If I ever look like I enjoy the challenges put before me you don’t truly know the pain deep inside my soul.

My son, Jason Ethier is a survivor of childhood cancer. In 1987 at 2 years of age he was diagnosed with T-Cell Leukemia. To cure the cancer Jason received chemotherapy for 30 months and 2400 Gy rads of cranial radiation. In 1987 I was told that without the treatment Jason would die. So I signed informed consent to the protocol. I was a single mom and I didn’t want my son to die. What I didn’t know was the toxic protocol would also change my son’s ability to have a life comparable to his peers. I didn’t know it would be this hard to watch him overcome challenge after challenge. I didn’t know my other son would have his own challenges as I spent time with his brother. I didn’t know I would acquire depression and PTSD.

A few months ago Jason applied for support from our local government, today he received a letter saying benefits denied.

Jason is a young man and faces challenges with the late effects of cancer treatment. The radiation treatments have impacted his life in a major way as Jason has a brain injury that affects his memory, attention and learning. Living with a brain injury has made school work difficult and caused employment issues for Jason.

Challenges with memory are the hardest for Jason to deal with. Medical researchers  have reported that children who received  cranial radiation as part of their treatment are at risk of early onset dementia as early as 36 years of age. ¹

Jason also has other side effects from treatments, hormone replacement therapy and sterility. Jason is being monitored yearly for heart damage from the drug Adriamycin. This February his echocardiogram revealed a decline in ejection fraction from 60% to 45%. Jason is now being followed by a cardiologist. He is experiencing symptoms that are frightening to him. He has told me he feels “his heart stop” and at times it’s beating too fast. And he is afraid of dying.

My anguish is deep and I am one frustrated pediatric oncology mom. How can a group of scientists develop cures that interfere with a child’s normal growth and development and then leave the child and family to navigate community supports that are hard to access or not available?

Jason is not alone, there are many survivors like him who need support. Advances to the treatment of childhood cancer have made it possible for many children to be cured of their cancer. For approximately 2/3 of these survivors their cure came with a price. Surgery, radiation and chemotherapy treatments can interfere with a child’s normal growth and development and often leave the survivor to face lifelong medical and psychosocial challenges. Some of these side effects include heart, lung or kidney damage, fertility issues, and neurocognitive impairment.

Childhood cancer survivors not only have medical issues but also have poorer economic outcomes. Studies have shown that compared to their siblings childhood cancer survivors have higher rates of unemployment and if they do work their income is lower than that of their siblings. It is imperative that these survivors have opportunities to live to their full potential. Childhood cancer survivors who have late effects of treatment need advocates to help improve their quality of life.

If I ever look like I am enjoying this journey………..it’s all pretend. I know God hasn’t forgotten me and if I did not have my faith I truly do not know how I would have the courage to keep moving forward.

I pray for all children with cancer and their journeys. God bless and protect each and everyone. I pray for the parents who mourn.

References:

  1. Gregory T. Armstrong, Petersen C. Ronald, Nan Zhang, Aimee Santucci, Deokumar Srivastava, Wilburn E. Reddick, Robert J. Ogg, Claudia M. Hillenbrand, Noah D. Sabin, Matthew J. Krasin, Larry Kun, Ching-Hon Pui, Melissa M. Hudson, Leslie L. Robison and Kevin R. Krull – Long-Term Memory Deficits and Early Onset Dementia in Aging Adult Survivors of Childhood Acute Lymphoblastic Leukemia Treated with Cranial Irradiation

I created this blog to have a voice. To stay current I have tried to write at least one entry a month. It has been 4 months since my last entry. I have lost my voice. I am encased in battle armor like an ancient warrior waiting for the next fight. The armor is keeping me safe. Protecting me from that deep seated soul pain I don’t want to experience.

I stay home, I stay silent. Finger to my lips, throat emitting an inaudible ssshhh sound. Don’t talk, don’t cry, don’t mourn.

This morning the armor cracked a little and I let the pain of childhood cancer days creep inside. I was minding my own business, watching “The Voice” on television. One by one the songs chipped away at my armor and I started to cry. The words,” like a movie, like a song” cut the deepest and I was lost in memories of childhood cancer. Little smiling faces. Each child’s face flashed before me. They were young, they were innocent, they were precious.

How do you not remember them? Perhaps you didn’t see them. I did all that I could to improve the quality of life of children with cancer and their families and in my efforts I became mentally and emotionally unhinged.

Look at me. Sitting here crying, in wonderment asking you how you don’t know my pain. There is an indescribable ache in my chest and it pulses in rhythm with my heart.

I have a story of my own family’s journey with childhood cancer. I was 30 years old when my 2 year old son was diagnosed with childhood cancer. My son is a 29 year survivor and faces challenges with the late effects of cancer treatment. He has a brain injury from radiation to his brain and this spring the late effects of Adriamycin on his heart was added to the mix of medical challenges.

I wake up every morning and “the movie, the song” is now the only life I know. There is a clear demarcation in my journey, there are two paths; life BC and life AC. I had a life before cancer and it was ordinary, it was fun, I had a happy heart and I lived free. My life after cancer has not been ordinary, my brain chemistry has changed, I have depression and PTSD, I live in sadness and fear and I do not live free.

I still see their faces, I remember my voice was loud and I fought for them. When I asked you to help children with cancer, did you? Did you look the other way because it’s too hard to look into their story?

I am changed and I have lost my voice.

In spite of my battle fatigue I will move forward in faith that God has a plan for me. I will strive to live in a spirit of hope, charity and love. It is my prayer that after cancer days are lived with purpose, and I hope my voice is heard.

Friday, January 15, 2016

This is my first entry for the year 2016. I have been wrapped in a blanket of fear, despair and hopelessness.

This winter has been a rough road of grief. Depression and PTSD compounded by a period of mourning for the passing of my dad. This morning for the first time in a long time I woke up and felt brave enough to go outside and shovel the driveway.

It was quiet in our little cul de sac, I carried no sadness and I just took in the sights and sounds of a cold winter day in Alberta. The sound of the shovel as it scraped across the pavement, a bird singing it’s morning song and the sight of rabbit foot prints in the fresh white layer of snow.
During the moving of the snow I had warm wonderful memories of dad and I shoveling the same paths just 2 years ago. I had no tears this morning only love and gratitude. Enough grace for the day.

When I came into the house I tucked myself into my little corner and opened my iPad to check FB. I had a message from a dear friend. The message went something like this: I have been thinking of you a lot lately and this morning as I read my Bible I read Genesis 1:2 where God said “Let there be light and it happened.” It brought tears to my eyes as I prayed God would bring light to you. I am hoping you have a God-light day.

So far it has been a wonderful God- light day. Thank you for thinking of me dear friend.

I hope the prayers I say for people who come across my path have impact in their life, like the message I received today.

 

Friday, December 11, 2015

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. (Matthew 6:34 NIV)

Long ago when I was writing my book “Count It All Joy” somewhere in my mind I was hoping I would one day have a rags to riches story to share. Unfortunately that is not the case. As an independent publisher promoting and selling my book is not in my wheel house of skills. Also, my challenges with depression and PTSD has impacted my ability to secure steady gainful employment. I am not poor, at least I don’t think so, but I do have a hard time making ends meet each month.

It takes great effort on my part to stop comparing my life to that of others. There is no point in doing a comparison, some people just seem to have an easier life. My life is what it is and I have come to the conclusion my life will always be challenging.

I am currently in a deep period of mourning as I come to terms with my father’s passing. It is hard for me to accept that I can never hold his hand, give him a hug or see his beautiful smile. My father’s presence in my life was very dear to my heart. As I have said before he raised my two sons and as a result I have spent most of my life with dad nearby. I feel like a part of my being has disappeared.

My faith in God assures me that his soul has departed and he is in God’s heavenly kingdom. I saw the smile on his face as he gazed into another space or place and took his last breaths here on earth. It was a glorious smile that filled us with peace as we bore witness.

As I try to live in moment, forget about childhood cancer days and stop worrying about how I will pay my bills, when will I feel better, why am I always so tearful, God always finds a way to nudge me out of the cycle of worry. Sometimes it’s the snowflakes, the blue jays in my backyard, my little white dog Coco, or my sons smiles who bring me to the present and let me know that life is good and I do have just enough grace for the day.

 

Sunday, March 14, 1999

Tomorrow my book Count It All Joy goes to the press. The printing, binding and viewing process should take about 3 weeks. I am very pleased with the progress I have made in self-publishing my first book. I like to work on the project as it keeps my mind from meandering to the lonely, achy feelings I still experience. I seem to get stuck in the same cycle of thinking, especially in regard to Jason’s life.

Monday, March 15, 1999

My book is not going to the printing press today. The editors and I require two more days to complete the revisions. Hopefully everything will be in order by Wednesday. I have only one thought on my mind these days. Get the book published.

Sunday, April 4, 1999

Today is Easter Sunday. The book is finally at the printers and is being prepared for the press. This week I will go to the printing shop and do a color check of the book cover. All of this publishing knowledge came with research that I did on my own to make sure my story was published. Self-publishing my story seemed to be the route to take. It was always important for me to be sure that the Kids with Cancer Society would get a portion of the money earned from the sale of my book.

Memories of the past still haunt me. My mind carries thoughts of loneliness, and anxiety still cripples me with fear. Push forward, keep busy, and don’t look back. Today is a new day. I remind myself that my moods are more stable and peaceful. If I really concentrate on the good things in life, I know I will get through the day. As long as there are children around how can I be lonely?

Friday, April 30, 1999

I wake up this morning with tears ready to spill from the corners of my eyes. I get dressed and walk to the cafe bar. I am hoping that the busy atmosphere will distract me from facing a day with tears in my eyes. I push the feeling away.

My book is in the bookstores and people are reading my story. That is a good thing. I try to stay focused on the goals I have set for myself.

Sunday, May 2, 1999

Yesterday I was scheduled to sign books at a friend’s cappuccino bar. I was not able to stay and continue with the signing. The anxious, restless feeling emerged and I could not sit still. I had to get up and leave the cafe bar. The noise and the people were too much for me to absorb. I drove away from my friend’s place knowing that he would be disappointed. But I know my mood swings very well and I knew with the tingling in my face, neck and spine that I had better find another activity.

I automatically took myself to Debaji’s Fresh Market. I immediately felt comfortable in the familiar environment. Even though I am still unable to buy groceries I followed my routine of looking at the produce and baked goods. I selected bananas and bagels. Maybe one day I’ll step out of the routine and buy a shopping cart full of fresh produce, fish and pastries. But today I’ll just stick with my simple purchases and cheer my soul with a bouquet of fresh flowers from the market’s flower shop.

I spent the rest of the day running errands and went to bed early with a good book. I am very pleased with the fact that my mind lets me absorb the contents of the book without the restlessness I use to feel when I tried to read. Right now I am reading a big fat book written by an Irish author. Her style of writing is just right for me. She brings in lots of characters and her writing moves in and out of several story lines.

Thursday, May 6th, 1999

Every morning I need to make sure Jason has taken his medication. I have just recently bought a 7-day pill container, with each day of the week marked on a separate compartment. I thought this method would help us avoid the memory loss and resistance that Jason appears to have in regard to taking medication.

This morning I opened the Friday compartment containing pills that will help Jason to concentrate, to stay focused on school assignments and maintain a socially acceptable behavior. I looked at four little pills in the tiny little compartment and realized that the events of the day will be somewhat determined by the chemical properties contained in the pills.

If Jason doesn’t take them before school, the day will be a lot busier for the people around him. If he takes them he will be a great deal easier to talk to and his behaviors will be less impulsive and aggressive. I am aware of this by years of hard-earned experience. There are pages and pages of information available for me to read and learn about the human brain and how injury to the brain can cause changes in human behavior. I don’t like to read those books anymore. I just wake up in the morning and hope the day will be a good one.

Earlier this week Jason met with the neuropsychologist who is now a part of the pediatric oncology team. The purpose of the meeting was to discuss ways that the doctor would be able to help Jason face his challenges. Next week the doctor will visit the staff at his school and describe the impact that radiation and chemotherapy have on a young child’s brain. We now have a medical advocate that will help to ensure Jason’s educational experience is a good one.

Saturday, May 8, 1999

Survival, that’s really what my journey has been about. I made a choice to share my story so I could feed and clothe my children. I made a choice to recover so my soul would know the pleasures in life. Survival, I wake up every morning with a passion to make a better life for my sons and myself.

I must have written this in my journal before. Very basic words of what must be done, but very difficult goals to accomplish when your mind is weary and your heart feels broken.

Today is going to be a busy day. I have two book-signing sessions scheduled. This morning I will autograph books for the Mother’s Day run sponsored by the Running Room in St. Albert. After lunch I will enjoy a latte at the Second Cup and sign books for friends who want my signature added to their copy of Count It All Joy. It sounds like a fun day. I hope my mood doesn’t wreak havoc on my ability to have a good time.

I am going to go for my morning run and release any negative thoughts I might be feeling. As my feet touch the pavement I visualize the anger leaving the soles of my feet. I run with a purpose, to leave the pain behind me with each new step forward. I love my daily runs and marvel at my ability to run, instead of sleeping and resting with my quilt.

The last few weeks have been very busy for me as I promote my book. I do all the promotion, interviews, book signings and distribution. It takes a great deal of courage on my part to look at the person in front of me and say here’s my story, I hope you are inspired by my words.

Monday, May 17, 1999

Take me to the market. Please! What a glorious place Debaji’s market is for the soul. The sights, sounds tastes and smells are very uplifting. There is an eclectic mix of people sampling fresh fruit, gazing at the yummy pastries and smelling the fresh cut flowers. With the gentle buzz of activity throughout the market your soul knows it won’t be lonely if you hang around for a bit. I love to order a latte, sit on the high stool at the bar and drink in the delights of nature at its finest. Always, bring me to the market, please.

Thursday, May 27, 1999

So what have I learned in the last ten days? I have been told that I am a good writer and that my book is very compelling. People are amazed at all that I have been through. I am in awe of the praise I am receiving. I have never considered myself a writer. I am surprised when people refer to me as an author. Enough said of that.

I am still facing incredible challenges as a single mother. Even though I have said   I am emotionally and mentally exhausted I am still expected to supply the health and safety supports my sons require.

Give me something practical and tangible to work with, like money to pay for a caregiver that can assist Jason with his daily living needs. Someone to help him with his homework, help him with his nutrition and fitness skills, introduce him to the community and let him play in a manner that is safe for him and for those that are around him. If I hold out my hand and ask for help in raising a child who has long term side effects from a medical treatment that was necessary to save his life, who is going to help?

Thursday, June 3, 1999

We see what we want to see. We hear what we want to hear. This thought keeps popping up in my mind over the last few days. Kids with cancer, is a phrase that says it all. People don’t want to see pictures of the sick kids, nor do they want to hear the details of the disease. There’s just something about the title kids with cancer that can make one feel queasy and uncomfortable or sad and teary-eyed.

A special young boy who fought a year long battle with Leukemia passed away last night. One of my friends telephoned me and told me the news, just as Jason and I were leaving for the Cross Cancer Clinic for an appointment. I was expecting a call any day now but was still very upset to hear the news.

God called another one of his children home. The child will suffer no more. The child is in a better place. These are nice phrases to say to help us cope with loss. But I have seen the agony of parents holding their child and witnessing the horror of the last breath. Those pictures in my mind will be with me always.

After I heard the news of my young friend’s death, I told Jason I didn’t feel like going to the clinic for his appointment. He said Mom “I need to go.” So Jason and I went to the Cross Cancer clinic. Jason met with the neuropsychologist and I went to the quaint little gift shop to look for a sympathy card for the family. Usually the little shop cheers my soul with its cute little teddy bears, and charming gifts, but not today. Today I stood in the shop and felt the pain of childhood cancer on my shoulders.

For a few brief moments my thoughts took me back to the days when I was the mother of a two-year old son who had Leukemia. I started to cry. I knew this wasn’t going to be a good time to look at cute things. I quickly purchased a card and walked down the hall to the pediatric clinic. Let me see a colleague I know and we can offer each other some support.

Echoes of the past reverberate through my skin as I recall the voices and faces of the children who ran down the long corridor to get to the playroom that offered childhood muses. The parents always walked at a slower pace with heavy hearts and their mind a buzz with worry. What will the check-up reveal? Has the cancer returned? What’s the blood count? Do we go to the hospital for chemo? Will I walk out of here with a smile on my face? Try not to think about those things, smile at the receptionist and say hello, pick up the requisition for lab work and take your child for the weekly finger poke. Drop by drop the blood slides into the plastic container.

Jason’s voice nudges me out of the shadows of the past and I hear him say, “I’m finished mom, can we go to McDonalds on our way home.”

 

Entry from my Journal.

August 25, 2014

For several days last week I kept repeating the words “His Eye is on the Sparrow.”

This morning when I opened the back door I saw a little white feather tucked under the door mat. I picked it up and wondered, is a feather from a sparrow? I brought the feather in the house and placed it by my candles.

Later in the morning on my bike ride I kept noticing little white feathers along the trail. Most were in the grass and not directly in front of me. I said coincidence, I am noticing feathers because of the words I received last week. I made a note to self, don’t pick up anymore feathers, unless it comes directly in front of you.

This afternoon while selecting a new plastic flower arrangement for my grandparents’ gravesite, I was picking up several colors and couldn’t decide if I should chose the pink roses or the fall leaf arrangements. While holding two little bouquet of roses, I reluctantly picked up one of the fall leave arrangements. In the plastic splendor of orange and yellow colors I saw something white. And there stuck to the price tag was a little white feather.

I purchased the pink roses and the fall leaves with the white feather. Coincidence or not, I knew what choice I had to make. I placed the plastic flower arrangement with the white feather on my grandparents’ grave.

I couldn’t get the words “his eye is on the sparrow” out of my thoughts. So I Googled the words and found them to be the name of a Gospel song written by Civilla Martin in 1905.

This is what my Google search revealed on Wikipedia:

The theme of the song is inspired by the words of Jesus in the Gospel of Matthew in the Bible: “Look at the birds of the air; they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they?” (Matthew 6:26) and “Are not two sparrows sold for a farthing? And one of them shall not fall on the ground without your Father. But the very hairs of your head are all numbered. Fear ye not therefore, ye are of more value than many sparrows” (Matthew 10:29–31).

(Luke) Are not five sparrows sold for two farthings, and not one of them is forgotten before God? But even the very hairs of your head are all numbered. Fear not therefore: you are of more value than many sparrows.

Civilla Martin, who wrote the lyrics, said this about her inspiration to write the song based in the scriptures outlined above,

Early in the spring of 1905, my husband and I were sojourning in Elmira, New York. We contracted a deep friendship for a couple by the name of Mr. and Mrs. Doolittle—true saints of God. Mrs. Doolittle had been bedridden for nigh twenty years. Her husband was an incurable cripple who had to propel himself to and from his business in a wheel chair. Despite their afflictions, they lived happy Christian lives, bringing inspiration and comfort to all who knew them. One day while we were visiting with the Doolittle’s, my husband commented on their bright hopefulness and asked them for the secret of it. Mrs. Doolittle’s reply was simple: “His eye is on the sparrow, and I know He watches me.” The beauty of this simple expression of boundless faith gripped the hearts and fired the imagination of Dr. Martin and me. The hymn “His Eye Is on the Sparrow” was the outcome of that experience.

—Civilla Martin

 

I am not sure why I had the words “his eye is on the sparrow” on my mind for all those days, I don’t recall singing that hymn. But I am glad the words prompted me to look online and find this lovely story. Reading the story of Civilla Martin gave me some comfort and I truly believe the Lord works in mysterious ways.

 

copyright Sheila Ethier 2015

Tuesday, May 5, 2015

It is finished. My father’s life on earth is complete and I miss him more than words can describe. And yet somehow the sadness surrounding me feels like a natural response to death. It’s a different sadness than the one I have come to know.

My father’s passing has touched me deeply and I want him here next to me. But, if I look back on my father’s 90 full years of living and loving; I am confident his purpose on this earth was fulfilled. My father’s death at a ripe old age is a desired outcome, when it comes to dying. Death at a ripe old age is somehow what we hope for, what we expect.

What is not expected is childhood cancer. It disrupts the seasons of life; you are born, you live with your family, go to school, get married, have children, grow old, play with your own grandchildren and then God calls you home. Childhood cancer disrupts that order and a smart mamma like me knows it and my heart aches for the seasons of life my sons’ should have had.

I have a lingering sadness that has stayed with me every day since October 10, 1987, the day Jason was diagnosed with T-Cell Leukemia.

The sadness is what I am used to and throughout the day I try to live in the present moment. I do smile and I can find little pieces of Joy. I  push forward in my silent suffering, day by day, with hope, faith and much love in my heart. But, it’s mostly sadness that I carry in my heart and soul. It haunts my dreams with scenes of Jason dying, or relapsing to T-Cell Leukemia, it creeps into my days with flashbacks of the chemo and radiation days, or the fire burning the tissues of my sons face, chest and abdomen.

I have been told my symptoms are Post Traumatic Stress Disorder. Diagnosis is good for labelling things, but the pain remains the same. No matter how many psychologists, psychiatrists, treatments or medications I grab on to for help, every morning I wake up with a deep pain in my heart. Other people’s advice or opinions do not change what I have felt and seen as a mother. I am 57, just one month shy of 58 years old and I tell you with certainty childhood cancer disrupted the seasons of my life.

copyright Sheila Ethier 2015

 

I have a new Angel for my pocket. My dad. On April 6, 2015 God called my father home.

The story below describes my encounter with an Angel in September, 1994. After the encounter I remember, waking my dad and I telling him what happened. He gave me a huge smile and told me that was a message from God. Dad didn’t ask any questions or express any doubt, he just believed. And now, that’s he’s in heaven I know he’s with me, over my shoulder cheering me on, just like the Angel did in 1994. Love you dad and miss you.

This is an excerpt from my Journal, the entry was written in the spring of 1999.

Angels are significant in my life and have been for quite some time. When Jason was receiving chemotherapy in 1987 I would pray for his protection while he was lying in the crib and the anti-cancer drugs were being infused into his blood stream.  I would call to God for an army of angels to guard his bed and protect him from further harm.  Today I say that same prayer for all the children.  I believe there is an army of angels protecting children with cancer.

On Saturday, September 17, 1994 I had an encounter with an angel.  I was sleeping and my soul encountered a presence that was very pleasing, all knowing, peaceful and calm.  My soul had a conversation with the presence.  I whispered, “Mary?”  The presence assured me that everything would be all right.  The presence kissed me.  “Jesus” I exclaimed.  The presence told me to pray and left me.  I began feeling a void as it left.  I received another message, Little House on the Prairie, Wednesday, nine and ten.

As I lay there in bed I wrestled with the idea that I was to get up and check the television listings.  I knew there would be a message for me but I was reluctant to acknowledge what had just happened.  My human mind tried to reject the idea that something spiritual had taken place. Eventually restlessness got the better of me and I went to check the television listings.  I nervously checked the columns in the weekly television guide for Wednesday, September 21, 1994 at 9:00 p.m. and 10:00 p.m.  This is what I saw listed for both time slots: Touched by an Angel (Season Premiere).

Oh, boy I thought, great.  Why me?  I’m not an expert at this sort of thing.  I have depression and I can’t stop crying.  How am I to interpret this event?

It has been five years since that experience and I believe the angel came to me as a sign of hope. Even in the darkest hours of depression I managed to visualize myself holding onto a tiny corner of the robe of Jesus. Faith is difficult to hang on to when you have depression. Because your mood is so low it’s impossible to believe in anything.  Depression is an all-consuming illness that has the mind spiraling inwards on a journey into a black hole. There are no thoughts of brighter tomorrows.  There is no feeling of optimism, serenity or peace.

I am writing a story about faith in God, angels and kids with cancer.  These are not easy subjects to write about.  I want my writing to be credible.  I don’t want people to dismiss what I have to say.  Because I have a mental illness it would be very easy for someone to say, “Ah well, she believes in angels, she had a nervous breakdown you know, very sad the way the mind plays tricks on you.”

I have to speak to you directly from the heart. I share with you what I know from my own experiences. It’s not very scientific work.  There’s really nothing concrete to measure.  It’s all just rather vague and obscure assurances based on words from an ancient book they call the Bible.  How do you test the words revealed?

I believe it is called blind faith. Surrender to another power. Surrender to God.   A friend’s quote is “If you look at all the intricate details involved in the design of every little thing it is easier to believe in God than it is to not believe.”  Believing in God gives me peace.  My faith has been tested mightily over the past twelve years and I could have turned away from God many times. But my faith in God is what has helped me through the difficult times.

There is a story inside me waiting to be told.  I can feel the words on the edge of my soul, creeping out bit by bit longing to be released and shared with you.  The heaviness of my past lingers on my shoulders and I am not sure when days will be better spent.  I want to be free of past burdens. Unhurried free of worry any clutter. Faith, hope and love keep me moving forward.

copyright Sheila Ethier 2015

 

Tuesday, February 24, 2015

It happens without deliberate thought and it happens every time I dry my hair. I wash my hair every morning and to style my hair I use a blow dryer. I start with my bangs and as the hair dries I turn the side mirrors on the wall cabinet. With a turn of my head to the left I am immediately transported back to the parent’s bathroom on the unit in the hospital where Jason was getting chemo.

It’s not a painful memory just a quick flash of times spent grooming in the tiny bathroom parents were allowed to use for the morning shower to wash off stains of the past 24 hours. A few minutes of quiet time to reflect on the horror of watching children fight cancer; a time to gather thoughts to prepare for morning rounds and the day ahead.

Every parent knew the routine. Pediatric Oncology rounds would happen in the morning and we all wanted our moment with the doctors who we now revered as the healers of our fatally ill children. We always had questions, looking for the words cured and no more treatment required. Our questions were answered but the chemotherapy continued.

The hospital days of chemotherapy are with me every day. I don’t let the memories ruin my day. I try to focus on the present moment and keep pushing forward with errands, the routine of things.

Tuesday, March 3, 2015

For many years my mantra has been occupy time with the routine of things. And now I find myself saying, it’s for promises made.

My reasons for moving forward are for promises I made to my father, that I would take care of him as he ages. Dad spent many a day at the hospital or the Cross Cancer Clinic with Jason so I could continue on with my nursing school studies.

My father was close to the age I am now, and probably had other things he would rather do with his time than sit with his grandson at the hospital. Dad would take Jason to many of the appointments and it didn’t take long for the nurses, doctors and other hospital personnel to recognize the grandpa who was very close with both of his grandsons.

Dad was so well known at the Cross Cancer Institute one of the nurses who was involved with the Alberta Association of Registered Nurses asked if my dad would be part of their public awareness campaign on Nurses and Families.

I still have the poster the AARN used for the campaign with a picture of my dad, my son’s and me tucked away somewhere in my possessions. Today it’s hard to write about the chemo days and the role my father played in my sons’ lives. He is sitting beside me as I write this, snoozing in his rocking chair. I look over at him and feel nothing but pride and a deep sense of love.

I will watch over you dad. It’s for promises made.

Monday, April 6, 2015

Today my dad passed away. My heart is broken. Not able to process his passing yet. In shock and denial.

copyright Sheila Ethier 2015

pic's 410

It’s the weight of things that press hard on my heart and soul.

The last book I read from cover to back was “Still Alice.” That was in June of 2012 and two months later my dad was diagnosed with dementia. The book Lisa Genova wrote about early onset Alzheimer’s was my mini prep for the next phase of my life.

Now the book is out on the big screen and I cannot bring myself to watch it. I am living the challenges of dementia as a daughter caring for her father. For two years I have watched my father decline to the executive functioning of a child. And all the while step by step, loss by loss, I know in the deepest corners of my soul that this will be my son Jason’s life in the future.

I have done my research on aging and the brain and on cranial radiation brain trauma. Jason began his toddler years with cognitive impairment from radiation treatments, it only follows that his brain is aging at a more rapid rate than his peers. Pediatric Oncologists are following adult survivors who have received radiation treatments to study the late effect of radiation treatments. The literature coming out is referred to – Cranial Radiation and Early Onset Dementia for Childhood Cancer Survivors.

I have recently seen a  brief preview of “Still Alice” and Julianne Moore  is trying to tell her onscreen husband  that it’s like a part of her brain is dying.

More often than not my son Jason is telling me his memory is getting worse. He has expressed fears that he won’t know me one day. And last week he asked “me who is going to take care of me when I can’t remember how to?”

It’s the weight of things that press hard on me..

 

copyright Sheila Ethier 2015