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Dancing Like There's No Tomorrow
By Nancy Hussey
AuthorHouseCopyright © 2010 Nancy E. Hussey
All right reserved.
Chapter OneThe Ocean
By Sara Hussey, age 11
The ocean waves come pounding down, The seagulls squawk all around.
In the distance ships come floating by, As the sun sets in the beautiful sky.
At night, in the distance, you can hear the waves, As you drift off to sleep in a wonderful daze.
Written: August 10, 1989 Lavallette, New Jersey
The sun was so blinding that I could barely see Sara's small frame as she stood at the edge of the ocean, where waves crashed with a smack, and chased her up the beach. She ran quickly, laughing as she escaped all but the little waves that encircled her ankles in lacey foam and then returned to the sea. I shaded my eyes with my hand and watched while she skipped and splashed around in the shallow water, waiting for the next wave. She turned her back on the water to smile at me. Her wet skin and hair glistened. Little sparkles danced over the water in the sun. She was a little sparkle dancing in the sun.
I was notthe only one keeping a close eye on Sara. Her older sister came to stand next to her. Amy was protective of her little sister and frequently gave Sara unsolicited advice on sensible behavior and safety. I gazed at their silhouettes as they stood together; Sara, at age eight was tiny and slender with long graceful arms and legs. Amy, at age eleven, was more solid and shapely.
The girls stood facing the ocean, fascinated by the hypnotic and endless rise and fall of the small mountains of clear water that crept closer and closer to where they were standing. In their innocence they did not know what monsters moved beneath the surface nearby, and the waves did not whisper their secrets about the dark deep beyond. There was no reason for us to tell them what dangers might be hidden from their gaze in that great body of water. They were safe and happy then.
As they turned to walk up the beach together, the beauty of their faces struck me. I saw the sweet purity of their smiles, and I felt the tug of love and pride. Sea breezes gently lifted wisps of their brown hair, so that it glinted amber in the sun; I watched as they ran up the beach with that vital energy of healthy children. These sunny young girls were so easy to love. And love them we did. It was so easy to hope and wish and fantasize the very best for their lives. Flawed adults cannot be perfect parents, and I wondered if our very best effort would fall short of the foundation they needed to find happiness in life.
They sat nearby while Amy helped Sara dig a moat in the sand so they could watch it fill up when the tide came in. They appeared to be doing this peacefully, but the ocean's roar was too loud for me to hear if Amy was calling Sara a dork yet. When Sara was four years old, she tripped on the boardwalk and split her lower lip open. Amy was so worried about Sara that she could barely sleep that night and she treated Sara with tenderness and concern until her lip healed. But, as they got older, Amy liked to make fun of Sara on a daily basis, as older siblings are known to do, and called her a dork frequently, no matter what Sara did. This would often cause sensitive little Sara to cry.
Amy liked to tickle Sara until she was limp with laughter and then she would poke her when Sara was too weak to fight back. Amy would call her a weakling or a wimp and do an imitation of Sara trying to defend herself. In addition Amy assumed a constant bossy role, until Sara came to me one day and complained that she was sick of having two mothers and one would be quite enough, thank you.
It seemed like yesterday that my brother and I happily ran up and down different New Jersey beaches with seaweed in our hair and half a pound of sand trapped in our bathing suits. Sara and Amy's father Eddie, spent all of his summers as a boy splashing around with his sisters on the shores of Lavallette, N.J. It was thrilling to think of recreating our fond seashore memories for our own children, and it was an unforeseen delight in our marriage, that we had the opportunity to do this. As soon as they could walk we were lifting them over the waves to hear their laughter and squeals of delight.
When Amy was about thirteen, she asked if she could go out into deeper water and ride over the waves with me. I was thrilled to have a child old enough to share this favorite past time so I said, "Yes!" But first I took care to show her how to avoid the dangers. If a powerful wave actually landed on top of her or dragged her up the beach over pebbles and shells, she really could have been injured.
We ventured in together when the sea was calm.
I watched her as the swell of rising green water glided towards us, and I said, "Just when the wave is a little foamy at the top and starting to curl over give a little push off of the sandy bottom and the wave will lift you up. "NOW! NOW!" We felt it roll under us and we slid down the other side. Up, over and down, again and again, rocking us in the sea's cradle of warm sparkling water. Amy yelled ,"It is like a roller coaster!" If a sneaky rouge wave was already about to crash on us before we were ready, I shouted, "Dive, dive through the bottom!" It was exhilarating! Under certain conditions the pull of the waves going back into the ocean exerted such a force (undertow) that it was dangerous for both adults and children to be in the water. When this happened, the lifeguards blew their whistles and motioned for everyone to get out of the water. The lifeguards watched carefully while the children played near the edge; they knew the ocean could reach out and grab a child in a second and claim him or her for its own.
Back home in the northern suburbs of New Jersey, tans were fading, and hot sun and sand soon became a memory. There was a tingling energy of change in the air when September turned into October and both girls began new schools and new grades. Gradually, I also noticed a change in Sara. She clung to me more, looked tired, and chose to stay at home instead of visiting her friends from the old neighborhood. I blamed the homework load in Middle School for her fatigue, but when I noticed her pallor, I became alarmed. I did not want to make the same mistake I did a few years ago when she had the same symptoms. On that occasion I had missed obvious symptoms of illness and I had been terribly harsh with her cranky behavior before I finally took her to the doctor. Her diagnosis was Mononucleosis then.
I kept her home the day after the blood test in case she did have Mono again (guilt). She came with me for a short shopping trip to buy some nutritious food and special treats for her. My treat was playing hooky with Sara.
Our pediatrician called our home and left several messages to call him back as soon as we got home.
We chatted and laughed while we shopped at a leisurely pace, buying fruit, vegetables rich in iron and a fat pumpkin for Halloween.
As time elapsed he left more messages, each one sounding more urgent than the last. Eventually, he called the police and reached Eddie at his office.
We decided to stop for some ice cream. She took her time deciding on a flavor and then we enjoyed licking every last drip.
The police and rescue squad began to search for us. Eddie called and left messages and then went out in his car to look for us.
With the packages in our arms, still talking, we opened the door, not knowing that when we walked into that kitchen all of our lives would change forever. There were at least fifteen messages blinking red on the machine from her doctor and her father. Something was terribly wrong. My heart started pounding as I listened to the doctor's voice on the phone. There was slight quiver in his voice when he explained that Sara's platelet and white blood count were so abnormal that if she fell or cut herself, she was in danger of bleeding to death. He had already called the Children's Hospital in a nearby city and they were expecting us as soon as we could get there. Shaking and shocked, I did my best to stay calm for Sara's sake while we waited for Eddie to return. When he arrived we drove immediately to the hospital. In hindsight I realize that it was a hidden blessing that there were no cell phones then; it had given Sara and me a few more moments of innocence and pleasure together that day.
As we found our way in that busy multi-ethnic inner city hospital setting, we were greeted by Dr. Fein, who introduced himself as the head of the children's hematology and oncology department. Dr. Fein, an intelligent looking elflike man was quick to tell us that the first order of business was to repeat the earlier blood test. We did not have long to wait for the results, which revealed a nearer to normal blood count reading, which we were told, might even be an indication of some sort of virus. What a relief it was to hear that she was not in danger of bleeding to death!
But we were not to go home yet. Dr. Fein said that Sara's two abnormal blood counts could be red flags for several diseases, which he named. None of them sounded good to me. The only way to rule them out was to do a bone marrow aspiration. In this procedure a long needle is inserted through to the center of the bone to extract a sample of the blood cells in the marrow (where blood cells are made). Reportedly this is a painful procedure. I cringed at the thought of seeing (or hearing) Sara suffer, so we talked them into postponing it for the next day. If she had been as ill as most children were by the time they made it to this hospital, leaving would not have been an option. Reassured that she could have a virus and that the original blood test was inaccurate, we went home.
Eddie, Sara and I returned the next day for the bone marrow aspiration. I heard no sounds of pain nor did she report any! We waited while one of the oncologists checked the cells under a microscope only a few rooms away, and then we all filed quietly into a small, bare-walled and windowless conference room. A few other staff members sat down with us and then Dr. Fein told us that Sara had childhood leukemia. Her father slammed his fist on the table and growled, "This isn't fair!" and began smoking again as soon as someone gave him a cigarette. My stomach lurched. No, they were wrong. I knew this would never happen to our beautiful, healthy little girl. It was a mistake.
I glanced at the serious faces around us, and tried to absorb the highlights of the information we were being told. She could die. There was a 60-80% chance she could live, with treatment. The next eight weeks would be a deluge of intravenous, oral, and spinal injections of chemotherapies, spinal taps, bone marrow aspirations, transfusions and blood tests. And it would all start NOW; this day. There would be no more going home to pretend that Sara only had a virus. She had leukemia. These strangers at the table who did not know or love Sara would become the guardians of her life.
Although it was hard to follow and absorb all of the information we were told, I did understand that for some mysterious reason, the white blood cells in Sara's marrow had suddenly started to multiply at a rapid rate. These white blood cells were not fully developed and served no useful purpose. They multiplied so rapidly that they began to crowd out all the healthy cells in her marrow. In days her blood would have been flooded with them; there would not have been enough red blood cells to carry nutrition or oxygen to her organs, or enough healthy white blood cells to fight off disease, or enough platelets to stop her from bleeding. Her early diagnosis prevented any of this from happening because most of the leukemia cells were confined to her marrow when we arrived. The early diagnosis also improved her chances of survival.
Questions exploded in my head but I did not voice them. "Would she be able to keep up with school? Would she be able to continue with her dancing lessons (which she loved) or her piano lessons (which she tolerated)? Would she ever be able to have a normal social life or make new friends at the Middle School? We asked her if she had any questions. She didn't. She didn't say much. Later on Sara wrote, "I cried and I didn't expect it at all; and I was scared, because I didn't know what would happen to me." None of us truly knew how fearful a declaration this was or that it was going to shake our souls and the soul of our safe world.
Dr. Melrose, a friendly looking young man, introduced himself and explained that he would be Sara's primary doctor; "Sara I will come to see you every day when you are in the hospital and you will be seeing me for weekly exams when you are in outpatient. If something comes up and I am not available, one of the other oncologists will see you, but when your parents call here they should ask for me." He smiled at her and wrote her first prescription for chemotherapy, which was then administered in a treatment room. Susan, a tiny, pretty, young woman with dark, doe eyes, spoke gently and reassuringly to our numb family, our numb Sara, as she inserted the needle into Sara's arm vein and I watched as the first dose of poison trickled into her beautiful, outwardly perfect eleven year-old body. No, No, God could not have meant this for our dancing, smiling, pixie Sara.
Our so precious, Sara. She was cheerful, energetic and a sometimes silly little pixie with extraordinarily clear hazel eyes and fine facial features. When she was much younger, she danced for her own delight to the piano music I loved. I would often sit down to watch her, because she interpreted the music so gracefully as though she had been studying dance all her short life. Her face was full of serenity and joy as she choreographed her little dances. These were moments of heaven in a busy day, and I wished that I could see her dance forever.
Sara was inherently kind and sensitive. Her second grade teacher told us that her face reflected such compassion when a sad part of a story was read aloud. She was to be our last child and I felt she was such a blessing; her calm, and agreeable personality was soothing in the midst of a sometimes tumultuous family life. I would often ask her, "What did I do to deserve such a wonderful girl?" Now I was asking myself, "What did I do wrong to stop deserving her?" Was God going to take her back? Why had God put our little girl on a path that had suddenly taken such a cruel turn?
Before we left the hospital that day to go home and get Sara's belongings and pick Amy up from school, we looked around the clinic and saw many children there; most were attached to I.V. poles, some were in wheelchairs, and some used a walker. A few children wore colorful caps to keep their bald heads warm, I thought, or perhaps to hide their baldness. They could not hide the white pasty skin that seemed almost translucent or the eyes that peered out of dark holes. How would I be able to bear to see Sara's body ravaged in this way? How would she? We could sometimes hear vomiting, and youngsters crying. Some of the older children had hair, and were now at the stage where they relaxed comfortably in the infusion room playing games. These pre-teens and teens looked healthy and were smiling. I wondered how many children made it that far.
Chapter TwoWhen I was Scared
When I was scared, God's Light shined bright,
When I was scared, God made no night.
When I was scared, God's hand was near.
To hold and guide me, Through my fear.
I don't remember the drive home or picking up Amy. My mind was not a blank either; it was flooded with confusion about how such a healthy vibrant child could be this ill. I thought it must have been my fault somehow; if only I had tried harder to get Sara to vomit up the pesticide pellet she ate on the lawn; if only I had not taken anti-inflammatory drugs early in pregnancy. Did something slip by me that I should have noticed? Amy told me that when my mother was "watching" them (from inside the house) while they were playing in the garage, Sara suddenly stuck the nozzle of an aerosol can in her mouth. No one knew if she pressed the button down; she insisted she didn't. (Continues...)
Excerpted from Dancing Like There's No Tomorrow by Nancy Hussey Copyright © 2010 by Nancy E. Hussey. Excerpted by permission.
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