God knows every hair on my head. He knows who I am. He knows what my future is. It seems with this knowledge I should have no fear. If I trust in the Lord there should be no doubt of His love for me.
Living completely in faith, knowing he will lead and guide me is still hard at times. I know He has my plan already mapped out. I've said so many times, nothing happens by mistake. People come and go in my life for a reason. I've made divine connections with some pretty incredible individuals.
When I was at Cleveland Clinic last summer I met a woman named Darlene Ballard. I sat in the waiting area feeling vulnerable and weak. I looked to my right and she was sitting with her friend (I believe) I noticed Darlene right away, her eye was completely shut. Without hesitation I walked over and sat beside her. "Do you mind if I ask you what happened to your eye?" I knew I was taking a risk asking such a bold question. Perhaps she was not like myself, would she be offended? I'm so glad I decided to speak with her. She turned to me and immediately I felt something, a bond. "Of coarse I don't mind." Darlene continued to tell me about why her eye was closed. She had a benign tumor. It wrapped around her eye. Although she was elated the diagnosis was not positive for cancer, this was and is a major trial to overcome. Her journey with this unexpected burden will not soon be over. In fact she will probably deal with this the rest of her life. She explained the surgeon could not get all of the tumor, even after a very long grueling surgery. She was positive, she showed me her eye was beginning to open just a bit. I asked her if her eye will ever completely open. Darlene said her surgeon told her it will open.
Last Sunday night I received a phone call from Darlene. She was simply calling to check on me. We talked for quite a while. She has had another surgery since I last saw her. She explained it will take several surgeries to get the entire tumor. I believe she came into my life for a divine purpose. Sometimes the Lord closes a door so that another one can open. I know there is not a support group for the loss of a nerve. However, Darlene and I have struggled with similar feelings and emotions. It is my pleasure to call her my new friend. I will continue to pray for her full recovery.
I've learned I cannot force things in my life to happen, I can't manipulate God and his timing. He brings the right people into my life, so I can weed out the wrong. I know this sounds a bit strong. The truth is in life there is always going to be good and bad. We cannot know the good without experiencing the bad. Just as we cannot know the light, unless we have experienced the darkness.
My dear friend Sheldon passed away this week. I made a divine connection with him. I will always be grateful for that connection. He was diagnosed with cancer in 2008. I was diagnosed in 2009. Over these past 5 and a half years we were able to connect on a different level than I could with other people. Sometimes all I needed to do was turn around during church to meet his eye, at that moment we both knew. I could see in his face if he was having a good or bad week. Today, my immediate prompting was to turn and see if he was there. Sheldon was a quiet giant, I never heard him complain. We shared moments, thoughts and feelings about oncologists, medicine, chemo, and side effects. He had a great love for his family. He loved his wife Kit, and his children Estee, Noah, Peri and Chloe deeply. I often listened to him share his feelings about each one of his children. He didn't want Kit to have to deal with the effects of cancer and often took it all on himself. Kit was an incredible caregiver and strength for him. She was well aware of his care and was always concerned. She made sure Sheldon ate clean and healthy. I was always impressed at how well she was able to balance everything in her life. I understood him wanting to do things his way. I have felt those feelings of concern for my own family. There have been many times I have chosen to not tell my family what is happening in my world at Mayo Clinic. I think this is normal for a lot of people who deal with life altering events.
I will be eternally grateful for divine connections I have made. With my Heavenly Father, this connection has been invaluable. As I continue down the journey of life, I will never ignore a prompting to introduce myself, find a friend or share a moment.
Sunday, January 25, 2015
God knows every hair on my head. He knows who I am. He knows what my future is. It seems with this knowledge I should have no fear. If I trust in the Lord there should be no doubt of His love for me.
Sunday, January 18, 2015
The past couple of months have been a mix of emotions. I am so excited for our new grandbaby to arrive in February. Kaitlyn is so cute pregnant, and I love watching Brian transitioning from husband mode to the responsibility of becoming a father. They are going to be fantastic parents.
I've decided Cleveland Clinic is a great facility, but not for me. It's too difficult to be away from my family. After the last surgery I had in December, I have not heard back from them. This, makes me nervous. We have been told several times when working with a nerve there is a small window of opportunity to work with. After discussing my feelings with Heather and doctor Barr's, we decided to get me in with a fantastic doctor at Mayo Clinic. He is employed by Rochester Mayo Clinic, but resides here in Arizona. He works at the Maricopa County hospital and also does surgeries at Mayo Clinic in Arizona, seeing nerve and trauma patients every Wednesday and Fridays. I was blessed to get an appointment with him.
I will be having another surgery on February 6th. I feel really good about the procedure he is going to perform. This first surgery will be a nerve graft, I will be finding out more about the details when I see him next week. Then in a few months, there will be a much longer, more risk surgery. I will be spending at least a week in the ICU. I am at peace with our decision. I know I am going to be questioned about why I am going through with these surgeries. I already have been told by several people, if the doctor wants to do anymore surgery I should tell them no. It was suggested I should just be happy with how I look and move forward.
I have contemplated and pondered that bold statement for over a month now. I am not a quitter, I am strong, I am willing to do whatever it takes to get my smile back. Vain? I don't think so, I fighting against a time frame to work with this nerve. I know myself well enough to know if I don't try and that window closes, I will have regrets. I choose to leave this life with no regrets. Once I am told there is nothing more they can do, I will let go but until that time, this is what I think is best.
I want to point out I was told only 1% of people have a nerve die for no reason. This is not caused by a stroke or bell's palsy, most of those patients have full restoration of facial paralysis. My nerve is dead, it is not coming back to life, not with therapy, not with standing in front of the mirror everyday begging facial muscles to move. There is no comfort I get knowing I need to live with this. There are no support groups. I have felt alone and disconnected from my family and friends. I have shed more tears over this than I ever did over my diagnosis with cancer. I will not apologize to anyone for how I feel. I would hope people would be considerate of the decisions I have to make, they are difficult.
Most of us, including me have this conception of ourselves. None of us want to think we are concerned with the look of our face. I am here to tell you, unless you have been through this, a part of that 1% you do not know how you would handle it. This has really messed with my head, and made me doubt myself in so many ways. I'm trying so hard to be patient, to remember when I felt like most of you. The fact is, I am part of that 1% and I do have to deal with it. This may take years for me to feel comfortable. So many people have asked me why I am involved with Nerium International. It has been a year now since I made that decision. Before the paralysis, I felt like I needed to get out of the cancer world and instead of always thinking about my next doctor appointment, get reconnected with friends. One of the best decisions of my life was to become a partner with Nerium. Little did I know my life would be so richly blessed with self development. I know without a doubt the Lord was watching me. He knew what this facial paralysis would do to me. I have learned to love myself on a level completely different than I ever imagined I could. I truly believe happiness comes from within, it is a process of finding yourself. I am in that process now. I have friends who don't know anything about my cancer journey, who didn't know me before the facial paralysis, they have helped me along this road of self awareness. My friends who have known me for years and seen me through so much, will forever be embedded on my heart, I love them eternally.
I believe I have nothing to offer Nerium International, the company will grow and flourish with or without me, but I need to flourish and grow right now. I feel a part of something, something wonderful. The philosophy of the company I already believed in, the integrity and loyalty I feel is something I have wanted to be a part of my entire life. This is so much more than about money for me. I have a chance to really make a difference in not only my life but to help others do the same. Right now this is where I need to be. I have constantly relied on the Lord for 5 years to guide me in the correct decisions. I am not going to turn my back on the feelings I have now. I know He is with me, He is blessing me along this journey. I am continually telling myself I am beautiful, I am a daughter of God, I am an influence, I am important, I am going to survive, I am choosing the right.
Wednesday, December 31, 2014
Today I received a dose of reality, well I think it was reality I have a hard time distinguishing between reality and rudeness these days. I am trying my hardest to be OK with living with a disfigured odd looking face, potentially for the rest of my life.
I have good days and bad. In my face, directly confronted with these words today "Hey Monya, I'm sorry to hear about your recent surgery" "Thank you, but I am doing well, and glad to be back to work" "....uhh I was just wondering, do you think you could get plastic surgery done on your other eye to create some symmetrical lines?" Seriously, being put on the spot like that was about as uncomfortable as a drunk in church. I had no idea what to say, after a little hesitation my response was "....I would not, actually WILL not ever have elective surgery, that was my 21st surgery in 5 years, I've had 5 this year and actually thought I would lose my life. I honestly do not care about what my face looks like anymore" "Well you take good care of your skin, it looks good, except for the right side is a little off centered from the rest........" interjecting I couldn't help myself "I have to stop you right there, I can't listen to this anymore, I am not trying to be rude, and I'm quite sure you have every great intention that you are not meaning to insult me, but this has been one of the most difficult years of my life. The fact that I am alive, working, trying my best to be OK with me, not the physical me but the whole self. The parts of my inner beauty I have never seen or known I could possess, has been a long on going process" the tears started to well up, which really ticked me off because I was trying so hard to be composed. ...."My skin looks good because of Nerium, and the self help I've gotten since my facial paralysis comes from reading books like The Slight Edge, Live Happy and by giving myself daily affirmations that I am good enough, that I am pretty enough and that I can hold my head high knowing I am trying my hardest with all I have inside of me to face people and respect myself, no matter what my physical appearance is" she considered what had just been said and apologized for offending me. Why couldn't it just end at that? Oh no.... I started to walk off and she uttered "I just thought you would want to know, there are plastic doctors out there who can help you"
I walked off acting as if I didn't hear her last comment. I wish I could say a huge shield of honor came up between her and I but, as much as I didn't want this to effect me, it did. When I got off work I went home looked at my face in the mirror and like I do everyday I told my damn lips to smile, I worked it for 30 minutes--actually it was pretty funny--my dang mouth didn't even try--I had to push my lip up over and over again I did that, saying "smile dang it...." Well guess what? I can only smile with one side of my mouth, and I can only lift one eyebrow, but I can listen with my heart even with a deaf ear, and I can smile with my eyes. So until, and if my smile never comes back, I will continue to work on true happiness in my life, surround myself with others who are authentically compassionate and kind, and tomorrow I will take her a copy of The Slight Edge and a Live Happy Magazine.
Monday, December 22, 2014
|He looks just like Brian|
I have missed out on a few blog posts so today I will probably post 3. First I went to Cleveland Clinic had my surgery with Doctor Gastman then flew home with Eric to recover. I'm getting really good at this. I do not like the pain medicine, Eric gets upset if I don't take it, but I try to muddle my way through without using it.
I received an email message from one of my physicians who reads this blog, so this is for him.... "You made a mistake on your blog, that was your 21st surgery in less than 5 years" "Well excuse me for the mis count, btw your nosey" "No, just want you to be exact" so there you have it, yes I have nosey physicians. It's a good thing I love him enough to care that he was kind enough to correct me, and that I never say anything on this blog I wouldn't be proud for them to read.
I want to add this little tender mercy to this blog post because it is another one that truly took me by surprise. I have been involved with a company I feel the Lord placed in my lap a year ago for a reason, He knows how much each of us can handle, and knowing what was about to make a life altering change to my life, He knew I needed to be with people and circumstances that could bless my life, and it has in such a precious way. I have made lifelong friends, who never knew me before my paralysis or cancer diagnosis. Most don't know my story.
I recently was invited to listen to a conference call by a woman who I had already admired, for her down to earth, funny, humble way of telling the story of how she and her sweet husband have gotten to where they are today. Like always I was sitting on my bed with my phone on conference mode with my notepad ready to take notes, learn something that may also help me in my venture. I was not prepared for the emotion I would feel when I listened in. So many who have followed my story know I use the word HOPE so much, I have studied it, pondered it, lived it and tried to wrap myself up in the warmth of that word. Mariel began to speak with her team, (everyone on the call is muted) that's a good thing because it was not a minute or two into the call when I began to blubber like a baby. It was as if she was speaking to me directly. (this is not the case she had about 800 people on that call) I am not going to go into all my notes, mostly because I stopped taking them at this point. She was directly delivering her message to me. Graceful and gently she spoke of HOPE. Giving HOPE to others during a time in life when so many just need to know there are people in the world who care, who want to help make a difference. It's been 6 month's that I have dedicated myself to doing something kind for someone every single day, I have been successful doing this, and it has changed my life. It doesn't take away my own needs and realities, but it has helped me to become a better person, to learn that when I fall I can be lifted up and reminded of my potential. I've been reminded once again time after time as I'm guided to people daily that I have so much to work on, so much to learn but by taking the hand of others like Mariel and Frank I can be lead and guided with thoughts of goodness and mercy, and do it with humility and grace.
I had a few days off for recovery after surgery, but started back to work last week. I love my job at USAirways. I really had a breakthrough last week while working. Probably not the place I thought this would happen, but anymore I am never surprised at what, where or who touches my life in a significant way.
I was taking a reservation for a man, just doing my job when out of no where he asked me if I was OK. Not knowing exactly what he meant I asked "Yes I'm OK, does it seem I am not doing my job, or have I offended you?" "Oh heavens no, just the opposite you are lovely to talk to and today I feel grateful it was you who answered the phone" a little stunned I thanked him and finished up his reservation, when I asked if there was anything else I could do to help him he said "Yes, you can" thinking he was going to either change the reservation, have me send him to rental cars or add his dividend miles number, you can imagine my surprise when this is what he said "Did you recently have a stroke? I don't mean to be nosey but your voice sounds a little staggered" for the first time I was finally able to hear the truth from someone, a stranger and for the 1st time a light went off in my head I replied "No sir, I didn't have a stroke but I do have partial facial paralysis and sometimes it is difficult to speak clearly, I'm sorry if you had a hard time with me today" I felt this sweet peace come over me, I am healing, from the inside out.
Facial paralysis has been by far the most challenging misfortunate obstacle I have had to come to grips with. I've felt so many times that I just can't do this anymore, begging for relief, for a complete physical healing. I have definitely felt broken, alone and misunderstood. To finally say out loud to a perfect stranger "I have partial facial paralysis" may seem so insignificant to other people, but for me it was HUGE. My physician's have been perfectly honest with me. Right now, there is not much hope for a full recovery without more surgery, which I was told from the beginning. I like to think I want to hear the full truth, the bottom line, then I can deal with it. Boy, was I surprised at how much I didn't comprehend my own understanding of what difficult was.
I have so many people say "...but you're beautiful" for some reason that "....but" hesitation has penetrated my heart too many times. I know there is not one person out there that has said those words to me who is comfortable saying it, but I've come to discern they love me and really just don't know what to say, and that is OK, I don't know what to say either. The absolute truth is, my soul is trying to heal, and it will take some time for me to be ready to accept this new life I have been offered.
Thursday, December 11, 2014
Well I made it to Cleveland Clinic. Rather than dwell on what is coming up, I tried to focus on more positive thoughts. If any of you do not have a LIVE HAPPY magazine, I am a Live Happy ambassador and would love to get you one, please send me your address, it cost you nothing, but will enhance your life, tremendously, I love it.
I had a day filled with tests and pre-op appointments. It is extremely cold here in Cleveland, not what this Arizona girl is used to. Eric flew in last night to be with me for the surgery, I reassured my surgeon I am flying home on Saturday, his PA was a little shocked at my boldness, but I need to be with my family. One great thing, I am flying in 1st class, drugged up and will hopefully feel no pain.
I would be remiss to say, over these past 5 years I have been so blessed with positive influences, prayers, sincere friends I like to call family, over and over again they never seize to amaze me with their receptive compassionate ability to feel my vulnerability. There are so many who struggle privately, I would be one of them, however I don't have that pleasure, the obvious insecurity and self doubt I have has been public, but has helped me to develop in ways I arrogantly didn't think I needed. To those who struggle anxiously and quietly, please know I pray for you daily--it's the least I can do and I HOPE for some relief to your pain.
Life is so full of ups and downs, no one is perfect, no situation is always perfect, but for me, right now I am doing all I can to become OK with who I am, what I physically look like to others, and work on my worth as a person not an object. I love who I am becoming, and realize I have much more to work on. The beauty of this life, is that we get to start all over again tomorrow with a renewed perspective--and if we don't make it to tomorrow--guess what? There's still HOPE--He will pick up the pieces and carry us through to our new journey.
I love my sisters deeply, they sometimes are the people I know understand thoughts feelings and emotions that frquenly. We all need someone to talk to , someone who really truly understands. For parts of my life Sonya and Kris have been my people. For most parts Eric, my eternal partner understands and helps me to achieve my goals with ambition and constant encouragement. Amazingly my little Recker looks into my eyes at times and I know he realizes and senses my solitude. Yes, you could say I am blessed in abundance.
Friday, November 28, 2014
I arrived at Mayo Clinic early this morning, and can I just say that the people who drive to work between 7-8 am everyday......I am so sorry. It was stop and go the entire way to Mayo Blvd. I will be getting brain scans every 3 months FOREVER. All that really is, is an MRI, 45 minutes of pounding, and hammering on my brain--I survived, not my favorite thing to do, but necessary for Dr. Barr's to see what is going on between my ear and my brain.....not much.
Saturday, November 15, 2014
I believe the worst pain a mother can feel is knowing her children are struggling with something you cannot understand or comfort them with.
There have been times when my doubt has been as wide as the ocean, feeling like the waves need to sweep me away, not wanting to face the pain. Our oldest daughter Kayla and her husband Jeremy have two amazingly beautiful boys. Recker is almost 5 years old, it's so hard to believe how fast he is growing. Ezra will be 2 in February, he's been a spunky, smily fun babyboy. These little angels have brought more joy to my life than I ever thought imaginable. Their laughter and unconditional love is contagious.
|Ezra's squint eye..so cute|
When Recker was 14 months old he was diagnosed with Autism, he is non-verbal but has taught me to speak with my heart and eyes. The past 5 years have been so difficult for Kayla and Jeremy. Something I don't even try to understand, all I understand is that if it were not for Recker, I would have not made it through some days when I could barely get out of bed--he is my sweet baby boy, who saved me from going to a very dark place.
Two days ago, Ezra was also diagnosed with Autism. I was so sure he was just fine, he was making animal noises, something Recker never did, he could point to the different parts of his body, again I don't remember Recker doing that. Over the past few months Ezra has started to regress, although Kayla was trying her hardest to prepare us, it could be true, I just didn't want to believe it, after all Ezra was doing everything different, until he didn't, and little by little he has become distant.
Kayla did everything different with her pregnancy, thinking maybe it would be different, Ezra didn't get his shots like Recker did, she just did everything different--Now we know, his diagnosis comes as a shock to Eric and I, but not so much to Kayla and Jeremy, who I can honestly say have tried to prepare us for.
|Recker School Picture--I love this|
|Recker lives in an awesome world--I wish I could go|
there with him.
When I found out I just wanted to scream "WHY?" I still do, I am hurt, angry, sad and blessed all at the same time, these mixed emotions have rocked my little world, and is going to take a few days, weeks or months to get used to. I just want Kayla and Jeremy's dreams of having a typical child come true. This does not mean they do not love their boys, they love them more than life, but not to hear your child say "mom, or dad" is heart breaking. They need time to mourn, I guess we all do.
I don't in any way shape or form believe these boys are doomed, that they will not have a future that is anything less than we, as family teach them. I know they can and will be, such a blessing to our family and to others. In fact I believe through their journey, they will be the ones who against odds will teach us, through their sweet spirits they will teach us so much more about compassion and tolerance than we could ever learn in a book.
So, it leaves me with doubt, fear and the unknown but I know one thing for sure and I can never say this enough, Heavenly Father send those sweet boys to our family for a purpose. We may never know what that purpose is, but have decided the reason does not matter as much as making the journey with them memorable and happy. Autism is not fun, it is mis-understood. I know so little about why a child is diagnosed with Autism, all I really know is that nothing for me changes, I love them unconditionally, I will take them by the hand as they lead me and guide me back to a place where I want to be HEAVEN.
Thursday, November 6, 2014
Hip and back pain, back in Dr. Freeman's pain clinic today at Mayo. I love my doctors, he is a good man, they all are. Walking into the hospital gave me uncomfortable feelings of remembrance, being in pain for me has become an issue I won't address unless it get to at least on an 8 on a scale from 0-10. The medicines for pain I despise. When I walked into the hospital today I immediately looked to my left, this is where I watched a woman die while the paramedics tried to save her, and I was jealous, I wished it had been me. I'm not afraid to die, but enjoy life right now too.
|Mayo Clinic "the place"|
|Recovery, drinking my daily routine|
|This is what a dead nerve looks like--and it's mine.|
Going to Cleveland Clinic to see Dr. Gastman was to take a live nerve from my ankle and replace the dead nerve in my head with a good nerve, hoping it will grow together with the nerves on either side. IF this works, we will not see any results for a year, and I will maybe get 30% of facial movement back. If it does not work, they want to cut along my hairline pull my face back and take nerve from my left side of my head and connect it with the one on the right, then wait another year. I'm not sure I want to go through that again. Going back and forth to Cleveland Clinic is difficult for me, not getting results or answers is frustrating, wanting to say "WHY" is realistic on some day's.
Getting to hear for the 1st time in 48 years was fantastic, I heard things I'd never heard before, sounds most people I know take for granted. That first night coming home was one of the most spiritual experiences I've ever had, without a doubt the Lord was smiling down on me along with Colby. What I wasn't prepared for was going to work the next day, ready to share my new exciting news was quickly turned to sadness. Actually hearing what people say about me, it hurt, none of them were saying it to hurt me in fact none of them know I could hear it, and they all were saying it out of love for me--still the sting of truth hurts. Going to the store, watching people quickly look away when we make eye contact I've been able to get used to, but now hearing opinions I am the one looking down and away before eye contact is made. I thought I was going to make new connections and share in the beauty of small sounds, be able to give the gift of not taking for granted, the sound of a pen writing on a piece of paper, or the clicking of the keys on the keyboard as we making reservations, the fact that I could for the first time be able to turn the phone volume down. Instead what I heard was "I feel so sorry for her" "She is so strong" "Have you ever read her blog?" "I don' think her face is ever going to be the same" "She used to have such a beautiful smile" tears ran down my cheeks as I sat and heard these words coming from I'm not sure who, as I am still trying to distinguish where sounds are coming from. We have cubicles where we sit, I quickly wiped my tears so no one could see, and took my BAJA off. I haven't worn it since that day to work.
I will decide where I end up, I'm doing what I can to figure all that out, and until I do I can't wear the BAJA. I pick and choose, and I'm taking it slow, because sitting in this moment right now, I'm feeling things I've never felt before. My heart has never beat so hard in my chest than it has in the times when I've been wearing the BAJA. I feel blessed to know, the people around me are sincerely my friends, they are kind and loving, at least nothing bad was said--just the truth--the truth I was not prepared to hear. Reality is, I need to work on me, on my confidence, get rid of the negative and concentrate on the positive. There's a fire in me that I can never deny, I know He lives and He loves me. It is my faith and my hope over the years that has given me such peace, given me strength to endure and enjoy the sweetness of life. However, I've tasted the truth and my heart will never be the same. That is not necessarily a bad thing, maybe I needed a taste of reality. It's just going to take some time to process what it is He wants me to learn.
|Off of my balcony in my bedroom, the moon|
is beautiful tonight, this picture does
not do justice. It is HUGE, YELLOW and