In The Living Years II

I mentioned in Part I that when I first heard this song, I was reminded of my relationship with my father. I didn’t realize, until later in life, my father was the one that was imprinted on my heart and mind. He was the one I measured all men by and if they didn’t measure up, I either wanted them or I rejected them. To this day, I am not inclined to respect a man with “soft hands”.

Of course, he was the one who was the most distanced from me as a child. After the birth of my youngest sister, he ran from the idea that he had a special needs child. The doctor told him that he was the reason for the extra chromosome and he was a perfectionist in all his ways.

Naturally, he didn’t want to be reminded that he did not produce a perfect child.

In today’s understanding of Down’s Syndrome, I don’t know if that “fact” still holds up to the light of day, but it didn’t matter then. He went from playing and giving attention to me to being out of sight. He would go to work before I woke up and he didn’t come home until after I went to bed. He was there on weekends, but he was always busy or fishing.

I learned to fish from an early age. He bought me my first fishing pole at the age of 8 years old and I caught a 5 lb small mouth bass on 2 lb test line…I proved my worth. If I wanted time with my dad, it was done by fishing with him. There was always pressure on me because if I failed to catch fish, I wasn’t allowed to go the next time.

The other part of my life with my father was being his “gofer”. The gofer was the person that ran after whatever part or tool that was needed by whatever engine or piece of machinery that he was working on at the time.

I learned the names of the tools in the tool box. I learned the basics of the combustible engine and, even though I don’t put my hands on things, I am not half bad about diagnosing what is wrong with an engine by listening to it.

That is what it took to spend time with the first man that I ever loved. I learned to step into his world and he never crossed over into mine.

My father and I were very much alike, however I learned in my teenage years that I didn’t respect his volatility and his emotional decision making. That seemed to bring intense arguments that resulted in a slap across my face. Usually, that was where he would strike because, by the time I was 16 years old, I was taller than my father.

The last time he slapped me, I remember hearing him walk down the hallway and I knew that I was going to get one in the mouth. After he found me, he slapped me for talking back to him. I remember looking deep into his blue eyes and I told him, “You will be sorry for that.” I turned and went into my bedroom and locked the door.

If he wanted to, I knew that he could burst through the door and, if he did, he would deliver a sound beating. Maybe he knew that the beating would have only made me more resolved. Like I said, we were alike in many ways and a beating would have only solidified my stubborness and, by that, set the stage for another argument. I had ideas of my own and I would not let them go until someone proved them wrong.

To my surprise, (I am sure my mother intervened) my father finally read the brochure that I brought home. I wanted to go to a music camp at Indiana University. It was an honor to be of a caliber of voice to be able to attend this camp over the summer months and I wanted to learn more about voice and have the experience of singing with some of the best in the state. ( IU was known nationally for its School of Music). My father was opposed because he believed that nothing good could come out of Bloomington. He believed that it was “Sin City” and no daughter of his was going into “Sodom and Gomorrah”.

In the middle of the night, I woke up and went to the bathroom. I saw my father reading the brochure that he refused to open. For the first time, I saw him in the process of reversing himself and really thinking about making a decision. It was a milestone. By morning, he said that I could attend. By this simple action, I regained a little of the respect that I lost for him.

My relationship with my father was changing from that point forward. I wish I could say that it was for the better, but it wasn’t. I became the voice of reason in his fits of anger and he resented the fact that one of his children would say what they thought. On most occasions, my thoughts ran counter to his. There was always the threat that I may have a better idea. I was not welcomed into his life.

Sadly, he could never see that independent thinking was the lesson that he taught all of us. As children, my siblings and I were never allowed to say the word, “Can’t”. We always had to accomplish the task even if the usual way didn’t work. We were required to find a way that would work. Today, I think it is a college couse called “Critical Thinking”. My father was the professor and we all learned this lesson, not with grades, but rather with approval. 

He never realized that his standard pushed all of us to achieve regardless of education or lack of it. He never allowed anything to stand in his way and he was not going to allow his children to get by with “standing still” in the face of a problem. He gave a great gift by insisting on this kind of thinking. Yet, when it came to him, he lost sight of this lesson that he taught so well. This kind of thinking became the corner stone of all his children’s success. Funny, he never saw us as successful. Maybe, it was because all he saw in us was himself.

I wish I could say that my father and I had a moment in life where we could have said all of the things that needed said. But, like in the song, his pride and mine kept us from saying those wonderful things that a father says to a daughter and a daughter says to a father. Even at his death, I wondered if he loved me.

I have no memory of being “Daddy’s little girl”. I never was that to him. I was his “gofer”… the fisherman that could out do him if he took me along. I eventually ran his business after the death of my brother and my “style” was successful, but he didn’t agree with it.

To know my father’s approval was something that I seldom achieved.

So, when I hear this song, I understand the verses so well. And when I hear other songs that sing of a Father’s love and protection, I don’t have an earthly pattern to refer to. I wanted one. I needed to know what it was like to dance in my father’s hand without critism or watch his face smile at my performance. I never knew if my father would come to my rescue because his kind of love was so conditional.

In response to this uncertainty, I found It very difficult to trust a loving Father God, yet somehow, I do.

Maybe I do because I watched my husband with his children. It was wonderful to see how he would be the father that I wished for. I watched as he quietly worked behind the scenes to do for them, at a great personal expense, the important things that showed them that he would always be there for them.

I saw his love for them as he watched them play and how he would take up for them when anyone was unfair or when they were hurt by others. He was always in their corner. He was a good dad in spite of how many things that their “mothers” told them about him. He was their protector.

His heartache came from the lack of a “Father-Son” relationship with his own dad. He and I knew the pain of having a father, but even when they were home, they were not there. I think that children of divorce know a terrible pain, but it is no less of a pain than having a father in the household, being able to see them in front of your eyes and realize that they are not present for you.

It is all pain. In the next part, I will write more of my husbands hunger for his father and mother and his desire to tell them how much he loved them while all of them were still in “The Living Years”.

School Days Part I

Growing up in the ’50’s was all about doing it “right”.  It was re enforced by watching Roy Rodgers and Dale Evans.  We identified right and wrong in the black and white of the TV Western and the good guy always won in the end. For some, it was a good time to grow up in this world.

 Of course, I don’t remember my mother wearing high heels and doing housework like June Cleaver, but I do remember some of the magazine articles that were printed for instructions in how to have a “Happy Home”.

Women were encouraged to change into nicer clothes just before their husbands arrived home from work. (That didn’t work in my home because we never knew when my dad would be home. He was always gone before I woke up and I was in bed many times when he came home)

They were instructed to cook good meals including making the table setting appealing. There were many magazines that instructed how to “entertain” in the home. The fifties were the hay days of Emily Post and proper etiquette. The late ’60’s were the years of Lady Bird Johnson’s “Great Society”.

For the most part, my husband’s family was like everyone else. A father, a stay at home mother, well behaved children, a house, a car and a lawn to mow. All was perfection and everyone expected the pastor to have the highest reflection of a good home. Everything looked perfect to the outside world.

Growing up in a pastor’s home brought many pressures that were unique. My husband learned at an early age to not get attached to the house that he called home or to the people in the congregations. The church provided the roof over his head and it was tied to a  “vote” of the congregation that was taken every so often. If the congregation voted yes, they could stay, if not, they would have to leave and find another “home” and leave all that he had known behind.

At an very early age, my husband learned to set in a church pew by himself or with his younger brother while his mother played piano and his father was in the pulpit. He also recognized that “look” from his mother that said if he didn’t behave there would be consequences when they got home. These were the days before churches had  nurseries or children’s church.

It wasn’t all that much different for all of us who were born into “church” families. We all had to learn to “sit still and be quiet”. We all learned that there were  high expectations for us. In the light of today’s lack of discipline in young children, I think we learned things that prepared us for when we entered school. The teacher didn’t have to spend weeks to get us to listen or follow instructions, we already knew how to sit for endless hours because of sitting quietly in church. It wasn’t all bad, in fact, I think it was a good thing. We learned to respect a place of worship and we also didn’t fight against authority as much as some.

For my husband, it was in these early preschool years that he welcomed a brother. He was about 4 1/2 when he became a “Big Brother” and he soon took his position as his brother’s protector very seriously. He was no longer alone in this world.

The difficulties for my husband’s journey through his school years began with the incident with the Kindergarten teacher and proceeded after a particular incident that took place between my husband and the neighborhood bully.

Around the age of 8 years old, the neighborhood bully enjoyed backing my husband up and he would walk backwards all the way home. I am sure that he believed that he shouldn’t fight with this kid because he was a preacher’s son. But, after so many times of turning away from the fight, a different lesson was learned.

On this day, my husband’s mother watched as this kid backed my husband up to the steps on the house. Neither he or this bully knew that his mother was watching as this scene unfolded. As my husband was about to walk up the porch steps, his mother told him that he didn’t need to back up anymore. She told my husband to let this bully have it.

Whether she understood what she did by giving my husband permission to fight with this kid or not, we will never know, but it was a permission that my husband took seriously. And, yes, he whipped up on the neighborhood bully. That kid never bothered my husband or his brother again. But, this incident set the stage for the trouble my husband had in his grade school years.

Growing up in the ’50’s wasn’t easy for a preacher’s kid. Every kid seemed to test the child of a pastor by trying to get them to do something “wrong” or “testing” them so that they could go home and tell their parents what this preacher kid, who was held up to them as an example, wasn’t all that “good”. Recess time was not pleasant for my husband. He was “called out” and he never failed to answer that call.

My husband refused to be bullied by any one in his neighborhood or on the playgroud.  Of course, the school called his parents and they would “talk” about his fighting problem. But being bullied by anyone was not acceptible to my husband especially after his mother instructed him to settle things with the neighborhood bully.

Unfortuantely, the incidents of fighting only esculated and as the years passed, and my husband’s brother began school. My husband became his brother’s playground protector particularly after a terrible playground accident.

My husband’s brother was playing on the “see/saw” when a kid pulled him off and the fall fractured one of the vertebre in his neck. Of course, my husband believed that he should teach this kid a lesson about pulling his brother off of anything. He fought the kid who was picking on his little brother.

It seemed that once this reputation for fighting was established, every kid big or small wanted a “shot” at him.

In those days, corporal punishment was meeted out for sassing the teacher, chewing gum after warnings and fighting on the playground. After it was all said and done, school was a microcosium that seemed to foretell my husband’s future. He would not be bullied, he would not be “paddled”, and he would not bow to school authority.

Due to my husband’s fighting, the grade school years resulted in three different schools within the same small town and the last one was the worst. It was a “Christian School” with a dress code and more church. More sitting quietly for long periods of time. It was enough to drive any kid to distraction.

Moving from house to house and school to school insured that my husband had little if any security and it also insured his inability to make attachments to people and places. My husband’s young heart was wounded and confused at a very young age.

When my husband told me about his early school years, I wondered how many times we give our kids “implied permission” to do things that we scold or reprimand them for later. It seemed that my husband lived with a lifetime of mixed messages.

I believe these early school days impacted my husband by hardening his heart. He was going to be noticed, if not by his academic achievement then by his ability to hold his own in a fight. School was a hard place for this son of a preacher man and there were changes on the horizon.

There was to be another house, another school and other bullies with which to deal and he would be enduring all of these changes as a pre teen in a big city….

Thou, Oh Lord, Are A Shield For Me

So far, things have been going in the same direction as was started on the day my husband died. It seems that it is not “when it rains, it pours” kind of thing. It feels like a 100 year flood type of scenario.

As I wrote in another post, my lawn tractor blew a head or something. I must buy a manual because my son, who was a helicopter mechanic in the Marines is at a loss as to what this engine is missing. He said that something wasn’t put back together correctly, so he needs a manual to try and find what was done when the old man that we bought the tractor from rebuilt the engine…no one knows and should we ask the old man, he may not remember…I don’t have a clue what the parts will cost after we find what is missing…it is a worry. In the mean time, the grass grows higher and higher…

This morning, I went to church. I didn’t feel like talking to many folks (most are family) so I purposefully went late and I was one of the first to leave when the dismissal was given.

When I got into my car, it refused to start. Now, I know that this car has had it self almost rebuilt one piece at a time. The last thing that was changed out was the starter. All it would do is click…that is the sound that a celinoid makes when it is refusing or unable to engage.

 Because it didn’t “zing”, I knew that the Bendix in the starter wasn’t the problem…it was acting like it was the celinoid wasn’t able to unengaged or  it was stuck on the flywheel. It didn’t matter.  It is the starter.

As I sat there turning the ignition key and listening to the useless clicks, I remembered how difficult it was for my husband to put this starter on in April. My husband was trying to prevent what was occuring at this very moment. The tears started  to well up and I told them to “dry it up” because people’s pity is more than I can bear right now.

So as in all things refurbished, something has decided not to perform. One of my many cousins walked over and asked what was wrong. I asked him which part of the car did he suggest that I kick first…he smiled and said, “pick one”. No help.

I knew that when the celinoid gets stuck, you can tap/hit it and sometimes that will make it unstick, so one of the congregationers went to his truck and got a balpine hammer. Both my cousin and this kind man were trying to find a way to get to the hammer on the starter, but that wasn’t easy due to the location of the starter in the engine compartment.  Getting a good swing and hit wasn’t going to be easy… 

Almost everyone that was in the parking lot had left except us. I was almost resigned that someone was going to have to take me home when I said, ” Hit it again, guys.” That time, the starter engaged the engine roared to life. I was so relieved. I made a mental note to myself. “Don’t leave home without a hammer and jumper cables.”

I don’t know how long this thing is going to act up, but I can’t stop driving this car. The other vehicle is a diesel Ford F-250 pickup truck. It has the wrong gears in it for fuel mileage and I can’t afford $4.73/gallon. That is the price for diesel fuel today. Earlier in the week, it was over $5.00/gallon….without income, these vehicles are going to leave me worse off than I am already…buying anything newer is out of the question. Cancer has destroyed any ability for me to have credit. Besides, I don’t need a payment of any sort at this moment.

As I was mulling all of this worry, stress and concern in my mind, a song came into my head. I didn’t recognize it at first, but the melody became so strong, I started to hum it…then I stopped and thought to myself, “What is that song????”.

When the I got to the chorus of the song, I began singing the words..It was a song from the Brooklynn Tabernacle Choir CD that my husband and I listened to a lot…the words are something like this….it is based on Psalms 3:3…

“Many are they increased who trouble me.  Many are they who rise up against me.

Many are saying of me, “There is not help for you in God”

But, Thou, oh Lord are a Shield for me, my glory and the Lifter of my head.

I cry unto the Lord with my voice and He heard me out of His Holy Hill.

I laid me down and slept; I awaked for the Lord sustained me…

 But, Thou, oh Lord, are a Shield for me, the glory and the Lifter of my head…..”

The melody of the song is thrilling and somehow, the words have infiltrated that emptiness that seemed to  attach itself to my every waking moments. I don’t have a clue as to how all of these troubles that are increased against me will be resolved.  I don’t know how I will overcome this terrible hole that is in my soul. The “wheres”  and the “whys” shall remain unanswered. But, at this moment, I know that I am being sustained by my Heavenly Father who hears my heart’s cry.

There is a stirring inside of my being that tells me not to worry about the loss of security that my husband’s passing  placed in my heart. I only need to remember that it is ” The Lord God Almighty that is my Shield, my Glory, and the Lifter of my head…

The part that has invaded my soul is that God is my Shield, The Lifter of my head so that I will not be ashamed or pitied. He has taken my husband’s stead and has become my Protector.

Since the Soc Security money was taken from me, I fear the cost of everything….I don’t know how  all of these “troubles” with the mower, the car or with anything else that decides to become an unwanted surprise will resolve,  but, at this moment, I am realizing the protection that far outreaches that of any husband.

God knew He would be receiving my husband so He has made His Provision for me. My God has become my Protector/Shield. I must learn to relax a little and trust that My God will be there to provide what I need when I need it.

 To relinquish control to God is not an easy thing for someone like me. I truly like being the “Project Manager” and controlling production/time tables, but right now, I am totally out of my comfort zone which translates to being “out of control”.

I have a choice. I either trust in my faith and allow the same faith that got my husband from this world into the next to do what is best for me, or I can stress over everything and begin to unwind as a jeweler watches the spring unwind in an old pocket watch.

I choose the first option. I know the Hand of God when I see it and it has moved on my behalf in the past. I must remember the mighty things that He has already done and I must do all that I know to do. Bu,t when the troubles increase and they are more than I can manage, I must let my God be my Shield/Protector, my Glory and the Lifter of my head.

Shadows of Unkept Promises-My Crisis of Faith

                                                          For many years, I could not speak of my cousin, Jeff. After his funeral, the bond between us all remained, but we were silent. In fact, until last week, I never spoke about Jeff. 

Thirty minutes before the study started, I found myself racing to my cousin’s house. The first words out of my mouth was, “Why????” The painful words were out of my mouth with a pain that had festered without a voice for over 30 years…….. It was a crisis of faith for me. 

In my cousin’s living room, it was good to finally talk about Jeff, about our pain, about the feelings of  betrayal. We all suffered in silence. We all spent years coming to terms with the same questions that filled our hearts, souls and minds. 

For me, there was never a doubt concerning God’s existence, my doubts were with the perplexities of God’s character. I came to a bare and honest truth. I felt that I believed and knew my God so well that I could personally influence Him. Jeff’s death became a quantifier of God’s love for me. I felt that God did not love me like I loved Him.

I suppose I was arrogant to believe that God possessed the kind of love for me that He should do as I asked and bid Him do. I felt that I possessed God. He was mine…. and I was His…God should love me to the point of giving me whatever I asked. I realize now that, in my faith, I was more like a two year old child that believed that they were entitled to everything in the toy department.

In light of the past 6 years’ experiences and disappointments that came to my husband and I, my belief in a God that cared for me had dark shades of doubt. Somehow, I had come to believe that I did not serve a loving God. Rather, I served a harsh task master. One who did not hear my desperate prayers any longer. Somewhere along this road called life, I lost those wonderful experiences of prayer and fellowship that occurred between my God and me. Somehow, they were distant memories.

Until the night of the Bible Study, I wasn’t conscience that Jeff’s loss had become such a crisis of faith for me. My faith became an enormous issue after Cancer came into our lives.  Especially when everyone gathered at our home for prayer with the sole purpose of believing that my husband was to be healed from a cancer that had no cure. God was and is the only cure. He remains the only hope for my husband’s life on this earth.

Deep in my subconsciousness, it was my cousin, Jeff, that filled my heart instead of faith. It was the memory of praying for Jeff’s miracle and the reality of those prayers failing to produce Jeff’s healing that loomed over my heart as a huge, dark, impermeable shadow that blocked any faith from entering. How could I pray for my husband’s healing when I had not reconciled my faith or lack of it in God’s healing of Jeff?  If I loved Jeff like a brother and God chose not to heal him, why should God grant my most earnest and heartfelt petition for my husband’s healing?

These two questions, “Do you trust God? and Do you trust God with everything?” coupled with the deaths of the innocent combined to reveal my deep crisis of faith.This rainy night had uncovered one of the deepest and darkest stumbling blocks in my ability to believe in the healing of the love of my life. 

How well hidden was this disbelief and doubt!!  Now that it was out, what would I choose? The question posed another question. Would I choose to allow God to heal this jagged wound in my bleeding heart? In the next moment, I saw my heart was similar to the woman with the issue of blood. The difference was that she knew that she had a problem and she believed if she but touched the hem of Jesus’ garment, she would be healed. For me, the issue was not one of bleeding, but of faith. Unlike her, I was unaware that my heart was bleeding  faith for 30 years. Would I reach out and touch God for the healing of my hurting heart?

When it came time for me to answer the Bible Study question, I had no answer. Somewhere, in the deepest recesses of my soul, I knew that I had to make a choice. This night, I had to decide whether I was going to truly trust God with everything or trust Him with nothing. 

It was in the moment of hearing about the deaths of these promises, these children, that I realized I did not trust God because of a miracle of healing, nor did I trust God to prevent the deaths of young children or teenagers.

I trusted God because I chose to believe that “God was too kind to be so cruel” (See earlier post). I chose to trust God because I believed. I believed in a God that was bigger than any man’s (pastor’s) depiction or any man’s (biblical teacher’s)explanation. God was greater than my human logic or reasoning. He is a God who creates universes, galaxies and suns and moons.

I realized that I do trust this great Creator. Somehow, in the midst of all of this doubt and disappointment, I know that this great and mighty God, loves me. I find His Love in the small kindness of others and the provisions of a warm home, electricity and food in the cabinet (these are not small accomplishments). But most of all, I knows that this All Knowing God, the God of Everlasting Love, knows my name.

In His Mystery, He and He alone knows the answer to the question of “Why”.  It is not for me to know. Like a parent who does not explain the intricacies of reproduction the first time a child asks,  my God does not explain the details of everything to me…nor is He obligated to do so.

The closest analogy that brings this wonder into a form of comprehension for me is one of  electricity. I do not understand electricity. But, there is one thing I do know. Should you have something that requires 220 volts and you put in 440 volts through it, it will shatter and explode.  There is too much power for the apparatus to absorb.

So it is with me. I am 220 and God is 440. I will only understand a small portion of Who and What He is. In the midst of making mountains and men, God saw me and He knows my name….That is Who I trust.

In the cold darkness of the loss, He knows the answers to the crushed and bleeding hearts of suffering parents. I choose to believe that my God still heals. But, I do not have a formula to move Him to do as I wish. He is Sovereign.

I choose to serve Him because of Who He is and He does not serves me. I do not have understanding as to why these children, these wonderful promises were made and yet, their lives could not stay, these promises were not kept. 

These are mysteries that only God knows. In the midst of the pain of  loss, it must be enough that God knows our names…that the God of the Universe holds all the hearts of the Unkept Promises

Shadows of Unkept Promises

Tonight is a dark, cold and rainy March night. It is part of the coming of Spring. When the temperatures fluctuate, it is a sure sign that spring is coming. But, not tonight….

Tonight, is filled with grief and sorrow. Excrutiating pain is in the hearts of parents who have lost a promise. It could not be kept. They lost their child   .

One child was 16 years old. He just received his driving license last week. At the end of the week, he was gone. Gone in an accident where he lost control and hit a tree. If it were not for the horrible head injury, he looked as if he was ready to go on to school and live another day.

On the back of that brand new license, he signed that he wanted to be an organ donor. His family was aware of his wish to give life should he be denied. And, this 16 year old boy gave the gift of life. He lives on in the heart, the liver, the lungs, the kidneys, the eyes of others. He, a sacrificial lamb, gave life.

The other child was 16 months old. He was a new promise. He was still new from the hand of God. It is still unknown why this tiny life left this world. He left in the middle of the night as a wisp of vapor. A promise not kept.

All of the parents, grandparents, friends and neighbors feel this horrible loss. Once there was life; now there is unspeakable emptiness. Their hollow lives are trying to live without these wonderful promises. The grief and sorrow has effected our small town.

One of the women in our Bible Study was a nurse on duty when the teenager was brought in. Others in the group were friends, neighbors, cousins and acquaintances to both of the promises; all hearts are touched by this devastating sorrow.

The loss of a child is in a category of grief all its own. I don’t think there is anything more painful than the loss of the child. Mystery O Riley’s blog tells of a mother’s love as it mourns a mystery and a lost child. It is beyond human capacity to understand this terrible devastation. There is no way to comprehend a loss such as this and its senseless,  destructive  pain. The loss of years, loss of lifetimes gone too soon….

In light of this grief, our Bible study subject was on trusting God. Do you trust God??? Do you trust God with everything? In the deepest part of humanity, we would find an area of life where we just cannot trust God. Such is the human condition. We would much rather trust what we can do for ourselves. 

It is times like this cold, dark, rainy night that we try to comprehend these losses. It is the night when we have no light that we must make a choice. Do we choose to trust God with all of the disbelief, the unspeakable pain, the deep wounded lament with one word, “Why???”

As it rings in our ears, we are at a crossroads. Do we choose to blame God for not protecting the very life that He sent into our care to raise and watch them grow? Or do we echo Job as he said, “Even through You slay me, Yet will I trust Him”.

It is the proverbial choice that is ever before us. Trust vs Distrust? Belief or Disbelief?

For me, the answer to trusting God came in the form of a young cousin, Jeff.  At 12 years old, he was diagnosed with a brain tumor…As close knit of a family that we are, it might as well have been my younger brother that was diagnosed with cancer.

As cousins, aunts, uncles, parents and grandparents, we bonded together in a manner never experienced before Jeff’s illness. We vowed to pray and believe in God’s healing of the impossible. Some prayed, some encouraged, some searched out every promise that was in the Bible and we all stood in faith believing for a miracle.

Many miraculous things did happened. The doctors said that he would not complete high school. He did. They said that he would not see adulthood. He did. The doctors said that he would not become a father, but he did.

The years passed and the tumor returned. Again, our faith rose to this new occasion to meet this new threat and challenge. We believed that a miracle would happen and Jeff would not leave us, his wife or his daughter…but he did.

For many years, I could not speak of my cousin, Jeff. After his funeral, the bond between us all remained, but we were silent. In fact, until last week as I prepared for this chapter of the Bible study, I never spoke about Jeff. Thirty minutes before the study started, I found myself racing to my cousin’s house. The first words out of my mouth was, “Why Jeff????, Why???” The painful word was out of my mouth with a pain that had festered and was unsaid for over 30 plus years……..                                                 holding-me-when-i-cant-stand.jpg

Tomorrow…Part II

Reflections on the Shadows

On my last posting, I truly thought that my husband was in the hospital without a return home in sight. It was frightening to see him in such pain and to see the questions on the doctors faces. He was a complicated case before this last episode. During this crisis, it was clear that he became more complicated.

The details of this crisis is not unlike others that are facing the end of their journey with cancer. His metastatic cancer mimics late and last stages of ovarian cancer patients. The tumors grow to such a massive size that they crush internal organs. His tumors are sitting, literally, on top of his stomach and small bowel causing obstruction. But, that is not definitive as the cause of this last bout that landed him ICU.

Two days before the hospitalization, he began a new treatment of Xeloda and Avastin. The xeloda is a pill form of 5FU. The cost of this medication alone can land you in ICU with a coronary. It costs $2000/21days or a month supply. The Avastin is a drug that is to cut blood supply to the tumors. That is great, but it cuts blood supply to the bowel, skin etc.

The prevailing consensus is that there was a partial bowel blockage from the tumor and the Avastin/xeloda combination paralyzed the bowel completely. He had an Ilius. An ilius is when the bowel stops functioning and air and gastric fluids are retained in the upper GI. This causes distension and pain. That was the main focus. Two days later, he had both lobes of his lungs to collapse and then pneumonia set in. Oh, I forgot the pulmonary embolis. So to review he had…..

  1. partial bowel blockage
  2. ilius
  3. distention
  4. collapsed lower lobes, bilateral
  5. pneumonia
  6. pulmonary embolis

That should cover it unless there is something that they forgot to mention. That is quite a lot even for  a cancer patient to recover in about six days. In fact, it is quite remarkable that he recovered at all.

For the first 24/48 hours, I didn’t know if he was going to recover and neither did he. He became very angry at himself for trying this new treatment. He mentioned the day before he started the treatment that he had doubts as to whether he should to this treatment at all.  His anger was at himself, but he was taking it out on others around him, me included. After the second day out of ICU, I had enough and told him that it was alright to be angry at himself, but it wasn’t acceptable to be a crank with the staff or me. And it is alright to be upset and scared and frustrated and all of the things that come with feeling ill, but he needed to stop himself from being hard on the staff.

I reminded him that the people that work in the hospital start their career in healthcare because they have a very deep loving and caring heart toward the human race. Without this type of personality in mankind, it would be impossible for anyone to survive illness. Without love and compassion, there would be more of an attitude that lends itself toward, “Let them die and let God sort it out.” Cold, it would be very cold.

These people who are in healthcare have a very difficult job on a good day. They not only contend with sick and often irritable people, but they have to deal with insurance companies, hospital protocols, rules and regulations. These kind of concerns rob caregivers of the emotional fortitude that is necessary in giving good care. It is hard to see to the physical needs of sick people and then have to fight the “establishment” to insure that the patients receive the care they need and deserve. Many times, they must become the advocate for the patient….this is a difficult career.

I suppose I was speaking from my nursing experiences.  I cared for some lovely people who were still kind and caring when they were deathly ill. They were selfless and thoughtful. But then, there were the other patients. These patients seemed to think that they were in a hotel and the nursing staff was room service.

On extremely bad days, the patients would be demanding, the doctors were demanding, the hospital administration was demanding and by the end of your shift, you felt like there wasn’t anything left for you to give. So, your family was robbed of the best of you when you returned home. Usually, those were the days that the kids were demanding and you took it out on your spouse because they wanted something too.

It is a hard job and unfortunately, fewer people are choosing healthcare. The shortages in staff add to the load of those who are doing the job. You are doing not only your responsibilities, but many times, you are doing the job of another person as well. So many in the healthcare world are burning out. Especially, when the general public forget the basic courtesies. A “please” and “thank you” goes a long way on those difficult days.

I know that my husband can become very demanding especially when he is fearful or when the professionals forget to explain procedures. He isn’t the kind of person that you can give an explanation by glossing over the topic and then proceed. He will resist you. That is why I try to be with him. It isn’t just for his benefit, but it is for those who care for him as well. If the ER doctor would have waited until I returned, my husband would have not become so hostile and pulled out the tubes that were just placed. Maybe they thought that they explained things adequately. Most likely, it was a the result of many factors. My husband wasn’t getting enough oxygen to his brain. The last time that happened, he hallucinated and he thought that his nurse, a male nurse, was a drug dealer and that this man was trying to hurt him. It was another time when my husband’s nurse was very glad to see me come through the door.

Trust is also a factor that is overlooked sometimes. Many people have a huge amount of hurt in their lives and trusting other people isn’t something that they can do. Gone are the days when people respected anyone in authority over them. In my parent’s generation, the doctor was never questioned or challenged. If the doctor said it, then it was law and gospel. Today, no one trusts everyone fully. It is also true that no one should ever turn their health decisions over to a doctor. Blind trust should not be given either. There needs to be a balance. If you do not have a basic trust in your doctor, find another one. Every one needs to educate themselves about their illnesses and their treatment. After all, it is YOUR life. Be “picky” about who you turn your life over to…after all, these are just educated people and not “god”. They are due respect for their calling, but everyone needs respect. Life goes a long way down a easy road when there is respect between patient and doctor.

Trust is hard for my husband. He would like to be able to trust more, but he has been so hurt by people and life in general that he doesn’t trust easy. I think that the ER doctor was unknown to him and he did not understand nor did he trust. It was just a bad situation for everyone. But, it is over and we are on stable ground for now, this day, this hour….that is all we can deal with…. the now.