Friday, July 18, 2014

Getting on my nerves

I am so grateful to all my friends and family who have tugged, pulled, pushed and prayed for me while I was at the Cleveland Clinic.  7 weeks I was away from my family, I missed my grandchildren so much.....my children too, but mostly Eric,  Recker and Ezra---they have  my heart.  There was no way Eric could be away from work for that long, and honestly I had no idea I would be there for so long, it took 2 weeks to get all the testing done, then another 2 weeks for all the surgeons to get there schedules  to coordinate, by the time all this was done I had a week left and made the decision to stay, I think I was so afraid of going home and not coming back.  Eric was able to be there for my surgery, I am so grateful to US Airways for offering to pay for his round trip, Eric would of never missed my surgery, he's been there for everyone of them and has been such a blessing in my life.  I have always said I work for the best company ever, US Airways.  My supervisor and manager are incredible people, with integrity and support for all who work for them. Thank you US Airways.
When I left for Cleveland Clinic I had a pic line in my arm and could not change the dressings on it nor was I able to do my own transfusions, that were needed to be done every 12 hours. For this reason I was blessed with Diana Lents to come with me, she gently took care of those things for me and having a nursing background was able to ask all the questions I didn't know to ask.  Her family is from Ohio and they were so gracious to allow me a stranger to stay in their home to save on hotel bills.

             
John and Angel     
I'm sure they were glad to see us leave, but still never was I uncomfortable or treated with such respect.  I will always be endured to them for their Christ like service in taking a stranger into their home. I miss them, Angel would always read me a scripture a day to help keep my hopes up, and my testimony of Jesus Christ alive--thank you Angel.  John, he is a true gentleman with unwavering love for his wife a true Angel in all rights of the word, and for his children and recently born twin grandchildren.  He is a full  on Yankees lover, but I won't hold that against him.  He kept his composure very well when I told him I didn't care for Derek Jeter.  

Another angel who came to visit me was PK's mother, she is such a lovely woman and I was blessed to spend some time with her. I loved talking with her and could see that she has a sincere heart,
no wonder her son is my favorite doctor ever.
Evgenya Kreymerman




I cannot explain how happy I am to be home with my family, when Recker sees me he always makes sure he looks at my ankle where my stitches are, I was afraid he was going to pull on them but he doesn't he just stares at them and then stares at my face as if to say "I'm sorry bonbon"
This is where they took nerves from
 These little stinkers are getting on my nerves, excuse the pun. When I put any body weight on that foot an electrical shock shoots through my foot and up my leg. My foot and ankle are so swollen I can't elevate it, because when I do the electrical shocks are too much for me to handle.
Nurse Diana Lents--can't thank her enough.
 We could of hired any nurse to come with me, but I was blessed to have Diana and even more blessed to have her family welcome me into their home and care for me until I could go home.
best welcome home ever I love my family
Oh how I missed my family, no one can ever replace the love a family has for one another, and when one of those special spirits are gone for any length of time, we miss them deeply and gain a new appreciation for them, I'm so glad we are eternally bound to each other, I would not want it any other way. I love you Kayla, Jeremy, Recker, Ezra, Blake and Chloe, Kaitlyn and Brian, Haleigh and Scott.
Eric I saved for last, he has a sweetheart, not too many people get to see him the way  I do.  What a blessing it is to be married to someone who you never want to be without.

Dr. Haberkamp--so happy all the time

Dr. Gastman--energizer bunny

Thursday, July 10, 2014

Beauty is from within

I'm not sure where to start.  It's difficult for me to type, but I know I need to record what has happened this past week. I was so happy when Eric came for my surgery, he makes everything better, we have never been apart for this long and it has been hard on both of us. 7 weeks of waiting is a difficult road to ride.  I read my new Live Happy Magazine over and over Knowing I Can Make A
Difference--figuring out how was the hard part.

On July 3rd I arrived at the Cleveland Clinic around 5:30 am, Eric and Diana were with me.  As I paced the floor not wanting anyone to talk to me or touch me, I realized I was having a panic attack and prayed to Heavenly Father to take this pain and anxiety away. He did, and I was soon off to the OR, to get dressed in the hospital gown--It doesn't matter what hospital you're in, the robes are all the same.
Before Eric came back to see me off to surgery, I said several quick prayers asking Heavenly Father to watch over the surgeons hands, and if it be His will that he would allow me to heal from this odd, unexpected trial I was facing.  I wanted to put my head under the pillow and hold it down so I can scream, cry and forge through this quickly.

Frenchy sending me off to surgery

Ready for Surgery with Diana Lents
Eric gave me a kiss on the forehead as they wheeled me into the OR, it was difficult to maintain my composure, tears flowed from my eyes and onto my pillow. Down the hallways of Cleveland Clinic I saw a wall that had 30-50 white coats hanging on hooks, I started to cry again.  Those coats belong to doctors, doctors who will come to the hospital,  take their white coat off the hook and go to work. The tears continued to flow as nurses came up to me asking what they could do for me--I shook my head back and forth,  and watched them walk away not knowing what to do.  I just wanted them to put me out and get going on this surgery. I always look forward to going to my Happy Place in Paris Port Jaune, Eric and I pick wild flowers, ride bikes and have a picnic, leaving the rest of the world and worries behind.  I'm ready to move on with the surgery and hopefully put this chapter to rest,

This picture still brings me to tears, Eric is the
most positive person I know--thank you Frenchie
I woke up in recovery with a lot of pain, I was trying to process where the pain was coming from, as the Nurse said "Mrs. Williams time to wake up, do you know where you are?" "how many fingers am I holding up?" It was then that I realized the surgery was over, my immediate response was to touch my head, to see what damage had been done. It was an 11 hour surgery, lots of anesthesia, blood, and what's this? a neck brace--I'm confused--Eric and Diana came into recovery, Eric told me I was beautiful. I thought  him saying I was beautiful was so sweet. I knew it wasn't true, how can I be beautiful with blood all over me, a swollen head and staples making their way down my skull like a train track?
Just out of surgery

So happy to be with this guy
a kiss from Frenchy

Going back to my room I kept going in and out of consciousness, not only does Cleveland have bumpy roads, the driver taking me back to the room was bumping into walls and doors.  He also asked me what I would like him to sing for me, really? He wanted to sing, I said OK Luther would be good, so he starting singing  Luther Vandross 'Here and Now' I told him it was beautiful, but not to quit his day job. He put his pointer finger to his mouth as if to shhh me.  We arrived at my room, I had a few minutes before Eric and Diana arrived so I cried a little.  When Eric walked in my room I was overwhelmed with immediate love and peace.  With Eric I don't have to say a word and he knows what I'm thinking sure don't want to disappoint him, He has been my rock and my best friend through all of this nonsense.

 On day 2 at the hospital it was a Holiday..the 4th of July..The doctors on my team sent their residents to visit me.  One resident told me he was there in place of my pain doctor and he would put in orders for  my pain medicine.  Within a half hour my pain was slowly rising to a 6, I beeped for the nurse and asked her for pain medicine.  She said she would get it right away, within a few more minutes my pain rose to a level 7, I beeped for the nurse again asking for pain medicine she then told me the resident did not put any orders in for pain medicine.....WHAT??.. by now I was at a level 8 going on 9....the pain was so bad  I started to cry, then I asked the nurse to please call my husband, I just wanted him there. From this point on, I tried to process happy thoughts, happy moments, sometimes it worked sometimes it just didn't.  I stared at the clock not only waiting for the meds but also wanting Eric to be with me, he always seems to make things better.  I was out of breath and crying so hard trying to catch any breath I can the sweet nurse rubbed my arms and legs trying to help, but she too was crying so we were not getting too far.  I tried to sing "Be still my soul" through the gulps of air, then I sang "Come thou fount" trying to tune my heart to HIM.  I sang "I feel my Saviors Love"
All of the patients in the area I was in had chronic pain.  My room was right in front of the nurses desk so they could watch me and monitor my pain levels. I was staring at the clock and whimpering loudly, out of control.  I was on my own, I felt deserted, left alone, scared and crying the hardest I ever had in my life.  I was yelling in between cries, "why have you ignored my pleas and prayers?" I literally felt this was going to be my last day on earth and I would not be able to say good-bye to Eric. I was inspired before I went into this long surgery to write a letter to give to Eric if needed.
I paged the nurse and asked her if she had gotten in touch with Eric, she said no,  I asked her to please give him this letter in case I didn't make it.  PLEASE GIVE THIS LETTER TO ERIC WILLIAMS

Dear Eric: I am so sorry you have had to deal with all my health issues this past 5 years, you have made me so happy.  The best decision I ever made was to marry you.  We have been through so much together, you rescued me.  When I look back on my life of 20 years of abuse, I now understand why the Lord put you and I together, I had to experience the pain in order to understand the joy I found with you.  You wanted the best care for me, and I believe I received it at Mayo Clinic.  You loved me through 7 months of chemo, then radiation, bald head and all. No one can make me laugh like you do.  I know those years were hard on you, but you always came home with a smile, rubbed my legs until I went to sleep.  We prayed for a miracle when the cancer came back, and the Lord granted us that miracle.  Now with this ear tumor, you have showed me unconditional love, especially not knowing what was going to happen, you always tried to cheer me up that is apparent in the pictures.  I also know you, you hold things in to be the strong one, I am now giving you permission to cry, just cry,  I believe everything happens for a reason, but sometimes life sends us horrible storms we were not expecting, I've always dug my heels in and tried not to cry, many times I've cried because I knew the pain was not going away anytime soon.  So please, just cry do it for me, you don;t have control over any of this.  I know He could take the pain away but He doesn't because we need to go through it.   I want you to know I've felt so much joy with our marriage and with our beautiful family.  I have a letter for each child and grandchild, they are in my lower drawer.  But I want you to tell the kids and their spouses I love each and everyone of them, my cup is overflowing with the love I feel for each of them.  The more my life goes on I can see He is the Tender behind the Mercy.  I bought them each a subscription to Live Happy, it stands for everything I live my life by and I want them to also live happy--I want them to give to those in need, even if it's just a smile.  I learned so much from you allowing me to join in the Nerium Family, Jeff Olsen is a man who I believe has reconfirmed to me to continue to give back, we have a responsibility to help others.  I Love You, tell the kids I want NO EMPTY SEATS IN HEAVEN--I expect them to fill those seats so we can be together again, and continue our journey together. Heaven is real, I've seen it.  Trust me, you want to be there. XOXO I Love You and always will, until we meet again, I'll be saving you a seat, and I'll be watching you in every rainbow you see. No good-byes--just see you later--maybe she did teach me something good-huh?

 The other patients in the area where I was in were complaining, telling the nurses to get my doctor or move them so they wouldn't have to hear me--I tried so hard to stop crying, the nurses were coming in saying how sorry they were but they couldn't do anything until they heard from the doctor.  I could hear nurses at the station outside of my room, they were laughing and joking with each other.  The cackling of laughter I heard I will never forget.  My desperate cry for help was falling on deaf ears.   After an hour and fifteen minutes the resident came into my room, asking me what pain level I was at..... looking back on that question I say "are you kidding me?" I didn't respond except with a cry and loud scream "please help me" finally the pain medicine was surging through my veins  with purpose and strength. I handed him my Live Happy Magazine and asked him to read this book with a humble heart.  When I could finally speak without a pause, I didn't want to, I just wanted Eric.  I had been waling and gnashing from side to side for an hour and 15 minutes, it took every bit of energy I had,  my heart was racing but my blood pressure was low.  When Eric arrived all was calm, he had no idea except he asked me "sweetheart have you been crying?"  Uh--just a bit, and I could see the hurt in his eyes as I told him,  He said no one ever called him, which now in retrospect it is probably better I've not really seen him get mad, but I'm pretty sure this was not going to be acceptable behavior, and I know he would of gone crazy seeing me in that much pain.

Today I had my post op appointments with the surgeons, they told me my ear looks great and everything is healing perfectly, still I am in a lot of pain and I just want to go home.
I was told I can go home, and that I will need to see the doctor once a week for the next few weeks, then at 2 months we will see how the nerve in my face has regenerated. The doctors told me this type of major surgery with nerves takes at least 6-8 months to see results, so patience is going to be my middle name.  Tonight I am exhausted from the appointments, I am grateful for my doctors and I am looking forward to seeing my family.  The happiness I feel in my heart far out weighs the horrible experience I had at the hospital.  I'm going to live happy with the results of my surgery no matter what.
Happiness comes from within and is found in the present moment  by making peace with the past and looking forward to the future.  I believe Eric was right when he said "you are beautiful" I'm learning that beauty is from within us, I choose to be happy and not let the new look define who I am.






I was able to send those beautiful nurses who took such great care of me the Live Happy Magazine, with a note telling them how grateful there are still people like them in the world who care, and who do their job so well. Thank you Jeff Olsen for coming into my life, from a distance you are teaching me to live through the bitter and sweet.









Wednesday, July 2, 2014

I feel my Savior's Love

 Rainbows, always show up when I need a sign from Heavenly Father
that he here's me.  They are magnificent to me.

Well, I'm here again the night before a major surgery hoping and praying this time I've been away from my family, will prove to be worth it.  Making decisions without Eric or the kids to help me has really been hard to do.  I feel like every hour I need to say a silent prayer to the Lord to bless me with a light, something that can feed my brain with knowledge.  Then I ask to help me be still enough, to hear what He is trying to teach me. 
 I know change, and fears of change, have been clearly on my mind.  I've been walking around with a patch on my right eye, I hope the drops I've put in it night and day along with the patch 22/7 was enough to not have to have a cornea transplant.  The time I've spent here alone has given me time to really reach down and ask some gut wrenching questions. One is, can I live a quality life with my face the way it is right now? Am I confident enough to live the rest of my life having people stare, to here children say to their parents "what is wrong with that ladies face, or eye?" I've had a few even ask me themselves, I just tell them I have a boo boo. 
These past 5 weeks in Cleveland I've gotten inner strength I never thought I had.  I wish I could understand His plan for me.  I've read my scriptures, and Preach My Gospel chapter 6, everyday trying to be lead to a place I need to be, asking and begging Him to teach me what I need to do, so that I can return and live with Him one day. I'm not sure how I'm doing in that area, this is just so darn hard. I know I need to hold on to everything I know to be true and not let go.  Those things I know are so precious to me and can never be taken from me. I've had many spiritual experiences since my 1st surgery at Mayo.  The Lord loves me enough to give me a glimpse into my future, it is beautiful, every time I wake up, I want to go back, but I'm always told "It's not your time, you must return and finish your journey" 
I received a text from a friend today, (I don't want to reveal her name she knows who she is) she said she had been thinking of me but didn't quite know the right words to say. She then said I hope you are able to get the answers your looking for, if it is the Lord's will.  When I read that part, I have not been able to get it off my mind....what is the Lord's will for me? Even I don't know the answer to that. She brought up the fact she has been the caregiver of 2 sons who have been struggling with health issues, she said something else that has stuck in my head...she said she would gladly take their pain on herself so these boys would not have to feel it.  This reminded me of the feelings our Heavenly Father must have when He sees his children struggling, He easily could take our pain away, but for some reason He never does, why is that?  I believe He wants us to learn to rely on Him fully, give Him all we have then sit back and have FAITH, have enough HOPE in Him to make miracles happen, or be strong enough to accept what is being presented to us, and find a way to live a happy life in whatever circumstances we are faced with.

I also received a text from my sweet Haleigh Bear:
H: "mom when are you coming home.?
M:"Good question, it all depends on how well the surgery goes. I'm praying it'll all go great so I can go home this weekend. I'm really scared.
H: We miss you so much, I pray for you every morning and night and I have faith that the surgery will go well. Don't be scared Heavenly Father is always looking over you, and dad will be there.
M; yes I'm looking forward to seeing him, this is the longest we have ever been away from each other.  He's the only one who knows how to calm me when I get those anxiety attacks while I'm waiting for surgery, I just don't want to ever feel that extreme pain from the nerve, ever again"

I wonder if I have kept my promises to Him.  When I was about 14 I promised the Lord if He would get me out of the situation I was in, I would promise to live a life of pure intent, I would share His
Gospel with others, I would study and share with others how to live a happy life, no matter what. I don't think these past 5 years is exactly what I had in mind.  When I look in the mirror, I don't see what He sees.  I know He see's the heart inside me, and He knows how much strength I have, He has shown me I can handle any trial that I face.  He's always been there right beside me, I know when I kneel down to pray to Him, He always answers back, it's not always the answer I want, or the timing is not always when I want it to be.  I truly believe in Miracles, and He is the only one who can make those happen.
Going into this surgery, I feel all alone, even though Eric is here, I feel like I am in a negotiation with the Lord for my life.  The anxiety I am feeling for this surgery is different from what I have felt with other surgeries.  I'm far away from home, and I just have to keep remembering no matter where I am, He is always there just one prayer away.  I feel like this road is getting longer and longer, harder and harder to maintain calm.  My heart is beating in my chest, I don't know if I can ask Him to take that away.  I realize my life is forever changed, and I will never be the same again, I hope I can be a better version of myself, even with my face disfigured, I know who I am, and I know the kind of person I want to be.  As a person who has witnessed what Heaven feels like, I cannot deny what I know to be true.  I know the Lord has a plan for me, I just need to figure out what that is.
Tonight as I lie down to sleep: I feel my Savior's love,  His gentleness enfolds me, and when I kneel to pray my heart is filled with peace, He knows I will follow Him, give all my life to Him,  I feel my Savior's love, the love He freely gives me.

Saturday, June 28, 2014

Love One Another

I've been in Ohio for 5 weeks now, next Thursday I will be going under the knife again.  I realized  how much I need the Lord to bless me and watch over me.  I go to Him in silent prayer most of the days now, I don't have a lot of privacy, and I think it's been really good for me to be here with Diana, she's been a great source for me, as my nurse she needed to come to give me infusions every 12 hours.  We were under the impression I would have to get lab work done and see another doctor for clearance.  We did all of that last week, and I really should of just come home so I could see Eric and the kids.  For some reason I was not thinking straight, Diana suggested we go stay with her family who lives one hour and 1/2 away.  This would save us some money and get me out of the hospital environment.  It truly was a great distraction. Her sister and brother in law are empty nesters, it was a beautiful quiet home I could rest, read and have some quiet time.  Although it was awkward at first, I soon found out Angela and John are down to earth people, but also a very Christian Catholic family. This brought me relief, knowing I would be able to read my scriptures every morning, especially for preparation for my surgery on Thursday.

Diana and her sister Angela come from an Italian family, they love deeply, and laugh loudly--very loudly.  I think I will miss that the most when we part from each other once I am home, but I hope we will be able to keep in contact through texting and calls.  These people didn't know me, they didn't have to take me in for a week, they had choices, but they chose to show Christ like Attributes by opening their home to me.  I'm sad I didn't get a picture of John before I left, he and Angela were leaving to see their son daughter in law and new twin grandchildren in Columbus,  John did not get home before we left.  They truly are wonderful people, I felt like home and did not have one panic attack.

My new friend Angela--Thank you XOXO
Today we drove back to Cleveland to be closer to the Cleveland Clinic, we are within walking distance and it a lot less money, and actually a better hotel.  Tomorrow I am planning on going to a Cleveland ward, there is one within 1 mile of here.  Then we may drive to see the Kirkland Temple.  I can't risk catching the flu or getting a cold, so wearing a mask is mandatory when going to church or crowded areas.  I have had a great week--mentally trying to get prepared for surgery is always a quiet time of processing for me......I've decided no matter what the outcome of this surgery is I choose to be happy, I will not let this define who I am.  I have a great family who loves me, and been blessed with amazing friends who will not be embarrassed to be with me--I've tried to keep it light, not get to carried away with the facial paralysis, because the doctors are going to do the best they can, I have faith in them and they are very confident I will have great results.
  I never thought I would ever feel this way but I'm looking forward to getting this over with and getting home to my family.  I miss them more than I ever thought I could.  My grandchildren are growing through Face time Ezra looks so big and tall, Recker too, he came up to the phone and kissed me today.....I cried....then Ezra wanted to kiss me too.....I cried more.  Kayla was so sweet to follow them around the house with the phone so I could see what they were doing. Ezra is getting so smart, his daddy has been teaching him all sorts of things. He knows where his toes are, his eyes, nose, mouth and ears.  He also growls loud when you ask him "what does the Lion say?" He blows kisses, and knows how to throw away his diaper all on his own.  I sang Recker a song, its one I've sang to him since he was a newborn, he was intrigued and stood motionless as I sang it.
 I have so much to thank the Lord for, my life will go on, my circumstance may not change, but I am determined to learn something from this.   I will do all the doctor asks me to do and hope and pray the surgery goes well and the doctors hands will be still, and that we will have a great outcome.  Tonight, my thoughts and prayer as I lie down to sleep, help me get a good night rest, and ask the spirit to be with me all week as I prepare for surgery. I have been trying to practice what I preach and put to practice some Christlike Attributes by doing something kind everyday for someone else, even if it's hold a door open, or give a half smile to a person walking by (usually that scares people so I try not to use that one) yesterday I did something very simple, I bought lunch for the lady behind me at Chipolte and she was so happy, surprised and elated.  She decided to pay it forward too.  The world would be a better place if we all could give a little more, it's not necessary for it to be a monetary service.

Monday, June 23, 2014

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.

Thursday, June 19, 2014

Finally Surgery on the Calendar

Dr. Hamberkamp
This morning I had the opportunity to meet with Dr. Haberkamp for a pre-op appointment and to talk about all the drama yesterday.  He is such a nice man, always happy and most importantly optimistic about reconnecting those nerves in my face.  I guess time will tell, but I still love his positive outlook and optimism.  I truly believe in positive mental attitude, I have been working on my own body to try and get some results.  If I tell my body to do something for long enough I believe my brain will do it.  Sounds crazy, however, being positive and optimistic is better than the opposite, even if no results happen I will still be happy.  Why?  because I choose to be happy.

Dr. Haberkamp looked in my ear and could see some crystallization, which means it's healthy tissue, I have worked really hard to get some healthy tissue with Bacitracin and my $100 bottle of antibiotic. 
Essentially what he said is having the blood is OK, we don't want to lose too much blood and I can't afford to buy new clothes everyday, but it shows him that there is HOPE in the fact that tissue is alive.
Surgery is set for July 3rd.  To keep my ear from bleeding anymore the doctor put a coagulant in my ear, it will stay until surgery. It feels like slime, but I think this is the best my ear has looked in a long time.


That white is the coagulant
 I have labs and I'm assuming more appointments before my surgery, so I will be staying in Cleveland until then.  Counting my blessings today--so happy for too many things to count. 

Wednesday, June 18, 2014

Dr. McDreamy

Been there, done that....never again....

That little black area is where the source of blood came from

So much for that shirt, bra and undergarments

I felt every bit of that blood trickle down

Ambulance.....? REALLY...?? I wonder how much that will cost me/
I decided to venture out of my hotel and see if I could find some pants, I only brought one suitcase and have run out of clothes.  I thought by now I would of had surgery and been home with my family, so I didn't bring extra anything....really, you can believe it, I'm a woman and didn't pack heavy--my husband should be impressed.
I made it to a Macy's department store and was looking on the sales rack (Eric you would be proud)
Nothing there, but while I was standing there I heard something behind me hit the wall, I turned to look and it was a significant splatter of blood.  Immediately my ear was gushing bright red runny blood, down my neck, I felt a puddle forming in my undergarments but was afraid to look--I grabbed my ear, sure enough it was not stopping there was blood everywhere.  The sales associate took me to the bathroom, sat me on a chair the blood was still gushing out, the blood was saturating the wet towel and I could feel the blood going down my throat as I put my head back.
Macy's called 911...... I asked them not to, because I don't want to pay the bill for an ambulance when I can just drive to Cleveland Clinic.  As soon as the EMT's came and saw inside my ear, they decided for me, and soon I was being lifted up into an ambulance.  I had to tell the history of my ear issues over, and over and over today.  To top it all off when I arrived at the Cleveland Clinic they rolled me into the emergency area and was told to put me in room 13............."No I will not go in room 13, please don't take me in that room, I'll wait in the hallway, but do not take me in there"  wanting me to calm down the EMT asked me why I didn't want to be in that room, I said "I'ts not a good number, it's bad  and I need all the blessings I can get right now"  he laughed at me and rolled me into room 13......YIKES--Soon Diana and her sister who live here came into my room they waited with me until a doctor could come--An ENT came cleaned me up, and called for Dr. Haberkamp however he was deep into a surgery and would not be able to come.  We waited for one of his residents to come, finally he opened the curtain and said "Hello"  I couldn't resist it I replied "Did you have to be so dang cute?"
  he laughed, and as he walked closer I could see he had a hickey on his neck, again I couldn't resist it...."Um, you know I can see that hickey, you're not fooling anyone" he laughed and said "I'll have to talk to my wife about that"

By this time  it had stopped bleeding......this was so scary I had no idea an ear could bleed that much--Originally, the EMT told us he could see the blood seeping from the surgery plug Dr. Haberkamp had put in to cover the nerve. Dr. Cutie Pie said there was a small black area in the bowl are of my ear where the  the blood was coming from. He said since I was seeing my surgeon tomorrow, I could leave and Dr. Haberkamp would assess it tomorrow.   I was so relieved, it was very very scary to feel that amount of blood gushing from my ear and not know what to do.  I just held it, probably a lot like I did when I was a young child, I remember holding it when it hurt.  I thanked the doctor and said have a good day "Dr. McDreamy"  I think he was embarrassed but he smiled.

Besides a migraine, I felt fine when I left the hospital.  I just wanted to go back to the hotel and sleep, I was exhausted.  I did my usual going to bed regimen, I was finally able to lye down and once again the blood started gushing. I remembered Dr. McDreamy told me if it started to bleed again to put some Afrin on a cotton ball and put pressure on it.  I did exactly what the doctor said, and voila' blood flow stopped.  I put some bacitracin on it, covered it with a cotton ball and band aid.....and off to sleep.

Tuesday, June 17, 2014

The 'give and take'

He's at the door waiting to hear from us

It's late, after midnight, I need to sleep, but can't.  Not much has changed, 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.  

Sunday, June 15, 2014

LIVE HAPPY

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.

Friday, June 13, 2014

Smile with your eyes--

Nothing to do but wait.....
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.

mixed emotions about stepping into this building today

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 small white line is cartilage exposed--there is no functionality, no eardrum

the is what my ear looks like now--there is still packing covering the nerve
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 grant 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.