I WANT MY WIFE BACK

SATURDAY, MAY 24, 2014

--I WANT MY WIFE BACK--

First,  before I start on today's excitement, I have not been able to blog for a while, not because of the neuropathy, but because this is a sacred place I like to come, to get real with my feelings and come to a higher ground of healing--I'm having a hard time coming to grips with the new me--I don't like it--I feel like everything that has lead up to this moment was supposed to prepare me, but it hasn't, and I feel like a failure in so many ways--with this being said I want to lead up to today's events.

May 16 -Eric's birthday--I called and asked him to please NOT come to the hospital; I wanted him to spend some time with the family and grandkids--do something fun--being at the Mayo Clinic AGAIN is not fun--he had a tough time agreeing with this--but I insisted.

Ezra and Recker with Grandad on his birthday

I wish I could have been there, but so glad to get this picture text over to me--I love these little guys and really miss them. Eric could go to dinner with the kids and have a great time with the grandkids.

Saturday, May 17

Today, Eric brought me home from the hospital--as happy as I am to be home--I am still drugged up and cannot wait to get myself off these pain meds. If I listed the drugs I am "supposed" to be taking, it would blow your mind--it does mine--I know they are doing this to keep my pain in control, as I was in extreme pain while in the hospital. So I started slowly taking myself off them to ensure I was not in any pain. 

 I knew I did not want to go through the pain I had initially felt, so I have taken every precaution to ensure I am OK. The 1st couple of days, I slept hours upon hours--then tried bit by bit to slowly wean myself from the medicine; today, I am completely off of all pain medicine and back to the regimen I was used to before this episode.

  We arranged for a home nurse to come in and teach Eric how to administer my antibiotics twice per day through a PICC line in my upper arm. Every morning, Eric administers my medicine through my PICC line; that evening, 12 hours later, he does it again.
Last night the home care nurse came by to take blood--it was a difficult take--my PICC line was clogged up, and it took her over an hour to pull any blood out it felt as if blood was being pulled from my heart.--and I think she just barely got what she could.

Today is Wednesday, May 21.

Eric and I got up early. He wanted to be with me at this appointment today. First, he had to access my PICC line, which was extremely hard for some reason. Now both sides were clogged up, and Eric was putting all of his weight into it he was able to finally push through, with little blood return. Once that was done, we headed on our way to Mayo Clinic--I looked at myself and told Eric I don't think I have ever left my home looking like this. He didn't see anything wrong with it. My shirt was wrinkled, I had no makeup, and bruises were on my face, arms, and hands. I was a mess. 

To walk into Mayo Clinic today was excruciating. The smells hit me from every direction--I could see the people I walked past looking at me as if I had a massive tumor growing out of the side of my face. I thought I should have left my sunglasses on and worn a mask. I would look perfectly normal here--when we checked in, the receptionists saw my PICC line hanging out of my shirt and asked me if I was supposed to be on the 7th floor at the hospital (equal to the 3rd floor on the Shea Campus--ports, PICC lines, and chemo) I said, "I have no idea, the lady who called yesterday asked me to come for blood work to be done before my appointment with Dr. Barrs." I assumed she knew it was to be taken from my PICC line. She said no, it was to be drawn from a vein on my arm. I was immediately called into the lab, where she proceeded to find a vein--nope, not that one. After several attempts with insufficient blood being drawn, she tried one last time in my right hand. Yay, it worked. She was able to get just enough blood.

I found out the blood work was being ordered by my endocrinologist, who had recently changed my thyroid medicine and was checking to make sure it was a high enough dose--I suddenly remembered I had that appointment with her a couple weeks ago. Hence, she had no idea what I had been through these past weeks. 

As we stepped out into the waiting area, something was always going on, but today I was not in the mood. Still, a part of me watched as people came in and out. Today two people stood out in my mind. One was a doctor who arrived in his scrubs and sat down. He was looking around, and our eyes met, and then he was called back for labs. A man and his wife were waiting to see an ENT in the other corner of the room. He tried to speak. He had to activate his voice by putting his finger on his throat. I watched him scare the lady off her chair next to him as he leaned in to ask her a question about some video game she was playing, she apologized, and he then returned the apology. This brought the 1st smile to my face in weeks. Why? Maybe because I saw that they, too, found humor in it.

We were called back and sat in a room where we waited for a very long time, but not longer than my appointment was supposed to be. We had just gotten there too early for lab work. Dr. Barrs came in with his resident Dr. Coursin (Andy). I had been in such a foggy head the second I saw him and remembered seeing him quite often at the hospital. He is a pretty familiar face, one I enjoy seeing; he's quiet yet seems to know his stuff.

I told Dr. Barrs I had taken myself off of all pain medicine--I think he was surprised but mainly wanted me to be honest with him about whether I was feeling the pain or not. I reassured him and Eric that I was not in pain and was trying to de-fog my brain from all that junk. He agreed it was OK as long as my pain was gone.  

Then he took a look inside my ear--it is really corroded with dried blood; I was hoping they were going to clean that out today--nope, he filled it with bacitracin which was like filling my ear with Vaseline, and the hotter it gets outside, the more it melts and makes a mess. Then he asked me to come to take a seat next to Eric. He told me exactly what happened to me during my stay at the Mayo Clinic Hotel (Hospital). Within days, the nerve he covered with a graft of skin became gangrene; in other words, the nerve died. He gave Eric a picture of it; the flesh around it is healthy, but the nerve died. It was black--and is now being covered by packing in my ear.

OK, so what is the next step? Dr. Barrs begins by explaining he has a team of Doctors available to help with surgery on June 03. There were some options. Dr. Barrs explained the minimum was to cover the nerve with a muscle graft and wait. Or go in and graft over the nerve and have another doctor there to do something with the nerves in my tongue to reposition over to the nerves that are not working in my face. 

I'm sure I got some of this wrong--the whole time he was talking, I felt like I was in a charlie brown cartoon, and the teacher was talking, but my ears were not understanding--waaa waaaa waaa-- I continued to look at Eric and make sure he is taking notes.  

Eric said, "I want my wife back, and I want her to be HAPPY again," Dr. Barrs said, "if you're asking me if the right side of her face is ever going to be the same again, the answer is no. I'm sorry, but the nerve is dead, and we cannot bring something back to life that is dead. You need to start loving your wife and forget about her face ever looking the same again." I could feel the tension. Eric did not know how to respond except, "I never said I didn't love my wife. I just want to see her happy again."  

Dr. Barrs looked at Eric and said, "She needs to learn to love the new Monya. I was fond of the Monya you and I used to know, but I also love the new Monya, but I need you both to understand she will never smile again." Eric asked him if we could have a few minutes alone. When he left the room. Eric and I looked at each other with questions what should we do next? Are we being hasty in making a decision? Actually, just the opposite, we looked at each other and said, "We are not making any decisions today; we are going to wait, pray as a family, and make a decision when we are ready. With nerves, I know there is a window of opportunity, and we need to make decisions quickly. However, not today, not now, please. I'm so confused.

 Fighting back the tears, trying again to be BRAVE--I think I have finally gotten to a point where I am ready to say, "Why me?" I've done everything I've been asked to do, all Dr. Kreymerman, Dr. Magtibay, Dr. Northfelt, and now Barrs have asked of me. I have lived a life worthy of feeling joy, I know my tears are not meant as a surrender, but I'm tired. The pain is not going away, and I'm not talking about the physical pain. This pain comes from deep within me--it makes me question everything I have preached to my children to live by. I trusted Heavenly Father; why was he abandoning me?  

I believe there are times when life throws us into unexpected storms, and it's at those times we are forced to face our most profound pain--it is then that we have to dig deep and decide if the pain is worth it; I know this life gives us disappointments and HARD things come. I have been forced to stand up, be BRAVE, put on my big girl pantie,s and move on. Today, I'm not there--I just want to cry, and I deserve to cry until every drop has left my body--

After leaving Dr. Barrs's office, we headed up to the infusion floor. The seventh floor of the hospital is where the chemo is infused. The antibiotics I am being infused with twice a day are very strong and cause my body not to work as well as I am used to--I spent a bit of time in the bathroom several times while waiting to be called. Eric took care of checking me in and getting our beeper. I positioned myself in chairs so we could see the outside mountains, dessert, and sunshine.  

I kept thinking about Dr. Kreymerman; most of the time, I look forward to these visits knowing I will be able to see him and Heather and even have lunch with them between appointments. Today, Heather is not available for hours. I'm nauseous, taking in the smells of this floor, this hospital where I was just discharged from last week--it's more than I can handle. When I close the door on this place, it lets itself back in. For some reason, it enters my life uninvited. It allows me to go, but it finds me again. I can't help but wonder how many times I can pick up these pieces and start over again. 

I watched as a nurse came and got Shirley, pushed her back in the wheelchair, asking her if she was ready for her IVIG infusion today? What kind of question is that? Who says, "Hell yeah, I'm ready to. Let's go. It's a party back here?" 

This is not just passing through. This one is BIG. Just as soon as I feel I'm in a good place and can move forward, like I've let this go, it always finds me again. I can't handle it anymore. I wish I could say the tears release my pain, but in so many ways, I feel like I am constantly learning to breathe again and again. This time it's more than tears. It's the sobbing, not wanting to be left alone, I can't handle. I'm sorry this is so real and raw. I know God did not make my body a place to constantly feel this pain. I wonder how long the depression and despair will last. This is the VILLAIN taking on a different name.

 I watched as plenty of people came in and out of the infusion unit today, some bald, some carrying their chemo packs on their backs in a backpack--I was trying every way I could to have a pity party, but then someone else would step off that elevator and give me a new perspective--a man with one leg, being pushed in a wheelchair by a not so patient wife, or a patient wearing an oxygen tank.  

It took quite a while before we were called back, but a cute young, well-qualified PCC line technician finally took us back into a room. She could not access it and had to put some medicine in the line and asked us to return in an hour. We went down the elevator. I just wanted some fresh air. I heard a "code blue" at the entrance of Mayo; seriously? Could anything else happen today that would push me over the edge? Right before me, I watched a woman take her last breath. They worked as hard as they could, and I watched and wished it was me. What the hell of an exit--drop down at the entrance of Mayo Clinic on your way to your car, take your last breath, and be done, done with Mayo, done with pain, done with having to make medical decisions. Today, I have no grace left in me, no patience, no remorse, no regrets, and no feeling.

Eric was waiting for me in the cafe. He wanted to grab a bite to eat--none of it looked good, but I tried a bit of everything-- grilled cheese, tomato and arugula sandwich, hot dog (something I never order), minestrone soup, and a white chocolate raspberry bundt cake--none of these were eaten--just itty, bitty bites--As I walked outside to find the perfect table, I glanced over. I saw Tony Mendez, PA, to Dr. Barrs. He didn't even recognize me.

I've always said, "since I've done away with sugar, processed foods, and white flour, per Dr. Northfelt's request, if my cancer comes back, my final meal will be filled with all of the above" However, today showed me the exact opposite--none of this looked good to me, none of it tasted good, everything I eat tastes like metal--this is from the infusions of antibiotics. I want to throw up every time I try to eat--and it mirrors how I felt going through chemo.  

If I am honest, I would much rather be sitting in front of Dr. Northfelt and having him tell me...these exact words, "your cancer is back"  At least with cancer, it was challenging to go through. Still, the VILLAIN did not win; I hate when people say, "she or he lost their battle to cancer," but no, they didn't. Most people who go through cancer treatments come out on the other side of it a better person, a stronger person, given a chance to redeem themselves and help others to do the same. I feel this thing with the nerve in my face is not going away--I'm not sure how I can recover from this.

 I feel like I have a heavy load. I can hardly breathe right now--my strength is gone, and I'm weak--I don't think I've ever felt this emptiness I'm feeling now.  

I've asked friends and family to pray for me, to ask the Lord to heal me, or to give me strength to endure whatever is coming next. Maybe their prayers will be heard. How many times do I need to do this? Eric said softly, "You are beautiful." Today, right now, I don't want to hear that. I'm sad, I'm scared, and I'm angry.

 After we finished up my PICC line, we were given the green light to go home--I ran to the elevator, got off on the 1st floor, and ran past the piano player. As I passed the area where the lady had just passed away less than an hour ago, I glanced over and looked at the people sitting in the chairs surrounding that area and said to Eric, "I wonder if that guy knows an Angel got her wings today, exactly where he is sitting" and then I ran as fast as I could to the car I mean I was like a bull trying to get out of the pin--Eric said, "Sweetheart, you really need to keep your voice down while you're walking or running through the exit."

This has been a tough week; looking in the mirror, I am a different person--my face has partial facial paralysis, not bell palsy. I've been told it is permanent and that only 2% of people in the world have it for the same reasons I do. I don't want to look in the mirror--this is much worse than when I looked at my breasts for the first time after my mastectomy, at least then I could cover them up and have them fixed, and the baldness was hard, but it never defined me--it grew back. No, this is much worse. How can I continue in this body looking like this? So many people will say, "but your alive," or like Dr. Barrs told me today, "But you have your eyesight" Those words pierce my heart right down to my soul--I know those are supposed to be inspiring and help me to move forward, but right now I need to process what happened today.

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Mother's Day 2014

 

WEDNESDAY, MAY 21, 2014

Mother's Day-

I am still in Mayo Hospital for Mother's Day. There may be some typos. As I try to write this it is very painful, and writing is hard. Today, the kids came to see me, and I got a lot of text messages. Today I decided I am going to let my BRAVE come through so my kids can see me. I tried I was trying so hard; I even ate a cupcake. The kids brought me a necklace from sister Kara Kelly, she is always so generous, and I am grateful for the necklace it says BRAVE on it. I am not feeling the BRAVE today--trying, though--

My body is not reacting the way I want it to. I hate hospitals, pain medicine, and how my face looks--but I love how my beautiful children and spouses look--they are so great--I have a great family and have so much to be happy about. 
 Eric brought me the new Live Happy Magazine yesterday he knew I would want to see it.

Love these girls

Beautiful flowers

Ezra

Liz and Danny,friends up for a visit

choose to live happily

my boys--Blake, Eric and Brian

Bonus--2 cupcakes--I wish I could say I ate them--
but I tried both and they were good.

Mastering the Mundane

 

WEDNESDAY, MAY 7, 2014

Mastering the Mundane

It looks nastier than it really is...it broke last night. Today, I'm happy--not for any other reason, but I'm Alive, I'm Free, I'm Me--I will keep waking up, and I was still Monya. Still here, the sun is shining through my bedroom window; I got up and walked out onto the balcony off my bedroom--I remember the day when I could look out there and see the Superstition mountains of Arizona. Although, they are more like hills, comparatively to the huge Mountains in other parts of the world and country. For us born and raised here in Az we love our mountains.

 I realize I am living this continual roller coaster, one month great, and 3 months not so great.  I am always constantly wondering; what am I not getting? What is it that I should be learning here? I've tried to run and hide, I've tried to ignore it, I've even tried to pretend this is just a big joke...jokes on me.

When Blake was in the Dominican Republic and I was enduring the treatments of chemo and radiation, I often times went in his room and knelt to pray, begging and pleading with the Lord to take my pain away, asking why my son had to be gone for so long, I just wanted one more hug from him, thinking back now I remember those days as daily trials, things were happening so quickly I had a ray of HOPE, knowing Blake was given a blessing by President Greer the night before he left for the MTC telling him if he remained obedient the Lord would bless our family, and that I would be here when he returned in 2 years. I thought when Blake came home, the trials would magically end...after all Blake did all he was asked to do. He was obedient, he had the best two years of his life, and our family felt the overwhelming power of the Priesthood and the Holy Ghost with us, we saw miracles happen with my health.   I had it all figured it out, and I prayed thanking Him for bringing my son home safely. Little did I know, my journey was just beginning. Have you ever had a beautiful heart break written and sung by Hilary Weeks? Whenever I hear that song, it is as if it was written fo me.  Every fear I had and every pain I felt I would pray he would take it all away--I never dreamed I would make it through, now that I'm here where I am right now still with sleepless nights and continual fear, I don't think I would ever trade any of that for anything, nothing I say or write can come close to explaining the emotions I have had through this beautiful heartbreak of mine.

He wore those CARS swim trunks all summer

I love this...Blake thank you

dirty like a boy...he knew Boston was #1

Why get a bowl, bonbon lets me eat from the carton...shhh don't tell mom

Recker would live at the ocean, he never tires of it

Just like Blake was, Recker loves the outdoors

school picture--I love it

Today Recker was here, and I watched him swim, no words were spoken I just wanted to watch his happiness, I wanted time to stand still so I could remember every minute every second of his laughter. This little angel boy has brought me such happiness, I just want to squeeze him, I hope he knows I love him so much; I would gladly take away his trial, to hear him say "I love you" to his mom and ad.  Every parent deserves to hear those words, but with Recker he shows his love in so many other ways--I have an open wound on my upper arm where the doctor took skin to graft into my ar.  Today, when Recker was swimming he  scratched his knee and he showed it to me, I blew on it gave him a hug and he was off to jump, splash and play.....when it was time for him to leave he clung to me, not wanting to leave, I bent down to hug him, it was then that he saw the sore on my arm, and in an innocent pure gesture he took my face in his hands stared into my eyes, trying to communicate he lifted his shorts up to show me his scratch, then he kissed my arm. He was trying to show me, we were both scarred with bruises--at that moment I couldn't explain the rush of emotions that came over me, this little boy knew how to enter my heart, fill up my eyes with joyful tears that seemed to flow so easily today. I felt like my heart was bursting to understand, I could not catch my breath enough to be able to say, "I Love You", he kissed my cheek and then my arm. He took me by the hand, and we walked to the car holding hands, I hugged him like it was the last day I would ever see him again.

I gave a testimonial at one of our Nerium meetings, usually, I am composed because I have learned to say when people ask how I am doing, "it couldn't be betterer" I'm grateful when I least expect it, the clouds part and a ray of light reminds me who I am and that God has heard every single prayer today was one of those days I think because I have been so desperate for answers, I learned today I have a purpose, something totally different than what I had expected--answers came clearly.  Standing and having an opportunity to explain my story and my "why" for being involved with this company, I listened to others who spoke before me, and each of us had a different "why" some for financial freedom, some for self-development, single worthy beautiful women sharing their struggles and wanting not only to be self-sufficient but to find fulfillment in helping others find their true potential and happiness.

 When it was my turn to speak, the walls were taken down,  it came from my soul, as I explained my "why" I began to cry (so much for composure), I looked around this room filled with people who are dedicated hard working men and women, my eyes were brought to Crissy Caufman and her sweet husband, I had no idea who they were a few months ago now I include them in my friendship circle I have found, Liz Decker, never knew her before, she's amazing, in the back Danny Jones gave me chills an impressive young man who understands the Atonement, understands life's struggles and teaches me more than he knows, Shelli Richardson who listened to the spirit a few months ago not knowing -- I too was praying for a change to  me.  So, my "why" is different than most in that room, trying to bring me out of a cancer Mayo Clinic-filled life, I've found a way to reconnect with old friends and make new lasting friends if I never become monetarily wealthy being amongst happy uplifting people with integrity helping others is helping to refine me as I go through the bitter and sweet.

 As crazy and strange as it seems, I have found another "why" Recker, he's one of my heroes, he has more love and sweetness in his little 4-year-old body than some 40 years old's I know. Some may not know what a difficult financial burden it can be on a family trying to raise a child with special needs. I would love to provide a home for them where this little guy can run outside and play, a place to call me.  If I can give this my all with Recker in mind, I will be able to achieve that all. I will never give up, I just need to learn how to master the mundane -- showing up, doing my part, and then doing it again the next day--for every no I get a little closer to a yes, so I try not to take it personally and recognize it as a learning experience.  The joy I will feel when those dreams become real is REAL. It is going to happen...So did anyHappenrnthing today, yes, a big YES, nothing thatgiantdidn't already know but some things I have forgotten to tap into...remember two things I am blond, so it takes longer to sink in... haha and,  He always sends His love it has given me HOPE in the darkness and helped me back into the light, I've been blessed to see that the give and take are exactly what we all need to help us become who He wants us to be, as He allows those trials to strengthen us, I'm looking forward to seeing what the next year will bring fo me.  Something extraordinary is about ready to surprise even me; I can do anything with Him on my team.

What Happened?

SUNDAY, MAY 11, 2014

What happened?

I am in extreme pain; it hurts to type this. I don't know what happened; I took a hot bath and felt fine. Eric came in to check on me and ensure I hadn't drowned. I laid down to sleep around 3:30 am, and suddenly had massive pain in my ear, going down into my jawline and throat--it's difficult to see. I've had some liquid in my left ear this week, but it only lasted for about 3 days and finally cleared up. Other than that, I think I've done well without pain medicine. The way I feel right now is I wish I could go to sleep and not wake up--I've taken the pain medicine to see if it will help--but the pain is getting worse--my eyes are blurring, trying to type this out as a blind deaf person is hard--but just in case I don't wake up I want Eric to know what's happening.

After my bath, I brushed my teeth and changed out the cotton ball because it was soaking through. I felt a pop in my right ear followed by immense pain--I was supposed to be at Dr. Barr's office at 12:00 today, this is awful--I can't do this; I feel like I have no control my legs won't stop shaking and now
My body is quivering, I cannot stop moving my legs, and my arms have no control--the pain is that bad.
I can't type anymore, it hurts too badly.

Written Wednesday, May 7th

Eric said, "Goodbye have a good day," and kissed me goodbye. I looked at the clock. I still have 3 hours to decide what I will do, I'm in so much pain. I got in the shower thinking the water might make me feel better--something is wrong I can feel it--pain in my inner ear is now shooting down my jawline and to the back of my skull--the nerves in my upper ear are burning, electrical shooting pain it won't go away.

No tears were coming; I was more afraid than anything else. My good friend Jori came by the house to pick up some Nerium for her daughter Emily, and she mentioned, "do you feel OK? you look like you have bell palsy?" I told her I was on my way to see the doctor and would find out more. I went upstairs, and sure enough, the right side of my face was drooped and sagging, no control over the nerves or muscles, my lip is drooping to one side, and I cannot shut one eye.

I drove myself to Mayo, arriving early, still not being able to control the pain, shaking while I waited in the waiting room. It didn't take long. I was the 1st one they called. Dr. Barrs is usually always on time, and in he came asked me to step up on the table, looked in my ear, cleaned out the debris, then helped me to the chair--he could see without asking that I was in pain--and the lack of facial control I'm sure was concerning to him. He got Kathleen, and she took me to the admissions area and explained I would be admitted into the hospital; the fourth floor in cardiology was the only bed they had for now. What? Who cares what bed I'm in? I just want to get this pain under control. I said goodbye to Kathleen and gave her a big hug; she is so sweet I enjoyed her when I went to Dr. Barrs office she is a beautiful person inside and out, and I know Dr. Barrs relies on her a lot for her professionalism and support.

As I sat in the waiting area, I could not control the shaking pain I was feeling, waiting for them to call my name. It seemed like I had been here forever. Finally, they came in a wheelchair, and they took me to the fourth floor. I remember the doctors in the elevator. They were cheerful and happy; why? It's not Friday...but as I listened, they were excited about a surgery they were going to do. Oh dear, that is the last thing I want to hear about right now--just get me to a room and take this pain away. They did, but not until Dr. Barrs resident came around to see me. In the meantime, I called my sister Sonya bc I couldn't contact Eric. 1st thing she asked, of course, was, "did you drive yourself?" "um...yes, I did, you know how I feel about people waiting around for me." she sighed and "said I'm on my way, and I'll call Marian and Eric"  I said "No I won't be here long and I hate people having to drive all the way out here"  She then asked if I thought she should tell my kids, I said yes, but not to have them come, I don't remember much of that conversation, the pain and agony were throbbing and uncomfortable.

Wednesday was quite a day filled with testing, pokes, blood draws, scans, MRIs, and CT scans. As they began to get me dressed and ready, I knew this was not going to be an in-and-out day. 

Blake was the 1st one to arrive; he kissed my head and said, "I love you, mommy." By now my pain was beginning to get worse. Sonya, Kris, and Eric had all arrived. My pain was so bad that the nurses had to put meds through my catheter and of course, it was difficult for them to find a vein. By this time I was in severe pain and was curled up in a ball of pain, the right side of my body was shaking severely and I was whispering to them to please just put some medicine in my IV that would put me to sleep and not wake me up...." sorry sweetie, we can't do that" "oh but Eric it is excruciating, I want you to just get a gun and shoot me in the head" 

The medicine was finally administered but by the time it had entered my mainstream I was in pretty bad shape, it looked like I was having a seizure with my body curled up and still shaking, my husband, Sonya, Kris, and Blake all witnessed this awful attack. Then later that night in the ICU all my children were there and had to see it again...I feel so bad that they had to witness their mother in such pain--I'm sure it was exceedingly difficult for them. I have never in my life felt that type of pain, and my body reacts by curling up, pounding the bed, and wanting to be put to death. Difficult to hear I'm sure but also try to imagine it is difficult for me to write too, however it is my reality. I later read some of the text messages that were coming through on my phone, and people who I love very much need to learn what to say and what not to say. This is my journey, not yours.

 I am trying to deal with it the best I can, I rely on the Lord, I am not depressed, and I'm past that, yes there are times I have moments of doubt, but I have very few people who can relate to what I am feeling.  I love my friend Heather who has been here every day to check on me; she has been a great strength to me for the medical questions I need to be answered, which, quite frankly, I do not understand the lingo. She explains it to me in terms I can understand, sometimes not so easy to hear but still the truth, and I like it straight she knows that. I've said it before, and I'll repeat it, there is no one living human who knows what I am going through but our Savior--Just as I do not understand fully the pain of going through a divorce or the heartache of losing a child--the Savior does. Those people can turn to him for strength, which is what I have learned to do.

I kept telling Eric I had seen everyone I cared about seeing but Recker, my sweet little Recker. Just as they were wheeling me off to surgery Kayla brought him in, he did not like to see me in that bed, he thought it was for him, because unfortunately he too has been in hospital beds, and it was a reminder; I'm sure to him. It made me sad to hear him cry so hard; he was melting down, and it brought tears to my eyes, I love him so much and wish I knew what to say or how to understand, but then again, the Lord is the only one who can utterly understand exactly what Recker feels.

 Off to surgery, I went. On the way, I had the pleasure of seeing Doctor Magtibay walking toward my bed. He said, "I thought I heard you were here, and he gave me a big hug" This was a happy thought to go into surgery with he has always been one of my favorite doctors on my team. I remember the mask being placed over my face and waking up in recovery. It did not take me long to wake up, and they returned me to my room. My family was all there, with the exclusion of little Ezra, Recker and Kayla, and Jeremy. We also got the unexpected and genuinely nice pleasure of visiting with the Lentz family, Terry has worked with Eric for years with Blandford Homes, and his wife Diana and I have also become friends. They brought these beautiful Hydrangeas I love them they are my favorites, those and Renuncuulas.

Terry & Diana Lentz

Diana is known for her beautiful floral arrangements

Love my sisters-Kris and Sonya

The night nurse Adaesey--Love Her

Haleigh Kaitlyn and mama.
.it looks like I'm sad, but the facial nerves won't let me smile

making light of the bells palsy--love the humor of my son in laws

and my daughters---I really did try to smile

Love My Girls. Just missing Chloe and Kayla

Just can't keep that eye open

Dr. Barrs came by on one of his days off. He is concerned about my condition and wanted to make sure I was aware of the severity of the ear infection and that my pain management was under control. The skin grafting he did on my surgery I had 10 days ago was already turned into gangrene. This means the skin is dead, and there is also some infection that is being treated. Right now, I have the infectious disease doctors on board yesterday they took 60 mm of blood out on my hand, the only vein they could find, however, it took them about an hour and a half to do, and barely got what they needed. Neurology is helping with the bell's palsy, but we are also concerned that some facial muscles and nerves through my cheek and jawline, then up through my skull at the base of my brain, are being affected. What will happen is really up in the air right now. I spoke with a doctor who works with Dr. Barrs about doing a flap to help with the disfiguration--I've been drugged up so much because of the immense pain that I don't know from one day to the next what has happened. I love my doctors, Dr. Howard is so great, and I am eternally grateful she is on my team working with Dr. Barrs. I'm not sure what I have done to deserve such beautiful and wonderful people on my medical team, but I feel like all the medical angels were called in to be on my team, especially picked out for me; I can never say thank you enough to them.

The pain is only under control through the regimen Dr. Howard has helped with it. It seems when I get up and walk around, it accelerates the pain and is excruciating. I need to get circulation so we have a good hold on keeping the pain level as much as possible at about a five with one being the best and ten the worst. As soon as it gets up to seven I try to get to the first dose of pain meds, then go to the bathroom, take the next dosage, and make a walk around the nurse's station with the help of one of the nurses, then by the time I'm back to my bed the level of pain is usually nine or ten. Still, I am trying to get the shaking and seizure- episodes down, so we can move forward, I will be here for a while.

This is about all I can type for now, and is caught up--I am looking forward to seeing my family for Mother's Day and want to wish all my friends Happy Mother's Day to each of you. Take those sweet kids in your arms and love them, unconditionally love them--let them know you care and that you are here for them NO MATTER WHAT--

for now, I love you all xoxo Monya

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Mastering the Mundane

 

WEDNESDAY, MAY 7, 2014

Mastering the Mundane

It looks nastier than it really is..it broke last night.

Today I'm happy--not for any other reason but just because I'm Alive, I'm Free, I'm Me--I woke up, and I was still Monya. Still here, the sun is shining through my bedroom window; I got up and walked out onto the balcony off of my bedroom--I remember the day when I could look out there and see the Superstition mountains of Arizona. Although, they are more like hills, comparatively to the huge Mountains in other parts of the world or country. For us born and raised here in Az, we love our mountains.

 I realize I am living on this continual roller coaster, one month is great, and 3 months not so great. I am always constantly wondering, what am I not getting? What is it that I should be learning here? I've tried to run and hide, I've tried to ignore it, I've even tried to pretend this is just a big joke.... jokes on me.

When Blake was in the Dominican Republic, and I was enduring the treatments of chemo and radiation, I often times went into his room and knelt to pray, begging and pleading with the Lord to take my pain away, asking why my son had to be gone for so long, I just wanted one more hug from him, thinking back now I remember those days as daily trials, things were happening so quickly I had a ray of HOPE, knowing Blake was given a blessing by President Greer the night before he left for the MTC telling him if he remained obedient the Lord would bless our family, and that I would be here when he returned in 2 years. I thought when Blake came home, the trials would magically end. Blake did all he was asked to do. He was obedient, had the best two years of his life, and our family felt the overwhelming power of the Priesthood and the Holy Ghost with us; we saw miracles happen with our health.  I had it all figured out, and I prayed to thank Him for bringing my son home safely. Little did I know, my journey was just beginning. Have you ever had a beautiful heartbreak? Whenever I hear that song, it is as if it was written for me. Every fear I had and every pain I felt, I would pray he would take it all away--I never dreamed I would make it through; now that I'm here where I am right now,, still with sleepless nights and continual fear, I don't think I would ever trade any of that for anything, nothing I say or write can come close to explaining the emotions I have had through this beautiful heartbreak of mine.

He wore those CARS swim trunks all summer.

I love this...Blake thank you

Dirty like a boy...he knew Boston was #1

 

Why get a bowl? Bonbon lets me eat from the carton...shhh don't tell mom.

Recker would live in the ocean; he never tires of it.

Just like Blake, Recker loves the outdoors.

School picture--I love it

Today Recker was here,, and I watched him swim; no words were spoken. I just wanted to protect his happiness; I wanted time to stand still so I could remember every second of his laughter. This little angel boy has brought me such joy; I just want to squeeze him; I hope he knows I love him so much; I would gladly take away his trial to hear him say "I love you" to his mom and da   Every parent deserves to listen to those words, but Recker, he shows his love in so many other ways--I have an open wound on my upper arm where the doctor took the skin to graft into my ear. Today, when Recker was swimming, he scratched his knee, and he showed it to me; I blew on it, gave him a hug, and he was off to jump, splash and play.....when it was time for him to leave, he clung to me, not wanting to go, I bent down to hug him, it was then that he saw the sore on my arm, and in an pure innocent gesture he took my face in his hands stared into my eyes,  trying to communicate he lifted his shorts up to show me his scratch, then he kissed my ar . He was trying to show me we are both scarred with bruises--at that moment, I can't explain the rush of emotions that came over me; this little boy knew how to enter my heart, fill up my eyes with joyful tears that seemed to flow so quickly today. I felt like my heart was bursting to understand; I could not catch my breath enough to say, "I Love You"; he kissed my cheek and then my arm again. He took me by the hand, and we walked to the car holding hands; I hugged him like it was the last day I would ever see him again.

Usually, I am composed and I have learned to say when people ask how I am doing, "couldn't be better" Having this moment with Recker today, a reality was made clear to me, we are a forever family, we are not without trials, every family has them, they manifest themselves in different ways from family to family, but none of us are without problems. I'm grateful when I least expect it, the clouds part, and a ray of light reminds me who I am and that God has heard every single prayer, Heaven surprises me constantly when I least expect it...today was one of those days I think because I have been so desperate for answers, I learned today I have a purpose, something totally different than what I had expected--answers came clear.

As crazy and strange as it seems, I have found another reason to live Recker; he's one of my heroes; he has more love and sweetness in his little 4-year-old body than some 40 years old's I know. Some may not know the difficult financial burden it can be on a family trying to raise a child with special needs. 

So, did I learn anything today? Yes, a big YES, nothing that I didn't already know but some things I have forgotten to tap into. remember 2 things I am blond so it takes longer to sink in...haha and,  He always sends His love it has given me HOPE in the darkness and helped me back into the light, I've been blessed to see that the give and take are precisely what we all need to help us become who He wants us to be, as He allows those trials to strengthen us, I'm looking forward to seeing what the next year will bring for me. Something unique is about ready to surprise even me, I can do anything with Him on my team.