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This is our child?This is Your Patient By Peter Cumming (As seen in The Candelighters Childhood Cancer Foundation Newsletter) |
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This is our child. This is your patient. This is our life. This is your work. This is the creation of our love. This is a problem for you to solve. This is our only Paul. This is one of your many patients. As long as our child is here, this is our home. This is your place of work. If we had our way, our child would be home with us—with his family, where he belongs. If you had your way, he would, too. But he is not home where he belongs. He is here in a hospital. And here, we share responsibility for his well-being. You take care of this child. But, we love this child. You administer his life here. But we conceived and gave him life, nursed him in our hopes and dreams and bodies, long before he came to this place. You use your expertise to try to solve his problems. We use everything we can to give him our love—thought, worry, prayer, and yes, knowledge. If you could solve his medical problems, you would. If we could will life into his tiny body, exchange our lives for his, release him from this suffering, go back before the nightmare began, we would do it all—this very instant. What we want is what any parent wants. We want our baby. We want him well. We want him with us. We want to be with him. With him all the time—not just when everything’s okay. We want to be with him in his waking and in his joy, when he eats, for the endless hours rocking as he sleeps, we want to be with him when he suffers, we want to be with him when he dies. What we need is to have all our power and all your power working together to give this child the very best we all can give. We need you. We respect you. We appreciate you. We are so incredibly vulnerable and we depend on you. But that does not mean that we accept you as infallible. Nor does this mean we give up our responsibility for this child to you. We have responsibility for this child’s life and death—a heavy burden and great responsibility. But we have total responsibility for this child…for his conception, for nine month’s nurture, for all his living and breathing and dying, for his single existence in the history of the universe. We cannot hand over that responsibility when we come to you. We cannot hang it up, like a soiled hospital gown, when we leave. We carry it with us forever. We’d like it if you were Superman, but we don’t expect it. We, too, know what it’s like to be overworked, to be understaffed, to be working with people, to be trying our best and still losing. What we need from you –what we need with a deep and desperate need—is your compassion, your knowledge, your respect. We need to know everything we can about our child, and we need your help to know it. We need to ask you questions and we need you to consider those questions and answer them ?not just put us off. Condescension rings hollow when we’re talking about the life of our child. We are not afraid to make fools of ourselves by asking questions, we will not avoid asking questions just to keep out from underfoot ?we have too much at stake to even consider such things. We are not in your way; you are in our service. We need to know what you know ?completely! We need to know what you think you know. We need to know the possibilities. Secrets and surprises are a waste of our time and a betrayal of our child’s life. We are not stupid. Neither are we medical experts. If we could research for seven years to fix our child, we would to it. But right now, you know more than we do ?we need you to share your knowledge, not as a God from above, but as one human being to another. Perhaps you, too, need to know. There are many experts among you, experts in narrow specialties, all of you busy; the communication among you and the coordination of your treatment is not flawless. No one of you knows all the parts of our child. No one of you know him from the start to now. We, more than anybody else, do. Never forget; we are experts, too. We are parents. Our expertise is love, the intimate knowledge of this our creation. All we can do, all we must do, is to be with our child, to give him the best part of our love. Your patient, one of many, is dying now. But our child, our one and only dear sweet Paul, is dying. And with him, we are dying too. In our living and our dying, our family (the mother, the father, the living three-year-old, the infant who is leaving us now) needs to be together, and needs to be alone. All we ask ?as an undeniable human need ?is total access to and responsibility for our child. When you look at our child, think of your children. When you look at our family, think of those you love. During the short life of this, our son, our family was alone together only twice ?once when he lived and once when he died. We spent part of the last day of his life separated from him in inhumane rules, waiting in the coldest, loneliest place in the world ?a hospital hallway just outside the place our boy would die. How much more loving and caring it was when you, our baby’s doctor, came ?even though you didn’t have to ?to be with us, to leave us alone ?to be “straight? with us when anything less would have been unbearable. This is our son, who is dying. You have done everything you could for our son, and so have we; the time for doing is now past. Time now for you to go home to yours. Time now for us to bundle our two boys up for bed. To rock the living boy to sleep, to rock the dying boy to a gentle death. Time for the four of us to hold each other tight, alone, together, one in love and pain. (Peter Cumming’s son Paul, spent the five and one-half months of his life in a children’s hospital, with a rare, undiagnosed neuron-muscular disorder.)
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