Enduring ongoing adversity

SUNDAY, MARCH 15, 2015

Enduring ongoing adversity  

There are so many differences in all our lives. Depending on the circumstances, new mothers sometimes feel overwhelmed, fathers feel pressured to care for families, and some struggle with loneliness. We all have at least one challenge in common. Dealing with some type of adversity. I’ve also realized the reality of those adversities cannot be compared. For example, I struggled as a teenager with severe issues for years. It was heartbreaking to live through, especially knowing that life would be much easier if I were obedient. One day I went to visit a friend who was devastated and beside herself in tears. When I inquired what was wrong, I was shocked at her answer. She mentioned her daughter’s name, and then, through her tears, she explained, “She broke a family rule and got her ears pierced; she’s only 15; we agreed no ears pierced until the age of 18” Her perspective, and her trial was nothing like what we were dealing with, however in her family it was obviously just as heartbreaking.     

There have been periods, sometimes long times, when my life seemed to flow with little difficulty. Unfortunately, the nature of our lives gives way to distress; for me, periods of good health have ended, and misfortunes have arrived. It is more difficult when the comfortable times have gone on for a while. Suffering from health issues or losing material security can bring fear and sometimes even anger. I must be transparent here and admit I have felt rage and questioned why? I realize the anger comes from a feeling that what is happening is unfair. It came as such a shock. To be blessed with good health all my life, the serene sense of being secure had become deserved and natural, like an arrogant ignorance. Hadn’t I proven my worthiness and loyalty to the Lord? For this health issue to continue for over 5 years, a feeling of injustice has sometimes come to my mind. I have considered myself a brave woman, yet many times have cried aloud, “I have always tried to be good. How could this happen?”

The opportunity to face adversity and affliction is part of the evidence of infinite love. God gave us the gift of living in mortality so that we could be prepared to receive the greatest of all the blessings of God, which is eternal life. Then our spirits will be changed. We will become able to want what God wants, to think as He thinks, and be prepared for the trust of an endless posterity to teach and to lead through tests to be raised up to qualify to live forever in eternal life.

There is an aching sometimes for an answer to “How could this happen?” It becomes even more painful when I see others struggling, including those I love. When Recker was diagnosed with Autism, I wouldn’t say I was devastated, but I was honestly asking, “Why?” It was tough for us to accept when he was so innocent. Then having our second grandson diagnosed with Autism, I must be honest, I rocked my testimony, hitting my knees continually asking, “Why, why would you send these spirits to the same parents?” This distress can shake faith in the reality of a loving and all-powerful God. I felt the spirit continually reminding me the Lord knows all, and if I continued without faith, doubt could grow and spread. It could make me, or my children turn away from God, blaming him for the thought of him being indifferent or cruel. I knew I needed to check in with Him daily, or those feelings could lead to a loss of faith and question whether there was a God. Again, I found myself asking like I did several months after processing a cancer diagnosis....” why me?” with the comforter conveying to me repeatedly, I soon asked, “Why not me?” It takes time to get that pain to go away, but I can honestly say now, “Thank you, Lord, for blessing us and trusting us with these two little boys” (I am not speaking for Jeremy or Kayla, I’m not sure they are feeling the same.)  What a pure love they have for us and we for them.  

It soon became apparent that for me to trust Him, I must be transformed by making righteous choices daily, which is hard to do. I often wonder if I am prepared for such a great trust. Passing through trials and testing requires a great deal of faith. I deal with facts, and the education for me could come only as I allowed myself to be subject to trials while serving God and others for Him. I’m so grateful for this education as I experience misery and happiness, sickness and health, sadness from sin, and the joy of forgiveness. I’m convinced that forgiveness can come only through the infinite Atonement of the Savior, which He worked out through pain we could not bear and which I can only faintly comprehend. It comforts me even to know I must wait in distress for the Savior’s promised relief that He knows, from experience, how to heal and help me and others who suffer. Faith in that power has given me patience as I pray, work, and wait for help. He could easily take this away, but He chooses to teach by personal experience. Just as I need to learn from my own subjective experiences. The Lord’s relentless answers to my pleading have helped and encouraged me in times of darkness. Even when I feel the truth of the Lord to deliver me in my trials, it still tests my courage and strength to endure. Lately, it feels like it will not end; during these times, even physical strength is complex, and listening to RS lessons on how to deal with trials and adversity is hard to comprehend. The comments made are even difficult to hear. (Sorry just being honest) I have seen faith and courage come from my testimony. I am being prepared for eternal life. The Lord will rescue His faithful children. The child who accepts a trial as an invitation to grow and therefore qualifies for eternal life can find peace during the struggle. This is so much easier to write than live through. I am far from perfect, but I have begun to prepare my heart to be worthy of the Lord. I’ve had the attitude, “Things will work out.” Medical insecurities have not eroded my faith but have tested and strengthened it. And the feeling of peace the Lord has promised has already been delivered during the storm. Other miracles are sure to follow. I expect miracles to happen and thank the Lord ahead of time for the gift that I know is just around the corner. I watch from a distance how Kayla and Jeremy have embraced the trial they have been faced with.

Recker and Ezra are beautiful, loving children, but don’t mistake their love and affection for an easy road to take. From day to day, they struggle, not knowing “what will happen next?” Those boys are into everything. Recker and Ezra are both non-verbal, so imagine their frustration knowing everyone around them can talk. Their only way of communication is by taking us by the hand and leading us to what they need or want. I can only translate my feelings as a grandparent, not as a caring parent for 24 hours, worrying 24 hours. The special bond these boys have with their cousins and family is unconditional love. However, I can’t imagine the heaviness on his parents' shoulders. The responsibility the Lord has given them is beyond what I can comprehend. I know I am on the road to being the best I can be, so I can live with these perfect little boys for eternity. I don’t know why, but the Lord customizes trials to strengthen and purify us individually. Often it will come in the inspiration to do what might seem especially hard for the person who needs help himself. The test, and there is always a test, is how we deal with the trial. From my experience, I know that He can and will give us strength to rise through every problem. 

Love came in a box

MONDAY, JUNE 23, 2014

Love came in a box

Update on the last couple of days.  It has become tough to be so far away from my family; I miss them and love them so much. I have tried FaceTime with them, and most of the time, it works, but on those days, it doesn't work my heart is a little heavy. I miss my Recker Love and Ezra's smiles and giggles. I'm so afraid they will not remember me when I get home.  With the changes in my face, they were already beginning to doubt my relation to them before I left.  Eric, Blake, and Chloe have been in the Dominican Republic for 10 days--I intended to go with them; this trip had been planned for quite some time; when my sudden surgeries took precedence, Eric immediately wanted to cancel the trip, and I begged him not to. I thought it would be a great bonding time for Blake and him. I was correct; they had a wonderful time and are all on a flight back to Arizona. While they were in the Dominican Republic, they had the opportunity to work with Dr. Kelly, a surgeon Chloe works with, his family is also dear to our family, and we adore them. Dr. Kelly is a surgeon and has been going to the Dominican Republic for 3 years to serve and give dental surgery to those in need, those who otherwise would not have the money to pay. I will never regret having them go, it has been brutal here in Cleveland without family, but I feel blessed to have modern technology where we can see and talk to each other through satellite. I felt the spirit telling me to have Eric go; it was so strong that I told him if he stayed home, I would not come to Cleveland Clinic or have any surgery....it meant that much to me for him to go. He has not missed out on one thing here, I have had to entirely rely on the Lord to help me make some significant decisions; it has been an excellent opportunity for me to get closer to my Savior than I ever thought I could, I have one spiritual experience upon another, and I know this is where I should be.  I am not sure what the outcome of this surgery will be, but in my heart, I know I should be here.

Kaitlyn always sends me pics of the boys
love love love

Haleigh with Ezra and Recker, thank you
for brightening my day

I got a knock at my hotel door this morning; it was a postman (weird on Sunday) who delivered a package from the people in my home ward.  When I opened it, a gust of love took my breath away. It was filled with cards, notes, gifts, and love from all the people I admire and love so much who live in our ward.  I was overwhelmed with the spirit as I read each one of the cards and notes repeatedly. I had no idea I was so loved.  I will never be able to thank each one of them, but I have FAITH & HOPE in knowing they know.

Thank you, thank you

Marian Priday--The source of putting together my box of love

 Eric and I moved into this ward when I was 30. Haleigh was in the nursery; all my children were baptized while in this ward. I was dealing with family matters that eventually ended sadly with my mom and dad cutting ties with me. Wally Slade was our Bishop, and since then, I relied so much on the women and men of this ward for an example. It was one of the most challenging times of my life, and I am so grateful to have moved where we did; I had to learn how to parent these little children of mine with lessons from Relief Society, I soon found the Lord leading my eyes and heart to watch and learn from the people around me. Most of those people are still in the ward, but our children grew older as new people moved in and out. Teaching teens to hold to the rod was harder than I thought, and again I listened with my heart and watched with my eyes, there are too many people to thank, and most do not even know the example they have been.

This morning I went to the Shaker Ward it was about 10 minutes from my hotel...everything was pushing against me to get there on time--I needed to check out of the hotel, and barely made it to Sacrament. I felt at home as I walked in, sat down, and was able to, with a very still soul, partake of the sacrament. There are two things I would change, the bread for the sacrament (thank you, Junel Durfee) and the music I kept thinking to myself, "we have such a powerful man behind every note played in our little 6th ward, and his name is 'Stephen Phelps' tears bubbled up and rolled down one cheek I miss my home ward.

I was glad I had on my mask and eye patch, two reasons 

• 1. No one could see my eye, and tears only fell from one eye.  
• 2. With the mask on, they could not see my crooked smile, a little girl walked by, and I smiled at her with my eyes, and she smiled back. I will never forget this little girl. She sang 'I'm trying to be like Jesus' with an angelic voice; I closed my eye and listened. It was beautiful. 
• Then the counselor conducting the meeting announced how the meeting would go from that point. It was something I had never seen before--and I loved it. He said they were going to have a Hymnology. It was a normal thing that they do a couple times a year, and today was the day; how blessed I felt to be there.

It is something like a testimony meeting. Only whoever feels the spirit goes to the podium and tells of their favorite Hymn and why the congregation sings the song. The list of Hymns was some of my favorites too. 

1.  Count your many blessings 

2. Praise to the Man 

3. Love at Home 

4. Where Can I turn for peace 

5. Master the Tempest is Raging  

6. I know my father lives 

7. Because I have been given much 

8. The Iron Rod  

9. I believe in Christ and 

10. Sisters in Zion. 

This ward is filled with multi-cultures, and it was refreshing to see and hear from members of all races.

Sister Franklin

Bore such a strong testimony today

Sister Franklin and her Nephews

 A little boy with Down Syndrome walked up to me and hugged me, then said, "Hi" he reminded me of CJ Udall-- tears filled my eyes, but then what he did next was even more touching, without knowing I had a BAHA implant in my head, he turned around then back and looked at me,  took my hand and placed it on his BAHA, he too has SSD (single-sided deafness) I have yet to meet anyone who has a BAHA. I have no idea his name, but I will never forget his piercing eyes as he stared into mine. At that moment, I could feel the Savior's love all around me.

When the meeting was over, I was filled once again with the strength to get through this week as I prepared for the next surgery.  Today has been a day for giving me inspiration to continue on, knowing whatever the Lord has planned for my future is His will. Although I may not understand why things happen the way they do, I can rely on Him to get me through ALL of my journeys here on earth until I return to Him again.

 

The 'Give and Take'

 

TUESDAY, JUNE 17, 2014

The 'Give and Take'

He's at the door waiting to hear from us

It's late, after midnight; I need to sleep but can't. Not much has changed; sitting and waiting is so hard. Today, Cleveland Clinic surgery schedulers called to get me one more appointment with one of the surgeons for Thursday. Also, I need to make an appointment with internal medicine and finish all my lab work. After I speak with the surgeon on Thursday, I will better understand what they are going to do to me, how they will do it, and make sure my insurance covers all of this. I've always said everything happens for a reason, I know the Lord does not just toss us out into the world without an answer, but sometimes life does throw us under the bus. Tonight, I went into the bathroom and did my ritual of staring at my face and saying to my eyebrow, "MOVE" repeatedly.

When I had no luck there, I did it with my eye "blinking" over and around, really concentrating with my brain on making my eye blink--it did two times--it is funny to watch me do it, but if a positive mental attitude can help me regain movement, even if just a little then I am successful. It tells me I have the strength to retrain my brain to get those wires reconnected. One last try with my lip, I say, "SMILE," staring at the right side of my lip...I think I may have seen a slight movement...It may not happen today, but when I least expect it, it will happen; I'm not sure how long I'll have to wait. Sometimes I wonder if Heaven is even listening to me. Do I need to change my prayers? Tonight, after my facial ritual, I sat on the floor of the small bathroom, turned off the lights, and prayed. I know God has heard every prayer; Heaven often surprises me when I least expect it because tonight, I felt the spirit--yes, right there on the floor of a hotel bathroom. Who would ever expect to get an answer to prayers while sitting on the dirty dark bottom of a hotel bathroom? Not me.

Today, I needed to go out and get some food for my hotel; a little girl was with her mom and grandmother; she was about 4 or 5. She pointed right at my eye as I walked in and said, "hey, what's that on your eye? do you have an eye?" Her mother was mortified, but I stopped her and said, "Oh, I'm OK. I just have a little boo-boo, so I'm keeping it covered."  Then she proceeded to show me her boo-boo on the heel of her foot, the band-aid was coming off, and she told me, "It's not a real boo-boo; it's just for play"  I started to smile then realized that doing that would create a whole new conversation, so I just shook her hand and told her to have fun with her mom and grandmother. They apologized, and I told them they had nothing to apologize for; I appreciated her asking instead of staring--her little brain is learning, and this is her way of processing. They were genuinely kind and apologized again as they walked away.

It's interesting how the Lord gives me sight when I can't see. This experience gave me a new perspective. It was exactly what I needed. He took my doubt and replaced it with the truth. He took my fear away; all I could feel was Him. He takes me as I am, by the hand He sees into my soul, and He takes just what I need; so many times, when He is refining me, leading me through the bittersweet, I'm trusting him to make me complete. I may never be the same Monya as far as my physical appearance, I know He sees my heartache, but He sends His sweet grace to help relieve me of those days when I feel my HOPE fading. I know this 'give and take that the Lord seems to be guiding me through over the past few years has blessed me to see that 'giving and taking away are exactly what I need to get me through those bitter/sweet times. I'm hoping through this refinement I am going through now. He sees I am worn out, trying to keep up, and I can be left alone for just a bit--I'm not sure how much more I can take.  

Be a Light to those who walk in the Dark.

 

SUNDAY, JUNE 15, 2014

Be a light to those who walk in the dark

Today is Sunday; I wanted to go to the Kirkland Temple or a nearby church. I wanted to take the Sacrament, but today neither one happened. I am watching the conference from my laptop tonight and listening to the Slade Family music and the Sound of Music soundtrack.   My eye is getting worse daily, and I fear losing it altogether. I've been keeping it hydrated and covered with a patch, but when I take it off for some relief--all I see is cloudy...don't be surprised if the spelling on this post is wrong.

This is a little city--white coats everywhere.

I've been praying for a surgery date--tomorrow, I hope something will be accomplished; I'm ready. I want to get home and be with my family--Sundays are the nights we all get together to have dinner and family home evening; oh, how I miss them. Since we've been empty nesters, it's been tough for me; I love my family around--if I had my way, I would have them all move back in with us. I haven't seen my grandchildren in 2 weeks--I haven't seen my children in 2 weeks--Eric and I Skype, so I get to see him, Blake, and Chloe every day... I WANT YOU ALL TO UNDERSTAND THIS:  Eric and I had been planning a trip to Blake's mission in the Dominican Republic; when I was in the hospital, Eric wanted to cancel; when we decided for me to come to Cleveland, I told him he has to go on the trip with Blake no matter what, just cancel my flights. Of course, he was not going to do that. Eric wanted to be with me, but I had a powerful feeling he needed to go and spend some time with his son; Blake will always have those memories to look back on when we are gone. Still, he insisted on being here. I told him if he came here, I would cancel the surgery and go home, which made him think. He knows when I'm serious, so he and Blake left a couple days ago; I've been talking to them every day, thanks to modern technology. Chloe will be working with Dr. Kelly in the Dominican Republic, so this is good dad/son bonding time. I told Blake this morning to have a great time and not worry about me; all Eric and he would be doing is sitting around (just like me) waiting for the scheduler to call. Besides, the time I've had alone has allowed me to reflect, process, and get back on track with the spirit. I have had some life-changing spiritual experiences while fasting and praying for answers.

The two primary sources of most importance are my eye and to see if the bone is infected. I'm not sure about the look, but I feel strongly that my bone is good, with no infection. I do not leave the hotel without a patch on my eye; the wind blows a lot here, and it is excruciating on my eye. It gets really red. I have no peripheral vision out of the right eye. Not a good combination, deaf in the right ear, and can't see out of the right eye--boy, I'm a mess--
  
I thought today, the body is so perfectly created by our Heavenly Father. When something is not working correctly, we take note of it. I never realized how important it is
to be able to blink your eye--or how much people stare when they see someone who is not looking like the typical person should look.  
A little boy was with his dad and said, "Daddy, what's wrong with that lady's eye?" The dad quickly scooped him up, trying to distract the little boy with a flavor of ice cream; he asked his dad again. I looked at the little boy and said, "I have a boo-boo, and I'm just trying to cover it so it won't get worse."
I could see it bothered the boy's father to have me explain it. The little boy said a few minutes later to his dad, "what is wrong with her eye, dad?" No answer. I was trying my hardest not to laugh; I love little children and their ability to say it like they see it, but the father acting like I was an alien was a little bothersome. I waved goodbye to the little boy, and off I went. Seeing out of only one eye when I have the patch on is strange; every step I take is difficult because my brain tells me the curb is closer than it is; I look about as gracious as a bull in a china shop. I have run into walls, stepped on my own feet, dropped or grabbed for things that look closer or further than they really are.

The body is a fantastic creation; when it is not working as intended, all of what you learned must be retrained. My mouth does not work like it used to either (I know most people are happy about that one.) I can only eat tiny bites of things, they need to be cut up, and I can only eat on the left side. Sometimes, it is such a chore. My speech is OK, but hard sometimes to say my "P's and B's"  I have to hold my cheek out while I talk so people can understand. While I Skyped with Eric and Blake this morning, he couldn't understand what I was saying, so I held my cheek out. We laughed about that one. One thing I've learned in the past 5 years is that I am not in charge; Heavenly Father is testing my knowledge of HOPE,  in my ability to listen to the spirit and step forward with FAITH.

I'm still staring at the mirror  15 minutes a day and telling my eyebrow to move, my mouth to smile, and my eye to blink.....guess what? It's working today. I caught my eyelid flashing a couple of times while concentrating on it. When Eric and I first got married, he used to make me stand in front of the mirror and tell myself. "you are beautiful, you will succeed, and you are going to have a great day"  I felt weird doing that, but it worked--I've never met a more positive-thinking person than him.
My face will work again; I know it will--just need to practice a Christlike attribute--patience.

I always despise the beginning of anything, but I'm starting to embrace these changes. I've been told I will never look the same again, well, maybe physically, I won't, but all these changes keep me alive and open to new challenges. So now it's time for one more change: I will survive, and I will go forward no matter what the doctors can or cannot do. I live in a world full of people who feel forgotten; they are not alone; I want to find a way to help them find their happy places, despite whatever trials they face. I have given my heart and soul to HIM and the doctors; I want to be a person who gives more than she takes--listens with my heart--smiles with my eyes--and give back every day I breathe to help someone in need. I did a smile project while I was going through my chemo treatments--

http://monyabonbon.blogspot.com/2010/03/my-smile-experiment.html

I have a new project; I'm in the process now and will tell you about it when I get my results. My focus now is embracing the new Monya--still the same heart and personality; I'm trying to get refined around the edges. I have no doubt that my Heavenly Father knows the strength I have in me; I know when I kneel down for help, he WILL answer back. However, I also know from experience it is not always the answer I want. I've tried all my life to be a humble servant. I've felt healing power in my life and in the lives of others. I have a grateful heart; right now, I feel calm and quiet, and the stillness of what I'm feeling draws me near to HIM. It makes me want to be a better daughter of God by serving others and giving back what I'm learning. Even though I'm far away from home, I know there is someone I can always turn to, and He is just one prayer away. I realize this road ahead of me is long and hard but not devastating--I am concentrating on Happiness in my life--giving and sharing what I know can help others. I am still in this school of learning that we all call LIFE. When I look back at where I've been, I never saw these challenges in my future. I imagined it much worse--I have truly been blessed with a beautiful life, an eternal companion I call Frenchie, 4 exceptional children, and 2 of the best grandchildren who can light up my life with just a smile, I have FAITH in my future, I want to look back on all of this and see that I did what was right when no one was around watching--keeping my eyes on Eternity,  I want to be a light to those who are in the dark, I want to bring them into the light and see what I see--I am the only one who can decide how I live, and I choose to LIVE HAPPY.

Smile with your eyes--

FRIDAY, JUNE 13, 2014

Smile with your eyes--

It's been almost 2 weeks since I've been in Cleveland, getting opinion after opinion. I have finally found the surgeons I feel perfect about. The process they propose will take a few more surgeries than I had anticipated, and I really did have to place a lot of faith in my Heavenly Father to make decisions that will not only help the look of my face but also the newest procedures in medical technology. I asked all the right questions and, most importantly, how often they performed this procedure. The Doctor I chose said he does this every day, with 98.8% satisfactory results with patients. I really liked him, and he explained all the medical procedures in a way I could understand, just like Dr. Kreymerman used to do. In fact, I've spoken with PK several times about my methods and doctors, and he is confident I am in good hands here at the Cleveland Clinic.

I've spent most of my time in a hotel waiting for doctors to call--and you can believe every morning they get a call from me asking if anything has moved closer to a surgery date? Nothing yet.

Yesterday while I was at the Cleveland Cancer Center, I had a panic attack in the waiting area--I was not prepared for it at all. A swift whiff of chemo threw me off--that smell was oh so familiar--there were a lot of sick people all around me--all I wanted to do was hug them, help them, talk to them,  laugh with them, spread some happiness with them--all these emotions raging through my body--I wanted to run, just run away as fast as I could--"Monya Williams" across the loudspeaker shook me out of that odd place I was allowing myself to go.

Routine questions by the nurse--my legs were shaking, I hate sitting still while I have those panic attacks--it's literally impossible, but today I sat and stared out the window at the beautiful trees and floral; it's incredible how the Lord is always there when I need to be shaken up a little and brought back to reality--I can never deny how it makes me feel when I have these moments--I know He heals-I know His love is real-I've seen the truth revealed to me--I've felt the truth of His passion ---I'm proof of His unconditional love-- I've been praying and searching for answers, I know He has to lead me with His hand and by the spirit to this Cleveland Clinic, but at times I'm lonely I wonder if I should be home helping my daughter with two small children, she is having surgery on Monday to have her tonsils taken out---I wish I could make time stand still sometimes--make everything in life perfect, just for a minute or two. I could really use a batch of Recker and Ezra right now--if I could, I would ask our Heavenly Father to let time stand still just for time enough to go to each and every person who has touched my life and spread happiness in my life--I have seen so many of my friends of all religious believes come together and unite as one, as we stand together our cause is more significant than we will ever know--we are not just living in a weak world, we have so many around us that do know right from wrong and are strong in their convictions--I WILL always choose His way, in a world where there are so many who will not follow our Heavenly Father, I. Many friends have made private commitments that we WILL stand for truth and righteousness.

Now it's time for me to meet a new doctor, another surgeon on my team who will be helping during the surgery--I really liked him; he was animated and excited as he gave me his rundown of what he thought was best for my individual situation--halfway through his explanation he lost me with his medical jargon I asked him to slow down and explain it in "blonde" terms. He smiled and reviewed every option; he also typed it out and gave me a copy to process it. Basically, this is what we discussed. I have no proper ear function and a large mastoid bowl with a fibrous base.

The ear is a significant emergency that needs to be taken care of asap; however, believe it or not, my eye is the most critical issue right now--I am in jeopardy of losing my cornea and having to get a cornea transplant. He will put a gold weight in the eyelid, allowing me to blink when my brain says it needs to. However, there will be some training and re-hab on my part.

There is significant concern about the boney loss in the mastoids that have been removed; this will need some bone resection.

All surgeons agree that a sural nerve jump graft is necessary if an excellent frontal nerve stump can be found. In English--- if there is a good nerve they can use, they will do a nerve graft from one side of the face (left) to the right side. It's best to not let this wait because of progressive osteomyelitis changes. If this is the case, they recommend a more straightforward reconstruction 1st, which most likely could be done with an SCM (google that) flap and skin graft. If this fails, I can get a radial artery-free flap. He explained all the risks and benefits and was able to answer all my questions.

He agrees with the other doctors involved this needs to be done asap; however, trying to get this many doctors' schedules in sync is difficult; all are willing to cancel a day on their clinic schedule but finding an OR for 12 hours is going to be hard.....and so I wait. He thinks it could be possible in the next couple of weeks, and the symmetry of the mouth and eyelid will be later. Basically, the surgery and healing will take over a year.  

My speech is difficult to understand; it's slurred on some pronunciations; I will have to learn to train my brain again...every day, I look in the mirror and say in my head, "move, I know you can do it, just move" to my eyelid" then again, I do this with my mouth. I try to eat on that side, too; it is challenging. I want to work those muscles.  

I'm having a hard time dealing with the looks I get from people; I understand why they look. When I smile, it is entirely crooked, today a group of kids were with their teachers at Barnes and Noble, and one of the kids looked at me and said, "what's wrong with that lady's face?" the teacher said, "she's smiling at you with her eyes" I walked into the bathroom stall, cried a little then realized ..... I always smile with my heart at Recker, my grandson, who has non-verbal autism. So many times, he stares at me with his eyes; I know we are communicating. I am going to start a happy, positive thoughts and actions experiment--if anyone wants to do it with me, let me know; I have an idea...I had some tears today, but through it all, I know I am where I should be right now, and it sounds like it's going to be at least a month.

It's Not My Time to Go

FRIDAY, JUNE 6, 2014

It's not my time to go

I was hoping to get my PICC line taken out today--NO SUCH LUCK--All the Cleveland Clinic doctors I see are out of town for a convention. It was also a suggestion that I keep it in until my surgery. I think I've finally made some decisions after talking to a few doctors; the proposal Dr. Barrs gave me is reasonable. However, three doctors have told me that taking muscle from my tongue is a temporary fix, and if I was an 80-year-old woman, they might consider that option. What they have seen work the best with someone with a dead nerve, like I do, is to take a nerve from my leg because it is the nerve that best replicates the nerve in my face. This can only be done if they find good nerves to work with in my ear. If there are no good nerves, they will take a muscle from my arm and connect it, close off the right ear completely with some tissue from my arm and bring in 2 other doctors who will help assist with this process. The plastic part of this surgery could be 6 months or more.

When the ENT vacuumed out my ear and cleaned it up a little, he said the inner ear looked good. All he needed to do was clear a place in his schedule, which I will not know about until Monday. This was good news; however, I am still cautious with my emotions; getting let down is so hard on me. He reassured me that my face would not stay the way it is right now, drooping on the right side. He said there is so much that can be done with technology today.

Right now, my head is in overdrive, trying to keep up with my health. Sometimes I feel myself slipping; I need the Lord by my side. I must get constant reassurance from the Lord that I am doing what is best for me--I live by every word and every answer I get from the Lord. I just need Him to let me know that I can do this. I would love to hear him say, "your faith is bigger than your fear, and you can handle this" Do you know how many times I have asked for the same things in the past 5 years? I have made choices that led me to nowhere, but I had to find out myself when I arrived where I thought I was supposed to be; it was a closed door--then I would have to get back on my knees and ask again for the Lord to actually take my hand and lead me to where I was supposed to be. He sees the way I'm supposed to go. If He would just take my hand and lead me there, I know I would be protected and safe, and I would know exactly what to do. This time it is different. I'm struggling, I sometimes wonder if I've been forgotten, and I sometimes wonder if I am even being listened to, it seems like the words are going to Heaven, but the door is shut. Sometimes I must be told NO to understand the YES, and to realize my Heavenly Father says NO because he has a better plan for me. It's just so hard sometimes to recognize the blessings that come in disguise;; I have seen so many miracles happen in my life--I had a very spiritual experience happen while I was in the hospital, and I don't feel comfortable sharing it right now, I shared it with my family the night before I came here to Cleveland.

All I know is that right now, it is not my time to go to Heaven...the Lord has work for me to do here on earth, which is why not getting clear answers is so tricky. I have no doubt He loves me and always will, through the good and the bad. Fear gives me to doubt sometimes then I learn that the doubt is because of my fear--I felt like I was finally in a good place in my life. I have studied the Lord's love for all His children, and it is hard to comprehend; I guess the only way to come close to understanding unconditional love is to have a child of your own. Never in a million years would I have imagined or thought I would be sitting in a hotel at 1:00 am across the street from a hospital, wondering if the Lord was listening to me. Does He know I need these answers? In this early morning hour, I am sitting in a bubble bath wondering if I have been abandoned by Heaven--realistically, I know that is not true--many people are praying for me--I have prayed for me, I've prayed for Him to take me on His wings and take me away like I can't do this anymore, I just want His sweet peace to pour over me and heal my soul,  I wish I could physically have His arms wrapped around me, give me some warmth, I want to go to the place where He can heal me, he's done it with other people, I need his mercy and grace to take me away, lead me to that place where I can feel no pain, no decision making.

Why can't my life ever just be every day? I have praised Him for every miracle that has come to me, I have given all I have to the Lord, and He has lifted me to higher ground and allowed me to see miracles happen--for some reason it is not happening as fast as I need it to--have I not done enough to be worthy of this request--I put my face in a pillow and screamed as loud as I could tonight--what am I doing or not doing to get the answers I need?

LABELS: CANCER, CLEVELAND CLINIC, DR BARRS, DR. BERNARD, DR. FRITZ, MIRACLES, PRAYER 

Mastering the Mundane

 

WEDNESDAY, MAY 7, 2014

Mastering the Mundane

It looks nastier than it really is...it broke last night. Today, I'm happy--not for any other reason, but I'm Alive, I'm Free, I'm Me--I will keep waking up, and I was still Monya. Still here, the sun is shining through my bedroom window; I got up and walked out onto the balcony off my bedroom--I remember the day when I could look out there and see the Superstition mountains of Arizona. Although, they are more like hills, comparatively to the huge Mountains in other parts of the world and country. For us born and raised here in Az we love our mountains.

 I realize I am living this continual roller coaster, one month great, and 3 months not so great.  I am always constantly wondering; what am I not getting? What is it that I should be learning here? I've tried to run and hide, I've tried to ignore it, I've even tried to pretend this is just a big joke...jokes on me.

When Blake was in the Dominican Republic and I was enduring the treatments of chemo and radiation, I often times went in his room and knelt to pray, begging and pleading with the Lord to take my pain away, asking why my son had to be gone for so long, I just wanted one more hug from him, thinking back now I remember those days as daily trials, things were happening so quickly I had a ray of HOPE, knowing Blake was given a blessing by President Greer the night before he left for the MTC telling him if he remained obedient the Lord would bless our family, and that I would be here when he returned in 2 years. I thought when Blake came home, the trials would magically end...after all Blake did all he was asked to do. He was obedient, he had the best two years of his life, and our family felt the overwhelming power of the Priesthood and the Holy Ghost with us, we saw miracles happen with my health.   I had it all figured it out, and I prayed thanking Him for bringing my son home safely. Little did I know, my journey was just beginning. Have you ever had a beautiful heart break written and sung by Hilary Weeks? Whenever I hear that song, it is as if it was written fo me.  Every fear I had and every pain I felt I would pray he would take it all away--I never dreamed I would make it through, now that I'm here where I am right now still with sleepless nights and continual fear, I don't think I would ever trade any of that for anything, nothing I say or write can come close to explaining the emotions I have had through this beautiful heartbreak of mine.

He wore those CARS swim trunks all summer

I love this...Blake thank you

dirty like a boy...he knew Boston was #1

Why get a bowl, bonbon lets me eat from the carton...shhh don't tell mom

Recker would live at the ocean, he never tires of it

Just like Blake was, Recker loves the outdoors

school picture--I love it

Today Recker was here, and I watched him swim, no words were spoken I just wanted to watch his happiness, I wanted time to stand still so I could remember every minute every second of his laughter. This little angel boy has brought me such happiness, I just want to squeeze him, I hope he knows I love him so much; I would gladly take away his trial, to hear him say "I love you" to his mom and ad.  Every parent deserves to hear those words, but with Recker he shows his love in so many other ways--I have an open wound on my upper arm where the doctor took skin to graft into my ar.  Today, when Recker was swimming he  scratched his knee and he showed it to me, I blew on it gave him a hug and he was off to jump, splash and play.....when it was time for him to leave he clung to me, not wanting to leave, I bent down to hug him, it was then that he saw the sore on my arm, and in an innocent pure gesture he took my face in his hands stared into my eyes, trying to communicate he lifted his shorts up to show me his scratch, then he kissed my arm. He was trying to show me, we were both scarred with bruises--at that moment I couldn't explain the rush of emotions that came over me, this little boy knew how to enter my heart, fill up my eyes with joyful tears that seemed to flow so easily today. I felt like my heart was bursting to understand, I could not catch my breath enough to be able to say, "I Love You", he kissed my cheek and then my arm. He took me by the hand, and we walked to the car holding hands, I hugged him like it was the last day I would ever see him again.

I gave a testimonial at one of our Nerium meetings, usually, I am composed because I have learned to say when people ask how I am doing, "it couldn't be betterer" I'm grateful when I least expect it, the clouds part and a ray of light reminds me who I am and that God has heard every single prayer today was one of those days I think because I have been so desperate for answers, I learned today I have a purpose, something totally different than what I had expected--answers came clearly.  Standing and having an opportunity to explain my story and my "why" for being involved with this company, I listened to others who spoke before me, and each of us had a different "why" some for financial freedom, some for self-development, single worthy beautiful women sharing their struggles and wanting not only to be self-sufficient but to find fulfillment in helping others find their true potential and happiness.

 When it was my turn to speak, the walls were taken down,  it came from my soul, as I explained my "why" I began to cry (so much for composure), I looked around this room filled with people who are dedicated hard working men and women, my eyes were brought to Crissy Caufman and her sweet husband, I had no idea who they were a few months ago now I include them in my friendship circle I have found, Liz Decker, never knew her before, she's amazing, in the back Danny Jones gave me chills an impressive young man who understands the Atonement, understands life's struggles and teaches me more than he knows, Shelli Richardson who listened to the spirit a few months ago not knowing -- I too was praying for a change to  me.  So, my "why" is different than most in that room, trying to bring me out of a cancer Mayo Clinic-filled life, I've found a way to reconnect with old friends and make new lasting friends if I never become monetarily wealthy being amongst happy uplifting people with integrity helping others is helping to refine me as I go through the bitter and sweet.

 As crazy and strange as it seems, I have found another "why" Recker, he's one of my heroes, he has more love and sweetness in his little 4-year-old body than some 40 years old's I know. Some may not know what a difficult financial burden it can be on a family trying to raise a child with special needs. I would love to provide a home for them where this little guy can run outside and play, a place to call me.  If I can give this my all with Recker in mind, I will be able to achieve that all. I will never give up, I just need to learn how to master the mundane -- showing up, doing my part, and then doing it again the next day--for every no I get a little closer to a yes, so I try not to take it personally and recognize it as a learning experience.  The joy I will feel when those dreams become real is REAL. It is going to happen...So did anyHappenrnthing today, yes, a big YES, nothing thatgiantdidn't already know but some things I have forgotten to tap into...remember two things I am blond, so it takes longer to sink in... haha and,  He always sends His love it has given me HOPE in the darkness and helped me back into the light, I've been blessed to see that the give and take are exactly what we all need to help us become who He wants us to be, as He allows those trials to strengthen us, I'm looking forward to seeing what the next year will bring fo me.  Something extraordinary is about ready to surprise even me; I can do anything with Him on my team.