Living in the Moment

Practicing living in the moment has been an intentional goal for my everyday living.  I have to  remind myself daily of the reward.  I've heard it takes 21 days to break a habit so I'm assuming it also takes 21 days to form a habit.
Today I will be seeing my surgeon Dr. Lettieri.  The last surgery I had on Thursday took me a little longer to recover from, purging my body of all the anesthesia is draining. Getting up and walking to the bathroom is about as far as I can go, even then I am wobbly, shaky and nauseated. On Sunday I was finally able to eat something, however it tasted of metal.
I feel like the world is hastily passing by just outside my bedroom door.  I'm praying Dr. Lettieri will take out the stitches and close the open wound on my neck.  The skin graft he took was from another area on my neck and those stitches seem to be healing well.
It's hard for me to comprehend that I have gone under general anesthesia 34 times in less than 6 years. Each time the healing takes longer and seems to weigh down my spirit.  I want so badly for all these surgeries to be over.  I believe now that this nasty infection is under control we can finally get going with the important issue of the nerve--yes, there will be more surgery; and I will endure.

My view from pre-op

Heidi my pre-op nurse--these nurse are always so sweet to me

This is what it looks like now, after surgery.
I see some bruising on my temple next to my
eye...I always wonder what the heck happens
during surgery to cause these bruises.

My life is so different now, I've learned patience and empathy for other's during the past few years. I've also learned what is truly important in life, family first, then friends who truly love me for who I am.  I've had to let go of a friend who I sincerely thought would be with me from beginning to end. I simply do not want anyone in my life who cannot be authentic.  Friendships are wonderful but when they become complicated and draining--I'm out! I refuse to waste precious time with people who do not reciprocate the same feelings.  I choose happy, with that being said I am not perfect and do need to say "I'm sorry" at times.  Part of the reason I have not allowed too many people into my life is the fear of being rejected or hurt.  I'm so over that now, I know who loves me and who cares I've learned to discern good from toxic.

This brings me back to the initial reason for making this post, living in the moment. I truly believe we are the equivalent of the few friends we associate most with.  If I kept myself in worry constantly wondering if I am offending someone I'm not being in the moment.  Spontaneously giving service to those around me on a daily basis, strangers who I will never see again have given me more satisfaction and clarity of the direction I want my life to go.  Living in the moment allows me to flow through life daily intentionally looking for ways to better myself by seeing the needs of others.

I'm trying ....

I have missed out on a few blog posts so today I will probably post 3.  First I went to Cleveland Clinic had my surgery with Doctor Gastman then flew home with Eric to recover.  I'm getting really good at this.  I do not like the pain medicine, Eric gets upset if I don't take it, but I try to muddle my way through without using it.

I received an email message from one of my physicians who reads this blog, so this is for him.... "You made a mistake on your blog, that was your 21st surgery in less than 5 years" "Well excuse me for the mis count, btw your nosey" "No, just want you to be exact" so there you have it, yes I have nosey physicians.  It's a good thing I love him enough to care that he was kind enough to correct me, and that I never say anything on this blog I wouldn't be proud for them to read.

I want to add this little tender mercy to this blog post because it is another one that truly took me by surprise.  I have been involved with a company I feel the Lord placed in my lap a year ago for a reason, He knows how much each of us can handle, and knowing what was about to make a life altering change to my life, He knew I needed to be with people and circumstances that could bless my life, and it has in such a precious way.  I have made lifelong friends, who never knew me before my paralysis or cancer diagnosis.  Most don't know my story.

I recently was invited to listen to a conference call by a woman who I had already admired, for her down to earth, funny, humble way of telling the story of how she and her sweet husband have gotten to where they are today.  Like always I was sitting on my bed with my phone on conference mode with my notepad ready to take notes, learn something that may also help me in my venture.  I was not prepared for the emotion I would feel when I listened in.  So many who have followed my story know I use the word HOPE so much, I have studied it, pondered it, lived it and tried to wrap myself up in the warmth of that word.  Mariel began to speak with her team, (everyone on the call is muted) that's a good thing because it was not a minute or two into the call when I began to blubber like a baby.  It was as if she was speaking to me directly. (this is not the case she had about 800 people on that call)  I am not going to go into all my notes, mostly because I stopped taking them at this point.  She was directly delivering her message to me.  Graceful and gently she spoke of HOPE.  Giving HOPE to others during a time in life when so many just need to know there are people in the world who care, who want to help make a difference. It's been 6 month's that I have dedicated myself to doing something kind for someone every single day, I have been successful doing this, and it has changed my life. It doesn't take away my own needs and realities, but it has helped me to become a better person, to learn that when I fall I can be lifted up and reminded of my potential.  I've been reminded once again time after time as I'm guided to people daily that I have so much to work on, so much to learn but by taking the hand of others like Mariel and Frank I can be lead and guided with thoughts of goodness and mercy, and do it with humility and grace.

I had a few days off for recovery after surgery, but started back to work last week.  I love my job at USAirways.  I really had a breakthrough last week while working.  Probably not the place I thought this would happen, but anymore I am never surprised at what, where or who touches my life in a significant way.

I was taking a reservation for a man, just doing my job when out of no where he asked me if I was OK.  Not knowing exactly what he meant I asked "Yes I'm OK, does it seem I am not doing my job, or have I offended you?" "Oh heavens no, just the opposite you are lovely to talk to and today I feel grateful it was you who answered the phone" a little stunned I thanked him and finished up his reservation, when I asked if there was anything else I could do to help him he said "Yes, you can" thinking he was going to either change the reservation, have me send him to rental cars or add his dividend miles number, you can imagine my surprise when this is what he said "Did you recently have a stroke? I don't mean to be nosey but your voice sounds a little staggered" for the first time I was finally able to hear the truth from someone, a stranger and for the 1st time a light went off in my head I replied "No sir, I didn't have a stroke but I do have partial facial paralysis and sometimes it is difficult to speak clearly, I'm sorry if you had a hard time with me today" I felt this sweet peace come over me, I am healing, from the inside out.

Facial paralysis has been by far the most challenging misfortunate obstacle I have had to come to grips with.  I've felt so many times that I just can't do this anymore, begging for relief, for a complete physical healing.  I have definitely felt broken, alone and misunderstood. To finally say out loud to a perfect stranger "I have partial facial paralysis" may seem so insignificant to other people, but for me it was HUGE.  My physician's have been perfectly honest with me.  Right now, there is not much  hope for a full recovery without more surgery, which I was told from the beginning.  I like to think I want to hear the full truth, the bottom line, then I can deal with it.  Boy, was I surprised at how much I didn't comprehend my own understanding of what difficult was.

I have so many people say "...but you're beautiful"  for some reason that "....but" hesitation has penetrated my heart too many times.  I know there is not one person out there that has said those words to me who is comfortable saying it, but I've come to discern they love me and really just don't know what to say, and that is OK, I don't know what to say either.  The absolute truth is, my soul is trying to heal, and it will take some time for me to be ready to accept this new life I have been offered.

What is a Saint ?

When I think of someone as a Saint, my mind immediately goes to Viola Williams, Eric's Mom.  In my eyes she could do no wrong, she actively would seek out the weak and weary and take them into her home for comfort from their worldly worries. Many times, the knock on the door was in the midst of the early morning, or late night, but she never turned anyone away, she loved unconditionally.  Life to her was beautiful, she was raised in humble circumstances, served a mission in Hawaii, and married the love her life Ray Williams. Ray was a postal worker, and she was an accountant.  I never saw them quarrel, they learned the art of laughter and happiness together as they struggled through life's challenges together, I miss them both dearly.   I look to Vi as my ultimate example,  and know without a doubt I will feel her loving arms around me again when I leave this life and start my new journey.

I recently had someone say to me "you are a saint" to that person I said "I am not a Saint, unless you think of a Saint as a sinner who just keeps trying to be better than they were the day before" 

Honestly, I keep tracing the steps of where I've been these past 5 years and cannot comprehend how I've been able to continue on.  I read some of my old blog posts, and I can see the Lord's hand writing those words, He has been with me every step.

With this past trial I am trying to deal with, there are times I feel very vulnerable, it's hard to speak sometimes to people, my eyes tear up.  The aching of this is so real to me, I remember not being able to get the Villain out of my head, it was a day to day struggle, fighting to stay alive.  I have poured out my heart and soul to the Lord at times feeling his loving arms around me, and at times feeling deserted and alone.  The feeling of peace, and knowing His grace remains with me,  has certainly gotten me through some unbearable times.

While talking to Doctor Northfelt, I told him it's hard for me to look in the mirror,  and be ok with what I see.  This is a change even I have to get used to seeing, and right now I am dealing with it my own way.  It's hard to feel attractive for my husband, in my head I wonder if I am sexy to him anymore. Will I be able to live with this face if I have to?  I asked Eric if he is embarrassed to walk with me or hold my hand in public, knowing already what his answer would be I still needed to ask.  This transitional period is hard, very hard.  I'm grateful for Dr. Northfelt, although not all of what I just shared here I shared with him, but he is always so good at listening.

 The people who know me, know my heart and that has not changed. I do feel a sense of loneliness sometimes, when I was going through chemo and radiation I had a support group, people I could talk to, who were either going through it themselves or had already been down that road.  We all had similar feelings and could help each other get through the bad days.  I don't have anyone to talk to, I  don't know anyone who has or is going through this life altering trauma.  I do my best to keep positive, but smiling is hard, because it looks so weird, one side smiles while the other is "normal"  Even when I am happy I catch a glimpse of what I look like when I smile and it is hideous to look at.  So this leaves me in a predicament, do I never smile or laugh again?  No, it does mean that I need to learn to smile with my eyes, and listen with my heart, knowing others who love me don't see that ugly smile they see the heart of the same ole' 'say it like it is' Monya.

 I quit trying to understand why, or how this happened.  I instead have been focusing on happiness, what does happy mean to me?  In December after my 1st ear surgery a dear friend called me, and invited me to a Nerium event, I think the 1st three times I said I'd be there but either forgot, or simply didn't want to know what it was.  I don't remember, but Shelli reminds me of it.  Finally, she invited Eric and I to the Barrett Jackson event, I really didn't want to go, but Eric wanted to get me out of the house.  I was still feeling post surgical pain, so I sat with the girls in Shelli's Nerium booth, I sat and observed (you know how I love to people watch) there were a ton of men coming up and buying this cream, at the time I thought they were probably just coming back because all of these girls are drop dead gorgeous. I observed the interaction these girls had with people, then I was approached by Liz Decker she said "so what do you know about Nerium?" I said "Nothing, but I want in, it's time for me to get out of this cancer world and I heard you mention you are all going to St Louis in April, sign me up for that too, I need a girls trip" I went to St. Louis had an incredible time watching person after person serve and help each other. It really was quite amazing, EVERYONE was so happy.  This was exactly what I needed, get out of my cancer world and start living my life with friends I had excluded because of my diagnosis.  Shortly later I had the emergency surgeries at Mayo Clinic, all those Nerium people came to visit me, that pierced my heart knowing these people are REALLY genuine. Then when I went to Cleveland Clinic for 7 weeks, they were so supportive and kept in touch with me.  I continued to share my thoughts about Nerium with people and even shared enough that I was able to sign up a partner from a bed with my computer.  I gave out Live Happy Magazines to everyone, day by day I could see and feel myself gaining confidence in who I am again.  When I came home, I was welcomed back with open arms and tearful eyes.  We took off again just where I left off, not skipping a beat, or feeling vulnerable at all with them, my face is different, I thought it would be a deterrent and was afraid to face them, this is an amazing anti aging company promoting beauty and looking younger, how in the world can I represent them?  Now that I look back on that, I can see the Lord's hand leading me and guiding me to this place I thought I could never be in again.  With that I have to say "thank you" to all my Nerium Family, who has truly loved me like family.  I may not be moving as quickly as I had originally goaled, I've learned the goal is still the same, the timing is just different, and finally I've learned that those who truly love you will never leave you, this my friends is unconditional love, so Saint I may never be, but trying to be better day by day, yes I can do that.

Back to Work

I made the decision to go back to work, my doctors in Cleveland would of wanted me to wait a bit longer, but I can't sit around.  I look in the mirror and I am still not quite ready to accept what I see, I really thought I was.  Last week I finished my work, it was a difficult transition, my eye continues to be such bothersome issue.  Cleveland Clinic PA told me to massage the lower lid to strengthen the muscle, I have been doing that still it waters constantly to the point of not being able to see out of my right eye. Mayo Clinic says I have chronic dry eye, which is weird since it waters all the time, the are trying to fit me in this week.  Work was really hard, my foot is was so swollen by the end of each day, I have had a hard time getting my shoes on. I tried to spend the weekend elevating it, I don't have a strong education about how nerves all I know is it takes a year for things to truly heal.  If this last surgery did not work, this is what is next.  The will make an incision from my hairline, ear to ear, pull back my face and take the nerve from the left side and attach it to the nerve on the right side, then wait another year.

Being at work I felt vulnerable as I walked into the building, I usually like to smile and greet  people with a happy attitude. Problem a lot of people did not recognize me with my short hair and odd looking face.  I even had someone ask if I gained all my weight while I was gone....Yes I did...I was on 2 different steroids and ballooned up a bit.  I am now off of them and back to my normal eating habits so hopefully I can get back to my normal weight.  I know when others notice, then it must be an obvious change.

I am always amazed at what my brain can retain, and what takes time to recall.  My job at US Airways is in the International Reservations Department, there is a lot of information most people take for granted that they know how to do.  I've realized since being back, how amazing my brain is, reactivating those brain cells and muscles I have not used for a few months is slowly coming back without having to look at my notes.

Personally, I am struggling to keep my spirits up and stay positive. Some of the ways I do this is to continue to read from a good book everyday for 30 minutes...this gives me HOPE in my purpose in life. It is so easy to wonder "why" when that happens, I have to get on my knees and say "thank you for this trial,  I am trying so hard to understand, please give me guidance and strength to know what to do, now that it is done there is not much I can do to change it, but now it is time for reality and for me to live with it, I accept that, but please help me along the way, give those nudges of the spirit when I am bombarded with doubt" 

I marvel at my ignorance, I once thought I had all I could deal with as a youth, and that my Heavenly Father had given me quite a challenge to overcome, and when I finally did and was able to truly forgive and move forward I just knew that was it for me .....  I seriously thought if I could overcome that, I would be left alone for life...no more trials.  I think He really does give us what He knows we can handle, but I believe He is also trying to teach me something through all this.  I had a dream that allowed me to see and was specifically told that I have a purpose here on earth, it's just so hard to grasp what I've been asked to do and not say "why? why me?  I try to believe that I am of infinite worth and that I  should be saying  "why not" Maybe because I know all my faults and know the things I need to work on, I am not a special person, no different than anyone else, it seems the world is filled with people who are struggling.  There is a part of me that wants to negotiate my way out of this one.

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.

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.

Promises not broken

I know without any doubt one day I will be strong enough to believe in this promise.  Right now I am feeling vulnerable.  I am so afraid I have spent a week in Cleveland trying to find a doctor who will take on my case, one in which I was told by two doctors they have never seen during their time as practicing doctors.  I am being fine tuned and my sharp edges are being sanded down.  Heaven has shown me so many miracles....and one thing I know for sure is,  the Lord will not take our pain away, I also believe he could take it away but when he does that we are deprived of blessings we would of never had the opportunity to endure, come closer to the spirit and strengthen our testimony of FAITH and HOPE in Christ.  

One day a few weeks ago I let Recker and Ezra play in my car while I was cleaning it out, they love to just play in the car because when he drive they have to be in their car seats so when bonbon let's them play they are all happiness and smiles.  The next day I was driving and I noticed both Recker and Ezra's feet and hand prints on the windows, I pulled my car over to the side of the road and stared at those prints with the biggest smile on my face--thinking "I want to absorb this moment, those little hand prints are my cute little grandkids...." why did they not look as cute when they were my own children's? Or maybe they were but I just forgot.  I later noticed in my house on one of the mirrors Recker's hand prints all over it, I did not take the windex out--instead I cleaned around it, this little boy has blessed my life more than anyone ever has--I love Ezra too, and I love him just as much, but the connection I have with Ezra is different than the one I have with Recker.  Last week when I was home I had the picc line in my arm, and a wrap around my ear, like a bandaid.  Recker always comes and gives me hugs, but this time he gave me the hug and then a had to inspect my picc line and I tried to explain it was a boo boo and bonbon just needs some medicine.  Then he hugged me again looked at the bandaid on my ear he first looked at it then looked me straight in the eye, as if to say "it will only hurt for a minute" and that fast he had ripped it off my ear and ran as fast he could---NO it didn't hurt, he just hates bandaids and obviously if he doesn't like them he assumed bonbon wouldn't either.  This little Recker boy is 4 and a half, he is still non-verbal, but he and I can communicate with our eyes and our hearts--He has a special bond with our Heavenly Father and I treat him as though he is a typical child, because we do not want him to think we think he less worthy or less loved than anyone else in this family. 

he's my little angel

I know that one day we will understand why some children are born with this special veil surrounding them and protecting them from temptations of the world.  When I look at this picture up above, it always makes me think of Recker, I believe his foot prints will also be next to mine, yes his perfect little foot prints walking next to me and helping me to get where I need to be.

Tomorrow is a big day for me, I am praying the doctor has already cleared his schedule for one day and is able to get me in asap, if not then I will be carried once again on an airplane to my next doctor on the list hoping for an answer.  I have a really good feeling about the Cleveland Clinic, and I know they have already told me my situation is an emergency case.  I realized a long time ago my life will never be the same, it will never be 6 days of exercise for 2-3 hours a day, riding a bike 150 miles a week, lifting weight twice a week and doing kick boxing 3 times a week....I never thought I could give those things up because they had become such a big part of my life, now I realize  my Heavenly Father has a specific plan for me, I'm still not sure what it is, but I want to be the instrument He expects me to be. The way I will accomplish whatever it is I need to get my body healthy again, and I will.  I always seem to forge forward, and I;m able to do it with the FAITH HOPE AND PRAYERS of all my friends and family.  Without them I would not be able to accomplish any of my goals, I don't ever want to let people down or be less than I know I can be, that's just who I am.  Because my life has been spared so many times, it tells me I have more to learn.  I truly believe everything happens for a reason, Heavenly Father is not just going to throw us out to the lions and not have a plan for us--still there are times when I  feel like there is nothing I can do but rely on Him, friends and family to pray for me.  I agreed to come to earth and take a body, and that earth life would be a difficult task at times, I believe when Heavenly Father sees our pain it must hurt him, because He can take it all away, however, if he does that we will not grow and learn and share with others.  My prayer for tonight is to help me sleep, even if I have to cry myself to sleep.  I will wake up in the morning prepared for a good plan from my doctors.  Tomorrow will be a good day, one day closer to feeling the sunshine on my face again.

Opposition in all things makes me a stronger person

Another week of decisions not quite clear--however there have been changes that have been written on my soul.  My heart is forever changed and I will never be the same because of these experiences, sometimes I wonder if it better or worse..Mostly because I know when the storms come in my life they seem to rest and stay ever entwined in my heart until I can figure them out on my own. When I say "on my own" all that means is that I have to come to a higher mountain, much higher than the hills I've been climbing.  So many times I have been down or in despair but this time is the worse I have ever experienced, and forced me to get my knees calloused as I have begged for answers.  Many times I have spent times in my car, crying out loud wondering if I have been abandoned--no answers have come.  Earlier this week I received a beautiful note from a young girl who has come to be a 2nd daughter to us.  I was so touched by the wisdom she offered it brought me to tears, and it was at that moment, she needed to hear from me as well as me hear from her. I have not been able to get this conversation out of my head--It's words I've told myself over and over again, but somehow when I think them, they don't quite seem the same.  I've truly seen and felt the truth of the love our Heavenly Father, he's always there, right there just waiting to see how in tune I am......not quite on the same page this week--but the fact is, I am living proof that modern day miracles happen everyday--he hears every prayer, he knows every struggle--it has to make Him feel sad or disappointed when my complaints come in handfuls.  I imagine He thinks, "I've really out done myself with this young lady, she can't even see the possibilities and strength she has" I know this for sure, we can never enjoy the good in our lives unless we have felt of the bad or the trials that life often times brings.  We can't enjoy joy without living through some life changing events.

I will never deny what I have felt, and some of the experiences I've had this past few weeks are so sacred to me, I will not share them on this blog, but will keep them sacred in a draft for my children to read--maybe it will redeem myself from my last post--(I cussed) sorry about that--it was real and raw, should of given a disclaimer before you read.

I knew my family including my sisters would  be nervous when they read my last post--BTW--I'm not planning on killing myself--just at that very moment-I wished it was me, and I was happy for that lady at Mayo Clinic, don't misunderstand and send me emails as to why I shouldn't write or say what I feel--I am no longer amused nor do I want to be entertained by your negative energy.  I'll say it again, please don't read this blog if you are not willing to listen with an open heart--this is not your journey--it's mine--and as the Lord has created us all different we all have different philosophies of how to deal with life changing events--this is my way and I will not apologize for my feelings, and one more thing, I am a Christian woman,who rarely says anything other than what I'm feeling, this does not mean I don't also have to ask for repentance--EVERYDAY--mostly for the uncomfortable feelings I get when I read your emails of criticism.  With that being said, let me update on this weeks activities.

I began by getting my records from Mayo Clinic, we picked them up....we as in Frenches my driver. I am going to the Cleveland Clinic for my 2nd opinion, the doctor is renown for his facial paralysis reanimation surgery for people like me--when his office received the first batch of records and pictures, they were amazed at what they saw--Debbie, was friendly and more than helpful, and I do need to insert here my friend Diana Lents is the person who knows how to get this stuff done, not only that but she is a nurse and will be able to give me my infusions in my picc line twice a day. If Cleveland Clinic  does not work out with have a connection with a doctor from Baylor and Mayo in Rochester.  I insisted on Eric staying home--I can keep him updated--I don't want to put him through anymore than he has to, especially when he needs to work.  So now that I have read all of my reports from Mayo, I think I understand a little more of what is going on.  A quick synopsis is when I was 3 my eardrum was broken due to a blow to the head, with that trauma came many surgeries as a child.  I was told back then I would never get water in my ear--never did--at age 29 I had a mastoidectomy  removed. From that point on, I was told some repairs were done and I could not go under water--the first time I swam was in the Hawaiian ocean when I was 30 years old.  Skip forward to now, after going through chemo and radiation, mostly the radiation the beams stirred up some weird stuff in my ear.  I went a year ago to see Dr. Barr's, he suggested getting the mastoid out and to possibly do the Baja Implant.  I refused at that time to do it, just because I was racking up some surgeries at Mayo and at that moment I was not worried about it.  Skip now to October of last year, my ear began to drain again I went to see Dr. Barr's it was determined at that point it would not be a good idea for me to wait for surgery--we started on some anti-biotics to see how they may help, on December 10th Dr. Barr's went in and took out the mastoid, at that point he took some skin from my upper arm to create a new eardrum because it was completely blown out too.  I took a 2 month leave from work--everything in my ear looked good, it just was not healing like we wanted it to, I was concerned about infection but was told there was no infection and it had been tested by infectious disease.  I was also given a neurology appointment and consult--nothing. After a couple of months on antibiotics my ear began to heal, in fact they were extremely happy with the outcome.  Still one more surgery on the schedule to get all the debris out and re-evaluate, this surgery was successful but since the doctor in the OR before us went over by 5 hours I had to return for another surgery--even after this one it looked good--Dr. Barr's grafted skin from my upper arm to cover some spots that were beginning to show bone.  Now all was good, I had one week to wait for my follow up, Tuesday the night before my appointment, something popped in the back of my head near my skull , an immense pain took over my body,, and not wanting Eric to worry, I went into a different bedroom and hugged a pillow to scream inside it,  I crawled back in bed next to Eric around 5, I didn't want him to know anything was wrong.  I then drove myself to the Mayo Clinic and was admitted immediately. My face looked like it had palsy, no feeling on the right side, and my speech was off-I also could not raise that eyebrow or smile from the right side. This was on a Wednesday, on Friday I had another surgery--the pictures he showed Eric were nasty--it showed where he had taken more skin to graft around the nerve, but within a few days it had gone gangrene, and partially killing off some of the facial nerves. This is not palsy. Now we are a deciding point, as I visited in length with Dr. Barr's, I didn't like any of his options, and he was open for us to get another opinion, so we are.  I realize there is a window of opportunity for nerves, we are asking the family, close friends and now ward and stake members to pray for me and specifically for me to feel peace with  whatever decision we decide is best.  I want to include all my decisions with the Lord, he has not let me down yet.  With the strength of so many people praying I KNOW an answer will come, one that I will more than likely have to accept and forward in faith hoping I can find some peace--My face will never be the same, but it was never perfect before anyway--I'm ready--well I should say I am ready today and hopeful with all the fasting and prayers going out for me--the spirit will strengthen me to another height and again prepare me for what it is the Lord has in store for me, and what I'm learning will help others, even if it gives them a bit of strength to go on for another day, then do it again and again until life becomes a school of learning and a place where they too can pay it forward.

black dead skin December 10,2013

After 1st surgery in December--impressive staples huh?

January--looks like infection

April 28th Surgery

One week after my last surgery, in for a follow up my face has already began to take on a new look.

THIS IS MY SPECIAL TEXT I RECEIVED THIS WEEK--THANK YOU I NEEDED IT.

Your kids deal with situations like this very differently. Everyone was a mess. Everyone was crying. We all thought this was it. But your kids are also very strong. They get that from their mom. They are very good at keeping face in a tough situation like that. I think everyone just thinks that there is always going to be more time with you. That you'll keep fighting, because you have for almost 5 years now! We all love you so much, there are so many people rooting for YOU. There are still so many people who need to hear your story and feel inspired. You were given another chance a few weeks ago, instead of looking at it like another part of you missing or another surgery, think of it as another chance from Heavenly Father. You get to still be here on earth to see more grand kids, to see Mexico again, to watch your girls get pregnant, to see your sisters, to see more places with Eric, to sell more Nerium!!. I'm sure there were days 4 years ago going through chemo when you wanted to die. But can you imagine if your wish was granted then?? You would have missed all of your kids weddings, Ezra, Paris! I'm sure there were days when you were a little girl that you wanted to die. When the pain of your family wasn't going away. But look at your life Monya. Look at all the precious joys you've been given. Life sucks so bad, but with the bad you get joy in ten fold. I LOVE YOU. PUT ON YOUR FIGHTING PANTS AND KICK BUTT. I know how hard this is for you. You're handling it all so well. You can do it. There are so many people who support you and love you. And who will love you no matter what. You came very close to dying a few weeks ago. So right now the only thing that's going to get you through this is focusing on why you were kept here. And the things that keep you going. So many grand babies you don't have yet. So many things with your kids/adopted kids lives that you can't miss. My heart is so broken that you had to go through yet another trial. I want more than anyone for you to be relieved of the pain and misery. You're here for a reason, you're still fighting for a reason.