Smile with your eyes--

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

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

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

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

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

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

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

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

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

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

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

It's not my time to go

I was hoping to get my picc line taken out today--NO SUCH LUCK--All the Cleveland Clinic doctors I see are out of town for a convention.  It was also a suggestion that I keep it in until my surgery.  I think I've finally made some decisions after talking to a few doctors, the proposal Dr. Barr's gave me is reasonable, however 3 doctors have told me that taking muscle from my tongue is a temporary fix and if I was an 80 year old women they may consider that option.  What they have seen work the best with someone who has a dead nerve like I do, is to take a nerve from my leg because it is the nerve that best replicates the nerve in my face. This can only be done if they find good nerves to work with in my ear. If there are no good nerves they will take a muscle from my arm and connect it, close off the right ear completely with some tissue from my arm and bring in 2 other doctors who will help assist with this process.  The plastics part of this surgery could be 6 months or more down the road.

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

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

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

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