Love One Another

 

SATURDAY, JUNE 28, 2014

Love One Another

I've been in Ohio for 5 weeks, and next Thursday, I will be going under the knife again. I realized how much I needed the Lord to bless and watch over me. I go to Him in silent prayer most days now, I don't have a lot of privacy, and I think it's been good for me to be here with Diana. She's been a significant 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 that last week, and I should have just come home to see Eric and the kids. For some reason, I was not thinking straight; Diana suggested we stay with her family, who lives one hour and one-half away. This would save us some money and get me out of the hospital environment. It indeed was a great distraction. Her sister and brother-in-law are empty nesters; it was a beautiful quiet home where I could rest, read, and have some quiet time. Although it was initially awkward, I soon found out Angela and John are down-to-earth people and a very Christian Catholic family. This relieved me, knowing I would be able to read my scriptures every morning, especially in preparation for my surgery on Thursday.

Diana and her sister Angela come from an Italian family; they love deeply and laugh loudly. I will miss that the most when we part from each other once I am home, but I hope we can stay connected through texting and calls. These people didn't know me, they didn't have to take me in for a week, and 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 going to see their son, daughter-in-law, and new twin grandchildren in Columbus; John did not get home before we left. They are wonderful people; I felt at 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 is a lot less money and a better hotel. Tomorrow, I plan to go to a Cleveland ward; there is one within one mile of here. Then we may drive to see 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 that no matter what this surgery's outcome, 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 and not get too 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 feel this way, but I'm looking forward to getting this over with and going 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, and 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 bright; 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 loudly 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; it's one I've sung 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, and my circumstances 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, the doctor's hands will be still, and we will have a great outcome. Tonight, my thoughts and prayers as I lie down to sleep help me get a good night's rest, and I 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 every day 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 Chipotle. She was so happy, surprised, and elated. She decided to pay it forward too. The world would be better if we all could give a little more; it doesn't need to be a financial service.

Love came in a box

MONDAY, JUNE 23, 2014

Love came in a box

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

Kaitlyn always sends me pics of the boys
love love love

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

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

Thank you, thank you

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

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

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

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

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

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

1.  Count your many blessings 

2. Praise to the Man 

3. Love at Home 

4. Where Can I turn for peace 

5. Master the Tempest is Raging  

6. I know my father lives 

7. Because I have been given much 

8. The Iron Rod  

9. I believe in Christ and 

10. Sisters in Zion. 

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

Sister Franklin

Bore such a strong testimony today

Sister Franklin and her Nephews

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

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

 

Finally, Surgery on the Callendar

 

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 genuinely believe in a positive mental attitude; I have been working on my body to get some results. If I tell my body to do something long enough, 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 satisfied.

Dr. Haberkamp looked in my ear and saw some crystallization, which means it's healthy tissue; I have worked hard to get some healthy tissue with Bacitracin and my $100 bottle of antibiotic. 

He said that having the blood is OK; we don't want to lose too much blood, and I can't afford to buy new clothes every day, but it shows him that there is HOPE in the fact that tissue is alive.

The surgery is set for July 3. To keep my ear from bleeding, the doctor put a coagulant in my ear, which will stay until surgery. It feels like slime, but this is the best my ear has looked in a long time.

That white is the coagulant.

 I have labs and am assuming more appointments before my surgery, so I will stay in Cleveland until then. I'm counting my blessings today--so happy for too many things to matter. 

Dr. McDreamy

 

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 ran out of clothes. I thought by now I would have 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, and sure enough, it was not stopping. There was blood everywhere. The sales associate took me to the bathroom and sat me on a chair. The blood was still gushing out, 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 didn't want to pay the bill for an ambulance when I could just drive to Cleveland Clinic. As soon as the EMTs saw inside my ear, they decided for me, and soon I was lifted into an ambulance. I had to tell the history of my ear issues over and over today. To top it all off, when I arrived at the Cleveland Clinic, they rolled me into the emergency area and told me to put 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 "It's 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 lives 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 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 it in to cover the nerve. Dr. Cutie Pie said there was a small black area in the bowl area of my ear where the blood was coming from. He said since I was seeing my surgeon tomorrow, I could leave, and Dr. Haberkamp will assess it tomorrow. I was so relieved; it was very scary to feel that amount of blood gushing from my ear and not know what to do. I just held it, 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." 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 lie down and once again, the blood started gushing. I remember Dr. McDreamy told me to put some Afrin on a cotton ball and pressure it if it started to bleed again. 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.

The 'Give and Take'

 

TUESDAY, JUNE 17, 2014

The 'Give and Take'

He's at the door waiting to hear from us

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

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

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

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

Be a Light to those who walk in the Dark.

 

SUNDAY, JUNE 15, 2014

Be a light to those who walk in the dark

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

This is a little city--white coats everywhere.

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

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

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

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

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

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

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

Smile with your eyes--

FRIDAY, JUNE 13, 2014

Smile with your eyes--

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

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

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

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

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

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

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

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

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

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

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

Another Day at Cleveland Clinic

 

MONDAY, JUNE 9, 2014

Another Day at the Cleveland Clinic

This morning, I called the doctor's office. As soon as they opened, I was greeted, already aware of my situation. She said Dr. Bernard is working on getting this on the surgery schedule; bringing three doctors in on the surgery is more complicated than it sounds. I received a call to see another doctor on Thursday. In the earliest time frame, I will have surgery on Tuesday--one more week here. This hotel is not cheap; it is most convenient if the hospital or doctors' offices call. It takes me 5 minutes to get there without going outside. Walking through the hotel and hospital, I see doctors in white coats--they are everywhere.

It is a bright sunny day today, and I want to get out for some fresh air. I do not have a car; I just stayed at the hotel waiting for a doctor to call and say, "surgery time" Today, I was a little disappointed wanting to get this over with; my anxiety level is on high alert.

I spoke with Kathleen from Dr. Barr's office to update her on what is happening here--she was so sweet and reassured me that she and Dr. Barrs only want the best care for me; I let her know I have been praying, friends and family are praying, and I feel good right now about being at the Cleveland Clinic.   She wished me luck and told me to let them know what is happening. That phone call was hard for me. I never want to offend or hurt anyone else's feelings, and I feel that getting a 2nd, 3rd, or 4th opinion like I have has got to at least make Dr. Barr feels terrible, which makes me sad. However, the most important outcome for me is the doctor who can give me the best results for a long-lasting look; every doctor I have spoken to has told me the process Dr. Barr wants to do is not the best option; it is an excellent solution for someone who is 80 or older, it's a temporary fix. This process we are trying to organize here in Cleveland is much more advanced and will give better results in the long run--it will mean more surgeries, but when it's all said and done, it will be a better option for me.

Today--no surgery date yet --- more sitting in the hotel waiting--tomorrow I will call the office again. Hopefully, answers will come tomorrow. Tonight, my legs are hurting; it will be a restless night.

Promises not broken

 

SUNDAY, JUNE 8, 2014

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 which I was told by two doctors they have never seen during their time as practicing doctors. I am 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 have 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 drives, they have to be in their car seats, so when bonbon lets them play they are all happy and smiles. The next day I was going, 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 hugs me, but this time he gave me a hug, and then I had to inspect my PICC line. I tried to explain that it was a boo boo, and bonbon needed some medicine. Then he hugged me again and 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 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 is 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 particular veil surrounding them and protect them from the world's temptations. When I look at this picture above, it always makes me think of Recker; I believe his footprints will also be next to mine, his perfect little prints walking next to me and helping me 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 can 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 an excellent 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 would never be the same; it would never be 6 days of exercise for 2-3 hours a day, riding a bike 150 miles a week, lifting weights twice a week, and doing kickboxing 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 can 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 tonight is to help me sleep, even if I cry. I will wake up in the morning preparing for a good plan from my doctors. Tomorrow will be a good day, one day closer to feeling the sunshine on my face again.

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