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As a hospice nurse Marilyn Azevedo had seen how disease could ravage a person's body and spirit, and how it could cripple friends and family with grief. She knew about life and death. Yet, nothing could prepare her for the journey she would face when her youngest child, Andy, was diagnosed with cancer at the age of 16.
In this powerful memoir, readers share Azevedo's painful journey-from the days when she felt strong and powerful, to the days she just wanted to stay in bed and pull the covers over her head. But Azevedo's battle is more than a fight for her son's life as she takes on the health insurance bureaucracy and lobbies Congress to reform inequities. Sadly, reform comes too late to save Andy, but their efforts result in legislation preventing insurance companies from denying certain types of medical care.
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Marilyn Azevedo is a Registered Nurse living in Petaluma, California. Because of her efforts, President Clinton signed into law a bill that makes it illegal to deny people health insurance because of a pre-existing medical condition. After Andy's illness and death, she became a public speaker for the Make-A-Wish Foundation.Excerpt. © Reprinted by permission. All rights reserved.:
Andy was my youngest child, my darling. He died after a three-year battle with cancer.
I had two convictions firmly in place in my head when I suddenly had to deal with Andy's cancer, and both had come from my life with my parents. The first was that I was weak and couldn't be trusted not to panic. The second was that I was very strong because I had always endured without running to anyone.
They were both true.
Today I'm at the lake we used to come to when Andy was just a little boy. I know the things I have to do when the memories emerge. I know I have to accept and honor them and stay busy. If I don't do the things I have to do, I'll find myself going around in circles, trapped in the images of loss.
I've come to the conclusion that maybe I can do some good, and shore up my life a bit, by making an offering of my youngest son's battle with clear-cell sarcoma. I don't want to leave anything out because I need the story and the feelings to be complete if they are to help anyone else, or me.
I developed my panic from my relationship with my father, an imposing, intellectually dominant man who had always been able to do whatever he wanted to, and expected you to be able to do the same. He scared the hell out of me. There were three of us: myself; Maureen, my twin; and Melouise, the youngest.
Dad had a violent temper that he indulged physically. We went to Balboa to swim when I was five, and he wanted us to go out past the surf and dive for rocks. The first time I tried, I was caught in the waves and bashed and ground on the bottom. When I came out, I refused to go again, so he beat me and made me sit in a sandstone cave at the top of the beach for the rest of the day.
All of us had to be ready to handle the sudden explosions, but I never quite got the knack. My bowels would collapse as my temperature surged. The related problem was that I loved him to distraction.
My father gave us the sense that we could do anything if we wanted to enough, and we all wanted desperately to meet his expectations. He was a military man, a seaman and an adventurer. He sailed his sixty-three-foot sailboat around Antarctica in 1973, and wrote about it in a book called Blue Water.
Our mother was beautiful and aloof, with her own range of intimidating mannerisms. If I were going to panic, there would be little use in running to Mom.
I remember swimming and going underwater once and when I tried to come up a big hand was on top of my head, holding me down. I turned and twisted, but I couldn't get away. Through the deadening water, I could hear the other kids laughing. It went on forever. That's the panic of Andy's sickness: the helplessness, the rage, the endlessness.
We've always lived in Sonoma County in California, dairy country. From our windows, we can look across the valley and watch the hills change with the light and the seasons. In winter, the hills are dark green and, during the early summer, the unharvested fields are marked out in green rectangles.
We're dairy farmers, and our farming moves with the seasons. Once the hay and silage are out of the fields, Simon, my husband, plows for the next crop. I used to drive the silage truck, but I loved baling hay. I'd be alone with the hay, and the sky, and be able to turn back anytime to see the hard results of my work laid out in rows.
Simon is the epitome of a dairyman. He has huge hands and strong arms from years of manual labor, but his physical power doesn't mask the softness at his core. In high school he was a shy, dark boy, and I was completely thrilled when he asked me to go to the movies with him in Petaluma. Simon has always worked hard, and sometimes maybe he didn't have enough time for the kids. But he loved them, very deeply, and they knew it.
When Andy got sick, Simon barely knew what to do. He grew very quiet. In my head forever is the picture of him bending down to pick up nineteen-year-old Andy in his big arms.
"Honey," he said, "I don't want to hurt you, but I have to pick you up.
"There were tears in his eyes and just the one, unlikely word, "honey," said all he ever needed to say.
Andy was our fifth child, the last, and special to all of us. John was just seven, Paul and Linda were almost teenagers, and Cheryl was thirteen when Andy was born.
I had already had my success with my children and I was feeling confident, but I was shocked and not at all happy to be pregnant again. Abortion was an option, I guess, but I thought it over and decided against it. I knew we had room for one more in our house. Our children had all been loved, always. We made it through the pregnancy all right, long months of my confinement to bed with Cheryl and Linda taking care of the house and cooking as best they could. John was still small enough that he needed some watching, and Paul was mostly outside with Dad. Those nine months must have seemed like an eternity to them.
When the time finally came, my girlfriend drove me fifty miles to the hospital on a Wednesday night because Simon couldn't leave the cows. Andy wasn't born till Saturday morning.
I was so exhausted that when Simon was suggesting names, I couldn't have cared less. We finally agreed on George Anthony, after two of Simon's adored uncles. We found out later the baby had actually been born on the anniversary of his great-uncle George's death.
There's an Indian belief that if you are born on your namesake's death day, you inherit his spirit. I'd met Uncle George when I was ten. He was the first person in Simon's family I had met. He was a dairyman on Point Reyes (way out at the lighthouse), part of the area my father had covered as a veterinarian.
Uncle George had died of a brain tumor, but that fact hadn't crossed anyone's mind. It crosses mine now. We had wanted to put all the best of Uncle George into this child, but not the cancer, certainly not that.
Andy was always an athlete; it was what he wanted to do with his life. It wasn't fun for me to watch him getting thrown around in the football games. I cringed and winced and held my breath. His worst injury came in high school, when he caught his finger under another kid's helmet. He shrugged it off. It wasn't a big deal.
Andy stayed busy in high school. He had to keep his grades up if he wanted to keep playing football, and though his girlfriend, Alex, was away that season, his buddies weren't. There was a lot of talk about his college potential, and the pros. Things were coming together, and his future looked like it was going to skyrocket.
I congratulated myself. I'd done the right things again.
By the beginning of October, his finger hadn't healed and was causing him a great deal of pain. I made an appointment with my friend Michael, a plastic surgeon I'd worked with in the operating room.
Two days before the appointment, Andy came into the kitchen, holding his hand half up and out as if it were some separate, living thing. It was a bright morning, and the kitchen curtains were breaking up the early sun.
Simon was out already in the fields and I was washing dishes. I turned when Andy came in because he'd come in fast and stopped abruptly. I looked at the way he was holding his hand and straightened up.
"My God, Mom," Andy said, "look at my finger!"
I looked. The nail had split, and tissue was coming through the hole that had initially been used to drain the supposed blood blister. The bright morning turned sickly, and the sun suddenly picked up every flaw in the kitchen. There wasn't any safety, not in my kitchen and not in my chest.
I was ten years old again, lost in a cornfield, the high corn all around, and the slightly swaying tops all alike against the bright sky. I'd push through a row to the next and find I hadn't moved at all. Everything was just the same: the sky above and the cornstalks standing like guards.
Of course, all I had to do was follow a row to its endùit had to endùbut my panic took over and I thrashed in circles without purpose. When my father found me, he told me that all I'd needed to do was follow a row.
When Andy came in that morning, my safe kitchen was suddenly endless, with no row to follow. So it all began. The mind shuts off and runs on the odds for a while. "Odds are it's nothing." You walk through the developing information as if you were following a fugitive trail through quicksand. You talk with friends and you watch for the healing, and you pray just to be normal. Nothing abnormal can happen to you.
When it's over, all you do is remember. I remember his enthusiasms spilling in all directions. I remember his voice, the precise intonations. I remember how he'd say "remembery"ùremember and memory rolled together for a five-year-old's convenience. I remember how his smile was the first thing you'd notice about him.
The lake is very blue, just as it was before, and I'm lying out of the wind to get dry. I'm here at the lake with Annie and Kathy, friends who helped through the long fight for Andy's life.
I imagine him, I can see him, a little boy coming out of the water and running toward me: dripping, golden brown and full of energy. I remember the day he came out of the water and stopped to bend and look at something on the granite. He was just five. When he reached down I shouted, "Don't touch it! What are you looking at?" I thought it might be a snake.
"Whisper grass!" he yelled, and I stood up and walked over, wondering what he meant. He was standing on the granite with his leg swinging over the tops, smiling, and looking down at dried stalks of mountain wheat bending in the breeze.
"Look Mom, whisper grass."
When I reached down, I could barely feel a whisper of stalks brushing at my hand. If I hadn't been paying attention, I'd have missed it entirely. It had the delicacy of memory, of remembery.
The world is implacable, and sometimes hope just breaks against it like a confused bird against a window. When that happens, there are two ways to go. One way is to withdraw into rage and resentment. The other way is to draw together in love for each other and everyone who suffers. If you continue to read, you'll probably decide for yourself which is best.
But for me, right now, the lake is very blue and the clouds white and I'm standing by myself, looking down at the whisper grass and crying.
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Book Description HCI, 2001. Condition: New. New. Seller Inventory # Q-1558749063