he wanted and what he liked. From before the age of one until two and a half years old, it was Bear in the Big Blue House on Playhouse Disney. Anytime he saw Bear, Ojo, Pip, Pop, or all of the Bear in the Big Blue House characters. Then, all of a sudden, almost overnight, he switched to Elmo. I felt like we were living in "Elmo's World". I sang the song to Hayden more times a day than I could count, and would even sing it as "Hayden's World"... La la la la.  After Elmo it was all things Toy Story but especially Buzz Lightyear. I think Buzz is in every family picture there is for that couple of years. Spiderman was the next to hit the scene. He ate drank and slept for the Spidey superhero. We potty trained him stating that all the superheros came together to boycott being pee'd on. If Hayden went in his spidey unders...well, all things Spiderman disappeared for the day. Since Spiderman, he ventured out into all super heroes. Iron Man, Hulk, Captain America, and the list goes on... he loved them all and was never caught without at least two different ones in his hands and pockets.

His latest obsession or fascination is with legos. He absolutely loves legos. He builds them incredibly fast, then takes them apart and tries to find a cooler way to utilize the legos in each box. He loves taking them apart and finding better ways to accomplish the same task.

With Hayden's love for all things legos, he requested for everyone to give him legos, for both his birthday and Christmas. With both his birthday and Christmas being only two weeks apart, he received an incredible number of gift cards to Walmart and Target. He had been itching to take his gift cards and purchase more legos since before Christmas. Not wanting him to pick out ones that were already being gifted to him, we made him wait. After Christmas, we told him that he needed to again wait until the new lego sets, he was dying for, came in.

After waiting for over a month, on Mommy day, Hayden called Grandma Julie to see if she would quickly run us to Target or Walmart so he could spend the money on his gift cards. She quickly agreed, headed over and took Hayden and I to Target.

While in Target, Hayden was playing with the Skylanders for a moment, while a worker went on a hunt for the new lego sets. Hayden sat one of the figures (in the Wii box) on the Skylanders portal. It was supposed to bring him into the game....instead the alarm system went off. About six Target employees came running over. Not one of them knew how to shut the security system off. The noise was horrific, it was loud and Hayden about died of embarassment. I was done with walking and quickly fading. But, Target didn't have any lego sets, so my disappointed boy was feeling defeated that he couldn't spend his gift cards and pretty upset about the alarm system that was still blaring. It was still going off, even as we left through the doors and into the parking lot. Oops...

I couldn't stand Hayden's face. He had waited for this day for over a month and no luck with his purchases. I put my arm around him and told him if he could conquer Walmart in less than ten minutes, I could probably make it.

Walmart was a HUGE success! They not only had every lego set he was dying to purchase and build, but they also had some incredible sales on some of the lego sets he wanted. Keeping to his promise, he headed straight to the lego aisle, picked up the lego sets he wanted and was headed to the check out within five minutes.

Miraculously, I held in there with him. I know...less than 25 minutes in two stores and I was completely and utterly worn out. Even so, I was able to give my sweet son exactly what he needed. (Thanks, Grandma Julie for being a lifesaver and take us running around for a half an hour).

I made Hayden pose for a quick picture. I really wanted to remember this day forever.

I wanted Hayden to remember that no matter how sick I was, no matter how horrible I felt, no matter how little energy that I have, that he is number one in my book and I will always do what is best for him. We did it! We had a great day, even if I came home from Walmart and completely crashed out for the next several hours. We did it! We had the perfect mommy and Hayden day. It really did almost feel like the perfect day!

I am looking forward to a lifetime of more memories with this sweet boy. But, for the moment, I will relish in any good days we have. And, today, yep, it was DEFINITELY one of the sweetest memories of all.

Seeing the sheer joy and happiness on this boy's face... not that is Priceless!

Mommy Meltdown

After almost three weeks having Hayden home from school with me was wonderful! I was dreading school starting back up again. I couldn't bear the thought of him leaving me and being gone the majority of every day. I loved lazy mornings with him and cuddling on the couch while watching Psych or playing Flow on the Ipad. I treasured each and every minute he was home.

I missed Hayden like crazy....especially when given horribly bad news by my doctor. By Tuesday night, I was almost inconsolable. I had a huge mommy meltdown. I really let the news from the doctors go to a place in my head and my heart, that in the past several years, I have not allowed myself to go. All of a sudden, I was overwhelmed by the "what ifs" and the "high probabilities" I was being told. It wasn't so much a matter of lacking faith, but one of completely not being able to feel much of anything.....and I lost it.

I let Hayden sleep in our bed on Tuesday night, wanting to be the "creme filling", as Hayden refers to it. I needed my two strong guys on each side of me to protect me, comfort me and shield me from all the terrible thoughts racing in my head. I told Thomas that the thought of sending Hayden back to school the next morning was almost more than I could handle.  The tears flowed freely as Thomas held me in his arms until my body collapsed with exhaustion.

Wednesday morning, I awoke to Hayden in pajamas telling me that his Dad was giving me and him a play day. He could have a ditch day from school, stay home and take care of mom, and watch movies all day so long as he would cuddle with his mom. He was so excited to help his dad make me breakfast, get the couch all set up for a movie day, lay out the treats and pick out our viewing agenda for the day. I guess I didn't realize how much that Hayden was feeling the same way as I was. He was needing me, ever bit as much as I was needing more time with him.

It worked. As I got out of bed, I thanked my Father in Heaven for fulfilling my needs. I thanked Him that He was really listening to my heart and knew how badly I needed to be with someone, but especially Hayden.

We laughed, we talked, we watched movies, we ate treats, we talked more, he told me everything that had been bothering him (including me getting sicker) and we were able to talk through all of his fears, as well as some of my own. It was magical, it was perfect, it was just what the doctor ordered.

No medicines (although since I have learned that the new seizure meds were making me absolutely crazy), no doctor, no amount of treatments could have healed my soul in the way that just being with my dear son did that day. I went to bed feeling renewed, feeling at peace and again trusting that this is in my Father in Heaven's hands. He has pulled me through on numerous occasions and although this journey has days where it feels like it is forever, I am also given the tender mercy of having near perfect days with those I love. After all, relationships are the only thing that we can take with us when this life is over. I want to make sure that I have incredible ones to hold on to.

Me and this boy...we are doing a lot better after a day of pj's and ice cream. So thankful he was willing to take a day to just spend with me. It is a day that is etched deep into my memory. I will remember the sweet feelings, the comfort, the talks and the sweet spirit that was felt forever.

Have I mentioned how very much I love this boy?

Monday, January 7, 2013

BoY TiMe or WrEstLiNG CraZiNeSS

I love these guys of mine. I love that I can sit on the couch and still be apart of their fun. Their "bOy WoRLd"! If there is ever more than two boys at a time in our home, the scene always turns to one of cRaZiNeSS, NoiSe, and WReStLinG. There is something about boys and how much NoiSe they can make. I wouldn't trade one CrAZy minute of it. I am so glad whenever I get a chance to see into their world. BoYs! NoiSY, nOiSy, cRaZy, LouD, GiGGlinG, meSSy, GooFY, SiLLy, LoVeaBle and All Mine!

Friday, January 4, 2013

My sister - deductibles

My sister is amazing. She called and told me that she had been thinking about our new year of medical bills, our new deductibles to be met and new costs that we must bear.

We are so, so, so grateful we have insurance. It is actually pretty good insurance, but it does not pay out even a dime until we have met our deductible for the year which is $5,000. Problem is... we do not have $5,000. We are headed on year three of extreme medical bills and deductibles.

I am on payment plans to every doctor/hospital in the valley. We are paying what we can but spend thousands a month is just meeting our monthly minimum obligations. The thought of coming up with another $5,000 BEFORE I can be treated is terrifying. That is great if I have to go to a hospital or ER, they take you and then figure out payments. But, Mayo Clinic? Treatments? Medications? Regular doctor office visits? Nope, no way, no payment plans, no seeing the doctor and then figuring it out... it is payment in advance or sorry, we cannot help you.

I need to make an appointment to see a cardiac electrophysiologist as a pacemaker looks like the only way to stop the high/low heart runs. Without it, it is slowly tearing apart my heart. It is taking a real toll on the old ticker and causing it to want to fail.

I also need to see the neurologist. We need to once and for all get these seizures under control. They are coming back and I am scared I am going to start back into more grand mal seizures.

But, what do you do when there is no money to pay to get in? Most of these doctors, although wonderful, will not see me until I have paid.

So, my sweet and amazing sister decided to take on some fundraising projects to help us come up with our $5,000 for our 2013 deductibles. She was so sweet and said that it won't take care of our already established medical bills, but it may buy us the time to get help right now with these doctors.

How in the world can she pull off helping to raise money? She is a gourmet cupcake maker. She is making and selling her out of this world, amazing cupcakes to raise money for me to go to the doctors. She also held and is holding another garage sale for me. She found all types of stuff and sold what she was planning on selling, collected all of our extras, and sent out emails for others to drop stuff off. She is organizing, pricing, selling and collecting donations for me. For me. She is killing herself making cupcakes, so that I can get the medical treatments that I so desperately need. She is sacrificing her time and her money by holding garage sales and bake sales for me. Ones that I cannot even help out because I was too sick to even get off the couch.

My complete and undying love for her cannot be expressed. This sacrifice. This gift of self. Gift of love and acts of kindness and charity are beyond words. My heart is so full of gratitude, love and thanks. I am so blessed to have her for a sister.

And, with Jodi on the mission to raise the money, I absolutely know we can do it. She is amazing. She will recruit whomever is needed and will figure out how to get the money needed. She is rallying in the troops and looking for volunteers to help in all types of ways. If you can, please join her. My undying love and gratitude to all those who are so selflessly giving of their time and talents to help me.... there are no words for my thanks and love.

Thursday, January 3, 2013

New Doctor

As Thomas headed back to work, I headed for a new doctor. I have been praying to figure out who to switch my primary care doctor to. I needed a good one, one that is willing to put in the time and effort into helping me sort through all these specialists, tests, medications and symptoms.

Wednesday morning proved to be hopeful. The doctor was scheduled to go over events and symptoms with me for 30 minutes. Over an hour later, he was still talking to me and still trying to figure things out.

He explained things to me so clearly, so that I could really understand what is happening to my body. I feel like most doctors have hid the truth from me or at least covered some of it up. This doctor laid it out....I have a dead spot in my brain. It has taken out the autonomic nervous system and endocrine system and hypothalamus. bummer. Because of this, it is causing my brain waves to swing like epilepsy, but they are not electrical currents from my brain, but from my heart.

This means extremes.... seizures, arrythmia of the heart, passing out, high and low heart runs and all kinds of other problems. He started me on a medication to try to minimize some of these symptoms.

I walked out of the appointment feeling like this doctor is a good man. He is a servant of God and he tried to listen to the Spirit and follow the guidance of our Father in Heaven. I felt so good about what he gave me.

I started the new medication and the side effects are kicking my bootie. Sick, sick, sick.... anxiety is making me crazy .... nausea and vomitting has returned. I can hardly move out of the bathroom and walking has become an even bigger obstacle. I keep thinking that I have got to try to move past the side effects. As soon as that is over, hopefully, I will be on my way to finding some relief.

In the meantime, I cannot move. I am stuck on the couch or in my bed or bathroom. I hope the side effects dissapate soon. I don't know how many more days I can handle this harshness of symptoms. I am pleading for relief.

I do feel this doctor will help, even if medication adjustments are required. I am also off to two new specialists for second opionions on heart and brain. I am praying they can help.

We are prayerful and hopeful that 2013 will bring relief, new healing and new positive outlook for our futures.

Back to work or away from work

Thomas headed back to work on January 2nd. It was a sad day for Hayden and I. Thomas has never had so much time off over Christmas. Neither have I. Even though I was down for most of the vacation, we sure had fun and enjoyed being together. I loved that Thomas was at home, even if in the other room, cleaning or organizing or hanging in the garage, he was close. He was right there if I needed him for anything.

Hayden loved that his dad would drop what he was doing to take a few minutes to see Hayden's latest creation, or stop to help him out with a video game he was stuck on, or help him figure out where the next lego part went. He also convinced his dad to take him and some friends to go see The Hobbit at the movie theater.

Thomas also got so many projects accomplished around the house. Me being down for over two years has really taken a toll on the deep cleaning of our house. Yes, the house is clean, floors mopped, bathrooms scrubbed, dishes done and beds made. I am talking about the closets that had taken over and the drawers that needed much cleaning out, not to mention our three car garage that we could barely fit one car into.

Thomas took room by room...starting with the art and game closet, sorted, cleaned out, sent a lot to a garage sale pile and tossed even more. He moved on to Hayden's closet, re-organized it, setting it up for all the new toys that Hayden had received for his birthday and Christmas. Organized all his lego kits into containers and downsized his books and toys. The toy room was next and I think Thomas was able to get rid of 75% of the closet. Toys galore were either scrapped, donated, held for the garage sale or put into organized containers. Food storage was rotated and expired stuff discarded.

Most of all, I was thrilled when he tackled both of our pantries. The food pantries, thanks to so many loving people, has been organized on/off over the past couple of years while the appliance pantry has taken on a world of its own. The door could hardly be shut and appliances were crawling out of the space. Thomas spent an entire day sorting, purging, taping with garage sale stickers and de-cluttering. It was amazing when we had several empty shelves now that he has touched his magic. He continued and went through each drawer, cabinent and space in the kitchen until everything was neat and tidy again.

I absolutely LOVE it!

He then tackled the garage.Organized the bikes, pumped up flat tires, put water in the storage containers and spified the place up. Sweeping and cleaning it all up nice and neat.

I am so thankful for a wonderful husband who took his two weeks off to take care of our house and put it back together in a way that is so neat and organized. I love that he loved me enough to know that it was driving me crazy that I could not do anything about it. I loved that he taught Hayden how to work, how to help and encouraged him along the way. He helped Hayden to do hard things and overcome his fears of some of the tasks.

All of this while still checking on me, meeting my needs, cooking breakfast, lunch and dinner and finding time to play legos, play the wii, rub my feet, watch movies with me and make me and Hayden feel like we were the two most important people in his world.

Thomas is definitely the best decision I made in life. He is my trusted, hard-working, loving, caring, thoughtful, fun and amazing husband and I am so lucky he is mine. Hayden definitely has the best role model in the world to look up to. Thank you, Thomas for giving me the best gifts... the gift of you, your talents, your time, your thoughtfulness, your hard work and your love. I am more in love with you today than ever and more in awe of your tenderheartedness than I ever have been. You get better with each and every passing day. Hayden and I feel so blessed that you are ours. We love you...always!

Wednesday, January 2, 2013

2013 Is Officially Here

New Years Day was spent relaxing and having a good time. Thomas and Hayden played electronic Battleship. Played on the Wii. They built lego sets. They had a lot of fun boy time. I relaxed and soaked in the last day of having all of us home together before Thomas headed back to work. I loved listening to them talk, laugh and play together. Hayden is so lucky to have such a great father that is willing to just stop and play with him. It brought back great memories for me of my dad building tinker toys with us and cooking homemade donuts in the kitchen. I am thankful that Hayden will have great childhood memories. Most of all, I hope he knows how much he is loved.

Great day! Great memories! Relaxing and rejuvenating.
Here's to a wonderful and exciting 2013. We hope you are a great year. We have high expectations from you and are hopeful for many more miracles in our lives this year. We are ready. We welcome you 2013!