Three years ago today...

I found myself in a hospital emergency room with my husband, staring at an x-ray clearly showing a tumor in my son’s neck bone. I felt elated to have found the cause of his pain, naively not understanding what lay a head. A pediatric oncologist mentioned the c-word, as she walked into our room and then we heard it again on the phone spoken by our pediatrician. A biopsy was done confirming what I had tried to pray away. Cancer had invaded my four year old son’s body. It was a defining moment. Everything around me disappeared with the truth of the doctor’s quietly spoken words. The small waiting room seemed to shrink and fill with darkness. Tears streamed down my face. Fear filled my heart. My husband began to talk, but I couldn’t hear his words. And I ran from the room trying to get away. Impossible. Time stopped, but the world kept right on ticking.

The hours and days ahead were full of confusion, anger, fear and loss. The learning curve seemed insurmountable. So much information was thrust my way, I was numb, my mind felt like mush with the details running into each other blurring everything.
New faces constantly entered our lives. I examined every move the nurses made finding myself in hyper-vigilant mode. I cautiously watched the childlife worker, as she played with my son. Various doctors came and went and there was always the medical student hanging around, fascinated, yet unsure of their abilities. I felt I couldn’t trust anyone. After all, who were these people asking me the same questions over and over again? Who were these people so interested in my son?

A day or two later my husband and I sat in another tiny windowless room with a nurse and two doctors, reading through a long list of side effects from the treatment they were proposing. My stomach ached as we went over each item. Wasn’t there a better way? This is so barbaric. How could I allow this? They wanted our signatures. We signed the papers and were left alone. Huddled together, we felt devastation and exhaustion. Too soon the chemo began, but I left, fearful of what was to come. I drove home to be with my girls. My husband stayed cheering on the toxins. He was sure they would kill the monster. After eleven days of scans, a biopsy, surgery and chemo, we finally went home. But our journey had just begun.

Today…three years later… Joshua is alive. Today he has hair on his head and eyelashes with eyebrows. Today he laughs, is full of energy and has a twinkle in his eye as he teases his sisters. Today he is in second grade reading and working sums. Today he plays a mean Star Wars video game, sleeps in his House in the Trees with us and loves Legos. Today he goes to birthday parties and has friends over. Today his smile fills my world. Today my world is full of light.

Yet, there is an underlying sadness, the grief of other children lost, an innocence gone. Today I am a different person. I was forced to enter a world no one should ever have to enter…the world of childhood cancer. The impact is forever. Three years ago today my world went black and yet…there was a tiny pin hole of light. I just couldn’t see it. The darkness seemed overpowering, but it wasn’t. Three years ago today, I thought I would never be able to breathe again. But I am breathing. I thought I would never stop crying, but I have.

Three years ago today my world, my son’s world and my family’s world changed forever…but we are still standing.

Three years ago today...and we are so grateful...

Our first date...

I was 19 and you were 23…babies and yet we thought we knew all about life, as we sat there eating pizza listening to an organ play its classic cartoon music while bubbles danced in the air. Is that restaurant still there? I didn’t eat much; I was so enamored by you, the college graduate who wore three piece suits to work. You were a 4.0 tennis player, enjoyed soccer and water skiing, but I could beat you down the ski hill. We went to a movie after dinner, The American Hero starring John Ritter, and we laughed together. Do you remember? You drove me home in your orange sports car gently kissing me goodnight on the front porch. I floated into the house, knowing I would marry you.

Now twenty-eight years later, we are going away for a weekend, our first time away… alone…for three years…three years in crisis mode. With twenty-five years of marriage together, we have walked through many fires: a premature first born, a major job change when you were forty, the demands of five children, and now childhood cancer. We smell of smoke, but we are not burned. We are breathing again. We are healing. We are different people. How could we have known back then the crisis’ we’d face? The difficulties and heartaches? Now we know more about life with shared pain and shared joy. We are secure in our commitment to each other. We are secure in our commitment to God…no matter where our journey takes us.

It will be a weekend for us to just BE. A time to be still. A time to focus on our relationship as man and wife, as individuals. A time to search out and understand each other’s needs. A time to reflect on the past, while looking towards the future. I am almost giddy with anticipation of our time away, yet nervous. Who are you now? Who am I now? I want to discover you again.

Our first date…

The boy/man...

He swaggered down the sidewalk, with two giggling girls on each side of him, as he screamed out obscenities. “Blank the weather! Blank the rain! Blank, blank, blank!” All the while looking at Josh and me out of the corner of his eye, watching our faces, thinking he’s funny, loving the attention, hoping for a reaction. This boy/man with soft whiskers on his face and scruffy blonde hair and low rider jeans; a burning cigarette dangling between two finger on the hand that was casually thrown over the shoulder of the girl on his right; oblivious to the emotions or needs or pain of others. Self-absorbed and self-focused, not really caring about anyone or anything, I sensed his apathy.

I reacted, wrongly, of course, asking him to please watch his mouth around my son. My mind flew over all Josh has been through, his life, his pain and damaged body. I thought of his courage and strength of character. I admit, I was angry with this boy/man and my words and tone betrayed the rage. Of course, the response I got back was full of venom with more obscenities directed at me. What else was I expecting?

His image and our interaction haunted me through out the day and on into the next. My heart actually hurt for this boy/man, who obviously hid under an outward appearance of bravado laced with the words he thought gave him power and meaning. A rebel, full of self hatred, and disdain for the world, what had he seen? What had been done to him? Were there any adults who cared about his life? Had he experienced unconditional love?

I began to create a new scenario in my mind, of me quietly walking towards him, asking him how he was, about his day, and who he was. I could see myself driving him to the hospital, all the while telling about my son, Joshua. We would enter the pediatric oncology floor and like the ghost of Christmas present tour unseen from room to room. I’d know each child’s name and how old they were, giving a simple description of the type of cancer they fought. He’d see their sad, hollow eyes peeking out of pale faces and hairless heads. Some would be sleeping the exhausted chemo sleep. Some would be in pain and crying. Others would be smiling from skin and bone bodies with feeding tubes taped to their faces as they played a board game with an adult. The stories would unfold. And all the while, as the boy/man and I observed the pediatric oncology floor of the children’s hospital, I’d watch his face out of the corner of my eye, hoping to see the bravado melt away, the self-absorption dissolving into the realization of another’s pain. The apathy growing into caring with the sudden knowledge of action and purpose energizing his body and soul. The knowing deep in his being would become real; he could make a difference in this world, no longer hiding behind his hidden hurts.

And I’d smile knowing this young boy/man had become, in that instance, a man…

If you were unable to watch Extreme Home Makerover about Boey in Corvalis, OR, please go to
http://dynamic.abc.go.com/streaming/landing and then click on "launch the player"

She will melt your heart...

Boey...

Sunday, Oct 7th at 8/7c tune is to the ABC show Extreme Makeover: Home Edition.

This week's show will feature the Byer family of Corvalis, OR.

Janessa "Boey" Byer was diagnosed with Rhabdomyosarcoma. This self described childhood cancer "warrior" will be the star of the show.To view a preview of the show visit: http://abc.go.com/primetime/xtremehome/index .

www.jenessabyers.com

Margin...

It’s an overcast morning in October and I’m sitting alone in my home with nothing but free hours stretching ahead of me. I feel as if I can breathe again.

Years ago I read a book titled Margin by Richard A. Swenson, M.D. It was all about leaving room in your life, having a cushion, space, instead of running from activity to activity. He talked a lot about “the tyranny of the urgent”. It’s a hard concept to grasp here in America, because we have a tendency to fill up each second of our day. And I see so many running from fire to fire, trying to extinguish them, being controlled by the urgent. Or I see them consumed by shallow, unimportant details, such as the perfect color paint for their living room. Or scheduling their child’s life so full there is no time for them to just BE. I am guilty of living this way as well. It’s hard not to, but I remember reading that book and LONGING for Margin in my life.

At that time, I was raising my four girls and homeschooling them, so my Margin, if any, was minimal. Now I didn’t have to homeschool them, it was my choice. Our oldest was born three months early weighing in at 1 and ½ pounds. She spent four months in the Neonatal Intensive Care Unit. Her life is truly a miracle. By the time she was school age, it was obvious she was quite delayed. I knew she was not mentally or physically ready for school, not even emotionally as well. I began to examine my options. Finances were tight, making private school unreachable and homeschooling seemed the best choice. So began our lifestyle, which carried on for sixteen years, our school growing as each child came along. It really worked for our family. It was a joy, a challenge and a blessing.

A first homeschooling was easy, but each year brought new challenges as the children grew and matured and as new babies were born. I never had easy pregnancies, always feeling flu like for nine months; it was hard to function well. Some years I filled the girl’s day with so many fun and “worthwhile” outside activities, that we were rarely home. By the end of the school year, I was exhausted from trying to keep to my self imposed “schedule”, which ran at break neck speed. The next year would be calmer, but then I’d forget my lesson and fill up our time the following year. I also made another crucial mistake. I didn’t plan “down time” for myself… the mother, the teacher, the organizer, the family manager. Over time, I began to burn out, but didn’t realize it until crisis hit in October 2004.

If I had only a little Margin before, now I had none as we were sucked into the world of childhood cancer. When in survival mode, nothing exists outside of endurance. This lasted for approximately two years. One year filled with treatment, one year dealing with the medical damage done by treatment and as we entered the third year, I saw the dust beginning to settle. I discovered emotional issues emerging, which had previously been buried, a bone deep fatigue and the crucial need for processing, processing, processing…hoping to make sense of it all. Homeschooling was out of the question and I enrolled my three youngest in a unique private school.

Last school year, I spent each day on campus with Joshua taking care of his trach needs, monitoring his recess time for safety and g-tube feeding him at lunch. School was a new experience for him and for me as well. He’d been isolated spending a large portion of his life in the hospital. I’d never sent a child into the capable hands of others, let alone a child with medical needs. The year went well, Joshua thrived as did the girls and I slowly began to relax.

This fall I trained the school teacher’s and staff how to care for Josh and what to watch out for concerning his breathing and neck safety. I let go and let other’s step in. I cannot begin to tell you how awesome, how caring and loving his teacher and the principal of his school are. His teacher is extremely comfortable with his trach care. The principal personally takes Josh and his class to the park for each recess all the time watching out for Josh’s neck safety. The principal has even eaten lunch with Josh, helping to cut up his food making sure he doesn’t choke. The tears in my eyes, as I write these words, tell you of my deep appreciation for the people who are Cor Deo Christian Academy.

And now, I find myself with Margin in my life. The very thing I had longed for years ago. I’ve always been a doer, task oriented, loving to check off those “to do “items on my list. After all, isn’t that how we know our worth? By the things we accomplish? How wrong I have been. My worth comes from my Creator, the God of the Universe, who happens to know every molecule of my body. He knows my thoughts, my heartaches; He’s seen every tear that has trailed down my cheek. He has watched me filling up my time, touching me with His quiet voice warning and loving me deep in my conscious, yet always the gentleman, never forcing Himself on me.

My husband has cautioned me NOT to fill up my Margin. I heed his warning, but it isn’t easy. Hours stretching before me, sometimes filled with grocery shopping or laundry, but mostly filled with writing, or contemplating God or watching the burnt orange leaves fall from our trees in the backyard or trying to capture the color of the sky on paper or watching squirrels scamper from tree to tree.

I sense healing. I breathe deeply.

I think I’ll take an autumn walk through the hills of my neighborhood now…

Ah…Margin…