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The Value of Chasya's Life

May 9, 2009 | by

Pressured by doctors to stop her young daughter's life-support, a mother searches to understand the value of human life.

I've been asked to kill my child. They've tried to convince me, tried to help me see the light. And each time that I stand before them, struggling to make them understand the value of a human life as I see it, to understand that what makes a human being so precious to God is not only his capacity to do, but also to simply to be, to exist, I meet with a dead end.

We're not on the same page, those doctors and I. Theirs is a world of glitter where one is lauded for his accomplishments and booed for his failures, where the loss of independence is tantamount to death and where one's perceived "quality" of life is the deciding factor in matters of life and death. In today's world the sanctity of life is irrelevant; if you can't produce, you don't deserve to live. And if you are in possession of your faculties, you are probably expected not to want to live.

Before the accident had happened, I remember listening to a tape by a renowned speaker as my husband and I were driving in the car. The tape was entitled "Quality of Life versus Sanctity of Life." It was fascinating. The lecturer spoke eloquently, explaining to his audience the value of a human life, even a life with nothing to contribute -- a life dependent on society and seemingly void of all meaning. I remember being moved almost to tears. The tape had a great impact on my husband and me. We identified with it, felt almost as if he was talking directly to us. And he was. Only we didn't know it yet.

The Accident

It was early in the evening on a hot summer's day when the call came in; the call that would change our lives and shatter our dreams forever.

It was a mistake. An accident. Our little daughter choked and had a cardiac arrest as a result. It took 25 minutes to start up her heart again, but by then it was too late. The horrific damage had been done.

We sat in the ICU, machines constantly beeping, lines tracing around and around on the monitors indicating stability, or God forbid the opposite. We sat in shock. Our daughter lay there unmoving, unseeing, in a world completely of her own. We spoke to her, we begged her to wake up, but she never moved.

I suppose you could always pray for a miracle, but you can't expect one.

They tried to be gentle when they broke the awful news. We had suspected it already; the diagnosis only confirmed our fears. The brain was nearly dead. She'd never wake up again unless we had a miracle. I suppose you could always pray for a miracle, but you can't expect one.

I remember sitting with my daughter one morning when a lovely young volunteer entered the room with her little girl. She had come on a "mission of mercy;" she was bringing food to those unfortunate souls such as I who stood vigil by their sick ones' bedside. Almost proudly she informed me that she too, knew all about what it meant to be in the hospital with a child, as her daughter (and here she indicated her beautiful, perfectly healthy looking, little girl) had been in the hospital as a baby with some sort of GI complication.

I stared incredulously. I tried to understand her and met a brick wall. Surely she could not think that I would be comforted knowing that her daughter had had surgery of the stomach and had, thank God, survived intact. Surely she understood what it meant to have a child who would never wake up again.

Yes, anytime a loved one requires hospitalization there is a great degree of stress, even sadness, especially if the hospitalization is for a serious reason, but couldn't she understand what it meant to have -- literally -- no hope? Apparently not. She continued to talk all about her daughter while I stood next to where mine lay, comatose, hanging on to life by a thread as her swollen brain threatened to herniate into itself at any given moment.

A New Reality

Later I understood. Some things are just too painful, too incomprehensible for the average human mind to handle. Unless they are forced to stare the harsh reality in the face, that is. The young woman would hopefully never understand. She couldn't know what the word "forever" meant. Only I could, because I had to. I felt invigorated suddenly; prepared to face life head on. I understood a reality that she never would, and I was facing it.

I struggled to comprehend the meaning of a life in a persistent vegetative state.

So I thought. I struggled to comprehend the meaning of a life in a persistent vegetative state, a life that would know neither joy nor sadness, neither comfort nor pain; a life of existence in its most primitive form. It was hard work coming to terms with it. Even within our own framework of Judaism, we are always raised to try to do -- to accomplish -- as much as we can while still on this earth. We are always taught that "the day is short and there is much work to be done" (Ethics of Our Fathers 2:20). So we must gather as large a pile of good deeds as possible before we are called upon to present ourselves before the Heavenly Throne. What then could be the purpose of a life where there is no collection of good deeds, no chance for the soul to move itself, even in some minute way, closer to God?

I started to work on understanding the general purpose of a human being on this earth. I drew on things that I'd been taught, and of course, on those life-giving words heard a while back about the sanctity of life. I realized that every person has a specific job that he is put on this earth to accomplish. For most of us, it involves doing all sorts of good deeds, making our mark on this world in some fashion. But for others the job is unknown. God created every human being b'tzelem elokim, in the image of God, so by their sheer existence they are fulfilling a heavenly mission.

Human life has inherent value. In fact, it is so valuable that one may not touch a person about to die, even to hold his hand or close his eyes, for he may bring on death a moment earlier. Maimonides explains that a person about to die is like a flickering candle; if you touch it, you may extinguish it (Laws of Mourning). And the Talmud says that if you bring on death even one moment earlier it is considered as if you have murdered (Shabbos 151:2). Obviously, every second of life is precious to God, even those from the life of a person about to die anyway. This comforted me.

When they stood there again the next day, that pack of doctors, attempting to convince me with gentle persuasion, coercion, and even thinly disguised threats, I was ready. "You know, if you take her off the life support, she will die," the neurologist helpfully pointed out to me.

"Yes, I know," I answered calmly. "But I don't intend to do that. I don't want to kill my child. I don't make these kinds of decisions. God will decide when it's time for her to go."

"But she's in pain. How can you, in good conscience, keep a child who's in pain alive?"

"I thought you said she cannot feel anything. Her brain cannot process the fact that she may be in pain. I thought you said her brain can't process anything."

The neurologist looked nonplussed for a moment. But she quickly regained her composure and answered, "Oh, but the absence of any joy is pain. Her life has no meaning. It is not a life worth living."

"I'm sorry to disagree with you, Doctor," I replied. "But you see, as religious Jews, we believe in the inherent value of human life, even a life that has no 'quality' to it. So we won't be stopping the life support."

Later when I had time to think more, I began to realize that even a person in a vegetative state could bring about so much goodness in the world just simply by existing. I thought of my daughter. How so many volunteers did such kindness by visiting her, by bringing food to the hospital, by giving rides when we were too tired to drive, by praying on her behalf...she'd probably brought about more good deeds in her few short years on this earth than I'd managed to gather in ten of them!

We won't be stopping life support any time soon, Doctor. And when the time comes for our daughter to rejoin her creator near the Heavenly Throne, we'll be comforted to know that she's fulfilled her job on this earth in the best possible way. You can't make us take that away from her.

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