I spend a majority of my day like this. Asleep. Lying in bed. Tired. Exhausted. I'm grateful for a husband and son who make sure I have all I need. They keep me going. And make sure I have what I need.
Sunday, May 24, 2015
This picture depicts my life perfectly. Me sleeping. It could be day. Night. Afternoon nap. Anytime really. The iPad and my phone are usually close by. And always a thirst buster filled with diet coke next to my bed. This day my throat must have been bugging me because there are little candies for me to suck on next to my,bed. And little graham crackers to beat the nausea. And I always have. A little puppy or two cuddling with me. Notice Maya's paw in my eye. Too funny.
Chad. Oh Chad. Each time we go out of town or away for a hike, he pulls a prank. One day all of our spaghetti jars, decorations and milk had google eyes on them. Another day we came home to over 70 dice his throughout the house. Other days he turns pictures upside down or hides timers that randomly go off or rearrange things.
For April's Fools Day Chad Saran wrapped the car. We laughed and Hayden had fun make f hats and creations out of the remains.
Chad always gives us a good laugh. He is funny. He is helpful. He is wise. And he is an all around great kid that we love and adore.
For Jodi's birthday, Lisa and I went and met her and Talmage at Mi Amigo's for lunch. I loved each moment with them. Oh. Walking in and seeing this cute little face melts my heart. He gets so excited to see me. He is my precious little buddy. I wish I could freeze him here forever. He loves me. He adores me. And words cannot adequately express how much I cherish, adore and love him.
During lunch, Talmage went and got me a present aka candy. When I went to the bathroom, Talmage opened the bathroom door for me and waited so he could open it again. He was so tender and sweet.
Them there is my sister. My joy in life. She is one of my dearest and most cherished blessings. She would do anything for anyone.
I will always rememeber May 15, 1979. My mom was in the hospital and I was so excited to find out of a year praying and pleading every day on my knees in prayer and begging for a sister would pay off. I was so anxious that my dad let me stay home from school with my grandparents so I could get a call right away if I had a sister. I think he was also nervous if it were another brother that I just might have a melt down. (I love Josh and. Jake and JD. I do)
I waited eagerly by the phone. I remember it ringing and I took a deep breath and grabbed it. It was my dad. He sounded happy. No pep talk. Just "Jerlyn, you got your baby sister. It's a girl!" Then he went on and said, "I don't know who I am happier for. You, me or your mom." Definitely me!
I waited outside when they brought her home. I would wait until my mom and dad would go to bed and I would take my pillow and blanket and lay next to her crib. I would rush home from school to hold her. I would beg to change diapers and when she got older, I fed her bottles. I dressed her. I held her. My life revolved around her.
My friends quit becoming as important and Jodi took over the biggest part of my heart and life. I just wanted to be with her. As she grew from infant to toddler, my mom used to tell me that Jodi had two moms. I was second mom and loved my role.
As we moved home, Jodi and I had rooms right across from one another. She was about Talmage's age and I thought that was too far away from her. She used her room as a toy room and slept with me every night. We would sing and I would read her Brer bear and Brer Rabbit stories in the funny voices. My friends and I would dress Jodi up and do her hair and makeup.
As she got older, my mom got sick. Jodi became my side kick wherever I went whether to friends houses, school with me and even on dates. She attended most Friday night football games with me and loved hanging with me and my friends. I remember teaching her to dance, singing loudly in the car and of course going and getting treats.
My guy friends would call and ask what Jodi and I were doing and we would double. My date and a younger brother with me and Jodi. And I loved it. Jodi attended yearbook deadlines with me. She went where I went. She was my bestie from the time she was born. My world was complete. I had my sister.
The time when on and I continued to love her. My mom got sick and I rememeber going to Jodi's parent luncheon. I went to mother /daughter parties with her and would haul my mom. We shopped. We had a great time. After my mom died, I even did more and more with Jodi.
Jodi and I were not only blessed to be sisters but best friends. From the time she was little, I cared more what Jodi thought than anyone else. If I broke up with a guy, Jodi had my back. If things went right she is the first one I would tell. I cried to her. I laughed with her. I trusted her. Together. We made it thru many challenging circumstances. We had each other's backs. Always.
Leaving Jodi behind as I went to BYU was the hardest thing I had to do. I knew I needed to go. But how? How to leave my other half behind. It was a very difficult transition for me. And Jodi. I missed her dearly every single day. I loved spring breaks and summer vacations and fall and winter breaks. Even a lot of long weekends, my dad would fly. Jodi up to see me. We spent every summer together in the mountains of Utah exploring and having fun.
I loved the summer. Jodi spent at BYU. I had a really hard time letting her go to U of A. I missed her so much. Then she got married and moved to California. I loved visiting her. But would cry the entire way back to Arizona each time I would say goodbye.
One of the happiest days of my life was when she moved back to Arizona. Then we moved around the corner from her. For seven years we lived around the corner from one another. I loved seeing her there so often. We became so close. We have had so many memories and so many good times.
Then she moved to Glrndale a year ago and I thought I'd die without her. But. My sweet sister continues to call me daily. She drives to see me. She comes and stays over. I go there when I can. But distance doesn't separate. I still cherish each day I get to spend with her. She eases my trials. She strengthens my resolve to be better. She makes the good times better. She encourages me and believes in me.
I was so happy to get to see my precious sister on her birthday. I loved chatting with her and just laughing and talking. She always brings a smile on my face. And makes me find the strength to keep going.
Happy birthday to my precious sister. One of the best moms out there. She gives and serves and strengthens and loves with all of her heart. I am so grateful that of all the sisters out there, I was blessed with the best.
When Brooklyn and Jodi came and stayed the night, Brooklyn chose to go to Flipside. Perfect. I could actually go with them. Jodi and I sat on the couches in the air conditioned place. Jodi bought both kids an unlimited 3 hour pass. They played mini bowling, lazier tag, laser mazes, bumper cars and more. They smiled and laughed and talked.
Jodi and I sat back and talked and talked. I love every precious moment I get with my sister. She is amazing. She is so supportive and helps me see the good I do.
It melts my heart. I love that my boy and my sweet niece are such great friends. I rememeber them fighting and thinking they would never like one another. Jodi and I used to laugh that within the first five minutes together we could tell if it would be nonstop fighting or they would get along. Crazy. Now it's laughter and fun and talking and keeping secrets. It's uplifting and building and encouraging. I could have never imagined how much these would have changed.
I loved the weekend with my sister, son and niece. Life is good!
My mom has helped me to become who I am today. She has helped me learn to deal with this illness. She walked this way before me and showed me the way. To live. To love. To serve. To sacrifice. To be a daughter. To be a mother. To be a wife. And most of all to trust. Trust that when life doesn't make sense that the Savior sees the bigger picture. Trust that my limited view is just that....limited. That no matter what I'm asked to do, that if I follow my Savior, all will be ok in the end. To have faith to do what doesn't make sense. And the ability to do hard things. The strength to let go if that is what is required. And the determination to follow my,Savior at all coats. And to believe that the Savior can do a better job with my life than I can. And to have the courage to hand my life to my,Savior. And the strength and courage and trust and love to say, "Thy will be done!"
I hope that someday my son will look back and say, "my mother. She trusted the Savior. She knew Him personally. She loved Himwith all of heart. And no matter what He asked of her, her response was always, I trust Thee and Thy will, not mine, be done."
It's hard to do. I'm trying my hardest to do just that each and every day, no matter what He asks. And although my greatest desire in the world is to "do the will of my Savior and loving Father in Heaven". I fall short. I struggle to be "quick to obey" and "give it to God and let go" but my heart is in the right place and I am trying.
I'm so thankful for my own angel mother that did that so well. She trusted. She loved. She laid down her life because her Savior asked her to. She willingly left and knew that in return we would be taken care of and blessed. I am so grateful for her example and steadfastness and teaching me that whatever is asked is worth it. It may be hard. It may be difficult. It may take all I've got but the price is always worth it.
Thank you, Mom! You continue to walk the path before me, leading me and guiding me and preparing me to always obey and do what my Savior asks.
It is true. All that I am. All that I hope to be, I owe to my precious and loving Mother. I love you, Mom. Always. Forever. And not matter what.
Sweet Brooklyn had her choice to do anything she wanted while her dad and brothers were at Father's and Sons. She chose to come visit Hayden. She wanted to come play games with us. I felt so loved and so wanted. Ok. Maybe she wanted Hayden but still. That means I got my sister and sweet niece.
We played games. Lisa and gang came over. We played Logo Party and Apples to Apples and more we ate treats and had cold stone creamery. We had a great time. I love all the smiles. I love all the fun. I love all the joy and laughter we had. I cherished each moment.
Family is so important to me. Family has your back. They love you and cherish you.
Brooklyn and Hayden's relationship means so much to me. It breaks my heart that Hayden doesn't have siblings. I love and cherish my siblings. I can't imagine my life without them. So it just tears me apart inside knowing Hayden doesn't have that. And then, I look around. Hayden and Brooklyn are bestest buds. They have each other's backs. They love one another and both consider the other their beat friend.
And then I look at my own cousin Lisa and her family sitting in my home playing games with me and Jodi and our families. And I think. It will be ok. Me and Lisa are cousins yet close. She has my back. And although I wish Hayden had a Jodi and JD and Jake and Josh he will and does have a Brooklyn and Brigham and Talmage and Kaylee and Katelyn and Kiley and JD and Josh's kids. Lots of cousins and lots of love.
So Brooklyn. Thank you for easing my heart. For answering my prayers and helping me to see that Hayden has so many people that love Hayden. Thanks for helping me to realize that Hayden is going to be just fine. And Brooklyn, one of my greatest desires is that you and Hayden will always stay close. Always. I love you, Missy! Thank you for loving my precious boy!
I am the absolutely luckiest mom on earth because I was chosen to be this precious boy's mom. He is my world. He is my precious and darling boy.
I have had he amazing opportunity of homeschooling this precious boy for the past year and a half. I have absolutely loved spending every day with him. I have loved our chats. I have loved talking with him about everything from scriptures, our relationship with our Savior, to sitcoms and political stances to history and how to be a good parent and husband. I've watched this sweet bit learn to clean the house top to bottom. He can do everything needed starting in the yard with weeding, trim in bushes, planting flowers, cleaning up poop, sweeping and even cleaning windows. He has accomplished learning to sort, wash, and fold laundry. He can clean a mean bathroom. He can sweep and mop and dust. He can clean the fridge absolutely amazing. He has learned to smile and laugh and talk and enjoy working.
The other day he looked at me and said, "I love being a team with you. We make such a great team in everything." We do. He is my precious boy.
We have had fun doing the simple things when I haven't felt good enough to get out of bed. We have read books together. We have read the Disney at dark series and watched the entire shows of House and Numbers and Still watching Once Upon a Time. We have loved Mythbusters and story of America and so many other documentaries.
We have read scriptures and church books. We have talked of eternal salvation and Lehi's dream and Nephi and Moroni and how history repeats itself. We have laughed together and cried together. We have loved our time together.
Hayden has become so gentle and so kind. He has become so sweet and helpful. He works hard and gives his all. He tenderly will put a blanket over me when I fall asleep. He will get me my meds and get me drinks and something to eat. He will help me up and do what I need. He can take care of me when I am sick. And although I wish he didn't have to. I wish he didn't know how to do this because that would mean that he wouldn't ever have to. That I wouldn't have been sick. But he has. And he is absolutely amazing at it. And he will make an absolutely incredible husband and father someday. He is so much like his dad.
Thomas has taught Hayden to treat me like gold. Thomas taught him to do laundry and clean our home. He has taught him to be kind and sensitive and treat women like gold. He has taught him to sacrifice and love with all of his heart. He has given him the sense of pride in accomplishment and the joy in bringing a smile to a face.
Yes. I am absolutely the luckiest mom and wife in the world. I'm so blessed to have these two amazing guys in my life. I absolutely love and adore them.
And if they make me feel this amazing every day - they even helped me feel more loved and cherished and special on Mother's Day. They woke me up with breakfast and huge smiles on their faces. They showered me with hugs and compliments and love.
It was a perfect day! With the absolutely perfect guys for me. Thomas although not perfect is perfect for me. And Hayden slough not perfect, has brought me more joy and happiness. And I think for a 13 year old boy, he is absolutely the closest he can come to being perfect. He is a precious and wonderful boy. He has been the absolutely perfect son for me. And I am definitely the luckiest person on earth that I am blessed to get to spend my life with these two.
Saturday, May 23, 2015
Pinewood Derby at Mutual. Hayden won. His car won. He loved every minute and laughed at the cars. I'm grateful for great leaders. I'm grateful for the great kids in our ward. I'm grateful for fun activities that bring out the amazing smile on my boy's face. I love that smile! I love my boy! I love the joy he radiates through his eyes and his amazing smile. And I am grateful for all those that help to put a smile on his face as they selflessly give of their time and talents to help my son and so many others. Because.... That smile. I'd do anything to put that smile on my darling boy's face.
The loves of my life spent a weekend "sun proofing" my house. They put black out shades on the windows and sun sails in the backyard. Reducing the amount of sunlight into the house and reducing the number of seizures. No complaining. All smiles.
Not only that, they weeded the back and front yards, did the laundry, grocery shopped and cleaned the house. All with smiles. All while chatting. I heard giggles and laughter and a lot of "no way"'s coming out of Hayden's mouth, while the boys have had so much fun. Service can bring joy.
I'm grateful for how much they love me. I'm grateful for the great hearts they have. I'm grateful for them in my lives. How much I love them with all my hearts.
I love these guys so much. They are my life, my love, my joy, my happiness, my heart, my world. They bring me so much peace and joy and love. They make me smile in the best of times and comfort me in the rough spots. They serve and love and are my life. My heart loves and adores them always. They have made my life complete.
I love the random moments with each of them. The ones where we cuddle and snuggle whether on the bed, couch, Hayden's bed, toy room couch and just laugh and talk. Those moments are more precious to me than anything.
My son. He made me his mother. He has brought insurmountable joy to my life each and every day. He has been my light and smile and every dream come true. He is so good and kind. He loves our Savior. I couldn't be more proud of him.
These two. Wow. I can't say enough. Write enough. Express my feelings enough. They are everything to me. I love them with all of my heart, might, mind and soul. I love and adore them. I could not be more grateful for them. They are my greatest blessings and tenderest of mercies. They are my world.
Our family is my most precious gift from our Savior. I'm grateful each and every day for them. Always and forever. For always.
Simonton's all gathered at Castles and Coasters to have fun. The cousins all loved being together and with their grandparents. Thomas had so much fun with Hayden. Look at those smiles. I wish I could have gone but I loved that they all had a wonderful time together!!!
Hayden just adores his cousins. He is so lucky to have so many close to his age. Chad-17, Kaylee-15, Katelyn-14, Hayden-13, Kiley-12, Brooklyn-11, Bryson-11, Coby-10, Brigham-8, Tanner-8, Talmage-5, and baby Ashlyn and of course they missed Josh and Steph's family. (Dallin-18, Austin-16, Casen-14, Braden-12 and Brinley-8)
Easter weekend was fun. Jodi's gang spent the night. In the morning we had a scavenger hunt for the kids to find their gifts. Hayden loved that he got beats headphones in his basket. Along with new flip flops and a cool hat. Jodi's kids got fun toys and new swimsuits and flip flops. So fun. We laughed trying to hide those big eggs. In the dryer. In the washer. Laundry baskets and behind couches. Fun stuff. I love the laughter and joy. The happy whispering of voices and fun. Most of all, I love the love that is felt. I. So happy when they are here.
Life's little moments are the best. Tmans face when the egg was in our favorite place in my home... With the cereal. All Brigham's eggs were associated with his favorites, the puppies. Under their bed, with their treats and Brooklyn's had to do with Hayden and Minecraft. Joy is family. Family is Heaven on earth. Definitely how I feel with so many loved ones around.
Being conference weekend, we spent the day listening to inspired messages from the prophet and apostles. The council was what I needed. So perfect. The Holy Ghost filled our hearts and home.
Right after conference, we headed to Jake's for a family party. We talked. We laughed. We were all together for some priceless moments and made some special memories. I soaked it in. Each laugh and smile, each emotion and each hug. It was a great night.
We all then gathered at the park for pictures. It was so fun being together and laughing. I looked around and counted my blessings. I am surrounded by good people and lots and lots of love. I have a lifetime of memories with each person there. Some longer than other, some more than others, but each holds a precious place in my heart. Each one holds special memories and treasured moments that have pieced together my life.
Oh how I love my sisters kids. We refer to them as our bonus kids. Our sweet Little Miss, Blondie. Our powerhouse and dog loving tender hearted boy and my little buddy, my Mr Tman. They each hold a precious place in my heart. They have brought me so much joy. So much love. So much happiness. I am so so so grateful for them.
I loved Brooklyn and Hayden and their friendship. I love that they are great friends. I love Brigham and how much he adores Hayden and Max and Maya. I love his hugs. I love his inquisitive mind. And Thomas loves him helping him with all things. I cherish my little buddy. He has blessed my life. He has cuddled with me and made me feel like a million bucks. And I love that Hayden has "adopted" siblings. I hope and pray they will always be family. That they will always be there for one another. That these sweet bonus kids of mine will always include my son. That they will visit him and play with him and look up to and adore him. I hope that when they get together someday with their own kids that they call Hayden and love and cherish him always. I hope Tman and Brigham will always know they are loved and adored by Hayden. I hope Brooklyn always knows she has a confidant and best friend and older brother/cousin in Hayden. I hope and pray these four are always close. I wish it so much for my boy. Oh how I love these four. They each carry a piece of my heart.
Monday, May 18, 2015
I gave in and went to the dr today. I was in too much pain to cope and decided I couldn't survive without antibiotics. I'm glad I went in. I had tons of blood and proteins and something else in my urine. Not good. So after a rosefin shot in the bum, a prescription for antibiotics and another prescription for anti-nausea meds, I was back home. Feeling awful and terribly sick.
I have 48 hours to get better or find myself in a hospital. I'm praying for relief.
As I walked in the door, the neurologist office called. I explained my,symptoms and how I feel I an dying a little more each day. I just can't recover. They said this latest infection may help me get the treatment I need. I hope.
So I am back down. The meds make me really sleepy. But I'm hoping for some relief.
Ready to fight this. Read to move on. And praying I get the help I need.
Saturday, May 16, 2015
Wednesday was a rough day. I struggled for breath. Air would not fill my lungs and I was gasping for each and every breath. I called Thomas and told him to come take me to the hospital, as I couldn't breathe on my own anymore.
He called the bishop and he and his sweet wife came over. We talked. We cried. He asked me how I was doing. I started crying and said I couldn't do it anymore. I couldn't hold on. I sobbed. He asked what I was scared of. Death? Dying?
No. To die would bring relief. I would be back in the loving arms if my Savior and be reunited with my mother that I miss terribly. The pain would be gone. I would be free from the prison that now contains me. No more pain. No more anguish. Free from a debilitated body. Ability to again serve and work and do. No. Death is do not fear. It would be a welcome relief and a joyous blessing for me.
I know first hand the pain of losing a mom. I watched my dad struggle losing a wife. I watched countless family members and friends grieve and morn for my own mother. I've spent more years without her than I ever did with her. I realize it is a void and loss that never ends. Sure. Time goes by and the deep aching and heart-wrenching pain ends until one day you wake up and realize how much you would love your mom to walk thru whatever is going on in your life. No. I cannot cause that tyoe of pain to Thomas and Hayden and others. I simply cannot bear to put them thru that pain. My pain here is one suffers, only me, while I am able to spare the pain and heartache of many. My fear is not having the strength to continue to fight to protect those I love.
Bishop then asked Thomas how he was doing. I watched my husband try so hard to pull it together. To stay strong. To search for words to express his feelings and heartache without hurting me or causing me any pain. I wanted to throw my arms around him and tell him how dearly I love him. How proud I a, of him. And how very grateful I am for a loving and devoted husband that does everything for me. He is absolutely selfless.
The bishop than asked what I thought was a familiar questions, posed to Thomas. "Brother Murphy. Do you have faith....." Thomas immediately replied, "yes. I believe the Savior can do all things." But the bishop wasn't posing the question we thought he was. He continued. "Do you have the faith to let her go? And to give her the permission to let go and return to our Savior?" With tears in his eyes and a soft and small voice he replied, "I don't want to. But yes. I do. I can't stand to see her pain. I hear her cry in the night. I see the hurt she doesn't speak. I feel the anguish. I see the excrutiating battle she faces with each step. I watch as she struggle for each breath. And it breaks my heart. But. I don't know how to do it without her?"
My heart shattered into a million pieces. I realized even me being here wasn't protecting Thomas and Hayden from the pain. They were walking this path so closely with me that there was no shielding them from the torment that is my life. My heart broke for the goodness inside my dear husband and his willingness to do anything for me. I realized how close we have grown and how great of depth there is to our love. Both of us love one another much greater than we love ourselves. I love my dear wonderful husband.
We talked. We cried. We bore testimony of miracles.
Then the bishop lay his hands on my head and have me a beautiful blessing from my Savior and Father in Heaven. Words were spoken that will forever be embedded on our hearts. I knew of an assurity of my Father in Heaven and Savior's love for me. Heaven and earth were combined in those moments. There was no distance. No veil. No heartache. Simply love.
Most blessings I have received have been my dear precious Savior reassuring me, blessing me and sending me help. This was different. My Heavenly Father gave this sacred blessing to me. He spoke of His great love for me. He spoke of the choices I have made and the difference it has made it the lives of so many of His children. Because of me walking this path, many children of God will return to our Savior and live with our Father in Heaven again. My loving Father made me many promises and shared many loving qualities with me. It was absolutely beautiful. I wept. I realized how close my loving Father in Heaven has walked this with me.
Then my Father in Heaven spoke of our Savior and the atonement. He spoke of watching our Savior, His Son, bear my burdens and endure my trials, heartache, anguish and pain. He spoke of shedding tears for His Son enduring the pain for me and knowing I still would have to walk it. I shed tears. I cannot express how many times I have pictured my Savior in the Garden of Gethsemanee sacrificing for me. I've thought of my lowest points and have always leaned on the fact that He understood even when I cannot explain in words the anguish it has caused to anyone else. But i had never thought of my Father in Heaven watching His Son suffer for me. Because of my illness and then knowing He would watch me endure and suffer. It was heartbreaking and loving and kind and all encompassing. I felt so loved.
Many other blessings were given. Many wonderful promises made. Beautiful gifts given and wonderful heavenly promises given. My understanding of my role. My mission. My part in the plan of salvation was made clearer. Divine understanding came. Some elating. Some heartbreaking. Yet all divinely inspired. I felt incredible love. There was an assurity of the plan. I was given beautiful reassurance and understanding. My faith and knowledge increased. My gratitude grew. My testimony expanded. I felt wrapped and surrounded in love.
I'm not too sure what the future holds. I know if I am blessed to continue to walk this earthly path, and continue to tarry in this place longer, that it will be in a disabled body. Healing will not come in this life. I will continue to fight for my life each and every day that I walk this earth life. I will struggle. I will be in terrible pain. I will fight for breathe. I will hurt. I will be tired. Really exhausted. I will struggle to do the very basics. This life will continue to be a struggle and fight.
As long as I am confined to this mortal body, I will fight disease and pain. And a body that is getting sicker and sicker. That is my reality.
Healing will come. In our dear Savior's time, He will free me from this body that is ridden with disease. He will rush me back to His loving arms and bring me home. In that day, the pain will cease. The torment of my body will be over. The earthly fight will be done. Then, I will be taken home and freed from all of the frailties of this mortal body.
In the day that I am needed in the Spirit World instead of the mortal existence, I pray those left behind will find peace and hope. That they will be comforted knowing that I now walk free from pain. Free from a diseased mortal body. Free from the restraints of a body that will no longer do what I wish it would. I will be surrounded by those that have gone before me. I will be encircled by their love. I will be free.
I also am assured that although I have made my fair share of mistakes that our Savior is kind and merciful. I know that His mercy, will be brought forth and outweigh justice because I have given my all to repent daily and come to Him. I understand the plan of salvation. I understand that this life is but one step in the plan on our journey.
I know that once free from pain, my Savior can again use me to further His work. The adversary is trying to defeat the children of God. The Savior calls all who, are willing to protect and save His sons and daughters. He has called me to go after the one. The one whom is lost and struggling. The one who is lost and alone. The one who believes they are not worthy to return. I am to help gather His sheep.
I'm not sure of the future. I know that the gathering of our Father in Heaven's precious children is a work that goes beyond this life. It is a mission that starts here and continues there.
I know that once gone, although my dear husband and son and family and loved ones will not be able to see my face or feel my touch, that I pray they will feel my love. I pray they will know I am near. Just as in this life, I will hold them dear and pray for them and plead with our Father in their behalf. I will do all I can to protect them and guide them and teach them to follow our Savior. I will not be gone but simply unseen by human eyes but felt by spiritual eyes and hearts. I will be near. I will help. I will do my all to help and give service in everywhere and every way I can. I will assist my precious Savior is His holy work. I will be His servant.
I also know that the Savior can do a better job with all things than I am capable of. I know this includes raising Hayden. I've taught him how to follow our Savior. And I will continue ue to love and cherish and help him. But the Savior can do so much more than I could ever dream of.
I have been promised that when my time here is thru, Thomas and Hayden will have the Savior, many guardian angels and the Holy Ghost to comfort, protect, guide and love them. They will be taken care of. They willbe loved.
I'm grateful,for a blessing that assured me of my role and my Savior's. That clarified understanding and taught important gospel truths.
I love my husband. I cherish him. I love and adore my son. I love my Savior and loving Father in Heaven. I'm not sure what the Savior's timeframe is. I'm not sure how much longer I will be allowed to remain here and when my body will have had too much. But I know it is in my Savior's hands. His timing, His love, His plan is perfect. That is what I am depending on Him.
We have knelt down together as a family and each of us have utter the words, "Thy Will be Done". We each mean it. We will follow the Savior regardless if that is remaining here with my family and enduring to the end or if it is the end is near, and my time is short, that when I go, it will be ok. I will be ok. Thomas will be ok. And my son will be ok. I trust our Savior. I know He loves them more than I do. And I will entrust Him with my most cherished blessings, my loved ones.
I testify that our Savior lives. He lives. He loves us. He is intimately aware of our needs, desires, hopes, dreams, challenges, heartaches, our anguish, our pain, our strengths and our weaknesses. He lives to comfort and guide and protect and love us. Of this I bear witness. I know that my Redeemer lives!!!
Thursday, May 14, 2015
And the plot continues....
Insurance again denied all. Everything.
I contacted the doctor office. The doctor is still gone. There is nothing they can do.
So. We search. Search for answers. Search for options. Search for help. Search for resources outside of medical world.
We are looking into alternative treatments in Mexico and other places. We are reaching out to all natural doctors. We are praying and pleading for guidance and help.
Prayers are appreciated. Please pray that we will be able to embrace, accept and do whatever our dear Savior asks us to do. We have put our trust in Him as we seek further understanding and knowledge. We have told Him that in all things, "Thy will be done."
We love our Savior and loving Father in Heaven. Our desire is to so what He asks. We trust His path. We give Him our true devotion. As we try to seek His ways and path He desires for us, we pray that doors will open and we will find His will.
We are watching one of the Star Wars movies tonight. The fight between good and evil is real. We came to this earth to receive a body, choose good over evil, remain true to our covenants and promises made with our Savior, and to return to His presence. As I watch the fight between good and evil, I feel such a pull to do our Savior's will. To fight.
As we watched Anakin turn from the Jedi Force to the Dark side, I was reminded it is the small steps and small decisions in which we determine our destiny. Do we allow anger and jealousy or hatred and entitlement to cloud or judgement? Or do we remain faithful and humble and patient and willing to submit our will to that of our Savior?
I find myself at a crossroad in life. One where anger and resentment, frustration and entitlement could take over. Where frustration over fairness and long-suffering could easily be cultivated. I will not let anger or fear or frustration win. I will be patient. I will humbly submit to all things the Savior sees fit to have me walk. Regardless of the outcome. Regardless of the pain. I choose love, hope, repentance, goodness and our Savior's will. Until my Savior can say of me, "the force is strong with this one."
And I may have feared up a bit when Yoda said, "death is a natural part of life. Rejoice for those around you who transform into the force."
And I smiled as Yoda said, "Patience you must have my young Padawan!" I wonder if that is what the Savior is saying to me. "Oh Jerlyn, have patience." I'm sure trying. Whatever lies ahead. I'm willing to submit.
Wednesday, May 13, 2015
This morning I woke up determined to get to the bottom of this treatment/insurance dilemma. I called the dr office and was told that insurance wasn't responding to their request. I was furious and done. I lost it and started sobbing to the nurse oractioner at my dr office. I was gasping for breath and struggling for air to fill my lungs. I'm getting sicker by the day with no relief. This dr was supposed to be the answer. An appointment in February has brought almost 3 months of waiting and hoping for relief as I digress daily. I sobbed. I asked for the insurance reference number.
I contacted insurance ready to just let them have it. However, they stopped me before I could start. Which preautorization was I calling on. Procedure not pharmacy. The representative asked which open case? Which open case, you guys denied the first request to IVIg, I am talking about plasmapheresis and the procedures regarding that. I was told NOTHING has been denied by insurance but my dr hasn't filed the necessary paperwork to process either request. WHAT? Did I hear that right? My mind spun to each conversation and each word with the dr and his assistant and other staff. What? Ok mind. Process. I listen. I ask questions. I start to cry. I lost it. Again I was gasping for air. The insurance representative told me not to cry they were on my side. My side? You won't let me get treatment?! I am dying! Literally dying a slow and incredibly painful death with little relief. Each day I hurt more and cope less. Each day the fight to keep positive and hopeful and not give up becomes a greater challenge. Each day, each minute the pain escalates, my breathing deteriorates, my walking becomes more difficult and enduring feels more impossible. They have killed me. But now I question who is "they"?
Answers slowly come and more questions invade my head. If this is true? Could it be? But Thomas and I sat across the drs desk as he told us of conversations and denials. New procedures and less hope. I was told insurance denied but as I spoke with insurance, the more it looked like who I trusted had ultimately betrayed me. The one supposedly helping to save my life was indeed the one slowly killing me. Wait? Wait! My head screamed for it all to slow down and I plead for help from my Savior to recognize truth.
Then the insurance agent told me facts and dates and things I knew that she had to be telling the truth. Then she cautioned me. I need a dr I trust yet only 2 in the staTe. My current dr and prior dr. The question was posed. "You need life saving treatment. You need to be able to trust your doctor. Do you trust someone to make decisions with your life that is able to lie to your face? Proceed cautiously. If you push hard, your doctor will no longer treat. But do you trust someone who is dishonest?"
My mind spun. What do I believe? Who do I believe? If he lied to me about conversations and denials and convinced me into experimental treatments why? What gain do they have? Why lie to me? Is Mayo clinic right??? Is there nothing to be done? Is death imminent? Am I going on false hope and security? Am I being flattered by hope? What do I do? Where do I go? In whom do I place my trust?
Overwhelmed, I plead for understanding and enligtenment. I plead for help sorting through this info and the ability to decipher truth. I thought I was. Good judge. Yet I have been deceived. I feel anger and disgust, frustrations and disappointment and confusion and helplessness.
I do recognize these feelings are NOT from my Savior but the adversary. How do I sort thru this mess and have the Spirit with me. Only one way...., forgiveness. Really, I thought. I am only just finding out about this. For three months I have digressed and been in increasingly more pain. I have begged for help and lied to. Yet, before I can sort thru these feelings and emotions and discover the truth, forgiveness and complete Christlike forgiveness is what you are asking of me.
The words my Savior spoke on the cross swept my mind. "Father forgive them." Forgive them? Really? Keep,going? Keep trusting? The blessing said this dr was a good man that listened to you. Then how did this happen? Again, forgive them, entered my mind. Forgive. Forget. Move forward. Don't let hate and anger poison your heart. Really? Do you understand how hard this has been? Do you know how much this has hurt me and my family? The endless torment and frustration this has caused? The thought that my life wasn't worth saving and the one that I am supposed to trust lied and you tell me to forgive. Now. Immediately. Completely.
The answer comes clearly. Love. Jerlyn. Love. I am love and hope and concern and care. I am better days and brighter tomorrow's and clearer paths. I am love.
The adversary is revenge. And anger. Hopelessness. Pain. Mistrust. Confusion.
I am light. I am truth. I am love. I am forgiveness.
So my choice. To move forward and if s answers but you are requiring me to forgive and let it go. How? His response: Fill your heart with my love and my peace. "Peace I give unto you. Not as the world does. Peace I give to you. My peace. My love."
I stop. I listen. How? I don't know how. I'm so so so frustrated. I want help.
Move forward, Jerlyn. I know the pain. I have suffered it already for you. All the pain and injustices of the world I have already bore for you. You do not have to. I will and have already done it for you. Your job is to forgive.
I plead for forgiveness and understanding. I prayed to be the person my Savior believed I could. I begged that anger would not take hold of my heart. I'm trying. I'm. Trying. I. Doing my best. I'm pleading for a forgiving and accepting heart. I am pleading for hope. I am pleading for answers. I am pleading for my Savior to teach me while I look for answers.
My world flipped upside down today. I wanted to give in and collapse. Instead mymSavior requires me to stretch and love and offer Christlike compassion to the treaspasser. I will try. I will give my all, but am praying my Savior, like always, will be patient with me. For I have a long ways to go......,
Sunday, May 3, 2015
What a fun weekend.
We played Logo Party and Apples to Apples. We played dice. We played pinball games and call of,duty. (Ok I slept. They played video games.).
But, five teenagers and four dogs do keep things hopping. My dream would have been to have 5 kids. Maybe not four dogs. And it would have been a fun and crazy life. I love the dynamics yet they would have also been crazy. Life is funny.Who would have ever thought that Chloe would decide even she liked me.
Saturday, May 2, 2015
Thursday morning was the long awaited doctor appointment to find help. It started out turning my emotions on edge when I was told my appt was actually the day before and they couldn't get me in for over a months. Tears fell. I was so tired of just holding on. So they agreed to get me in an hour later. That I could deal with.
Dr Levine started out with the facts. He is straight forward. No-nonsense. No niceties or formal introductions merely facts. He explained the complicatedness of my situation and how with so many disorders and so many things against me that cures are not possible only prolonging and hopeful better quality of life. We listened.
He explained that insurance will not approve IVIg treatments. But in scouring my file he had another idea. I transplant form of plasmapheresis. I will surgically have a catheter and port implanted into my heart. From there, bi-weekly, I will have all of my blood drained, thru my heart. The antibodies and anti-coagulation plasma will be removed from my blood. It will be re-oxygenated and put back in. I will also have to go on medications as they will be adding plasma and healthy blood to my body.
The doctor will use this as a treatment and a diagnostic tool. I will also change medications to Northera. I will be taken off midodrine. He is hoping less seizures and passing out. More energy and less debilitating pain. I'm hopeful.
From there we will evaluate and continue to change and modify meds and treatments.
Without treatment, I will not be able to hold on much longer. So I'm grateful for options. I was so scared. It is so scary to feel yourself literally "dying". Each day I am weaker and worse than the day prior. Each day I have been fearful of my last days. I try hard to say what i want said and am careful about making sure my relationships are in order. I can feel my life slipping from my body. It's frightening yet I know death would be an end to the pain and torment. But I can't bear to say goodbye.
I will fight. I will try. I will give my all. I will do whatever it takes. Absolutely whatever. I love my family. I love my Savior. I trust my Savior. I know my Heavenly Father lovingly wraps His arms around me. Because of Him, I still live. Because of. Him, I have hope. Because of Him, I will be able to live again with those that have gone before and those that will live after I am gone. But I am grateful for more time and more hope and more help to continue to walk this life.
I'm praying for a successful treatment. I'm trying to focus on the benefits not the pain and side effects. I ask all reading to please pray with me. I know pray works. I know it is a great blessing. I know I am known by God on high. At that is comforting and gives me strength and courage to keep going.