Enduring ongoing adversity

There are so many differences in all of our lives. Depending on the circumstances, new mothers sometimes feel overwhelmed, fathers feel pressured to take care of families while some struggle with loneliness.  I believe 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 to each other.  For example; Many years I was dealing with a teenager who was really struggling with some serious issues.  It was heartbreaking to watch, especially knowing if this child would just be obedient life would be so much easier for them. One day I went to visit a friend who was clearly devastate and beside herself in tears. When I inquired what was wrong I was shocked at her answer. She mentioned her daughters name then through her tears 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 ones, when my life seem to flow with little difficulty. Unfortunately the nature of our lives gives way to distress,  for me periods of good health have come to an end, and misfortunes have arrived.  It seems to be more difficult  when the comfortable times have gone on for a while. The suffering of health issues or the loss of material security can bring fear and sometimes even anger. I have to be transparent here, and admit I have felt the anger and questioned why?

I realize the  anger comes from a feeling that what is happening is unfair. It came at such a shock. To be blessed with  good health all my life, the serene sense of being secure had become deserved and natural, almost as an arrogant ignorance. After all hadn't I proven my worthiness and loyalty to the Lord? For this health issue to continue now 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 out loud “I have always tried to be good. How could this happen?”

The very opportunity for us 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 gifts 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 especially hard for us to accept when he was so innocent. Then having our 2nd grandson diagnosed with Autism, I have to be honest it rocked my testimony, hitting my knees continually asking "why, why would you send these spirits to the same patents?" This type of  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 with the thought of him being indifferent or cruel. I knew I needed to check in with Him daily or  those feelings could lead to loss of faith and question if there was a God at all. Again I found myself asking like I did several months after processing a cancer diagnosis...."why me?" with the comforter conveying to me over and over again 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 clear that for me to have trust in Him, I  must be transformed through making righteous choices daily, that is hard to do. I often still wonder  if I am prepared for such a great a 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, the 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 and work and wait for help. He could easily take this all away but He chooses to teach by own personal experience. Just as I need to learn from my own personal experiences.

The Lord’s relentless answers to my pleading  has helped me and has encourage 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 it will not end, during these times even physical strength is difficult, listening to RS lessons on how to deal with trials and adversity are 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 qualify for eternal life can find peace in the midst of the struggle. This is so much easier to write than actually 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; it has tested it and strengthened it. And the feeling of peace the Lord has promised has already been delivered in the midst of the storm. Other miracles are sure to follow. I expect the miracles to happen, and thank the Lord ahead of time for the miracle 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 with an easy road to take.  From day to day they struggle, not knowing "what is going to happen next?" Those boys are into everything.  Recker and Ezra are both non-verbal so try to 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 the parent who is caring 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 the shoulders of his parents. The responsibility the Lord has given them, is beyond what I can comprehend.  I know that I am on a road to be the best I can be so I can live with these perfect little boys for eternity.

I don't know why but I truly believe the Lord customizes trials to best 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.
 I know from my own experience that He can and will give us strength to rise through every trial. 

Love came in a box

Update on the last couple of days.  It has become extremely difficult to be so far away from my family, I miss them and Love them so much. I have tried to Face Time 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 when I get home they will not remember me.  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 was intended to go with them, this trip has been planned for quite some time, when my sudden surgeries took precedence Eric immediately wanted to cancel the trip, I begged him not to, and thought it would be such a great bonding time for him and Blake.  Turns out I was correct, they had a great 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 who my daughter in law 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 hard here in Cleveland without family, but I feel blessed to have modern technology where we are able to 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 fully rely on the Lord to help me make some major decisions, it has been a great 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 sending 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) he delivered a package from the people in my home ward.  When I opened 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 and everyone of the cards and notes, over and over, and over again. I had no idea I was so loved.  I will never be able to thank each and everyone of them, but I have FAITH & HOPE in knowing they know.

Thank you, thank you

Marian Priday--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 of my children were baptized while in this ward.  I was dealing with family matters, that eventually ended  sadly in my mom and dad cutting ties with me.  Wally Slade was our Bishop, since that time I relied so much on the women and men of this ward for an example.  It was one of the most difficult 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 here in the ward, but as new people moved in and out our children grew older, 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 like 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 cannot see my crooked smile, a little girl walked by and I smiled at her with my eye, 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 who was conducting 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 seemed to be a normal thing that they maybe 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 who ever feels the spirit goes to the podium and tell of their favorite Hymn and why then the congregation sings the song.  The list of Hymns were some of my favorites too.  Count your many blessings, Praise to the Man, Love at Home, Where Can I turn for peace, Master the Tempest is Raging, I know my father lives, Because I have been given much, The Iron Rod,  I believe in Christ and Sisters in Zion.  This ward is filled with multi cultures, 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 what his name is, 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 prepare 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 and although I may not understand why things happen the way they do, I can rely on Him to get me through ALL of my journey here on earth until I return to Him again.

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, the 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 to make an appointment with internal medicine, and to get all my lab work done.  After I speak with the surgeon on Thursday I will have a better understanding of what exactly they are going to do to me, how they are going to do it, and to make sure my insurance is covering all of this.  I've always said that I believe 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 in the bathroom and did my ritual of staring at my face and saying to my eyebrow "move" over and over when I had no luck there I did it with my eye "blink" over and over 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 and 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 I believe 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 floor 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 then told me "it's not a real boo boo, it's just for play"  I started to smile then realized that doing that would start a whole new conversation, so I just shook her hand and told her to have fun with her mom and grandmother.  They apologized, 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 boo boo's--they were very kind and apologized again as they walked away.

It's interesting how the Lord gives me sight when I can't see, the sight he gave me today was exactly what I needed.  He took  my doubt and replaced it with truth, He took my fear away and all I could feel was Him.  He takes me as I am, takes me 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 bitter sweet, 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 these 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 a lone for just a bit--I'm not sure how much more I can take.  

Be a light to those who walk in the dark

Today is Sunday,  I wanted so badly to either go to the Kirkland Temple, or to a church close by.  I wanted to take the Sacrament, today neither one happened.  Tonight I am watching conference from my laptop, also listening to the Slade Family music, and the Sound of Music soundtrack.   My eye is getting worse everyday, and I fear losing it completely.  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 have dinner and family home evening, oh how I miss them.  Since we've been empty nesters it's been really hard 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 everyday.... 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, he wanted to be with me, but I had a very strong 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 was insisting on being here.  I told him if he came here, I would cancel the surgery and go home, now that made him think.  He knows when I'm serious, so he and Blake left a couple days ago, I've been talking to them everyday, thanks to modern technology.  Chloe will be working with Dr. Kelly while she is 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 given me a chance to reflect, process and get back on track with the spirit.  I have had some really serious spiritual experiences while fasting and praying for answers.

The two main sources of most importance are my eye, and to see if the bone is infected.  Not sure about the eye, but I feel really strongly that my bone is good, no infection.  I do not leave the hotel without a patch on my eye, the wind blows a lot here, it is extremely painful 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 was thinking 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 ladies 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 good-bye to the little boy, and off I went.  Seeing out of only one eye when I have the patch on is really 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 ran into walls, stepped on my own feet, dropped or grabbed for things that look closer or further than they really are.

The body is an amazing creation and when it is not working like it was intended to, all of what you learned, has to be retrained.  My mouth does not work like it used to either (I know most people are happy about that one) but I can only eat very small 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 it---One thing I've learned in the past 5 years is that I am not in charge, Heavenly Father is, he 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 blink a couple of times while I was 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, you are going to have a great day"  I felt weird doing that, but it works--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,  I'm starting to embrace these changes in my life.  I've been told I will never look the same again, well maybe physically I won't, but all these changes keeps 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 are able to do or not to do.  I am living 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, in spite of whatever trials they are facing.  I have given my heart and soul to HIM and to the doctors, I want to be a person who gives more than she takes--listen with my heart--smile with my eyes--and give back everyday 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 of  now and will tell you about it when I get my results. My focus now is embracing the new Monya--still the same heart, still the same 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 a  calm and quietness, 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 is 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 amazing children, 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 decide to LIVE HAPPY.

Smile with your eyes--

It's been almost 2 weeks I've been in Cleveland getting opinion after opinion.  I have finally found the surgeons I feel really good 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 are not only going to help the look of my face but also  the newest procedures in medical technology.  I asked all the right questions, most important, how many times have they performed this procedure.  The doctor I chose said he does this everyday, with 98.8% good result with patients.  I really liked him and he explained all the medical procedures in a way that I could understand, just like Dr. Kreymerman used to do. In fact I've spoken with PK several times about my procedures and doctors, he is fully 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.  I swift whiff of chemo threw me off--that smell is 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 loud speaker 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 am 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 amazing 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 love---I'm proof of His unconditional love-- I've been praying and searching for answers, I know He has 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 greater 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 and many of my 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 run down of what he thought was best for my individual situation--half way 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 went over every option, he also typed it out and gave me a copy so I could process this. Basically this is what we discussed.  I have no function of the right ear, and have a large mastoid bowl with a fibrous base.

The ear is a major emergency that needs taken care of asap, however believe it or not my eye is the most important issue right now--I am in jeopardy of losing my cornea, and having to get a cornea transplant.  He is going to put a gold weight in the eye lid which will give the me ability to blink when my brain says it needs too, 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 level of bone resection.

All surgeons agree that if a good frontal nerve stump can be found then a sural nerve jump graft is necessary. In English--- if there is a good nerve they can use they will do a graft of nerve from one side of the face (left) to the right side.  It's best to not let this wait because of progressive osteomyletic changes.  If this is the case then they recommend a more simple reconstruction 1st, which most likely could be done with a SCM (google that) flap and skin graft.  If this fails I can get a radial artery free flap.  He explained all the risks, 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 seems to think it could be possible in the next couple weeks.  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 speech again....everyday I look in the mirror and I 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 very difficult I want to work those muscles.  

One of the things I'm having a hard time dealing with is the looks I get from people, I understand why they look.  When I smile it is completely crooked, today a group of kids were with their teachers at Barnes and Noble, 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 smile with my heart all the time to Recker my grandson who has non-verbal autism.  So many times he stares at me with his eyes and 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

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. Barr's gave me is reasonable, however 3 doctors have told me that taking muscle from my tongue is a temporary fix and if I was an 80 year old women they may consider that option.  What they have seen work the best with someone who has 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 plastics part of this surgery could be 6 months or more down the road.

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

Right now my head is on overdrive trying to keep up with my health  and  my Nerium business.   I'm thinking about giving up or quitting,  I'm gonna keep pushing forward, but there are times I can feel myself slipping, I know I need the Lord by my side.  I have to get constant reassurance from the Lord that I am doing what is best for me--I live by every word, 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 no where, 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, I would know exactly what to do.  This time it is different, I'm struggling, I wonder sometimes I've been forgotten, I wonder sometimes if I am even being listened to, it seems like the words are going to Heaven but the door is shut.  Sometimes I have to be told NO to understand the YES, and to realize sometimes 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, 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 difficult.  I have no doubt He loves me, He always will, through the good and the bad.  Fear gives me 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 of His children, it is so hard to comprehend, I guess the only way to maybe come close to understanding that 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 is 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 normal?  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?

Mastering the Mundane

It looks nastier than it really is..it broke last night

Today I'm happy--not for any other reason than just for the fact I'm Alive, I'm Free, I'm Me--I woke 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 of 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 or 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, 3 months not so great.  I am always constantly wondering, what I 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 actually 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 heartbreak? When ever I hear that song it is as if it was written for 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 so 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 dad.  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 ear.  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 a 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 are both scarred with bruises--in that moment I can't explain the rush of emotions that came over me, this little boy knows 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 then my arm again.   He took me by the hand and we walked to the car holding hands, I gave him a hug 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 "couldn't be better"  Having this moment with Recker today a reality was made clear to me, we are a forever family, we are not without trials, every family has them, they manifest themselves in different ways from family to family, but none of us are without trials.   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, Heaven surprises me always when I least expect it...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 come.  So, my "why" is  different than most in that room, trying to bringing me out of a cancer Mayo Clinic filled life, I've found a way to re-connect with old friends and make new lasting friends, if I never become monetarily rich,   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 hero's, he has more love and sweetness in his little 4 year old body than some 40 year 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 be able to provide a home for them where this little guy can run outside and play, a place to call home.  If I can give this my all with Recker in mind I will be able to achieve that goal.  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 personal 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 I learn anything today, yes a big YES, nothing that I didn't already know but somethings I have forgotten to tap into ..... remember 2 things I am blond so it takes longer to sink in...ha ha 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 see what the next year will bring for me.  Something amazing is about ready to surprise even myself, I can do anything with Him on my team.

All I have is yours

Today is Sunday Jan 12, 2013

Well I did it, I went to church today, and was able to sit through all three hours, yay, pat on the back for me.  I was not feeling well yesterday and stayed in bed all day, except to get sick.  I also spent a very quiet Saturday, literally.  The kids all went to Disneyland, Jeremy Kayla Ezra and Recker spent the day together, and Eric was at work, honestly I was relieved to be allowed to just do nothing, but rest and pray I can go to church.  I made a goal to at least try to get through Sacrament, but I was able to make it through Sunday School and Relief Society.

I wish I could truthfully say it was easy, I can't.   This was a huge eye opener for me today, and I caught myself several times in tears.  I walked in a little late, Eric saved me a seat.  Just before I left the house I went back and forth to my room twice to pray....."please help me to understand what they are saying" that was my 1st prayer and not feeling quite happy with it, I walked back upstairs knelt next to that all familiar place next to my bed and poured out my heart, "I know you are teaching me something, or trying to, am I so hard headed that I am not getting it? please Heavenly Father, help me to listen with my heart today, even if I can't understand what is being said"  I waited a few minutes with my head low and eyes closed, expecting something, but it never came.

I was met at the chapel doors by President Packard, (one of my favorite people of all time) he had his head down with folded arms, so by this I knew the prayer was going on, I waited watching him, I could not hear one thing being said so watching him gave me the indication when the prayer was over. He shook my hand and we greeted with a sweet hello. I'm wearing a mask, so our eyes smiled.  I have never been frightened to enter the chapel, but today I was, until I saw Eric stand and help me get seated.  Marian tapped my shoulder and smiled, what a comfort if she only knew what I was feeling.  How will I communicate with these people I love so much, I can talk--that's never been my problem--I wonder why not? why didn't my mouth get reconstructed?  It's usually  the one thing that gets me in the most trouble, if you've followed my blog or know me well you know I don't keep much to myself. This has always been one of my downfalls, and hardships in life......just say nothing.....maybe this is what the Lord trying to teach me....for so many years as a child and youth I kept quiet through the rough times, after all we were the All American Family, I think once I gave myself the permission to speak I never shut up....ha ha.

I sat through Sacrament, having to constantly ask Eric what the speakers were talking about.  Mary Greer Spoke today and props to her, I could read her lips for most all of her talk, she is amazing and has been through so many trials this past year.  Just an amazing family the Greers, Julie is wonderful I love her, and I can see the growth and comfort she and President Greer are giving to Mary and her very small children after the death of Mary's husband last year.  Sunday School I caught very little of what was being said, it's so hard to explain I have about 25% hearing in one ear, and it happened over night, I have a very difficult time hearing when there is a group of people, I had no idea who was reading, quoting or commenting (one of those tearful moments)  When I only had hearing in one ear, I thought I was a pretty good lip reader--come to find out--I'm not--If I am talking to someone one on one I do really good, but when noise is coming from all around me I have no idea where it is or who it is.  I'm so glad Haleigh was with me in Relief Society today--I've always been a believer that nothing happens in life as a coincidence, I know if Haleigh was not there I could of easily asked any woman in that room to sit on my left side and help me to follow along with the lesson, but I loved having my sweet baby girl there, she whispered in my ear when she thought I didn't understand and she was right every time.

Today I have been thinking about a dear friend of mine who was killed by a drunk driver years ago, she and I worked together.  She taught me so many words in sign, it was something I enjoyed and always wished I had taken more interest in a class or two--I know I wouldn't be able to communicate in this way with my family or with anyone else who didn't know sign. But Blake didn't know how to communicate Spanish when he went on his mission, he came home and knows the language. Is this what I am supposed to learn?  Could I go on a sign language mission?  Remember these are just my wonderings--my mind goes places sometimes--like today.

And now here I am tonight, I can't sleep, worried about too many things.  I took a bath, listened to uplifting music with my ear phones on, so as not to wake the family with the speakers full blast. I went into Haleigh's bedroom read some of the Preach my Gospel, and finally decided to pray.