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Personal Experience

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Angels that speak with eyes

Noemi and Alessia
Language: English
Country: Italy
Typology: patients and relatives
After writing the first word for twenty times, anyway I will try to describe my life, that is to say, my first forty years. I was born in Turin on June 26, 1971 and I spent my childhood very calmly. I was very shy and reserved, but I felt such a strong sense of loneliness that, at the age of six years, I began to insistently ask my parents to give birth to a little sister for me. I must say that, until then, I had had my imaginary friend "Civan", who used to play all kinds of game with me, but, as if by magic, my little sister "Ilaria" was born, and "Civan" disappeared. Therefore, I stopped feeling lonely and we spent a beautiful childhood together. I spent my adolescence surrounded by many friends and, at the age of seventeen years, I first met the person who is currently my husband. I lost sight of him for eight years, and then I married him on June 2, 2004. It was a beautiful wedding: we were radiant and full of good intentions for our life together. When we got back from our honeymoon in Spain, I realized I was pregnant. How much amazement and happiness! I was thirty-two years old and I had not imagined that what every woman waits for with so much joy will be for me the end of my life as a "normal" human being. Yes, because, after the first ultrasound, I realized I was expecting two twins. I had a bad feeling, a feeling mixed with terror, fear of not being up to the task of mother of two children, but, at the eighth month of pregnancy, my water broke and I gave birth to my two little girls, Noemi and Alessia, via caesarean section. When I woke up, at my side I saw Noemi, because Alessia remained four days in an incubator. The first time I saw my girls, what I thought was "how small and plain they are!", because, since they also suffered from jaundice, their skin was very dark and, therefore, they needed to stay under the light of lamps for a few days. But the day that would change forever mine and my husband’s life finally arrived. The paediatrician, together with my gynaecologist, both heads of department at the X Hospital, sent for us two days after Noemi and Alessia’s birth. In the room there was a dead silence, I realized that the paediatrician was trying, in all the ways, to find the right words to say to two poor parents that they did not know how it could have happened, but that their poor angels were born with a cranial circumference below the normal percentile and that their future would be uncertain, since they could not have a crystal ball to predict the damage to the brain and to the motor system the girls would suffer from. Our life ended in that moment, and from that day on the lump in our throat has no longer gone away. My gynaecologist listened to all this, always keeping his head low and never having the guts to look at me in the eyes. I have never managed to ask all the questions that would require precise answers about how negligent certain doctors are, despite they are paid handsomely after each check-up in normal private visits. With our eyes filled with tears, we got out of that room and I do not know how long I cried thinking about our future. The difficulties experienced during the following years have been great, starting from the fact that they are not at all autonomous and, therefore, many times we are carers rather than a mother and a father, we are half parents, with so many feelings of guilt, even though we know that it has been only a matter of destiny furiously hammering away at us twice. My girls are now all I have. Even the people who were close to us before, have gradually left us alone, because of the many difficulties that our girls have in socializing. As a result, that sense of loneliness that tormented me for a short time in my childhood, has returned stronger and more painful. I have never believed in those parents, with whom I happen to speak, with "special" children, who say they are satisfied with the steps forward, even if small and slow, made by their children, because every parent would like his/her children to be the best and most intelligent ones. In my opinion, in these situations you can only resign yourself to the life which is waiting for you, with the awareness that you will no longer have a normal life, without losing your dignity. Now, my girls are about to start elementary school: it is a step that frightens me, but it is important that everything should go on smoothly for them. My girls use their eyes to say what they do not say using words, and this is the special channel we have to communicate and our secret language that nobody knows and will never be able to understand. Even if it is so distressing, I hope that my story can help many parents to understand that we must live day after day without making too many plans for the future, and who knows that, after so much suffering, one day a better period will come.

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