Sunday, December 05, 2010

Caring for Children

by Zinta Aistars

On a routine work day, I sit in my office in one of the many buildings of a large health care organization in Grand Rapids, Michigan, working at my desk. Now and then, I venture into one of the hospitals or research labs to interview health care personnel about their work and write an article about it for one of our many publications. I am a publications editor and writer here. Truly a great job. I have learned much over the three plus years I have worked here, met countless remarkable people doing remarkable things in health care, helping us all live longer lives in good health.

This past week or so, however, I have had an opportunity to leave my office and work directly in one of our hospitals--a new children's hospital that opened its doors on December 3, but will be filled with its first little patients on 1.11.11. There is a significance in that number. It is a hospital that puts children at number one ranking.

I have been working as a volunteer on various floors of the 14-story building, helping to guide tours of donors, visitors from neighboring hospitals, physicians and employees (we have nearly 17,000 people working in this organization), and also the community. It is great fun to see faces light up with wonder. The new children's hospital is really something to see.

Walking the halls, looking into the as yet empty patient rooms, operating rooms, emergency rooms ... I, too, feel great wonder, even as at moments my throat chokes up and my heart twists a bit. On one hand, I am awed by the level of both caring and technology that has gone into this building. Cutting edge, indeed. Miracles will be happening here, every day.

I am also awed at the details, the thought that has gone into choosing colors that soothe, creating play spaces that help heal the spirit, making room for family members to rest, stay overnight, cook meals, do laundry, say a prayer, gather around their little patient in warm support. Even the artwork is thoughtful: all done by children, as if in greeting and comfort to peers who will enter here. But when I stand in the doorway of a space called The Resuscitation Room, I feel a little faint. I can imagine what scenes will yet unfold here. What pain and fear families will experience here ... and I can only hope most of these scenes will have happy endings, even as I know not all of them will.

How far we have come from the days of my own childhood. When I was 8 years old, I had to stay in a hospital for a month. I underwent major surgery, and my memories, still vivid, still edged with the sense of a nightmare from which I could not wake, occasionally still haunt me. As my physical body underwent tests of endurance, what the medical field didn't seem to understand back then, was that my spirit, too, my emotional self, underwent tests of endurance, as well.

It is just good common sense that health care involves not only the human body, but the mind and the spirit, too. We are all of these things, and separating them, not only in health care, but in ALL aspects of life, only leads to disaster. My body, these physical scars, has long ago healed. I realized, as my gut tenses and my heart skips a beat, looking into these patient rooms today, that my spirit hasn't.

Memories still lurk there. Ghosts still haunt. Decisions and choices I make today, so many decades later, in different areas of my life, thread back to my experiences as an 8-year-old girl.

I pause in the door of a patient room in this new building and stare: 330 square feet, an entire wall of glass looking out onto daylight and the city around us. There are 212 of these private rooms for ill children in this place. Every possible comfort in a less than ideal circumstance. Flat screen television, a desk, a large bathroom with shower and full-size tub, a sofa that folds out into a bed, and for the health care part of it, every imagineable accomodation. Every child treated as if he or she is the only ill child in the world ... and to someone, he or she is.

Back in my day, visiting hours were strictly enforced, and nothing could be more frightening to a child in physical agony and indescribable fear of the unknown in a stark white building than the sight of one's parents, backs receding down the long white hallway into the night, ushered out by hospital staff, leaving one entirely alone.

I remember that room. Large and white, walls lined liked a barracks with hospital beds. Children in each one, and oddly enough, none of them crying. Only an occasional suppressed whimper. I, too, was silent. When I spoke, it was only in whispers to the girl in the next bed. She was in a full body cast, suffering from some odd ailment or disease I could not fathom, that caused her bones to shatter like thin glass at every contact. She had been here already, numerous times, for one surgery after another, and she seemed to have adopted an attitude of acceptance ... accepting that life equated to suffering. Yet she was not bitter, nor did she seem afraid. Most of my body was wrapped in bandages, too, and she whispered back words of comfort, or welcome distraction. I grew to love her, my friend in shared experience of our silent nightmare, and I endured because she did.

On the day that my friend vanished, her bed empty and sheets impossibly white and clean and unwrinkled, no one bothered to explain to me what had happened to her. No one talked to children back then, it seemed to me. No one considered that we needed something more than meds and injections and pats on the head. No one mentioned that children can die, too.

In today's hospital, specialists and counselors and social workers buzz around families, talking, explaining, soothing frayed nerves, working through fears. Toys created especially for illustrating what will happen during medical procedures allow children to ask questions and "practice" through treatments soon to be received.

I knew she had died. But I took my cue from the adults around me, and I didn't say a word. I asked no questions. Nor did I say a word about the intern who took me into an examination room, unwrapped my bandages, gasped at the sight of what I later came to understand was a badly botched surgery.I didn't say a word. I no longer even whispered. I didn't greet the new patient in the bed beside me. I stared at the white tiled ceiling above me and stopped counting the days as they passed without marking. When my mother came to visit, I listened to the stories she read to me, or told to me, and made no comment. By the time I was 8 years old, I understood that life was a battle that I had to learn to wage alone.

Day after day, I was given injections. I had no idea what the injections contained, nor what they would do to me. I heard the nurse remark to my parents what a good girl I was, never complaining, never shedding a tear, always submitting to whatever poking or prodding was done to me. Until one day. One day, when another nurse came with the usual injection. After weeks of not making a sound, I started to scream. I thrashed and I screamed and I pushed her and her needles away. Even my mother could not calm me. I screamed until my throat was raw. I screamed until they held me down, people in blue scrubs standing all around my bed and holding me down, the needle pushed into my arm, until I fell into a drugged sleep.

Walking the hallways of the new children's hospital, I imagined those future little patients. Rooms that were not included in the tour had colored paper chain ribbons taped across them. The very first patient to use the new room would be allowed to cut the ribbon. It was almost like a party. It was almost like a celebration of the precious life of each and every child.

There are so many ways in which I think contemporary American society has neglected children. Values seem to have diminished with time, careers and the pursuit of materialism taking precedence over spending time together as families. A dinner table with family gathered around it seems to have become a thing of the past in many households. The holidays are heaped with toys under trees that no child really needs. What every child does need is our time... and not just quality time, but a great quantity of time, and yet that is what seems to have dropped away from our busy schedules.

We need to champion our children. We need to advocate for them, in sickness and in health. We need to stand by them, talk to them, hold their hands and give daily hugs, lots of them. We need to listen to our children. We need to have conversations with our children. We need to remember what it was like to be a child ourselves.

What a wonderful thing is this place, this new hospital in Grand Rapids. I hope we remember that these little patients deserve our very best, even as their healthier counterparts do.

I wish that little girl in the bed next to mine, her bones shattering like tinkling crystal inside her little body, could have experienced this place. Her name was Alison.

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