My valentine!

Love this guy so much!  

He melts my heart today more than ever! 

He is my rock. My strength. My best friend. The absolute love of my life. 

I can honestly say that each and every day that his sole existence is to make mine and Hayden's lives better. He serves us, he does for us, he works hard for us at home and work, he loves our Savior and tries to best the best father, son, friend, disciple and husband always. 

I am so very lucky he is fine for time and all eternity. It is my greatest treasure and blessing. 

I love you, Thomas! Thank you for loving me and make my world a beautiful and wonderful place. 

School spirit week

So I was a major fail of a mom for school spirit week. 

Day 1: favorite character. I had Hayden wear a psych thirst. First time ever he was sent to principal for uniform violation. 

Day 2: cardiologist. Kept him home afterwards. 

Day 3: 80's rock day. Hmmm - mint green thirst, sunglasses and jeans rolled up. 

Day 4: sports day. Diamondbacks jersey was so small he had to wear a tshirt underneath and leave his shirt unbuttoned. 

Day 5: extreme school spirit day. Seriously I had him wear his P.E. uniform. 

Look at that smile on his face...... Even if he probably lacked the most school spirit. 

Proof Hayden: when you think you have to do it all......a lot of things really don't matter. You do the best you can and move on. See that smile on your face. That is what is important to me. 

My boys

They are mine and I love them!

Guitar

My boy started guitar lessons. 

I kept telling him when I felt better, when I went back to work, when things calmed down, he could play. 

How grateful am I that my Savior sends people that make it where we didn't have to wait. 

Aunt Suzi took Hayden and signed him up for lessons. Her gift. Her treat. 

Grandma Julie lovingly let him use her guitar to learn and offered to help him practice. 

Words cannot express my love for the selfless acts of kindness and charity that has been extended to our family. 

Hayden is over the moon excited about lessons. He loves he guitar. He loves the music. He loves this opportunity. 

Look at that smile. One of true joy and true excitement. And I love hearing him practice. 

Hang in there, Hayden. Keep trying. Keep practicing. Give it your all. You will be blessed.  Valiant efforts pay off. Consistency is critical. Determination profound. This IS something you can do. Always remember son: I believe in you!

Love

Nothing like a best friend that never lets you down. 

There is nothing like someone loving you unconditionally and without any pretense and expectations. 

The security and comfort of a constant listening ear... Priceless. 

My heart is warmed each time I think of Max and the blessing he is for Hayden and our family. Our dear Savior knew how much Max would be needed during these transitions in our lives. He knew Hayden would need a buddy and confidant during so much change and uncertainty and craziness. 

We didn't have any idea that our world would turn upside down like it has. But our Savior did. He gave Hayden the greatest blessing of a friend. 

When I hold Max, I feel hope and love and peace. I know that although our lives feel crazy and scary and uncertain and out of control that our Savior is in charge. He will bring us safely through. Although the winds thrash, the storm rages, and all we can do is hold on and pray for calmer seas, we know our Savior is with us. He knew the storm was brewing. He knew the rocky waves and stormy winds and rain were getting ready to hit fiercely. He sent a blessing first. He sent Hayden someone to hold onto when the rocking boat and winds and rains feel like the storm will never end. He sent Max before the storm. 

And I know! I firmly believe! Our dear Savior will carry me, Thomas and Hayden through this storm and out safely on the other side. I see his hands, I feel his power and know that although the storm rages, he calms us. 

I love the quote: Sometimes God calms the storm and sometimes he lets the storm rage and he calms his child. 

Right now, in gentle and tender and loving ways, my Savior is calming me. He is calming Thomas and he is calming Hayden. When I look at this picture, I am comforted and reassured. 

Although I can't see past the storm right in front of me, He can. My Savior continues to guide us, help us, bless us and comfort us. I know he is working miracles in our lives that we cannot yet see or understand. But I trust him. Just as Max trusts us and loves us unconditionally. I will follow me trust my Savior. 

And each and every day and night I will thank him for sending my boy a best friend in Max to help calm him and comfort him. I am so very, very grateful. 

Press pass

Hayden has an internship! 

Hayden is an official reporter for the Scottsdale Chronicle newspaper. He has an internship at Scottsdale Community College and is an official reporter with his very own press pass. 

To say he is excited doesn't do justice for how he feels. 

Grandma Julie helped Hayden to achieve this coveted position. He will review attractions, events, products, activities and write up reviews for the paper. He will attend events and write about them so that students with children will be able to find fun family events to attend. 

Of course, if Julie is involved, she does it all top notch. Hayden and Max have official press passes. She has pulled all kinds of strings and has opened unbelievable doors for Hayden. 

Hayden's interviews begin this week. He gets to go to The 13th Floor haunted house and interview the actors. Then they will show him some of the tricks and set ups with the lights on. He will interview with a photographer and write up his thoughts, observations and stories. Then he will be able to experience the attraction just like everyone else. To say he is excited is an understatement. 

Julie has pulled off some other great events for Hayden. She got Hayden and Thomas into the Arizona State Fair. He will be attending events from the press box. They are planning on seeing some circus performers, ice carvers and most important, they will have reserved tickets and back stage passes to Trace Adkins. I secretly think Thomas is more excited than Hayden. Although Hayden is really looking forward to it. They are even hoping to interview people there. 

The other HUGE event scheduled.....tickets in the press box to the ASU-U of A football game. Hayden will sit with the press as they broadcast live. He also gets all you can eat food/drinks. With pre game interviews with whichever players he wants. 

He is excited about the game but most excited to see ASU beat U of A so he can but his Aunt Jodi. 

I cannot express my gratitude and appreciation for this in Hayden's life. It is a bright shiny spot in our otherwise dark skies. I am so glad he can focus on the good and exciting opportunities that lie ahead. 

He is becoming a great writer. He has the love of writing, just like his momma. I love it. I love watching him love and embrace such a great talent. Makes a momma's heart happy. 

Suzi - Hayden -Max

What do we so when the mom is sick and can either be on the couch or in bed? 

Torture the Hayden, that's what! 

Suzi pinned Hayden down, rubbed ham on Hayden's face and laughed while Max licked it off. 

Two years confined to the house....yes. Somedays we are hard up for entertainment. 

My boy

Max hates bedtime more than Hyden does. We have to separate Max from Hayden when the bubba is trying to go to sleep. Max doesn't leave him alone. 

I watched from my bed the other night as Max grabbed a toy and was taking it to Hayden. I told him no and he took his toy and laid on top of Hayden. As soon as he thought I wasn't looking, he got up and went to Hayden's face. He started with kisses and when that didn't work, he dropped his toy on Hayden's head. After giving Hayden a wet willy with his tongue, Hayden jumped and started swatting and telling Max to go away. Max jumped out of the way and waited for Hayden to roll over and go back to sleep. Still wanting to play, he dropped the toy on Hayden again and this time licked his face. Hayden shooed him away. Max let out a huge sigh as he kept looking back and forth between his toy and Hayden laying there still and sound asleep. Max picked up his toy, gently laid it across Hayden'a arm and with his head down, walked away. 

I lost it. I laughed so hard. Max is really a little kid. He just wants to play. He loves his boy and takes every opportunity to try and get him to play with him. 

I cannot express how good Max has been for Hayden. He loves him. We refer to Hayden as "your boy" when talking to Max. So much so that when we say Hayden he tilts his head as if confused. Max and his boy are the best of friends and I am so thankful that Max was brought into our lives! Life is so good. 

Max -always the opportunist

Max is a foodie! He absolutely is in love with food and will do anything to get it. He charms me, he gives Hayden kisses and he obeys for Thomas. Regardless, those big eyes get us every time. He always lays his head on my arm and literally bats his eyes until I give him a bite. 

I laughed the other morning when Max jumped on the back of the couch to get closer to Thomas' plate. Then, as if to make sure Thomas saw him, he put his paw on Thomas' arm. 

Of course, when Thomas moved places, Max jumped to follow. 

One day last week, Joyce brought us homemade brownies. She walked in and set them on the family room wall and then went in my bedroom to check on me. Hayden left the bedroom to go get something, and we hear Hayden scream, Mmmaaaaaxxxxx!!!  Thomas runs and I about fly out of bed. Hayden found Max up on the wall devouring chocolate brownies. Hayden was panicked that Max would die. That little stinker had jumped onto the chair and then the wall. Luckily, he didn't get sick. 

He can jump/climb on anything. Last week he spent hours trying to figure out how to open the door to the backyard. As little as he is, all six pounds of him, is determined as can be. He jumped and then would run and try to jump again. He can reach the door handle but can't get it. 

He has turned our world upside down. We are totally and completely in love with Max. He is rotten. 

Tonight, when Thomas go up for a minute, Max climbed out from under the blanket and jumped on top of Thomas' pillows. He is the Prince! He likes to be comfy. He completes our family. 

My Savior

One thing that I have been blessed with a lot of during this trial, is the ability to have priesthood blessings administered to me whenever I need them. The strength, guidance, support, protection, comfort, understanding, warmth, and love they have brought are without words of expression. 

So for the blessing I received today to impact me in a way different than any before, is remarkable. 

As decisions will be made today and doctors reconvene to work on my care, I am so grateful to really understand and know that my Savior is in charge. That he is directing my care, where the doctors look and it will be him that guides them to the answers and solutions to heal my body. 

As Thomas goes back to work today, and I am lovingly juggled from friend to friend and loved one to loved one, Thomas wanted extra protection by means of the arms of the Savior, wrapped around me today. 

As Thomas lovingly laid his hands on my head, the power of the priesthood radiated through my body. When those loving words were spoken, Thomas was transformed before me from my husband to a true servant and messenger of our Savior. I felt the power of the Holy Ghost, the love of my Savior and the comfort of my Father in Heaven encompass my heart and soul. 

The words that were spoken were beautiful. Eloquent. 

In those moments, I came to a more clearly defined understanding of the atonement of our Savior, Jesus Christ. 

If I were the ONLY one to benefit from the selfless act of the atonement, the Savior would have sacrificed and gone thru all he suffered, just for me. 

The feelings that came were not the understanding from an intellectual realization, for I have long understood the importance and necessity and impact of the atonement. It was different. My Savior spoke directly to my heart. He assured me that in those moments while kneeling inGethsemanee, when blood seeped from his pores, when his pain became so much that even he wanted the Father to remove this cup that lay before him, that he suffered this for me. 

He didn't just suffer for our sins and our wrongs and to undo the chains of justice. 

He suffered on a much more personal basis for me. He felt what I am feeling. He felt the sting of those questioning whether I am really ill. He felt the daily struggle to try to gasp to feel my lungs with life sustaining breath. He felt the pains that come thrashing through my legs when blood does not flow and life feels to be fleeting from them. He suffered to understand the loneliness of being shut in, enclosed, and unable to leave the house for two years. He bore the excruciating pain when no earthly medicines or relief come and I quietly try to just continue to breathe. He has felt the loneliness. The heartache. The confusion. The grief of mourning each day my son grows older without a mom to cheer him on at his events. The longing to stand and serve my family. 

He knows every feeling. Every emotions. Every heartache. Every triumph. Every joy. Every tender moment. 

He knows me. 

And for moments, when he lovingly knelt inGethsemanee, he did it ONLY for me. As blood dropped from his brow, and sweat and tears of agony feel from his face, in that moment, he felt everything that I am feeling and experiencing. It was all for me. 

I am humbled that the dear Savior let me feel this and experience this beautiful blessing this morning. 

As I felt the Savior wrap his loving arms around me. I knew that he knew me even better than I know Hayden. I knew that there was nothing that I could not trust him with. I knew that my heart and mind and entire soul is an open book to him. And even with that, and all my flaws and shortcomings, he loves me. 

He loves me. 

He loves me. 

I do not think three more powerful words exist in this beautiful language we have. I know that no emotion or experience has made more of an impact. 

To have the deep understanding that my dear and precious Savior knows me, walks with me, carries me, lifts me, protects me, guides me, comforts me and loves me, is the truest most beautiful blessing that can be given to my heart. 

His atonement, love and open arms are extended to all. He suffered individually for each of us, just as he did me. He stands. Open arms. My choice. Your choice. Each of us have the ability to come to the Savior and be wrapped in his loving arms or protection and safety. 

He stands waiting. The choice is for each of us to make. 

I am so grateful to find comfort, rest, relief, protection and love in his tender care. 

It is the very dearest and most cherished possession I have. My Savior knows me and loves me. 

The Savior knew how very much I needed him this morning. Yet, in his loving ways, he gives me 100 fold over and over more than I need and gives me even more than I knew was possible. 

He does this because he loves me. And I am safe knowing I am his. 

Prayers Please!

In a couple of hours, I will go through another round of IVIG treatments and experimental procedures to try and get my brain to restart and function as I should. Last year, when I attempted these treatments, we could not finish due to the extreme difficulties and reactions I had to the medications. Including, but not limited to, meningitis, encephalitis, blood clots, pneumonia, small coma and many more. 

From that point I continued to digress to the point I am today, with a short reprieve in the springtime. 

As I start these treatments tomorrow, I am in awe of the overwhelming gift of peace that the Savior grants me. He has calmed my heart and soul. He carries me and comforts me. I know deep down that I will be okay. 

I know the road over the course of the next days, weeks and even longer may be filled with sickness and illness but I will eventually regain my health. 

I am so grateful for priesthood blessings that allow me to know the Savior's will for me. As I made choices tonight, I was assured that the Savior was wrapping me in the arms of his love and protecting me and cherishing me. He knows me and he knows my pain. He knows my heartache. He knows what I am capable of.  He knows the truest desires of my heart. He cradles me in his love and helps me to see things from his perspective and beyond that which I can understand without his help. Most of all he loves me. 

My Savior loves me, just as I love Hayden. But his love is perfect and pure. I am his. And that, makes all the difference. 

So as I wake up, Jodi comes early and picks me up and we drive to Mayo hospital, I will find solace and comfort in my Savior's love and peace. The words he spoke to Joseph Smith to ease his pains when he no longer knew what to do, ring clear in my heart tonight as I seek his love and guidance. 

"My peace I give unto you." 

I feel his peace. His love. His gentle and loving arms enfold me. I am safe because I am his. 

More testing

I spent Wednesday, September 4th at Mayo Clinic repeating all of the ARS, Autonomic Response Systems and Sympathetic and Parasympathetic testing. 

Oh how I do not look forward to these tests. Especially the tilt table test portion. But, it is a way to find out answers, so I willingly underwent being hooked up, poked, burned and prodded at. This is the third time I have had this exact series of tests. So I knew what I was in for and a little bit of about what to expect. However, this was definitely the most difficult time I had enduring and completing the tests. 

Basically, they put your body thru a string of tests that should all stimulate the autonomic system. They test all of your automatic responses that you cannot control but occur automatically within your body such as; sweating, breathing, heart rate, blood pressure and whether or not your body passes out due to not being able to control the variables. During the breathing part, I was not able to follow nor hold my breathing and I required a lot of breaks. When the tilt table portion began, I felt like my skull would explode. I get the same feelings right before I pass out or have seizures occur. I had to have help up and out due to being so sick and wobbly. 

I am not sure of results yet, but am still dealing with the stresses and side effects of the testing. My poor body hurts to move, even the slightest jarring and I want to cry out in pain. With all of my nerves being stimulated, they are highly sensitive today. The pain is deeper and almost more than I can bear. Tears flow much easier and more frequently as the normal pain with this disease substantially multiplies and creates almost unbearable and constant pain. I sleep frequently but in short increments due to the pain awaking me. 

All of the autonomic processes that are effected by this disease are exaggerated and more intensified. Needless to say, it has been an extremely long week. 

I have not yet received the official results which will determine the game plan to trying to take back my health. However, one of the neurologists at Mayo Clinic met with Thomas and I, while I was there. (Thank heavens that Thomas' boss is amazing and he can get off at a moment's notice when needed.) I have had a lot of "rough" discussions with doctors about the reality of my disease and circumstances. For some reason, this doctor seemed to have said things in a way that I understood the grimness of my situation. 

The doctor walked in, asked questions and then proceeded into explanations. She said that my diagnosis had not changed, but had been long enough that they can officially diagnose me. I absolutely have Autonomic Orthostatic Hypotension Neuropathy. And, I am in Autonomic Failure. I was down graded or upgraded to a worse form of the disease. It is listed as a rare disease that takes a great length of time to diagnose and rule out other possible diseases and complications. 

During our discussion, she was real and did not sugar coat anything. She gave me the cold hard facts about what I am dealing with and the terrible odds of surviving or thriving with this disease. 

She said, to quote her, "This disease is hell. It is rough, it is debilitating. It is almost impossible to survive. There is no chance of beating it or having it go away. The odds of even controlling the disease to which some form of a normal life is possible, is less than 5%. In Arizona, there isn't even a slim chance at beating this." She reiterated those points over and over. 

She added that although she admired my determination, that is is killing me. I am doing too much. And my body is suffering each time I try to force it to comply. I am living with a new set of circumstances and need to grip what that now entails. 

She said she admired my trying to go for a short walk or do small exercises but my body cannot handle them. My goal. Is in the next month to be able to go sixty seconds. Yes seconds. Or 1 minute on the small ground pedal unit without passing out or bringing on excruciating presyncopal symptoms. Then I will begin to lift one pound weights. One pound. As I heard that, for some reason, those were some of the points that made me understand the severity of my situation. 

I was given a list of do's and don'ts to strictly follow. 

Do NOT:

Stand or walk outside of going to the restroom. 

Stand for 2 hours after eating. 

Go outside for any reason, except doctors, until it is below 90 degrees. 

Exercise. 

Sit with my feet on the ground with my head being sustained by me. 

Stand. 

Do: 

Eat six meals a day and stay seated for two hours after each meal. 

Stay indoors with the ac on and blinds closed. 

Get a small pedal machine and work up to one minute without passing out. One minute. 

Wear compression stockings 24/7

Intake as much salt as possible. 

Drink pedialyte. 

Sleep more often. 

My body does not have enough blood/oxygen. It cannot keep it in my head due to this disease. The sensors in my neck are malfunctioning. Blood is pulling in my legs. Because of this, with blood and oxygen deficiencies in my head, multiple side effects are occurring. Vision loss, neuropathy in feet and hands, excruciating head pain and pressure, seizures, passing out, living in a pre-syncope phase, digestion effected, organs shutting down to require less blood to areas, etc. etc. 

Needless to say, although I really really like the doctor herself, it was a hard conversation to take place. I felt the reality of the situation ahead of me. There was over an hour worth of discussions. 

I left not knowing what to do. Sure. I will follow her guidance and suggestions. But the deep down what do we do feelings? Has not subsided. I am anxious for the head doctor to call this week. I am ready to hear about the tests, procedures, opportunities and any positive glimpse to grasp onto. 

Diagnosis looks grim. My future not what I had planned. I am trying to be positive and feeling gratitude that I am alive. Even if confined to my home. 

I believe the best thing that came out of this conversation and appointment is how I feel about me. It is very hard to not beat myself up. Ask if I really am giving my all. Is there anything else I could be doing. I have questioned myself so much. So to hear that I was over doing it, in its own way, helped. The doctor reassured me that autonomic system is just that. It is autonomic. I do not have one ounce of control over it. I am doing all I can. That is why I am still alive. So I have taken a deep breathe and have decided to be easier on me. I know I am giving this my all. I know that if I was told to stand on my head all day, every day, and I could get better, I would immediately stand on my head. Oh how I long for some sense of normalcy back. 

I am so grateful for those that have loved me, supported me, cherished me and encouraged me. It has been a long road. I am so appreciative of all the support and love. 

Somehow. Someway. I know that our dear Savior will point me to the path that will let me have the best life I can. I do love all the tender mercies that are poured down upon me each and every day. It  makes all the difference in the world knowing he walks with me. He comforts me when I am down. He strengthens and teaches me daily. And when I can no longer bear the physical demands and excruciating pain my body is in, I call on my Savior. He picks me up and carries me to my place where I can again function, think, and bear the burdens placed on my back.  What a loving friend, comforter and Savior to care about me, Jerlyn. He walks with me. This I know. I have felt his presence. I have felt when the strength is no longer mine but his. I have felt him wrap his loving arms around me and reassure me that I am not alone. I may be weak but he is strong. I love him and I know he loves me. 

Prayers are appreciated. They are needed. I will keep updates coming as we are in a daily regimine to fight this illness. Please know of my gratitude for the support offered to me and my family. It is times like these when I am in awe at those that care and love and serve. I definitely get to benefit from all the goodness in people. I have been surrounded. Buoyed up. And loved by so many. Words do not justify my gratitude and love. Thank you. Thank you. Thank you for walking this journey with me and sacrificing for me. It means so much. 

Disney Planes

I actually made it out of the house for a couple of hours on Labor Day. We went early in the morning to the movies to see Disney's Planes. I loved the movie and the message. I loved the theme of being yourself and staying true to who you are. I think this is one of my favorite Disney movies because of the storyline. 

There was a part in the movie that hit me really hard. I could relate and felt that Disney did a great job developing the feeling behind the scenes. If you haven't seen the movie and do not want it spoiled, quit reading. 

Dusty Crophopper is the underdog. The bigger and more competitive plane has sabotaged him and he almost died. He keeps going and survives, against all odds. His plane is completely broken and in disrepair. He is hopeless. As it looks like all options point to not only this race but his future being over and pretty dim. 

Just when he thinks all is lost, one by one, the other planes come to him, bring them their spare parts and do what they can to help them. As each plane comes up, offering him their gifts, it is obvious how Dusty has touched each of their lives. He is selfless and in return has dramatically impacted each of their lives. 

Dusty is humbled. Grateful. Amazed. In awe. And completely in shock that others would do this for him. 

At that moment in the movie, it was hard for me to fight back tears. I related to Dusty and the emotions  the movie portrayed and even deeper ones that could not been shown or expressed but only felt. 

I find myself in Dusty's position in life. Tired, worn out, no will left to fight, beat down and exhausted. I am questioning if the race is worth it. The road ahead seems impossible. With my broken down body and spirits, is the road ahead even worth it. 

As I saw Dusty on the screen, I saw the difference he was making. I experienced a change of heart. I, too, have felt the joy and inexpressible gratitude that comes from person after person showering me with gifts of love and service. As some dropped off things I stood in need of, they told stories of how I helped them in life. How I was a light in the darkness or a strength in their time of need. The words, the kindness, selfless acts of service helped me to pick up the pieces. 

As I struggle, again debating if I can will myself up, I found strength in a Disney character, Dusty. 

Everybody loves the story of the underdog. 

I feel,like the underdog. But if Dusty can do it. So can I! So can I! 

72 Hour Kits

Thomas spent all of last weekend putting our 72 hour kits together. 

We had purchased new rolling duffle bags quite a while ago but they sat in a box with all of our other items, just waiting to be assembled. 

Thomas pulled out all the clothes that were too small, put in new updated food and organized at all. 

Thomas even put a backpack together for Max. 

Everything is organized. A rolling duffel bag for each of us. A backpack for Max. A backpack full of winter clothes in case it is cold. A bag of extra supplies. An extra bag of food. And an extra backpack of water. Now to put the finishing touches of paperwork together and consecrated oil and they are ready. 

He even pulled all of our camping equipment together. He put all of Hayden's scouting supplies together so it would be easy to grab and get to. 

I cannot express the peace of mind that I have now that this is all done. I am so grateful for Thomas being willing to follow the prophet and doing what we have been commanded. 

I find myself going in and looking at the kits. Thomas has so much to do. He works hard. But he spent his "extra" time doing something that he knew would bring me peace. Doing something that would help our family keep one more commandment. And be the dad that teaches Hayden the importance of following the prophet always, even when we don't understand. Even when we do not see an immediate need. Even when it seems like other things would be more valuable. Even when there are so many things fighting for our time and attention. 

It feels so good to have another thing checked off of our list. And we definitely could use the blessings that come when we follow the prophet and keep the commandments. 

Tackle

I can't remember what Hayden and Jackson said to Thomas. But Thomas laughed and tackled them both. He pinned them both and Max. Max immediately jumps in and tries to "rescue" Hayden. 

I love that Hayden's hero is his dad. I love that Hayden's friends all love playing with Thomas. Thomas is a great dad and so fun with all the kids. Hayden is lucky. So am I.