Saturday, April 30, 2016

Most helpful

What is a girl to do when life just keeps going down hill? Pray, plead for help and ask friends to support you.

Yesterday, as I was unsure how to move forward, I tried to find solutions to my dilemmas that were plaguing my mind.

All of a sudden, the walls began to cave in, and Sherri Dove, my neighbor's mind came to mind. I texted to see if I could come over and didn't hear back. I remembered her saying to drop by anytime. So, for the first time in years, I went somewhere without an appointment.

Sherri was excited to see me. Genuinely happy that I was there.

We sat and talked for a long time. We talked of miracles. We talked of how to get the activity rate at church higher. We talked of prayer. We talked of being an answer to someone's prayer. We talked of showing kindness and love in the littlest ways.

Sherri asked me what some of my greatest kindnesses have been during this ordeal. I told her that of course, I appreciated the meals, the flowers, the gifts brought over, the yummy deserts and other grand gestures. But the ones that really made all the difference in the world were the small texts that came when I struggled the most.

I gave examples to explain my heart...

I told of yesterday, while sitting in the orthopedic surgeon's office that I received a text from one of my beloved mission companions. It simply said, "Jerlyn, are you okay? I am so worried about you." I responded that no, I was not okay. I had been told I needed surgery yet with my illness, surgery was not an option. And I told her that I would call her later. She responded. "I love you. I am here for you." My heart melted. My tears watered. In that small moment, I was broken and scared and all alone. I felt abandoned by all. Then, as quickly as those feelings came, they were replaced with those of love and appreciation for my dear friend. I was reminded that not only was she aware of me, my needs and my struggles, but so was my Savior. He was reminding me that he stood next to me, he sent someone to my aid and he would walk this new journey with me. Tears continued but for different reasons. I was not alone. My Savior was aware of my needs and sent an earthly friend to show his presence in my life.

Another was a few weeks back. Again, I was at a doctor's office and received horrible news. I was told to get dressed and meet the doctor in another room. I was scared and alone. I was frightened. I prayed for an answer. My phone immediately received a text from my visiting teacher. "Hi! I made you a loaf of homemade bread this morning. When can I drop it by?" Again, I was comforted knowing that I was not alone. My Savior again prompted those around me to come to my aid and comfort me.

There was another day that Hayden was gone, I was alone and I was so frightened. I was questioning if this disease was worth fighting. Ultimately, I would lose, so why not now. I was so overwhelmed with grief and uncertainty. Then a text came. "Jerlyn, I just want you to know how much I look up to you. I am going through my own set of challenges right now and am struggling to hold on. I watch you as you face really hard challenges that are meant to take your life. Yet you keep fighting. You love the Savior. You trust him. You give your all and just keep going. I want you to know that because you are continuing to fight, so will I. Thank you for your example of trusting our Savior and never giving up."  Tears fell as I realized that in this dear soul reaching out, they gave me and answer to my own struggles. Simply to keep trying.

The list goes on and on of how those have come to my aid with a text or simple phone call. The little texts offer as much power as the huge gestures, especially when combined with the message from my Savior that he is aware of my needs. The simple, "I thought of you this morning and wanted to let you know that I care" or "I just want you to know that I pray for you every day. I wish I could do more to help." Or, "I found myself thinking of you this morning and all the ways you have touched my life."

It took someone a few seconds or only a minute to type those text messages. It didn't require them to cook or clean or provide some huge, over the top, gesture. Simply a message reassuring me that I do not walk alone. That my Savior is aware of me and my needs. And that I am not alone. That I do have people around me that still care about me.

Those messages and countless others that I have received have made all the difference. They have given me hope. They have given me the courage to keep fight. They have re-issued my strength and have revived my will to fight. They have reminded me that my Savior is aware of my needs. And that he loves me. He sends others here to my aid to reassure me of his love and the love of those around me. What a priceless gift.

 In my opinion, it is the heartfelt and little gestures that have the most bang for the buck. They carry the message that my Savior lives, loves me and is aware of my needs. To me, that is the greatest gift anyone can give me.

Friday, April 29, 2016

Simonton gang

Simonton cousins have tons of fun together. We love getting together once a month.We love that our children our friends. We love the smiles and laughter and jokes and antics that get played when they are together. I love the silliness. I love the fun. I love the games. I love the huge plans that they make. I love everything about the friendship that these sweet cousins share. Each hold a precious place in my heart. And I know that Hayden loves and adores each precious one.


Crazy pups

Each morning, these crazy dogs, yawn and stretch and attack Thomas before he leaves for work. They try sitting on him so he will stay home. They try pulling the cuteness cards. They bark at him and try to talk and tell him not to go. They try to get him distracted by what he is doing. They pull out all of their tricks and all of their cuteness and all their love to try to get him to stay.

When he eventually leaves, they climb under the covers and mope for at least an hour.

I love these cute puppies and the ultimate joy that they bring to our lives. They are our precious and exactly the little boost I needed to make it through each and every day. They need me and are relient on me and I oh so need them to pull me through the day in and day out.

We are a perfect little family, puppies and all, we love one another and are grateful for the gift of these two little baby puppies in our lives.

Priesthood Blessing

Tonight, the depression and heartache continued. I was struggling with all of the heartache that I buried deep inside.

The blessing offered many ways of hope and encouragement.

Most of all, it assured me that my Savior knew my insecurities, my heartaches and the deep emotions I let no one see...and even try to hide from him.

He told me I was enough and he loved me.

 Those words spoke to my broken and tired soul. What beautiful words that were uttered. Simply.... I AM ENOUGH! I matter. I am worthy. I am scared and hurt and miserable. But in my dear Savior's eyes, I am enough.

I am grateful for the insight that is given is the most precious blessings.

Then, words that are most heart breaking that you do not want to hear, but need to be said. There are many who will talk bad of you. Many who will still walk away. That will continue to make your life more miserable. There are those that seek to destroy you.

Every day that you walk on this earth will be a trial. Each and every day will require you to push to greater depths and hold on. Each day will require all of your strength, all of your will power and a fight to thwart the fiery darts of the adversary.

My job is simply to fight! And fight I will. Because my marriage is worth it. My sweet husband is worth it. My beloved and cherished son that I love and adore is worth it. My little puppies that have brought so much joy and love into my life are worth it. I have many family and friends and supporters that love me. And, my Savior has blessed me so very much. He deserves that I do not quit his plan but continue to give my all, day in and day out.

I may not be able to do much, but I can give my all each and every day. And when the fiery darts become too much or the disappointments of life become too real. I just need to remember the precious words that were spoken... I AM ENOUGH! I matter. My Savior and Redeemer love me.

Sunday, April 24, 2016

Lost and alone

This is a blog post that I have struggled with. I so badly want to show the bad times, along with the good, but also do no want to sound negative or hurt anyone. Here goes my attempt to explain to Hayden and my posterity the truth of life and how to survive the moments you feel completely lost and alone, as inevitably, all will pass down this road. Not one of us is free from the low times that bring us to our knees and have us questioning all we know and love. We rarely speak of those lows, as we feel we should be stronger or more in control. Here goes my raw and unedited emotions.

Lately, my world has felt very lonely. The situation has not necessarily changed but how I am coping definitely has.

l have struggled so very much. I have felt completely alone and abandoned by those around me.All except my sweet son and beloved husband.

As it has felt like every single friendship has let me down and/or betrayed me, I have had the desire to begin to shut each one out of my life. Why? Because the effort to keep struggling friendships around, is simply too painful.

The downward spiral started several weeks ago. One little thing after the next. Each one on its own, probably not significant to even mention because, hello, I am not perfect and I make tons of mistakes.

However, the stakes began getting higher and I found myself consulting more and more with Thomas and my beloved Savior over these events and how to cope.

Little things that really tore at my soul began to happen. Things that I hoped were an oversight and not an intentional hurtful act.

Then came a point that I could no longer see all these little events as trivial or insignificant but they started making a significant impact on my life. What was really worrisome was how they weren't coming from one particular person, but from most every person in my life that I was close to. Oh did my little heart hurt. Not only did my physical pain try and test me to the last nerve, but now, I was losing all I loved and held dear in the process, except for my husband and son. I was completely broken. I knelt down and asked how much more I could endure. And why, since I was suffering so much in the physical areas of my life, couldn't he soften hearts, including mine, and help ease the emotional torment I was experiencing.

The answer apparently was NO. Instead, I heard the scripture in D&C spoken to our beloved prophet, Joseph Smith. "All these things shall give thee experience...thou is not yet as Job.." and there the verse of scripture was modified to fit my needs..."Jerlyn, thy friends may abandon you. But unlike Job, you have the love and support of your husband and son. They will not forsake you. And I will not leave you comfortless. I will love and comfort you."

I am not sure if the answer helped or confused me more. My loving Savior knew exactly what is going on. He knew exactly what was happening, not only to my body to the heavy arsenal attack that was being placed on my soul. Yet, easing of my pain did not come. I was told not only was this happening but it would continue. I needed to understand that few would continue to stand by me.

I sought further knowledge, understanding and peace through prayer and scripture study. I slept with headphones on as I listened to general conference talks and church hymns, as I was trying to force out the pain and loneliness. While I was studying, I could sometimes escape momentary heartache but it quickly returned.

I just wondered how I was not enough. I realized that I couldn't help on a physical level. I realized that my needs were greater than others but I also felt like the life I had lived prior to my illness counted for something. I had put lots of service and love into bank accounts and prayed that was enough. Only to know that since my illness had lasted so long that the good I did prior to this illness was null and void. And it no longer counted.

I so struggled. I cried and cried and cried. I didn't sleep. I couldn't get out of bed. I hit a depression so hard and deep. I wasn't sure that I could go on living. I wasn't convinced that it was even the smart thing to do. I thought of all that Thomas and Hayden were missing out on because of me. I was at a low of lows.

I reached out for a hand to lift me.... no one came. I pleaded each day for someone to come knock on that door and hug me and tell me I was enough. It was silent. Completely silent.

The phone calls ceased. Those that did come around were different. The calls that came, I felt like were out of obligation and duty, not friendship.

What was i supposed to do? How was I supposed to carry on? How can I possibly do this alone? I need help.

Then the dreaded phone call came....my results are getting worse. Even more aggressive treatment than thought was needed to combat the latest round of invaders. Chemo infusions were necessary. I had been asking without directly asking for help over the past week or two, feeling deep inside me that something was coming and I needed to prepare emotionally for the battle and physically line up help.

One by one, I got the standard....if you can't find anyone else or my life is so crazy or I just don't know how I can squeeze it in.....I cannot possibly do one more thing....Well, when you get your schedule, if I am not doing anything else those days, then I am happy to help yet I help so many others already... my schedule is already pretty full helping so many....and the excuses and responses went on.

Okay, message loud and clear..... no help is coming.

I kept asking and cried to another friend. The response was... well I guess I could drop you and Hayden off in the mornings, I could pick you up after work or someone else could get you and bring you home. Anger set off. Really! My only solution was my fourteen year old son. How had my life come to this? How is it possible that I am going through chemo and no one is coming to my aid?

So how in the world was I supposed to now got to an infusion center all day? I thought of a taxi taking me and Hayden and Thomas said absolutely no. He thought of trying to take Family Leave & Medical Act but he would probably lose his job, not to mention we cannot go without the pay. I made the call to the doctor to tell him that oral medications or shots were necessary. .

Instead, we opted for the chemo that makes you sicker but you can get at home. The shots that are starting, we arranged for an early morning dose so that Thomas can take me, stay with me, take me home, and head into work a little late, each week. We are hoping this schedule and arrangement will be approved. If so, Hayden will be trained in what to do to help his mom. He can work on school work while laying there beside me to watch my symptoms. During the required adjustment period that someone over 18 has to be there, Thomas will have to take off work. So much for the beach this year.

Yet, I have to fight. I have to keep going. I have to win this battle. I cannot die. I must hold on and fight and endure at least until Hayden leaves on a mission. Of course, I would love to stick around longer, but for now, I just have to hold on for him. I never want him to experience what it is like to feel this alone. 

My heart is broken. I am exhausted.... worn out.... in pain.... hurting. Yet, I am learning to continue to fight. I am learning that I am strong. I can do this. I am learning the strength of my son. He is a fighter and is fiercely loyal. He loves his mom. As we sat down and talked to him, he is up for the challenge. He is up for the fight. He says he can handle mom vomiting and being ill. He just wants me to keep fighting and to live. I am grateful that my husband and son still think I am worth the heartache this disease is causing. I am grateful that my husband is loyal and loving and caring and a saint. He treats me like  queen, even in the midst of my greatest struggles. I cannot imagine a better man to walk this journey with. He is my strength, my protector and my true love.

So, my prayers for someone to come to my rescue happened. I was reminded that my husband, my son and my Savior are what I need to fight this fight. I pray this journey will teach Hayden love and endurance, long-suffering and dedication, Hard-work and moving forward in faith. I pray this journey brings you closer to our Savior, not farther away. I love you, Thomas and Hayden. Thank you for coming to my rescue. And, all my love and devotion to my Savior who carries me, strengthens me and gives me hope. Without him, this fight would be simply impossible.




Thursday, April 21, 2016

Rilla

Our dear Rilla came to visit. Oh how we love and adore her. I cannot believe that we met her when Hayden was only a few months old. She watched Hayden while I worked and became a huge benefit in our lives. We love her. She still struggles to remember that he is so grown up and is floored by his maturity and height. He is no longer the Elmo loving little 2 year old that she loved so much. He no longer loves play dough and puzzles and all things Disney. He is definitely a teenager. Yet. We still love Rilla and the amazing friend and life-saver she has been to us.

It was so much easier leaving Hayden when I dropped him off where he loved to be. He loved Rilla. I couldn't have found anyone that loved him more. He was spoiled rotten, played with non-stop and cherished. He was so loved and it made me so happy. He still loves Rilla will all his grown up teen heart. She will always be precious to us.

Easter events

This Easter was a little low key. It was just Josh's & Jake's families with Grandpa and our family. No littles for an egg hunt. We ate yummy food at Josh's, sat and visited with the adults and the kids hung out. They just are not little anymore. Although they did dye Easter eggs. It was a crazy night filled with Laughter.

Hayden was happy to come home and play video games with his dad...one of his favorite activities that doesn't happen nearly enough.

Most of all, I love what Easter stands for...a renewal. A hope for a new season and a better season. A fresh start. Symbolic of the fresh start our Savior provides.  I am so grateful for my Savior, his atonement and resurrection. Because of him, I can start again, repent, live again and be forgiven of my sins. Because of him and his sacrifice, I will see my mom again and Hayden and Thomas will be reassured they will see me again, after I am gone. One day, we will all live with our Savior. We will all be resurrected. All the wrongs will be made right and all pain will be gone. Because of my Savior, I have hope. Hope in a brighter tomorrow. Hope for a better life in the next world. Hope for my sins to be forgiven. Hope for the wrongs I do to be made right. Hope for the promise of tomorrow. Hope for the promise that the next life will be worth all the pain and suffering we endure here. Hope for the promise that we shall all live again. Hope for all that is good in the world and in the life to come. Hope that when I stand next to my Savior, that he will say the words I long to hear, Well done thy good and faithful servant. Easter reminds me of Hope. And I am so grateful for hope.
Above: Hayden, Braden, Katelyb, Brinley and Kiley
Hayden on Easter morning. New outing and headphones.
Hayden and Chad - acting out in Logo Party- their favorite game.


Easter Sunday was church followed by lunch at Lisa's, since Chad was in town. We played Logo Party girls vs. boys. It was a fun couple of hours. Hayden loves playing Logo Party and it is so fun with Lisa's boys.

 That evening Chad came over to hang out. All was right in the world. Lots of laughter. Lots of noise.

Wednesday, April 20, 2016

Dislocated shoulder /wrist

Life keeps throwing twists. Four weeks ago, this was me in the hospital. Unable to use or ,I've my right arm and a dislocated shoulder. After much research they learned I had dislocated my right shoulder Ina seizure and the dislocated arm was replaced incorrectly. I have four pulled /destroyed nerves, an entrapped nerve, a pulled ligament and more. 

So away I went to orthopedic surgeon. I learned that a double seizure pulled it out the back. The pain simply unbelievable and abov my tolerance level. 

However. They cannot do surgery due to me being on chemo and my complicated health history. So while in the orthopedic surgeons office, he enlightens me that I am in full blown cancer. Lymphoma. This complicates things more as now there is nothing they can do. The emergency surgery is cancelled. Pain meds cannot be given as it will interact with paralysis. 

After a 9 am appointment that lasted almost 3 hours, I ran out sobbing. 

The reality of no relief for excrutiating pain hit. The reality I had cancer hit. The reality of my situation slammed into my heart. I felt so alone. 

The complications continue. I am stretched past any point of understanding and help. I walk a long and painful and lonely road. But this is my life. Someday it will all make sense and all be ok. 

But for now. I am hurting more than I could imagine. I am scared. I am  alone. 

The. I remember I have my husband, my son, my Savior and a handful of friends that still care. I am grateful for  all those that walk with me. It makes an unbearable road more tolerable. And right now, that is what I need. And prayers for a miracle. 


Chad

Oh how we love chad. When he comes to visit, we are all smiles. Oh how we miss him. He will always be so special to me. One of my,bonuses in life. I love you, Chad. Always. Forever. No matter what. 

Temple

I am so proud of this boy with all he smile on his face. He is joy and life and light. He is hope and peace. 

With the wire sticking into his cartilage of his heart that with each breath causes pain. With physical activity causes deep and horrifi pain. Yet, he was up early on Saturday. He did I. He walked from our home to the Gilbert Temple. 10.2 miles. He was the first one there. He smiled the entire time. He was energetic. He was all smiles. Happy, energetic, joyful and filled with life. 

He is so optimistic. So filled with joy. So happy. Knows wit his Savior's help he can accomplish anything. 

He just does he impossible. Always. With a huge smile on his face. I am so proud of him!!!!!!

Hayden, you are an inspiration to me!!!! You are my personal hero!!! I am so proud of who you are and who you are becoming. 

I love you now and forever. Always. Forever. No matter what. You are mine. I am yours. I'll always be by your side. 

Weeks visit

Our dear friends, Jordan and Sarah Weeks and their four adorable children came to visit us from Utah. I hav missed them so much since they moved. The kids have grown so much. I'm grateful they still rememebered me. The boys absolutely did. 

I recall he day each of these sweet children entered their mother's arms and heart. I was there as each of them were adopted and experienced their sealing in the house of the Lord to their parents. 
I have tender moments with each. Moments that are precious to me. 

I love watching Hayden with them. He is so kind. So sweet. So caring. They adore him. And he loves them. 

I'm already looking forward to their next visit. I love you sweet kids. Please always remember Aunt Jer and Hayden and Thomas. 

Ann

My sweet niece, Ann, came to visit us. We miss her. Hayden absolutely loves when she comes over. He loves that she helps him set things up in his computer, install new apps, and teach him new computer tricks. Thomas, Chad and Ann are in their own leagues with helping. The mom is no where close.  

She is a doll to help him and bring so much joy to Hayden's life. I am so grateful for how much she loves and adores him. 

I enjoy sitting and talking with her and catching up on her life. She is in school and working and managing her health. I'm proud of who she is becoming. I see the joy in her eyes again and the sense if accomplishment. I hope she will always continue to work hard and find joy and satisfaction in a life well lived. 

Conference at Jodi's

We spent conference weekend at Jodi's house. Saturday night they had all the young men in the ward over for steaks and baked potatoes and delicious roasted veggies. They are really good to their Ward family. I am impressed by the work they do. Hayden enjoys Patrick and some of the guys in their word, along with his darling cousins. 

Sunday morning we got up and watched the first session while Jodi made Kneaders French toast, strawberries, whipped cream, caramel sauce, back and fresh fruit. Yum! Spiritual and physically well fed. 

We listened to the uplifting messages. There was a point where the speaker asked, "do you really believe?"  With all the faith Talmage could muster, he said, "yes. I believe. I really really believe!" And them he asked me. I bore testimony to Talmage of the living Savior and my belief in him and how much I love our Savior. My heart melted. 

The kids played rummikub, played outside and had fun in between sessions. The second session brought answers I needed to hear. 
My sister made chicken and dumplings for dinner. They were delicious! I consider them liquid love. I'm grateful for what she does for me. 
I certainly love this sweet nephew of mine. I love that he loves me. He makes me feel like I'm ok. That I matter. That I'm good enough. That my illness isn't the worst thing that has ever happened. That me, just the way I am, is good enough. I miss him so much. 

That mixed with the messages I heard, eased my heart. I felt alive again. I felt loved and needed by someone other than Hayden and Thomas. Although that is absolutely enough. Thomas and Hayden are my world. But it was nice to feel so much love again. Feel like my world was bigger than it had been in a long time. It was a good day. 

Tuesday, April 19, 2016

General conference

I love our beloved prophet, Thomas S. Monson.  I know he is a prophet of God. I know he talks with and listens to and follows our Savior. He is a special witness of our Savior. He gives us guidance to endure our every day lives, hope to keep going and faith to follow our Savior. He is a man of God that I love dearly. I love and sustain you, President Monson. 
Some of my favorite quotes from conference. I received much light and learning and knowledge from the sessions. Most of all I was reassured that all will be made right in the next life. I am reassured. I know,that there words spoken from the pulpit that were meant for me. I felt my Savior reassure me that I am loved. It was precious moments spent coming closer to Christ and re dedicating my life to him. 



Chad- O

We miss Chad like crazy! He was such a huge part of our lives for so long and having him at college is hard. Especially when he comes down and needs to visit so many people. I think that Thomas and Hayden may need to take a trip to Utah to visit him so they can get some quality to with him.

The boys start laughing and joking like always. There are Nerf guns blasting, darts flying everywhere, updates for computers, downloading new software and playing the XBOX.

I love how Hayden's face lights up when Chad is around. It brings me great joy.

We love Chad and all the ways he makes our lives complete. We hope he always knows that he is family to us. And we would do absolutely anything for him.




Monday, April 18, 2016

Hayden and treatments

 This news of lymphoma and immune system war we are beginning, brought me immediately to thoughts of my dear son.

What decisions do we make? How do I decide what to do? Where to get treatment? Do I take the harder medication that is available in pill form but be able to stay at home during treatment? Or do I take infusions where I can get help with other medicines are given to counteract the side effects, yet it requires Hayden to sit with me at an infusion center a couple of times a week?

The answer came quickly. I will opt for at home treatments. Even though it requires my son to be my caregiver, that we can do it within the confines of our home. No going to a hospital or treatment center and Hayden seeing all the other really sick people there. I don't want him to think this is where I am headed.

Hayden is simply amazing. He fixes me lunch on chemo days (and any time I am sick). He helps me to the bathroom. He lays in my bed next to me and reads and watches over me. He does his school work on the bed right by my side. He is my protector, supporter and my chemo buddy. His strength keeps me going on even the hardest days.

No one should have to face this, but especially not a fourteen year old boy. He is young. He is in his youth. He shouldn't have to deal with chemo, cancer, immune system failure, autonomic disorders, seizures, and so much more.

As that thought crossed my mind, another quickly came to my mind. My Savior was showing me what power has come from other fourteen year old boys and the weight and responsibility.  I was reminded that fourteen year old boys are strong, if they have a knowledge and faith in their Lord and Savior, Jesus Christ. The beloved prophet Joseph Smith, seeking for truth, went into the woods to pray. After fighting the adversary himself, he saw God our Father and, his son, Jesus Christ.  He was instructed by them. He was trusted to do their work, at a mere boy of 14 years old. Our Savior, Jesus Christ, at a tender young age, chased the money changers out of the temple. He reminded his earthly parents that he was to be about his father's business. The list of amazing prophets and good men came to mind. Each took on huge responsibilities by the age of 14.

 Hayden was no exception. He is strong. He is rooted in the foundation of our beloved Savior. He knows right from wrong. Is it an ideal situation? No. But I am promised Hayden will be okay. He is willing to help me. He wants to be my strength with his dad. He repeatedly says how he wishes the priesthood power was given based on worthiness and readiness only, without an age requirement. He says he would do whatever was required to be able to hold the Melchizedek Priesthood. He wants so badly to bless me with the power of the higher priesthood. I reassure him that his prayers are heard. They are just as strong as blessings when he offers them in faith.  I am beginning to see him as my own little warrior. My own protector. My strength.

And if he wasn't up to the task, our loving Savior, would have provided other help for me. Instead, he knew that Hayden and I are a great team. He knew that we had Thomas' full support and love. With that, we move forward. Hayden at my side.

And although I hate seeing the responsibility placed squarely on Hayden's shoulders, he will rise to the task. I am one proud mom.

So, with Thomas and Hayden by my side, holding me up, we begin this next journey of fighting the lymphoma. I will trust my Savior that this journey will bless Hayden's life, not hurt it. 

Darkness

I feel I have been walking in the dark so long that I do not remember what it is like to walk in the light.

I have faith. I have faith in my Lord and Savior, Jesus Christ.

I have faith that someday that all of the uncertainties and heartbreak in this life will be made right.

I have faith that someday I will have an illuminated path laid out before me. That after I have proven myself in the darkness, that my Savior will flood me with his light. The light that illuminates all the world.

But for now, for reasons and purposes far beyond mine own understanding, I must walk in complete darkness. I must walk without knowing where I am until my foot touches the ground. I must walk in a world that I do not understand. That takes all I have to navigate and not fall down. I am not sure why but I do trust that there must be some reason.....

So I continue to walk. I continue to try. I continue to move forward. Into the dark. Into the unknown. Into a world that is dark and lonely.

I pray that my Savior is just on the other side of the darkness. Because it is all dark and very lonely right now.



Songs and my Savior

My heart responds to music. The same great council given without the beautiful instruments and piano in the background, just isn't the same. As I have been pleading for answers. Begging for someone, somewhere, to bend down and grab my hand and pull me from this despair encircling me.

How ironically that my Savior would provide answer after answer, via Pandora music station. For hours on end, each song spoke directly to my heart. The order, the lyrics, the beautiful music, contained one sweet message after the next. The messages were definitely from the divine Savior.

As one of my favorite songs from Josh Groban played, tears fell. My Savior assured me that the hurt I feel, the weakness in my life, the need for help, is ok. Because all those emotions. All the feelings of loneliness and emptiness and heartaches, each moment of misery, those feelings drive me closer to my Savior.

Josh Groban --You raise me up
When I am down and, oh my soul, so weary
When troubles come and my heart burdened be
Then I am still and wait here in the silence
Until you come and sit awhile with me
You raise me up so I can stand on mountains
You raise me up to walk on stormy seas
I am strong when I am on your shoulders
You raise me up to more than I can be
There is no life - no life without it's hunger
Each restless heart beats so imperfectly
But when you come and I am filled with wonder
Sometimes, I think I glimpse eternity
You raise me up so I can stand on mountains
You raise me up to walk on stormy seas
I am strong when I am on your shoulders
You raise me up to more than I can be

 Then one of my favorite songs from Hilary Weeks came on with these beautiful lyrics.
He'll Carry You Lyrics
He knows your heart
He knows your pain
He knows the strength it took just too simply breathe today
He sees the tears that you cry
He knows your soul is aching to know why
He hears your prayers each humble word
When you said you couldn't face another day he understood
He knows the path that you will find
Though you felt alone he's never left your side

Chorus:
He knew there'd be moments when no earthly words
Could take away your sorrow
And no human eyes could see what you're going through
When you've taken your last step and done all that you can do
He will lift your heavy load and carry you

He'll bring you peace and leave you hope
And in the darkest night he'll comfort you
Until you know the sun will rise and each new day
You will have the strength to live again

Chorus:
And when there are moments when no earthly words
can take away your sorrow
And no human eyes could see what you're going through
When you've taken your last step and done all that you can do
He will lift your heavy load and carry you

He hears you when you're crying in the night
He hears you when your soul longs to find
Till the morning will come
And the light of the dawn reassures

Chorus:
That in the moments when no earthly words
can take away your sorrow
And no human eyes could see what you're going through
When you've taken your last step and done all that you can do
He will lift your heavy load and carry you

Sunday, April 17, 2016

Lymphoma & Nuclear bombs


Cancer has always scared me. I think because my mom died of a brain tumor when I was in high school, that to me, it is the incurable disease. I realize medical advancements have come far since then. Yet, fear still strikes my heart.

Sitting in the doctor's office this last week, those dreaded words were spoken. "We have to do whatever it takes to kill the lymphoma cells that have invaded your body. In addition to the full out attack, that your immune system has placed on your body."

The doctor went on to explain the battle plan and how we were going to attack my own body.

As I was confused and uncertain, and we were attacking so many different issues, I was trying to understand it all.

The doctor explained with nuclear bombs and missile strategic strikes. He explained that chemo number one, that I am currently on, is like a nuclear bomb. And that chemo number 2 that I begin here shortly is more of a targeted missile strategic strike only attacking the lymphoma b cells. He went on to explain that each week they have been letting off a nuclear bomb inside of me, trying to kill the bad, with the good. The new plan is to build up to 4-5 nuclear blasts each week along with a strategic missile strike.

Although Thomas somewhat smiled and laughed at the analogy, and I am grateful he did, as it broke up the intensity and seriousness in the room.

The words of lymphoma cancer cells did not escape me.  The doctor thought with everything else he was saying, that it might.

Yes, I have lymphoma. It is still in the very early stages. I can fight and beat it. We start an all out war here soon.

I have an immune system that has gone so crazy that it is killing me. It is attacking my body so aggressively that the lymphoma cancer is secondary to this problem. It is destroying the joints, the muscles, the ligaments, the cells, the blood vessels, the organs in my body, destroying my brain and setting an attack on my heart. Hence the breathing issues and feeling like I am suffocating all day, every day. Hence the indescribable pain. Hence the dislocated shoulder and dislocated wrist and elbow that the doctors and chiropractors cannot get to stay in socket.

So, my only choice is to try and fight this miserable disease. The treatment should take me within an inch of my life.  But, I am a mom. I am a wife. And I will fight this disease with all I have, with all the strength I can muster and all the help from my Savior above.



You're not alone

I awoke early this morning, in tears, praying for hope or comfort or help. Something from someone or somewhere that would give me hope and help me to hold on tight.

I sat down at the computer. I turned on Pandora. The first song began immediately playing and it was as if my Savior was singing this incredible song to me. If I had any tears left, they would have flowed freely during this song.

My Savior is good. He is kind. He is patient. He is forgiving. He is hope. He is love. He is comfort. He is peace. He is my comforter and my friend.

As the words were sung, my Savior took his love and wrapped me in it. He reassured me that I am not alone. He told me that although I have lost so much, that I have not lost him. I am so grateful for him. I am grateful for the one who loves me even when I am unlovable. I am grateful for the one who stands by my side when I stand alone.

Most of all, early this morning, when I felt so all alone. So lost. My Savior reminded me that I am not alone. I will never be completely alone because I am His. I am his beloved daughter. A daughter that simply has worth because I am a daughter of a King. And not any king, but a daughter of the King of Kings. And if he tells me I have worth, I must, even if I cannot see it right now.

You're Not Alone
by Meredith Andrews

I search for love, when the night came,
And it closed in, I was alone,
But you found me, where I was hiding,
And now I'll never ever be the same,
It was the sweetest voice,
That called my name saying

You're not alone, For I am here,
Let me wipe away your every fear,
My love I've never left your side,
I have seen you through the darkest night,
And I'm the one who's loved you all your life,
All of your life

You cry yourself to sleep, cause the hurt is real,
And the pain cuts deep, all hope seems lost,
With heartache your closest friend,
And everyone else long gone,
You've had to face the music on your own,
But there is a sweeter song that calls you home saying

You're not alone, For I am here,
Let me wipe away your every tear,
My love I've never left your side,
I have seen you through the darkest night,
And I'm the one who's loved you all your life,
All your life

Faithful and true, Forever,
Oh my love will carry you

You're not alone, For I, I am here,
Let me wipe away your every fear
Oh yeah, My love I've never left your side,
I have seen you through the darkest night,
Your darkest night,
And I'm the one who's loved you all your life,
All of your life

Thursday, April 14, 2016

Invisible Illness

I saw this on Facebook. I immediately showed this to Thomas and Hayden. I said that this is the most real example of how my neck and back and arms constantly feel. In fact, it is how my entire body feels.

I explained that is why sometimes it hurts so bad for them to hug me. This is why it hurts sometimes when the dogs jump on me. Why I walk so gingerly, why I sit carefully, why I bend slowly and methodically, why I wince in pain, why I move so slowly and why I complain if the bed bounces around or I get concerned if I think that someone may run into me.

It is also why I am paranoid of a car wreck. I cannot imagine any more bruises or broken places. Literally, I feel I battle this pain every single solitary day.

To the point....it makes me tear up, because I give myself a little more credit for what I endure day in and day out, every single hour of the day. In fact, it is 2:00 am, and I am awake. Why? Because my back and neck hurt too much from laying on that bruised and beat up back.

Maybe it is a good thing no one can see it. I definitely wouldn't want the pity or crazy looks.

Also, a sweet reminder that no matter how someone looks on the outside, the pain felt on the inside is invisible. BUT no less real. If we could all see each others scars, my guess, the world would be a kinder place. I sure hope that I give others the benefit of the doubt. Because the pain is oh so real. And oh so much more painful than it even looks.

Bishopric Meeting

My dear Bishop and first counselor came over one night unexpectedly. They said they felt they should come. For the first time, when the bishopric has come to my house, I didn't want to come out and talk. I was hurt. I was hurting physically. And I quite honestly was in so much pain that I didn't want to move. However, Thomas insisted.

They asked the normal "how are you doing?" questions. I have learned to respond so everyone is convinced I am okay. I add just enough reality with a dose of hope and people just assume all is well and move on. That is what I was hoping for this night. If I would just do what I had practiced so well over the years, they soon would leave believing I was actually okay.

The questions came, I answered. Some truthfully, if they were not about me or how I was coping, but about me, I gave the "correct" responses.

Then, a question came that I wasn't prepared for. The question threw me so hard that tears fell freely down my face. I could no longer hide behind that deep wall I have built to let others only see the person I want them to see.

Surprisingly, the first counselor responded. He told me that being only in the ward about a year, he didn't know me as well as the rest of the ward did. However, he spoke of different lessons others had learned because of me, how others were strengthened because of me and how he knew he would be unable to handle the road I walk.

I answered that I honestly believe that we chose our journey in the pre-existence and that knowing the big picture, gladly accepted the challenge, knowing the good that would abound from it.

Again, he threw me off course. He asked me the following, "Jerlyn, are you really going to give up now and let the adversary win?" and really without pausing, continued for a while speaking, "The adversary has done all in his power to rob you of your health, your ability to leave your house, to walk, to eat, to keep you so close to death that you give up. He has physically thrown every challenge at you to cause you to crumble with the defeat of your mortal body. Yet, you have stood so strong, in spite of every single challenge presented. You have beat him time and time again.

Because you were beating him so badly, and not only was he losing you, but you have taken so many out of the grasp of his hold. That he despises you. He hates you. He has personally raged war on you.

Now, he is trying to take hold of you emotionally. The struggles and challenges facing you, that have attacked your brain and mind, are just that...another way the adversary is trying to shut you down. He is throwing all his best efforts at you, determined to see you fall.

Jerlyn, after years and years of unparalleled struggles against him, and all of his strikes and punches and fiery darts that you have dodged and endured yet conquered, are you really going to let him win now?"

I was sucker punched. My heart almost stopped. Tears fell and I sobbed.

I asked the most painful and heartfelt question, "But what if I have nothing left to fight with?"

The bishop stepped in, "That is where the Savior comes in. Jerlyn, YOU KNOW THIS! I have watched you fight him over and over for over four years. You have battled one on one with him so directly that most would have crumbled. Yet, you keep fighting him. This may be the fight of your life. But YOU CAN DO THIS! Do not let him win."

By now, my body was almost convulsing, as I tried to hold it together, very unsuccessfully. I HAD to fight. I HAD to fight because there was no way that I was letting the adversary win. I would go down fighting but I would never surrender. I HAD to fight for my son. I HAD to fight for my husband. I HAD to fight for my sister and so many others. The fight MUST be won. And this was something I HAD to face. There was no turning back now. War has been raged. The fight will continue long past my life. But one thing is for certain. He will NOT win. I will! I am on the winning team. My Savior fights with me. And I may be weak and breakable, but my Savior is strong and unyielding.

I knew in that instance that as long as I continue to breathe, my life would be a fight.

Not only would I be in a physical fight to stay alive. I would also spend every breath, every day, every ounce of mental strength to beat the adversary.

Yet, I was also certain, in those moments, that as long as I continued to try, I would not fail, but I would succeed gloriously. I would win this fight. Most likely, the fight will end with my life, but I will win the fight.

I am reminded again, "I still have a lot of fight left in me!" I guess I raise my sword and battle on.

Friday, April 8, 2016

EEG/ Despair (part 2)

As I found myself struggling to get out of bed or survive, I grew more and more frightened. I prayed and prayed and prayed for help or someone to help sort through these unfamilar and horrific feelings I was facing.

I received a priesthood blessing from my beloved husband. He laid his hands on my head and offered a beautiful blessing. In it, I was promised protection. Protection from the horrible medication reaction. I breathed a deep breath thinking my living hell would ease and come to an end.

The overwhelming and all encompassing peace that I am used to, didn't come. I beat myself up wondering how and when I had lost my faith and my ability to receive such blessings from my Savior. I again questioned what was wrong with me.

The world became darker and my glimmer of hope for anyone or anything to pull me out faded. I knew I was alone. All alone.

When I thought the literal gates of hell would swallow me up with the sheer misery my heart encountered, the Savior sent help in the form of the bishopric. When they came, I was hurt and angry and didn't want to go to the door. However, Thomas didn't give up as he knew it was what I needed.

When they started discussing Hayden's upcoming Trek, I again found myself telling the Savior that they must have felt inspired to come but were missing what was so needed at this minute. But how do I bring it up and what would they do if I did?

As we talked, I remained hard and cold and calm. I participated in the discussion to the point I had to, and tried to hold it together for Hayden's sake. Then, the question came, "How are you doing?" I tried with all my might to push down the flood of emotions that were ready to break the dam. No such luck.

I explained my anger of the Mayo doctor that lied to us to protect his ego. I talked of all I had lost from his decision. I explained that it took months and years to get medical help because I was labeled anxious. That during the four additional years that it took to get the diagnosis, that my illness has progressed and deteriorated to a point that doctors have no hope of curing me, but are trying to buy me time. No hope of a cure. No hope of the life I was knew. I was forever changed and so was Thomas and Hayden's lives. It wasn't fair. And most of all, I sobbed for all the relationships that suffered and disappeared because I didn't have a diagnosis that they understood. I had lost family, friends, our home, my health, my independence, my freedom, our finances, our lifestyle, our ability to go places and our ability to live a normal life. Because of one man's agency to choose his ego over the truth, my life was in shambles.

The bishop took a deep breath unsure of where to begin. But the first counselor stepped in. He told me he hasn't known me long and vocalized the respect he has for me, the inspiration I am to so many and the way that those around me truly see me. He told me that he would have stopped fighting over five years ago, if in my shoes.

He then said something that struck a cord, a ray of hope. He talked of how he admired that no matter how much Satan fought me and threw absolutely all he could at me, I never faultered but found a blessing in each trial and a fortitude for greater strength in my battles with him. He discussed how the adversary had used every technique possible to destroy me. He tried to kill my mortal body in order to break my spirit. He talked of the great faith I have because I know that I have fought satan head to head and come out victorious.

He then said what I needed to hear.... "After all the battles that have been raged against you and all the fights you have won. Why would you let him get in your head now and try to destoy you mentally?"

I hadn't thought of that. I knew I had been in the battle of my life. But why? Why would someone lie? Why would someone hide the truth?

The adversary was raging this war. This war that had to be fought head to head just me and him. I had come too close to our Savior and witnessed too many miracles to have help when I so desperately needed it. If the adversary could take me mentally with thoughts of -no one loving me, then he ultimately wins. So I couldn't let him defeat me in his last ditch effort to take me down.

All of a sudden I felt my fight come back. The clouds somewhat cleared enough for me to see with my premortal eyes and know that crushing him was the only option. Giving in is something I would never do. The circumstances may not change. It may be a fight I must face alone, but I am determined to win this one. Absolutely positive.

EEG Testing and my downward spiral (part 1)

I came home to testing. Lots and lots of testing. The first was an ambulatory EEG test that required leads all over my head and looking like I just had brain surgery along with an EKG hooked to my heart so they could monitor my seizures and heart rates.

A couple of hours in and I had a migraine. Massive migraine. It hurt. Then came the struggle to swallow and the breathing issues. So much so that even after a blessing, my breathing didn't come with any ease. I was panicking and headed into a panic attack....a huge one. Thomas loaded me and all my equipment into the car and headed for ER. I figured in my get up that I would certainly get back right away. Not so lucky. I waited as my breathing continued to get worse and worse and worse. I went to leave ER and they stopped me. But what do I do? I desperately needed oxygen. The monitor may say 97% but my toes and feet were purple from no oxygen.

They finally moved me into the ER next to the doctor station. An ER doctor saw me and my struggle to breathe and grabbed me. He said he requested me because he had never seen anyone looking so weird walking into the ER. He wanted to know what they were doing to me and why. He came in before any nurse or LPN. He listened. He wanted to know my history. I just wanted oxygen.

He tried to give me steroids and benadryl. I told him I already took three doses and had been for days. He stopped two medications and questioned the EEG machine. However, It took hours to get the IV in. After blowing multiple IV lines, they finally secured one in my inside wrist. Wowzers did that hurt. As they tried to pull blood, it collapsed. Then they started one in between my two fingers, the pinky and ring finger. OUCH! Too bad that the blood coming out would clot before they could get it out. No blood work for me. The doctor finally told them to start giving me shots as IV lines were failing. Finally a PIC team got one in between my fingers to hold for meds but nothing else. Massive doses of steroids and benadryl later and I could swallow and breathe.

I headed home unsure what to do. And still miserable.

Saturday the results were the same, migraines, struggle to breathe, unable to swallow and frustrating pain. Indescribable pain. How can an EEG hurt? I have had so many?? Yet the pain and aching is so intense.

By Sunday morning, I could no longer endure the pain of it all. I was absolutely miserable...As we took off the EEG, we found out why. My face had burns from the EEG being too tight and allergic to the gel. Burns that scabbed over and scarred. Then when Thomas unwrapped my head, blood. I was bleeding and skin ripped off. Oh the pain. The raw skin with the shampoo. Ouch doesn't describe the incredible pain.

Now, I was dealing with pain from the after math of the EEG and withdrawals of the heart and brain medications. Oh was it one hell of a week as my body went through withdrawals of hard anti-seizure meds and medications that keep my heart ticking correctly. They also stopped the paralysis medications which increased the side effects of paralysis.... more struggling to breathe. The viscous circle had begun... which thru me into a huge flare.... which made all of the symptoms worse.... which made me feel more and more horrific.

The perfect storm had started and I had to ride it out. No short cuts.... nothing to ease my pain..... nothing to stop the flare....no help.....no relief....no breaks ....which in turn created no sleep....no rest... sheer hell was all I could use to describe the horribly down-slide I was in. How to stop it? How to get help? How to find relief from the doom?

I was hoping for days but weeks continued at this pace... more anxiety from withdrawals from medications... more nausea.... more vomiting cause my medications wouldn't stay down. More struggles and more pain than I can describe. My body would shake with revolt. My head pounded. My arms shook. My legs became restless. (I wondered why anyone would ever do drugs if this is the down and withdrawal...simply stupidity. This was worse than any pain I could imagine.) I was withdrawing from seizure medications and brain medications and heart medications and medications to ease the paralysis... not anything I could do about it. Nothing taken for fun or by my choice.


My days continued to grow dimmer by the minute. I struggled to find a moment of peace. I struggled to get air. I struggled to find hope. I struggled to find anything or any reason to continue fighting. I wanted to give up. I wanted this fight to be over. I wanted to throw in the towel and say that I had given my all and there was nothing left. I had no hope.
What happens when we find ourselves that far down and that utterly done with life? The adversary steps in. He takes hold of what is left and tries to turn it against you. He tries to throw those fiery darts that are discussed in the scriptures, and pierce you to the very core. I felt on top of the struggles I was facing that the adversary and all evilness itself had determine to plague me with even more discouragement and pain and nothingness.

With the medication changes making me crazy and not knowing what was real, the adversary convinced me that I was not loved nor lovable by anyone outside of Thomas and Hayden. I was convinced that no one would care if I was never seen from or heard from again. Convinced that the only two even at my funeral would be my dear Thomas and beloved Hayden.

Then events happened that would seal that in my mind. Loved ones that I trusted felt distance. My church that had been such a strength was too busy for me. Those that I had just entrusted to help me and turn to, informed me they were too busy.

I was sitting here wondering if I died, if anyone would even pause their lives for a moment to help comfort Thomas and Hayden. I was convinced I didn't matter but was holding out hope that my precious husband and cherished son did matter to them.

Yet, at every turn that I reached out, doors were slammed closed. So much so that I didn't trust anyone or anything, even my own thoughts. I was in the deepest of all despairs. I was beyond rock bottom.

I cancelled all doctors appointments. I cancelled all activities. I cancelled all testing. I cancelled all treatments. I quit trying. I quit living. I was just enduring and pleading for it all to end, one way or another.

I could never do anything to hurt Thomas and Hayden. Absolutely nothing. I never would. I want them to have all the love and peace and joy the world has to offer.

So I simply held on as tight as I could. I would plead for help. For the Savior himself to come lift me or for him to send help from anyone in any way. I laid in bed pleading for someone to come to the door. I rocked on the couch, asking the Savior if anyone in this entire world cared, for them to show up at the door. I plead for all those that have brought in meals and dropped by and done so much for me in the past,  to just come. To show me in some small way that I still mattered. that my life was worth living. That I wasn't entirely alone and unloved.
I prayed for the bishop or anyone in the ward to show up... I would have welcomed a complete stranger. Yet help and peace and hope and love did not come. Only pain....deep, deep rooted terrible pain and loneliness.

I started to wonder if this is all I had left. The three of us and it would be us vs the world and us vs the dark one himself. I knew I couldn't do it alone. I knew I was in way over my head. I knew that if my situation didn't change quickly that my finger tips were slipping and I was fading. I knew without divine intervention or our Savior sending someone, somewhere to my rescue that it would be too late.

I wondered if I should bail out of the boat before I took out Hayden and Thomas with me. I sat up all night long pleading for relief or if no one cared and help and easing my misery was not possible then please... simply let me die.

And still another several days passed as I slipped deeper and deeper into a despair and dark place that put so much pressure of my heart that I could barely breathe. I knew I had never been this low, in such a dark place and so utterly frightened and scared to death. Isolation and complete utterly lost........is this how my story and my fight for life for so many years would end?

I couldn't bear the thought of this life....so I pleaded and prayed that sleep would overcome me. Restless sleep came and I was grateful for even the small moments of relief.

Frightening Call

My Dad scared me to death.

Last week, I received a phone call from Jake telling me that he and Josh were headed to the hospital. Dad had been through surgery and wasn't doing okay. He had been in a surgical center and was being sent to the hospital via ambulance because of heart issues.

I asked Jake if he was breathing, ok or what was going on? Jake didn't know. He only received a panic call from Bonnie explaining that he was not breathing and his heart was having complications.

My heart sunk. It almost literally stopped. Tears fell from my face. I knew I needed to get there asap.

Luckily it was Wednesday, chemo day and Julie had stopped by with Brody so he could hang out with Hayden and Julie was going to check on me. She hadn't been here long, when the call came in. I was so grateful she was here and willing to drop me off at the hospital and take Hayden and Brody to dinner to distract Hayden.

The ride to the hospital took forever. I called Thomas and asked him to meet me there and let Jodi know what was happening.

Back in November, at my dad's birthday party, I mentioned that he didn't look right, that something looked physically wrong. But the thing that really made me think there was a problem was my Dad started talking like he was dying. I commented to others, but only me and Robert (Etherington) picked it up. We were both convinced, as both of us have asked ourselves the same questions when we came close to our own loss or mortality. There was just something different and off. His activity level was also incredibly low, especially on the cruise. I again commented that something wasn't right with Dad but everyone just brushed it off as a cold or particularly hard day. Yet, something nagged at me and I felt he wouldn't be with us much longer.

When I arrived at the hospital, Bonnie's children were in the hospital waiting room. Bonnie was with my dad. Thomas showed up right as I was dropped off and walked in with me and Jake and Josh only arrived a few moments before me. I took a deep breath as I opened the curtain and walked in. My heart dropped. He looked awful and was in terrible amounts of pain. His stats were all over the place. His heart was fluctuating between 40-170 and his blood pressure was sky high, especially since he has super low blood pressure normally. The pain medications were not cutting the pain and he was miserable while he awaited his next dose.

I talked to him, but he did not want to be hugged. I listened to what had happened. The surgery was much more involved and complicated than originally planned. As my Dad came out of surgery, he was jerking and seizing. The doctor took full responsibility and said he shouldn't have done so many things in one surgery. The began bleeding soon after and was rushed back in to the surgical room to stop the bleeding. His pain was out of control and his heart was crazy so he was rushed to the hospital.

We discussed my genetic disposition to burning through pain medications so quickly that they are completely out of my system in a quarter of the time of the average human. He said that wasn't good and he wanted someone to ease the pain somehow. I watched as he suffered so much and was so miserable. My strong dad that never shows any emotion, whatsoever, at all, was upset. My heart broke for him.

As we talked, his heart would jump around as he talked and moved. I knew the best thing for him was less people and less interruptions. Sleep was the only thing that would work. I hugged him gently after we visited for a couple of hours and prayed he would get sleep.

The way home was prayers of gratitude and prayers for him to find comfort and relief. Prayers for his recovery. Prayers that this would not be the last time I saw him.

It has been almost 29 years since the dreaded day that my mom passed away. The thought of losing my dad, simply heartbreaking. I knew I was definitely not ready to say goodbye. But was grateful for those promptings and warnings that I felt for the past several months. Because of it, I have said what I want to say, told my dad how I feel and how truly grateful I am for his love, sacrifice and things he has taught me. I am glad I hadn't left anything unsaid.

I know our dear Savior loves us and answers prayers. My prayer was our dear Savior would continue to keep his loving arms around my dad and keep him safe. I held Thomas and Hayden both a little closer that night. Nothing like a good dose of mortality to help you truly see what life is about. 

Monday, April 4, 2016

Happy Birthday Puppies

Olivia turned one, Maya turned two and Maxwell turned 3 years old.
Suzi felt a birthday party was in order. So with peanut butter and yogurt dog muffins in hand, we sang to the puppies and let them go to town on treats. I am not sure who is crazier.... the three puppies or Aunt Suzi. Poor Max and Maya...it was their first birthday party. I sure love my puppies but I only spoil with love and attention. Suzi is such a perfect spoiler that she spoils in every way possible. Hence she is the funnest aunt and most loved. I am guessing the dogs agree, as well.

Headed Home

I'm going home... home... to my safe place, my comfort, my place of joy and home of love. No matter how much I love a vacation, I love the feel of going home. There is something about the safety of home...the comforts of home...my own bed....my own place...my place of joy...my peaceful retreat.

I loved every minute with all my extended family. I loved the moments that I will cling to and hold in my heart and cherish. I will always treasure this special time of bonding and unity and love.

But, my body was worn out. I was exhausted and tired and ready for calm and quiet and just laying in bed for days. No where to go... no where to be....back to my routine and my life.

I felt melancholy. Sad it was over. So very grateful it happened. 
Jodi's crazy kiddos. Those faces. I will miss them dearly each and every day. I will miss the hugs....I will miss the smiles... I will miss hearing their voices and seeing smiles stretched across their faces.
Then I again am reminded of all I have, all I have been given and all that I am blessed to call mine.

On the second leg of the flight, I was exhausted. I had given my all and then a million times more. Even with my limited vacation, I had nothing left. I was so tired. I told Thomas at take off the I wasn't sure how I could keep going. He reassured me that I would have heavenly help. As the plane ride continued, I started to feel off. But what could I do?? We were flying. I leaned my head on Thomas' shoulder. I buried my head into him tightly. I could feel the seizure begin. I fought it like crazy, pleading for relief and it to stop. The anxiety kicked in and within a few short moments, I was in a full on seizure. Thomas said I was jerking everywhere and he was trying to hold me tight to minimize others seeing, especially my precious nieces and nephews. Thomas gave me a silent blessing as the seizure escalated. luckily, I  think only Jake and Rosie saw the jerking and seizing. The seizure dissipated, as do most. I was exhausted and cried and cried after. Of course, that one had to hit the frontal lobe and the emotion center. I am so grateful for my husband and his protection of me. He quietly did what needed to be done. He took care of me. I am truly grateful for him and that the seizure wasn't any worse than it was.
As we arrived in the Phoenix airport, I couldn't leave without hugging each of these amazing siblings one more time. I wished JD was there for one more hug. One more moment that we were all again together. These people mean so much to me. I am so proud of who they are, who they have become and how they live their lives. I will look forward to the next time I get to be in their presence.  And I will hold tight in my heart all the magical and precious moments we made. I love you all. Josh, Jake, JD and Jodi...thank you for being apart of my life. Thank you for loving me. Thank you for all you do to make my life better. I couldn't ask for better siblings. I am grateful for each of you. In this moment, I bet my mom was looking down and wrapping her arms around us all. Reassuring us that we are still her precious children. Still loved, still important and still cherished by her. I looked over my shoulder and almost could hug my mom goodbye. She cherished these moments ever bit as much as I did. I took one last look back and then looked forward. Thomas and Hayden were there. Thomas held his hand out. He knew what I was feeling without words. And I knew that what I really wanted was to head home with him.

Peace out Simonton Caribbean vacation. The trip will go down in the books as one of my most precious weeks ever. I will hold onto the memories forever.

Fort Lauderdale

What a perfect ending to a perfect vacation. Fort Lauderdale was simply amazing. After hanging out in Central Park on the ship with JD and Jodi's families, we departed the ship. Having three wheelchairs and a stroller, gets you through the line quickly. And we were off as fast as we boarded, with a week full of memories filed safely in our long term memory.

While on board, our family grew closer.  We grew closer as individual families and as siblings and aunts, uncles, cousins, nieces, nephews and grandparents. I will always cherish some of those moments, one on one with different loved ones. I cherish the time with my sister and siblings and will always be grateful Thomas and Hayden and I could experience it together.
In Fort Lauderdale, Jake found an amazing hotel. It is the most beautiful I have ever stayed in. Jodi's family and ours shared a room or suite. It had a huge master bedroom with two queen beds, massive shower and bathtub and closets and the main room had a kitchen and pull out bed. Best part was the amazing balcony overlooking the ocean. Simply beautiful with an amazing breeze.

Before we could get into the hotel, we were able to go relax on the beach. We rented a huge umbrella, lounge chair and I curled up and took a nap, while listening to the beautiful sound of waves crashing as they rolled in. I love the sound of the waves. It resets my heart. It makes me feel alive and free. It is heaven on earth. I slept sound and peaceably, soaking in each moment of sure relaxation heaven.

Jake awoke me to go to get some amazing Italian food that was featured on some food network. It was delicious. We had the most amazing straw sandwiches and Hayden had huge slices of pizza. Thomas went back for dinner and picked up take out and their lasagna was just as yummy. Boy, I am craving it now. Delicious. As good as Italy's.

The boys couldn't get enough of the beach.  Sand, waves, games, fun, and sheer heaven. We are definitely a beach family and feel our best when hearing the ocean waves. I really want beach front property in heaven. It makes my heart sing.


Hayden loved every minute of the sand and surf. He was born to live at the beach like his momma. Sheer joy abounded with the three of us. Oh how I could live there.
We had an umbrella and lounge set up just like Steph and Austin with Brinley. It was divine.
Of course the cousins were soaking in every last minute of their time together. And below is Hayden's absolutely delicious. Plus fun to go with Jake and Jodi's families. So incredibly wonderful!

The hardest part about Fort Lauderdale is saying goodbye to my baby brother, JD and his family. I love him. I enjoyed spending the week with JD, Cassie, Bryson, Coby, Tanner and Ashlyn. We hate that they live so far away. Minnesota is a long way from Arizona. It feels even farther away when we do not get to visit them as often as we like. And when they come to Arizona, it is crazy for them, as all their family lives here.

I cried saying goodbye. I love us all being together. I am grateful for the memories we made, the moments shared, the love we do have for one another, and grateful that we will see them again in July. I know it is hard on them being the only ones away from the rest of our group. I hope JD and his family know that at every family event, we wish they were with us. We miss them more than they realize and there is a definite piece missing when they are not with us.

We love you, JD! We are so grateful for our time with you. I hope you know how very much you are loved!
And just like that.... our vacation came to a close. The memories were amazing. The trip a once in a lifetime. The best part.... memories and hope and love and joy to hold on to when the world gets rocky and rough and the storms of life try to take us down. We have wonderful memories to hold tight to. We have knowledge that we love one another and would do anything for one another. And even more that those ties will go with us beyond the grave. Wherever we may find ourselves in this life, whatever differing roads we may travel, and what ever circumstances will come, the love is there, and we do cheer one another on. And someday, after this life is through, we will be able to visit each other more often and never again have to say the hard goodbyes.

Friday, April 1, 2016

All Alone

I figured if any doctor could actually put a name to this disease that the loneliness of it would dissipate. That I wouldn't feel so isolated and alone. That my world may again matter to all those that had been too busy with their lives to see what my life was like or the disease plaguing my entire being.

Well, I now have names and diagnosis'. I have lots of them. I have a whole laundry list of disease names and problems they are causing. I have diseases that have brought on entire symptom packages with them. MS, Cerebral vasculitis, autonomic neuropathy, small fiber neuropathy, Sjogrens, non-epileptic seizure disorder, paralysis of the esophagus and the list goes on and on. 

When the doctors decided to put me on chemo, I struggled. I think that was a reality check for me. Chemo. The worse medication known to man, or the thing that sends fear into most.

For some reason, I also felt like it may seal the validity of my illness, if I must endure chemo.

I think I believed that having chemo meant that the help, support and those rallying around me, like I have so desperately needed and wanted, would finally come. And, although I was terrified to start chemo, I felt that at least this latest diagnosis and corner would be one I didn't have to walk alone.

Before the chemo and the diagnosis, I truly believed that if people understood or had a clue what my life really entailed, then they would care.

And at first, it did enlist help. The first couple weeks, people came, they called, they dropped off food, they made sure I was ok. Then they realized that it wasn't "real chemo" but just medications I was taking and they dropped like flies.

It didn't matter that the pills were because I was too sick to tolerate iv infusions. It didn't matter that the type chemo I am given is one of the worst and nastiest out there. What matters is what people believe. Everyone has their own opinion of what others go through and endure. They see through their own lenses.

And since I was able to endure the cruise, well, then the rest of this must not be real. And again, I found myself facing this disease, day in and day out, almost entirely alone. Even help from the ward stopped.

I have been on chemo for almost two months. Most people endure cancer or chemo treatments for longer. People don't rally for a day or a week but for the duration. I only mattered for a few short weeks. As time continues to move forward, my support system and those that love me, grows fewer and fewer. Each week, another person, whom I thought would never leave me, fades away.

This week was an all time low, no one asked how I felt. No one called to check on me. No one stopped by. It was me and Hayden during the day and Thomas to help in the evenings.

This week was my reality check. What happens when Hayden leaves? Goes to school? He should be starting 9th grade and high school in a few short months. He should be hanging out with friends and living his life. Instead, he helps to take care of a sick and dying mother. He helps me when I am vomiting so hard that I cannot climb in or out of bed. He gets me what I need. How unfair for that to rest on a fourteen year old boy. But what choice do I have? Luckily, Hayden doesn't want to go to high school but wants to take online classes. He loves the freedom of home-school. If not, what would I do? Rely on Max and Maya, the puppies, to help me?

This disease takes such a mental toll. It takes all the strength I have to continue to fight each and every day. Every single morning, I have to endure unbelievable pain, as I try to get my body moving. Each night, I plead sleep will come over me. The fight and struggle is real, even if no one can see it.

Don't get me wrong. I pray for those that have cancer and must endure chemo. I am so grateful that they have the village it takes to make it through the fight. That they have those who love them enough to stand with them. I look at all those on Facebook with friends and family and acquaintances that surround them and encircle them as they face horrific challenges. I pray for them. I offer up pleadings that they will be made whole. I try to send messages and  find ways that I can help make their walk a little less miserable. I understand the misery of it all and pray that I can help ease their burdens in some small way.

Then, I find myself wondering why I must do this with so few around me. What about me isn't enough, isn't worthy or doesn't matter? What have I done so wrong that I am not worth fighting for? Have I really lived my life in such a way that I am 45 and have less than a handful of people that even love me anymore? I don't know what is harder... living my life knowing that I don't have anyone to turn to or even ask for help anymore... or wondering if I died, if it would really matter to anyone outside of Thomas and Hayden.

And so tonight, I find myself in a huge dilemma...where do I go now? What do I do? I may be 45 and in terrible health but what can I do to change my life and make it what I need? How do I make the changes required to once again be someone who is loved and cherished by others? What can I do now so that when I die, Thomas and Hayden have those to surround them?

And just in case there is anyone that still reads this crazy online journal of mine, that I write for Hayden and his future family, Please pretend that you never saw this. I am feeling bad enough about myself and do not need a pity call. I've climbed out of deeper holes and no this is nothing more than another trial and another challenge that I must face. I have faced harder challenges than this and I am sure the challenges around the next curve will require more effort from me. This one has just made me really sad.