Lela’s Story…Prologue and Part I

As we watch Thunderheart for the millionth time, I watch my husband’s face and I marvel at the sparkle in his eyes. It is as if he is reconnecting to a distant past that was lost, but it is very much a part of him.

For those who are unfamiliar with the movie, it is loosely based on the events that took place at Wounded Knee, South Dakota in the 1970’s.  The news reports of the times were of a militant band of Native American Indians who hijacked a small town to press for their demands and rights. They were attempting to make the government accountable for the breach of treaties made with the Indian Nations over 100 plus years. Each and every treaty had been neglected, breached or totally disregarded and people were living in deplorable conditions.

Why would this movie reach so deeply inside this man? His roots are in these past events. He is Native American and his soul hungers for understanding of his lost traditions.

My husband’s history begins with his maternal grandmother, Lela. She was the most influential person in his life and rightfully so. To know the small amount that we do about this remarkable woman is astounding. Somewhere, deep within my husband’s chest beats a heart in time with his grandmother’s. His heart thrills to the drums of native dance and his heart longs for a time when the land was in harmony and a man’s soul was free…


The facts of her birth and the maiden name of her mother are lost to us. We know that Lela was born in west central Illinois and her childhood was spent in Springfield. The pictures of Lela’s mother (Pauline) show that there was little doubt that she was full blooded Indian. Her hair is long and in braids. Her face is one like those we see of the plains Indians that were taken as photographers roam the west.

We are not certain of what Nation Lela’s mother derives. Some of the family say Cherokee, some lean toward Souix. No one knows for sure.

We can only imagine the stigma and the prejudice in the late 1890’s that followed this loving man who took a “Squaw” as a bride….  We do know that taking an Indian for a wife was not done in polite society. Great prejudice agaisnt anyone whose skin was not the same was always present. Those “savages” and “half breeds” definately were not welcomed.

Lela was the oldest of four. She was tall and strong with a beauty that was uncommon. She had two brothers and a younger sister at the time of the tragedy.

The only details we have of this life altering event was that it happened when Lela was in first grade. She came home from school to learn that her father had been struck and killed by a streetcar. I can only imagine what turmoil beset this family. Its sole source of income and support had just died. How would they survive?

I imagine that Lela’s mother, Polly (Pauline) did what she learned on the reservation and that was to turn to the church.  The Catholic church had gone to the Indians from the time of the French traders and trappers who found their way to the Midwest. The priests followed along with the trappers and the priest’s mission was to save the savages from themselves. Rarely did the priest desire to learn anything of their ways or beliefs. After all, they were hopeless savages, they were Indians.

The priests were doing what was done since the time of Columbus. Kings and wealthy men wanted the riches and the wealth of a region. To soothe their greedy consciences, they sent the priests to claim the new territory in the name of God and avarice began the plunder. It was only natural that Polly turned to the  church for help. It was a terrible time for her and the children and they were in dire need. 

The church was interested in Polly and her plight; they were interested in the children. For years, the church has secured its future through the children. “Train a child in the way they should go, and when they are old, they will not turn from it.” The children were the future and they were the only value that interested the church in Polly.

So, the days of Catechism began for Lela, Alfred, Theodor and Ruth. All were enrolled in school and each began to learn their lessons. Lela was especially bright. She not only learned her lessons, but she was truly desirous to know about this God.

As time went on, it was clear that the church could not supply enough of the needs of a family of this size. In third grade, Lela was removed from school. The caseworker in charge of her family had a side business. She told Polly that she would pay for Lela to clean houses for her.

Money was money and this struggling family needed every penny; so it was that Lela left her studies. But, she was not allowed to miss Catechism. She had to be able to take her First Communion or all of the help provided by the church would be gone. They had to survive and the church was the core of their survival.

Everyday but Sunday, Lela was sent out to clean the large beautiful houses of the wealthy in Springfield. Many days she worked hungry. She endured harsh words and a hand across her face if she said anything but  “Yes madam” to the woman who was growing wealthy on the sweat of a child’s labor. I am sure that this woman reasoned that it was a charity that she was providing to Lela. All the same, this child worked and she was hungry. That was Lela’s childhood…

How many days and how many times Lela prayed for her father to return and restore the safety and security that she had known. Her heart was broken by adult hands that held her life. There was no love, no comfort and the money that was promised was so little. It did little to relieve the miseries that became a staple of Lela’s days…

Lela showed herself a gifted child and she destinguished herself by the intensity that she wanted to know about a great and powerful God. Deep within her heart of hearts, she was wanting this “God” to come and punish those who were so cruel to her and to her family…She wanted justice.

She quickly completed her Catechism and the day of her First Communion approached. Someone bought Lela a beautiful white dress for her to wear on the day on this special day. She was going to be baptised first then confirmed. Once was done, the church would provide more help to the family…Everything depended on Lela and this event….

In her heart, she hated the church. She hated the “whites” and she especially hated the caseworker who used her like a slave. Nobody could discover just how much she hated because her hate would prevent her from taking the sacrement. Her hatred would ruin the only hope of the family…

She practiced and practiced what she was to say. Polly repeated the importance of this event and Lela was terrified that she would do or say something wrong. Every night, she continued to pray for her father to come and rescue her from this terrible life…

The day finally came. Everyone was in the church. The family was sitting on the same pew and Lela was so very nervous. Everything seemed to drone on and on. Finally, it was the appointed place in the mass for her First Communion and she was called to the alter to stand in before God and the priest…

As the priest was reciting his litergy in Latin, Lela felt an overwhelming need to turn around. She turned to look at her mother. She could feel her mother’s eyes burning a hole right through her; threatening her with a gaze that said that she had better not do anything to alter this moment.

As she turned back around to face the priest, she still felt as if someone was looking at her. She turned around again and looked down the aisle. Framed in the doorway of the church was her father.

Lela could see through him, but it didn’t matter, she knew it was her father. As she turned to face him directly, she heard her father say, “Run, Lela run….Run as hard as you can…Get out of here!!!”

In the next second, she turned on her heels and ran out of that church as fast and as hard as she could………………

Rediscovering Shades Of Hope

Nothing has changed in our lives. Circumstances are the same. Financial, Medical, all the same, in fact, they may be a little worse. Yet, there is something different, something less oppressive than the days when I first began this blog.

February days are not easy because of the cold and the endlessness of winter and they also hold hard and cold memories of a lost friend and mentor.

She was 16 years my senior and I found her the way most discovered this wonderfully wise sage of a woman. Many found their way into her country kitchen. There, they would pour out their broken lives and wounded hearts to hear her speak words of hope and encouragement with an instruction to put the words into action…

Like so many before me, I too turned to her and poured out my broken heart and expressed the need to discover the mysteries to a happy marriage. She seemed to look into my very depths and help me see the many misformed thoughts and ideas that had driven my misconceptions and my pain. Not always were there words of encouragement and many times there would be words that were like hot brands to cauterize the bleeding of a heart so wounded. No matter how much the words would hurt, I never doubted their Truth. In my very depths, I knew that she was helping me to develop into a mature being.

Many before me would find their way back to her country kitchen with the same sad stories of muddled lives with the repeated mistakes that brought them to her from the beginning. She, patiently would repeat the words of wisdom and encourage them to add action to the words so that their lives would walk hand in hand in a state of agreement. They would leave her home and some would be thoughtless or careless in their treatment of such a treasure….

My time spent in her kitchen became a two way street. I didn’t feel it right to continually receive without giving something in return. If I had money, I would have given it, most likely, she would not have taken it. I willingly offered my time and efforts toward her projects or whatever I thought that I could do in repayment of the hours that I occupied. In time, the mentorship took on the characteristics of friendship as well. This two way street became one of the strongest friendships that I have ever known in my life…

My mentor and I moved pasted my crippled past and present and began discussing many ideologies and theories. Many took the form of philosophical and scientific debates. Most time our discussions were rooted in how scripture would lend itself in support or opposition to things like the “string theory” or other speculations regarding just what Heaven was made from….who would have thought that these mental gymnastics were taking place in the rural corn fields of Indiana…there was much more than corn in that kitchen….

It was the second week in February 1986 that she and I had our last discussion. It was a cold night and we had met at the local school to exchange projects on which we were working. She began to tell me that she had taught me all that she could teach me. She admitted that she was growing so very weary. She was weary of the endless procession of people who continued to return over and over again trapped in the same emotional ruts. She finally would tell them that she could explain and explain, but she was not about to carry them out of the places they continued to make for themselves.  There was a tone in her voice that I never heard before. It was an element of distance that was foretelling a change in all of our lives. 

In the next ten days, my friend and mentor was gone from this world. In a blink of an eye, she was in eternity. She was on her way to her job when she approached the railroad tracks that everyone crossed to get to and from their homes. The engineer said that she never put on her brakes and she drove onto the tracks. He sounded his horn as he saw her approaching but it was if she was somewhere else….she never looked in his direction. To his horror, the train couldn’t stop she and the car were dragged 20 feet down the tracks.

She was gone….My friend and mentor who was weary and worn by this world was discovering how our theories regarding Heaven and all things Eternal stood up to our country kitchen theories….

It wasn’t until late in the day before I learned of the accident. Knowing the devastation of this news, the family sent another good friend to tell me the news…I remember thinking that it was odd that this friend had driven the miles to my house in the middle of the week. After she told me of my mentor’s death, I said nothing and walked out of the door. I began walking. I walked for an unmeasurable amount of time. I don’t remember how I got back to my house.  In that  cold February rain, I walked until I found some sort of solace in that cold dark rainy night. In those dark, damp, dismal shadows, I understood that my mentor was preparing for her departure and I was the living repository of her years of discovery and wisdom…

The next few days were blurred by the surreal turn that this loss meant to my life. The  days brought her husband to me with questions regarding unusual discoveries while going through her things. He had questions.  He could not understand or explain the thoughts that were written or the purpose of items that were found in secret hiding places. All of this baffled his mind. He asked if I knew about them and what did they mean….Unfortunately, I did know and I understood the reasons for the oddities that he discovered. I explained those things that would help his heart heal. Everything else, will never be mentioned or uttered by me. To say anything now would be of no value and could cause him pain. These mysteries of the woman that he had lived with from the time of their teenage years were not meant for his understanding. I knew that she meant for his heart to not know, at least not now.

The children were next. I was a two years older than their oldest child. It was a strange  situation that I found myself. I gave them as much comfort as I could and I explained and answered their questions. I was the gatekeeper of my mentor’s secret thoughts as well as her principles. The mantel was passed and I was entrusted with her principles and her dearly held Truths. Above all, she was still a mother, a wife and a woman as well as my friend and mentor…

It was one of her principles that caused me to think about this change in my heart of late…She taught me that the human spirit can endure many hurtful and horrible things in the time that passes while we are on this earth. The human spirit is resilient and capable of overcoming great adversities, but there is one thing that the human spirit cannot live without….Hope…

I think in the early days of this blog, my grip on Hope was slipping. I was feeling the total devastation that cancer was bringing against the walls of my heart and I was slowly loosing the battle….My days felt dark and the shadows were so very deep.

I cannot look to a specific event or a new idea that impacted my heart to where the shadows seem shades lighter. As I ponder what could this change in me be, I recalled a memory of a friend and in that memory, I rediscovered her wisdom. I believe that I have Hope for Hope’s sake. Nothing more, nothing less. Hope of spirit is a powerful thing. Hope in God even more so……..Hope in what, you may ask?….Hope in Hope….

For now, I believe that I have rediscovered Hope and Hope has rediscovered me… 

Shadows of Uncertainty

Somehow, in the midst of these winter days, we have settled into a “normalcy” in the face of this uncertainty. We have a “no structure” kind of structure that is determined by the pain level when my husband awakes.

Mornings are hard…they are difficult for me anyway. I feel the years of neglect and abuse that I put this poor body through. My knees ache because of the years where I loved to run like the wind and because, at 10, I decided to jump from the top of the church steps. (About 8-10 feet) I didn’t make it and I came down with my feet in between the steps…I was on crutches for a few weeks and I was told I would be reminded of this foolishness as I aged. They were right….The knees and feet suffer in the morning light….

My husband was always a morning person. He always like to get the work done so that he could come home early and we had most of the day together. That was his work pattern. Now, he wakes and moving is always assessed by the number of the pain. When the morning pain is around a 3-4, I know that it is only going to rise as he moves about and that is my first morning duty. I retrieve his pain medication and urge him to give it time to begin relieving the morning aches…

My next duty is to get the coffee going and begin consumption as if prescribed as medication. After 3-4 cups, I can begin to face the day and I have to go to the things that I wrote down the night before. When I sleep, all manner of important things are gone when the sun rises and I must remind myself what was paramount at the end of the day and start from there.

Most of our days are regulated by my husband’s treatment. Is there an appointment, a treatment, a blood drawl? If not, then we take the day as it comes…Medicines, meals, laundry, whatever needs doing…

It took a while before I didn’t feel useless for not needing to venture out. Now, I relish not being compelled to go and do…my total attention is to meet my husbands needs. He is the one who has trouble with having no where to be or nothing important to do. His was a life of meeting delivery times and schedules. He has trouble being housebound by the cold or weather. He still suffers from the side effect from one of the chemo drugs…It killed the nerves in his hands and it will never be reparied. What maddness there is in chemo and the idealogy that says we kill the person and make it a race to see which dies first the cancer or its host….shades of Dr Mengela.

Until the winter set in, his days would be spent outside “puttering”. He would find something that needed doing and, by the first hour, I would be outside “puttering” as well. I always was one to let the house wait. I never enjoyed the chores when there were wonderful and exciting things outside to capture my imagination.

The best part has been the walks to the woods. They are paths of memories for me. These are the lands where I would come for solace and reflection as a child. My childhood was a solitary one. I learned to love the company of all things in nature. I still find the best of days are those with a warm wind and a long walk to observe the wonder of it all….

In the afternoon’s my husband rests. He will relax in the recliner and he will recharge the needed energy that has been spent doing something or nothing. The cancer has a way of commandeering all systems and exploiting them for its purposes…

I will do quiet things so as not disturb his rest. It is as vital as air for his energy to regenerate. I sometimes will watch TV or crochet the latest baby blanket. I usually write or read. Anything to keep noise from waking him.

Through out the day, we may have a neighbor to stop in or the pastor comes to call. These are always welcome distractions and they seem to perk his spirits up…

The best days are when my son brings the grandson to visit. At three years old, there are monster trucks, Godzilla, dinosaurs  and of course, Jurassic Park video to play. It’s amazing how children energize the atmosphere and leave you in wonder if you ever had that much energy in your life. Smiles, giggles, and the fantasies of the little worlds bring such joy and of course, we can escape to “The Land Before Time” as a distraction for the quiet routine of everyday.

Even in the shadows of uncertainty, there is an unfamiliar “normal” that we have settled into. I can barely remember the days that were full of Corporate decisions and time constraints or deadlines. How all of that changed overnight!

But, now is good. I could live like this for the rest of my life and find contentment. I know that it isn’t possible, but today, I will be content. Even in the shadows of uncertainty, I will be content with the quiet, lack of structure, and I will be content with the snow, ice and cold…….

Tiring Shadows of Winter

Today, I am feeling tired….I am feeling the cold on this snowy February day. I think that I need some Spring….

When I was young, I had a terrible time getting through winter. It seemed to drag on and on. I started trying to grow plants inside…I would save them from the summer flower garden and I thought that the flowers would help me get through this time…but, I wasn’t too successful in getting them through the winter.

I seem to be able to grow most anything outside. This past year was such a disappointment with the drought. Most everything shriveled up under the intense sun and heat….the vegetable garden was a waste land…all of my plans to can vegetables and have to provide for my family and my son’s family was lost to the insufferable heat….

The other day, I couldn’t stand it any longer. I “splurged” and bought a couple of primroses. They are new to me. I never tried to grow those flowers before. I always wanted to try them. My ideal flower garden is and “English Garden” complete with Hollyhocks, ivy vines, Phlox, and Delphinia and Primroses…these flowers have a hard time surviving in this climate. It is too hot for these delicate flowers…and I found out the hard way that Hollyhocks will take over any garden should you not stop them…

It is on these kind of days that I look at the cold, snow covered ground and dream of the time when the earth warms and the early daffodils push themselves toward the sun. I love the delicate colors of the crocus and the particular shade of green of the leaves of the new tulips. I am impatient to see the barn swallows return to the barn and reuse the nests that have been here since I was a girl…I want to hear the croaking of the frogs in the ponds and the chirps of the robins…I want to smell the ground and feel the grass on my feet once again….I am waiting for life to renew itself and for the awakening of things that sleep….

I am looking forward to this spring so that my husband’s prediction of leaving in March will have come and gone. I want to celebrate my birthday without the coupling of sorrow as were done too many times in my life.

Then there is the new grandson’s arrival in April…My husband’s namesake….He is a part of the looking forward and not of the looking back on this cancer and this cold  winter…. In my heart, I know that he is part of life renewing itself.  He will take his place in the circle of life…..

There is much to hope for this spring and each spring brings with it hope. In all things, there is hope for a better tomorrow and, should the tomorrow not hold better things, the flowers will still have their brilliant color, the grass will feel the same on my feet, the robins and the barn swallows will still come…. and life  goes on….how precious is each day of hope….Hope in God, hope in healing, hope in a miracle….

I shall think “Spring” today. I will plan my landscape and dream of my fantasy English Garden and hopefully, I will not ponder these tiring Shadows of Winter…

There Are Darker Shadows Than Ours

My stepdaughter has a blog (http://waterdeep25.wordpress.com) .  She decided to follow in my footsteps by starting her own blog. She, too, finds release in writing and blogging about her journey through her present pains.

Today’s posting is about her grandmother. She titled it “Grandma’s Hands”. Her grandmother’s hands are the hands that nurtured her father, prepared wonderfully tasty meals, made cookies and all sorts of divine sweets and played the piano and organ as if she was born touching the keys. She is the definition of a “Natural Talent”.

In my stepdaughter’s lament, she recalls the living loss of a grandmother who is bound in the darkest of shadows called Alzheimer’s. Grandmother isn’t alone in these shadows, her husband, my stepdaughter’s grandfather, also has dementia…Both are challenged to find their daily lives each and every day.

No matter how lost they are to this world, they have not lost each other. They are in these shadows together. They laugh at each other’s jokes and they have conversations about the location of the last thing that they misplaced. Watching them, at times, is better than watching a sitcom. Then, there are the not so humorous events.

One of my husband’s greatest heartaches is that he is lost to his parents. They continually “forget” that he is ill. I can’t count the times that they tell him how deathly ill that his brother is. His brother has prostate cancer, but it is arrested since his surgery in January 2005. They seem to never quite grasp how close to death’s door that my husband is and this wounds my husband’s heart.

He knows that they are not responsible for this, but that does nothing to stop the longing for his mother’s touch or for the comfort from her voice. He is still that son that doesn’t want to be forgotten and forever lost to them in the shadows.

He calls them knowing that within the time of the phone call, it is forgotten. He finds little comfort in calling, but the sense of duty is still with him. His greatest joys are when they know his voice and that they remember to inquire of his health.  We didn’t tell them about my husband’s last hospital visit because it is gone by the time the next sentence is spoken. Everything gets swallowed by these monstrous shadows of dementia. In all essence, he knows that he is orphaned. He feels this feeling of loss before there is actual physical loss.

This disease is one of the living dead. They still walk and they are still able to talk, but  one of mot precious possessions that is needed the most for our comfort  in our twilight years are our memories. The reality is that the life that they lived is gone, gone in this confusing fog called living. There are some consolations. The memories of their youth are still with them and they are “spot on” when it comes to events that are 50 plus years old.

As my stepdaughter continues with her memories of the loving grandmother, the shadows of the disease grows and steals her love. She will always love this pretty lady that she recognizes as her grandmother. But it is the memory that she loves more. All of these sorrows for such a young woman to bear….and she knows more than most that these shadows will grow to their final stages of darkness.

She works daily with this terrible disease. She knows the stages and the ending. She works in a nursing home and each resident appears as a ghostly shadow that foretells her grandmother’s future.

There are no words for this kind of sunset. This disease is nothing like as it was portrayed in the movie, “The Notebook”. In the movie, the unbearable thought of separation ushers in the couple’s simultaneious death. Only in Hollywood does this ending occurs.

In this “story”, there is no drying of tears and turning off the DVD to continue on with life. Day by day, life is filling  time, waiting for the inevitable, watching and wondering when the end will finally release them from the darkest of Shadows…..the deepest of nightmares.

Even In The Shadows, God Is Too Kind To Be So Cruel

I can’t remember when I heard these words. Maybe it was from something that I read, or a sermon on the TV, no matter, these words impacted me profoundly. Especially in the face of cancer, MS, traumatic brain injury, Downs syndrome, and the miseries of divorce, and child support, it is a work of faith to still believe this statement as true.

But, I do. My world view has changed as I lived this life. It was never a life that was easy because I never chose an easy path. I refused to conform to what others said to do. I suppose that makes me a rebel in someways. For me, it was a statement that I wanted to live.

That desire was one that my mother expressed in her final year of her life. She expressed this to my sister and me. She relayed how our dad was given a survey as to whether he was satisfied with his life. He answered that he had a very good life and he was pleased with how his life turned out. When it came to my mother’s turn, her response was the exact opposite. She said that she didn’t feel that she ever lived her life. She also said that the main reason that dad was satisfied with his life was because of her sacrifices. She felt like she gave so he could get. That was her feeling to her dying day.

This was quite a shock to my dad. He had no idea that Mom felt this way. He assumed that if he was satisfied, she was satisfied. I think that it is a generational thing (WWII era) and it shows how much he didn’t know the person that he had lived with for over 50 years.

Mom directly told my sister and me to not wait for our turn to do the things that we wanted. She said that satisfaction through children’s lives will not be satisfying. Satisfaction through  spouses life will not be satisfying. She stressed that she waited for her turn and after our sister’s birth(She was born with Downs Syndrome) Mom knew that she would never have the her dreams. All of her plans were cancelled with that one life event. An unplanned pregnancy with life changing complications erased what she had patiently waited. She showed to the outside world that she handled this situation very well and to the outside world, she had a good life. To her inner world, she never lived her life and she was embittered by her life’s disappointments. Now her life was over and it was too late for her to realize her dreams. All because she waited her turn and it never came.

After reviewing the choices I made and the risks I took, it would appear that I took my mother’s advice to heart. After living a life some would see as difficult, they would question my choices. And many would really wonder why I could still believe this statement concerning God as being too kind to be cruel.

How could a loving God allow so many difficult and hard situations in my life? It would be a valid argument if your views on life were based on this world values…nice home, nice cars, nice careers..good health…  It would be implied that living rightly is equated with an absence of  “trials and tribulations”. That way of thinking implies God’s blessing keeps you from experiencing any of life’s painful and trying situations. I don’t agree.

It isn’t taught in scripture or in Christ’s example that life will be without hardships or pain.  After reading the book, “The Road Less Traveled”, I was introduced to a principle that is rarely taught in our western civilization. One of the first statements of the book is that “Life is hard”… This is in opposition to our western world view. We are surrounded by the implication that life is for us to spend, rather than life is a gift. It seems that we find things less than satisfying when we “buy into” this idea.

We can become disillusioned should we believe that every one of  our dreams for our life should be fulfilled. How do we handle life when our dreams do not come to fruition? I believe our life isn’t intended to be lived according to our wants and wishes. These ideas will inevitibly set us up for disappointment and it becomes the gateway for bitterness to attached itself to our lives.

We are not born with guarantees and life does have hardships and problems….The reality is that life does bring more trials sometimes than anything. Then we must added the difficuties that come from own choices. Most major events come into our lives for no other reason than because it is living. There is no one or nothing to blame for them coming to us. It is a part of life.

Cancer is not God’s plan for our life, yet God will use this as a tool for the person who suffers its pain and for those who suffer with them. At times, it feels that we have been chosen to walk this path for reasons that I cannot understand, yet I still believe that God is too kind to be so cruel. I refuse to lay blame at God’s feet. I do not believe that He causes this, however, because it is a part of our life, I believe that He walks this path with us. He crys when with us. He knows what it is to have sorrow and physical pain. He also asked, “My God, My God, Why have you forsaken me?” I know that He hears us when we cry out with questions and I know that He gives peace when there is nothing to be peacable over.  Cancer is a part of life because it is a part of death….Death is a part of living. And death comes to everyone…it is the circle of life.

When I stop blaming God as I have stopped blaming so many other things that can cause death, I have no one or nothing to blame. I wish that I could find the place or the person to blame, maybe it would help me to vent my pain and frustration. When I am finished venting my anger and hurt, the cancer will still be there. I suppose the idea is that, should I find the person who caused this cancer, I could make my presentation. No matter how good I could present my argument regarding the unfairness or its cruelty, the cancer would not be removed…unimaginable.

So what is so kind with cancer that it cannot be called cruel…Not much. The kindnesses that I have found have been in those people who have been with us as we walked this hard path. They are God’s kindnesses that come in all sorts of shapes and sizes. God’s kindnesses are in the faces of the celebration, the uplifting emails and cards that are sent, the gifts of goat’s milk and eggs and most importantly, the never ending prayers. They may not seem like a lot, but they are those small blessings that show us that God is too kind to be so cruel for us to be left alone on this journey. He knows just how hard this walk is and he has sent us many many blessings in the form of those who are willing to walk each step. Step by step, day by day….

As a burden, we are too heavy to be born by one person or by just few people. Human nature and its natural kindness runs out long before this journey is completed…This is not theory. This is my observation as I have watched many family members die with this disease. This is also my observation as a nurse who has attended many at their time of death. I have watched the weariness of families when they have denied the small “helps” that were offered. I have seen the toll that their pride has cost them. It was in addition to the toll of the cancer.

Call it charity or kindness, I call it God’s blessings when others inside and outside of family have offered to do what they can to help us during these dark shadows. For each and everyone who has done the smallest to the largest of things for us, I have prayed that God would bless them as they have blessed us…To not accept their kindness would cheat them of a blessing that God has in store for them…that is what I believe.

God is too kind…he has extended my husband’s life longer than medically is expected. Even his last hospital stay is evidence of God’s kindness. Every one of his care providers were wondering if this was the beginning of his the last days. Each one knew medically,  he should not be returning home, but he came home. His journey on this earth is not finished. However, all of the things that are necessary to end his life are in place.

The tumors are crowding out every conceivable inch that was achieved by the December 2005 surgery. Nothing should be functioning, yet they are….what a kindness in the face of such certainty….

Yes, my God is too kind to be so cruel and he does provide everything in our lives. He does this in spite of all of the mistakes that I and my husband have made in the choices that we made in our lives. We should not expect these kindnesses, but they are given.

As I look back on some trips that we took and other things that we have done when most our age would have saved all of those things for “retirement”, I know that it is good that we didn’t wait. In our lives, waiting would have meant never living…

He has blessed us with provisions of love and kindness and they are unmerited…I believe that when we see God’s kindness, when our choices should bring us only cruelty, that is when we see unmerited favor. That is my understanding of Grace. God’s Grace is renewed every morning and we are blessed as we walk this Valley of the Shadows….He is too Kind to be so cruel….I believe…

In The Shadow of Valentines….

The family doctor entered my husband’s hospital room. He wore a smile and when his gaze met mine, I knew that today was a day of small victories..He commented that we had to stop spending our holidays this way. He was referring to last Thanksgiving being spent in the hospital and now, Valentine’s Day.

Earlier, when I entered into his room, “Happy Valentine’s Day”, was the first words out my husband’s mouth. I fought back the tears as he apologized for not having anything for me. It was the first Valentine’s Day in 19 years that he hadn’t gotten me a card or gift.

Instead, I remembered the first Valentine’s Day present that he sent. He was the first man that ever sent me flowers. On a late Saturday morning I was busy doing my chores when my mother called me out of my bedroom. When I came into the kitchen, a bouquet of red carnations in a green vase was setting on the kitchen counter. My mom was smiling when I asked if they were for me. I ran to the front room window in time to see the florist’s van pulling out of the driveway. I ran back to the flowers and searched for the card. Deep in the bouquet, I found a it. I recognized the handwriting and I was enthralled because it was from him….

After lunch, the doorbell rang again. A different florist brought a couple more deliveries but I wasn’t very interested in those flowers even if one was from a  “secret admirer”. I only had eyes from those carnations. They were from “him“…

That what I was thinking when I gave my husband a big kiss and told him that I had all the Valentine’s Day gifts that I ever wanted. All I wanted and needed for Valentine’s Day was that he was feeling better…

I reminded him that we had a nice dinner at one of our favorite restaurants last week. I mentioned at that time that it was probably our Valentine’s Day dinner. I don’t know why I made that comment, but that is what I thought. Maybe I said that because it was such an enjoyable evening or maybe deep inside I knew that our likelihood of having a Valentine’s dinner was slim, I don’t know.

The rest of the afternoon I sat and read to him. Usually when I read to him he falls to sleep. I was pleased to see that he drifted off. While he was sleeping, I went over to see the Integrative doctor about my husband receiving his weekly IV of Vitamin C. He was coming out of the door and said that he was on his way to my husband’s room.

He visited with my husband and checked him over thoroughly. He agreed that Vitamin C IV would be benfitial and that he wanted to check out his Vitamin D level as well.

He reiterated the need for my husband to not become stressed or concerned over anything and as he was getting ready to leave, he called me over, held my hand and my husband’s. He closed his eyes and prayed. He thanked God for bringing my husband and I into his life. He gave thanks for my husband’s life and the good that has come into this world because he was in it.  He expressed his gratitude for being chosen to be my husband’s doctor and asked God to help my husband to not stress over any relationships, any finances, or any hurts or pains in his present or past. As he said, “Amen”, he gave us both a hug and told us to be well.  Tears were rolling down my face and my husband’s. It meant the world to us that this quiet man humbly thanked God for us….As he turned to leave, you could feel a sweet peace and a loving presence in the room. It was a wonderful Valentine’s Day present….

The shadows on the hospital wall said that sunset was approaching and I knew that I needed to get fuel before I went home tonight. I gave my husband a kiss and I told him what I needed to do and that I needed to go before it got really dark out.

He told me that it was alright and that he just wanted to go back to sleep. I sat on the bed and said that I wanted him to call me if he needed me to come back and spend the night with him. I told him that I wanted to be with him as long as he needed me…He reassured me that he was fine and all he needed was to go back to sleep…

As I was leaving, the lyrics of a song came to me. I had to think for minute exactly from where or which songs were these words. Then I remembered. It was a song that I sang for my audition for the IU School of Music summer camp. (It got me in the camp) It was the same year of high school when my husband sent me the Valentine’s flowers. The song is from the musical “Oliver”…I purposed to go home and find the song. It surprised me to find that Melinda Doolittle sang it on “Idol”. She made the song come alive. (Please, overlook all of the “Idol” blather.)

This song expresses my heart on this Valentine’s Day….

An Award…A Reward…

a-roar-for-powerful-words-shameless-lions-writing-circle.jpg I was most honored and surprised by being “tagged” by an author of who I have the utmost respect. Roads at http://thepriceoflove.net placed me in good company on his blog and recommended me for an award from “The shameless Lions Writing Circle”….

It was the discovery of Road’s site that caused me to know that others have walked through the Valley of the Shadows and survived the pain, the fear and the loss….it gave me hope…

One of the rewards of this affair is that your site is promoted and the responsibility that goes with the award is the requirements for promoting other sites on the Web. The requirements are the following:

1. Link back to the person who tagged you in your post.
2. List three things that you believe are necessary to make writing good and powerful.
3. Tag five other people via comment.

The most formidable task, for me, is the linking part. I am to link back to the author who recommended me for the Award. Linking is an “IT” kind of thing and “IT don’t know” much…So I “linked” the best that I know how. It doesn’t look as good as Road’s links on his blog, but it is not about how good the links look as much as it is that you discover his site and the other sites, if you are walking on this path.

I believe one of writing’s greatest purpose is communicating thoughts and ideas that may never be produced in conversation. I began to write a journal because I knew, if I wrote my thoughts, ideas and emotions down on paper (now on the screen), I could no longer allow them to rattle in my head without true form. I had to give ideas and emotions a concrete place in my thoughts and writing became my “reality check”

So, the first thing that I believe it takes to “Roar” as an author is to convey your thoughts well. As Beethoven did with his music, words are the author’s tools to express you passions, fears and all manner of intangibles made tangible.

The second quality must be the ability to tell the story. I always loved it when my father told me stories. He rarely read one, he always told it to me and I would hang on every word…writing is story telling and you have to be able to tell your story in a way that is uniquely yours.

I am telling my heart’s story as I write “Walking in the Valley of the Shadow”. The value of my words are to release my passion, my heart and my love for my  husband as we walk this final journey together.

I am so glad that the final requirement for writing is  NOT the ability to spell correctly. If it were, I would never write a thing…At least, I can get the word close enough that spell check gets a hint of what I am trying to write…Before, spell check, I used a dictionary a lot….

The third quality of writing a site that “roars” is relevance. I believe that your use if words and your story writing must be relevant to those to whom you want to convey your thoughts. I began my blog so as to find others who were walking this road. I knew that there were many who were walking this path because I saw their faces in the cancer center. I saw in their faces the silent pain as they were caring for their loved one with cancer. Silence seems to isolate those of us who are caregivers. Even though there are support groups that reach out to care givers and cancer patients, I didn’t want to attend.  As I know myself, I knew that I would refrain from allowing a group of people into the very depths of my heart. It was “safer” for me to write the words and throw them out into cyberspace…

My quest was in searching for people who could relate to my experience and if I found them, I was no longer alone. I was hoping that should I find them, they would realize that I could relate and experientially understand their personal quest…so, relevance makes words “roar”.

The next task is to recommend 5 other blogs….I hate to admit it, but I rarely read other blogs than those who either recommended me or who I was recommended with i.e. Roads and Nicole3 ( http://nichole3.wordpress.com/) There are many excellent blogs that express personal sorrow and the challenges of death and dying.

The blog that I read most often is  A Stepmom’s Say http://astepmomssay.blogspot.com/….Mrs H has all of the qualities that I noted and she  is passionate about her life as a step mother…

Sprinkled through out my story, are milestones and tragedies that find their roots in my years of being a stepmother. Those years were impacted by some of the same challenges that Mrs. H finds in her present days. I enjoy reading her blog and following her story and her insights on this important role that she plays in her stepsons lives. There are many commonalities of her experiences with those that I experienced….She has all of the elements that I noted that make writing “Roar”.

These are my recommendations for the “Sites That Roar” Award….However, I didn’t know that I “roared”. I recently experienced a few incidents that caused me to realize that I need this blog more than I need any “tool” as I walk this path. This blog has become an outlet as well as a focal point on my journey. When I thought that my blog was beyond  retrieval, I discovered an intense feeling of being lost without my bearings. I felt great sadness.

I write for me. I write for my husband. I cannot take credit. It is the love for my husband that wrings my heart and the words appear. I do need my words. My words to me are as the brushes are to an artist who paints. These words are my tools of expression as I walk through this Valley of the Shadow…

The Shadow of Pain

My husband is in the hospital. I am home collecting things for his hospital stay. His pain is hard to treat at this stage. The look in his eyes, his bravery in trying not to go to the hospital, his stubborn will to not give in to this monster called cancer are all the things that he was trying to cope with before I said, “Enough”.

I can see it in the doctors eyes. He is walking closer to the sunset. He hates the idea that he can’t come home…We will wait a day or two to see if they can resolve anything…if not, I will bring him home and set up hospice care….

The pain in his eyes tell me things that he refuses to utter with his mouth. I will bring him home so that I don’t have to look at his pain….Now, I must think…What is it that is going to be needed while he is in there…what do I need to bring to him…things of necessity, things of comfort, pictures….I have to think instead of cry….

These are the shadows of pain that I feared most….Shadows…and pain….pain and shadows…. 

Shades of Frustration …

Our emotions are such a vital component of this journey. The diagnosis generates the beginning of the roller coater ride of thought and feelings. After the initial shock and the search for hope in the prognosis, you begin to search more for an indicator of sorts to point you toward a way to manage  your inner life of feelings, emotions and the role they play. It would be nice to have a manual of some sort for help in recognizing the signs of overload, exhaustion, and frustration.

I am sure there is a self help book dedicated to this sort of thing, but going to a bookstore to find such an “animal” just is not on the list of priorities when this journey is fresh and this journey is nothing but a flurry of activity generated by test, procedures, and doctor visits. Yet, it would be nice to have a brochure or pamphlet similar in design to what is handed out when you begin a new medication or when you have a new apparatus such as a continual pump etc.  A short overview as to  what can be expected concerning the emotional impact would be so helpful as well as a guideline to help identify the different forms of negative feelings. Just a clue as to their effect on the patient’s physical, emotional and spiritual health and what is their effect on the spouse or caregiver would be appreciated.

Abbreviated information to help in knowing what is close to “normal” for the fears that grip you in the night would bring assurances. Or a few suggestions as to where to look for a little joy or a ray of hope at the beginning of the journey would be nice with a side note as to where you can go to find a few moments of that feeling called “relief” would calm the deluge.

One of the more difficult and pestering emotions that seems to show up on a daily basis is called “Frustration”. It is the nicer term for the controlled emotions of fear and anger. Frustration seems to have shades or degrees of intensity and it seems to have an unlimited source. It is found in the mundane as well as the dramatic. It isn’t confined to just our perspective.

While My husband’s son was here for a few days after our ceremony, he decided that he would spend the day with his dad by running “errands”. It was a welcome relief for me to not have to do the running around and I could have a few hours at home.

The first stop was the family physician’s office for a blood draw. My husband’s medication dosage is based on the results. Each week, we go in and have the blood work done then later in the day, the doctor’s office calls with the adjustments. Because of it being the height of the cold and flu season and my husband’s compromised immunity, I sent masks with both my husband and my stepson.

The next stop was to the pharmacy for the monthly refills of medication and then onto the local WalMart (which I find a major challenge on a good day) to pick up a few things  for supper.

Those few hours with just me and the dog in a quiet house without any demands were relished and greatly appreciated. For me, there is nothing like having the house all to myself that recharges my emotional batteries.  I have always  thoroughly enjoyed the personal solitude that this experience brings. I suppose it is the way I am made. No complaints, here.Please don’t misunderstand, I do not consider anything that I do for him a burden or imposition.

When my husband and stepson returned, I saw a look of wear and tear on my stepsons’s face. It is the recognizible look of worn frustration. I asked him what had happened. He  proceeded to tell me about the long wait at the doctor’s and having to listening to the guy next to him cough up a lung. Then he said that the pharmacy was a crowded with lines as long as an amusement park. He said that the wait there was almost as long as at the doctor’s office. He noted that it appeared as if the entire senior citizens population of of our small town was in that drugstore. He continued on with the same observation at WalMart. He said that everyone in there seemed to have blue hair.

I said that I understood what he was saying because that was a normal “first of the month” occurrence. I explained that his father and I seem to have stepped into a time warp that has propelled us 25 years in our future. Stepson said that his dad made the exact same comment.

I explained that his dad and I never expected to be living like his grandparents at our age. Even though we aren’t even close to the age of Social Security Retirement, being on Social Security Disability made us subject to being a part of the “First of the Month Club”. Explaining further about how the government money hits at the first of the month, we members quickly visit stores. For many of us, food and supplies run low or completely out. Should that happen, you do without…

I pointed out to my stepson that living like this is quite frustrating and we have had to adjust to life on a fixed income. The frustration that we experience isn’t having to live so frugally.  When the doctors said that his father had 6 months to 2 years left on this earth, we chose for me to stay home and care for his father. We chose to absorb every  moment, to seize it, to experience life together as long as we possibly could. 

What was the more aggrivating aspect of living like this was knowing, at this time of our life, we were not suppose to be here . Whatever our sense of normalcy was prior to cancer was totally erased and replaced with living like we are ’70 something. Overnight, we went from being early middle aged to senior citizens… it just feels so weird to be grouped as part of the “Blue Hair Herd”.

Frustration of life circumstance is one of those “normal” emotions after cancer put us onto this road, but there are plenty more forms that it can take. For my husband, the most recent aggravation has become the continuous “follow up” visits scheduled by the oncologist.

Yesterday, we had a “re” scheduled follow up appointment with the oncologist. As the time drew closer to getting ready to leave, I could sense my husband’s frustration building. He was becoming more grumpy and I finally asked him what was bothering him.

He replied that he did not see the necessity to keep going to these “follow up” visits to a physician who has already stated that there is nothing more to offer him in regards to cancer treatment. What was the need to go in and try to be punctual , sit in the waiting room observing that we are the “kids” in regards to the mean age of all of the other patients, wait in a tiny cubicle that is colder than an igloo, make conversation with the doctor about her most recent travels, lay down on the treatment table for her to measure the increased size of the tumors, put clothes back on, say your good byes and go? All of that takes 3-4 hours out of a life that may have a limited amount of hours remaining and all for what????

I couldn’t find one argument as to why he should do this. It didn’t make sense to me either. There was no new drug on the market, no new surgery or surgeon, no new method of administration for the chemo drugs, nothing, nada. Why, indeed!

As I watched the frustration continue to build, he finally said what it was that was frustrating him the most about this appointment.  He said that every day that he went in for his IV Vitamin C treatment, he could feel that no one believed that this vitamin regimen was worth his time. However, this pallative treatment was more benefial of all of the  treatments that he has received in that clinic. He said that the process of building up his body gave him a “quality of life” result and it was the only treatment for which he believed worth his time and effort. He said he could sense that no one in the clinic believed,  had a positive thought or shared in his belief that God could perform a miracle and spare his life. He said that he could feel the negative thoughts disguised in pity and compassion draining his hope when he walked in the door. That unspoken disbelief caused his frustration to build to the point that now, he  has associated frustration with the clinic. He didn’t want to go there unless it was for his high dose Vitamin C IV treatment.

That is all that I needed to hear. I went to the phone and call the doctor’s office to cancel the afternoon appointment. When there was no answer, I left a message stating that he wasn’t coming and if they needed to charge us for the last two missed appointments, go ahead. (There are some doctor’s offices that charge you if you don’t show or if you call to cancel the appointment at the last minute.)

Minutes later, the secretary  returned my call and said that there were no charges for missed appointment. She said that it is understood that cancer patients cannot always make their appointments. Most patients can’t predict how they will feel on the day of appointments and cancelling at the last minute is not a problem. Then she said in a compassionate voice, “He is giving up, isn’t he?”.

I wasn’t expecting that and it stunned me for a moment. I thought to myself, “Quite the contrary. He doesn’t want to hear anymore negative words spoken over him and his condition.” However, I kept that thought to myself and replied that giving up was the farthest thing from his mind.

I explained that he knows that there is nothing new to hear and nothing new to report.  I explained that he doesn’t see the need for follow up appointments and he just doesn’t want to spend the time in the doctor’s office. I said that we would call if he wanted or needed to see the oncologist but there was no need to reschedule this one.

The secretary was very pleasant and said that was fine. She said that she would relay his desires to the office nurse and then onto Doctor. I ended the converstation by saying that we would be calling soon to schedule another Vitamin C IV treatment and we would see them all then…

The look of relief on my husband’s face and the break in the tension in the room was worth the phone conversation. Why encounter just one more “something” to become frustrated over when there is nothing to gain, but frustration? Makes perfect sense to me…

I think that we found one more way to handle the frustration/fear/anger combo. Eliminate those things that work against a positive state of mind, even when it means not seeing your oncologist…

I doubt if we would find a chapter in that non existent emotional manual called frustration, but I think that we are not outside normal bounds by managing frustration in this manner…

What began as a dark, deep shadow, ended up being a lighter shade of frustration for this day…..one more prayer answered….one more day without a the burden of a negative emotion…better yet,we found it!!!!