Imagine a doctor standing before you, about to say: "Your daughter is blind, deaf, she will not walk." You are there, filled with anguish, waiting for the verdict—and he knows it. He is a physician, but he doesn't know where to begin telling you the truth. He becomes like an elephant in a china shop. He hides behind medical knowledge that even he seems to doubt. But he cannot escape it. Some emerge from this moment without causing too much damage. They manage to help you understand that all is not lost; they let a thin ray of hope shine through. Others are hopelessly clumsy. Some put on a hard or indifferent mask. Some grow impatient.
There is no doubt they suffer from not finding the right words, from being unable to be as they wish. I have met many since Anna was born. One of them said to me, precisely when I needed some comfort: "Put her in an institution as soon as possible, and have another child!" A nurse at the clinic where Anna was born nearly grabbed the phone to hit me with it because she reproached me for rejecting the baby. Words that perhaps I too would have said unwillingly, had I been in their place.
Learning the Truth
Anna remained in the hospital for seven weeks. During all that time, I could not meet the doctor in charge of the ward. From the nurses and assistants, I received contradictory information in constant waves. When Anna was three months old, I finally got an appointment with an ophthalmologist. I can still see it: him sitting in his patient chair, me leaning against his desk. He simply asked: "Do you know what braille is?" That was how I learned that Anna was virtually blind. When I had to tell her father, her grandparents, the whole family, and I watched them sink into grief one by one, I thought: "How hard it is to announce these things." Almost at the same time, I soon began to feel anxious noticing that Anna did not react to familiar sounds. Tests revealed that she also suffered from severe deafness. With a hearing aid, she began speech therapy exercises. There was no time to waste.
Being Helped and Informed
A complete evaluation required many consultations, and we passed through alternating moments of anguish and hope. Beyond that, we had to decide as parents whether to take responsibility for correcting other orthopedic defects—in her hip and feet. It added ten years of life to our burden. At home, we had to get to know this small being before us. From birth, Anna sometimes choked because when she breathed, she would swallow her tongue due to a cleft palate. It would have been enough to place her in her crib on her belly to prevent this, but we never thought of it. For this reason alone, she was resuscitated several times, with all the consequences that followed—simply because we did not know this simple gesture. The same was true with the bottle. I tried to give it to her without success. I groped for hours trying to get her to suck, not realizing that at the hospital they had fed her a different way.
Doctors with Open Hearts
Fortunately, now some hospitals have understood how important it is to systematically inform parents about the care required. But there is still much to do. Without question, on many occasions we had the impression of meeting doctors who seemed too much like "robots."
We need the doctor to listen to us, to look at us, to recognize us in our suffering, to give us the explanations he can give, and to tell us of his own helplessness—above all, to offer hope while setting realistic limits.
We need the doctor to listen to us, to look at us, to recognize us in our suffering, to give us the explanations he can give, and to tell us of his own helplessness—above all, to offer hope while setting realistic limits.
Fortunately, there are also "good" doctors whom we remember with deep gratitude. Dr. R. never said to me: "Undress her." He would take Anna himself and remove her clothes slowly, one piece at a time. The child was sensitive to his touch. He noticed that Anna laughed when tickled, so he made her laugh. For me, that laughter had special meaning. The kindness of this doctor does me great good. In the attention he gives Anna and everything about her—her feeding, her progress—you feel his genuine interest: he talks to her, he looks at her, he answers her smile. Parents are moved by a glance, by a greeting, by a single word. Doctors are not always obliged to speak: a closed face or a face lit by a spark of hope is often more eloquent than words. We wait for the doctor to listen to us, to look at us, to recognize us in our suffering, to give us the explanations he can give, and to tell us of his own limits. To know, above all, how to offer hope while acknowledging what cannot be changed. When specific support organizations exist, they are of tremendous help to parents. You find understanding there, precious advice, useful contacts, guidance toward specialists or educators who can offer an appropriate plan of education before it is too late. Only after traveling this whole road did we recover the hope that we could give Anna the chance to live with her own abilities and to use them. But it is rare that organizations exist for the various forms of multiple disabilities. For this reason, it seems to us very important that doctors fulfill the role of attentive counselors filled with kindness—that they be awakeners of patience, courage, and hope.
by M. D.
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