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.”