Lifelong Learning Programme

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Training > Experiences

Personal Experience

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Language: English
Country: Italy
Typology: patients and relatives
Rossella comes to life a night towards the end of October. She is a beautiful girl of kg 2.700, with intense blue eyes, like the colour of the sea. It was a moment of immense joy and nothing made us think that in just a few days our sad story would start. The morning following the birth of my little girl, I asked the nurses why they had still not brought me the girl so that I could feed her. Their answer was: “she is sick because we had to make an inhalation”. However, according to doctors and nurses, everything went well, the little girl was sound. When time for feeding came, she had difficulties in sucking, and if I asked explanations, the answer was always the same: everything was ok, my little girl was just lazy. We could come back home even if we were all well aware that my child did not eat enough, she sucked twice, three times and then stopped, and I did not like this thing. Two days after being discharged, we submitted her to a routine examination. The little girl had already lost a lot of weight, but, according to them, her physiological loss was normal! We came back home, but I was not convinced, so I called the paediatrician who came and visited the child, then we decided to give her milk powder in addition to my milk. After three days, things did not change, so I took Rossella to the paediatrician, who visited her again with accuracy and immediately hospitalized her. Just after five days of life, our story of trial and tribulation began! Once arrived in hospital, Rossella was really in a tragic situation. She might not make it, because in just five days, she had lost more than half her weight, so I already faced the possibility of losing her. It was so painful to see her with the nasogastric tube on a drip! She spent the night in an incubator. It was the longest night of my life, because I did not know whether she would survive. Fortunately, my little girl survived, because she had to stay with her mom. We spent a month in hospital, she was always fed through the nasogastric tube, but doctors’ care and her family’s love allowed Rossella to return to flourish. We never knew what she suffered from exactly, because for nine and a half years no one has ever been able to make a diagnosis, but only to make hypothesis about any rare disease. The results of Rossella’s examinations were always within the standard values. Despite being hospitalized various times, in the most famous and important centres, where Rossella has experienced every sort of exam, no one ever found out what my little girl really suffered from. However, Rossella communicated, in spite of the terrible evil that was in her, in spite of those people for whom Rossella was a lost cause. Rossella and I were one single person, one single soul, because we immediately started living closely together. Where Rossella was, there was her mother too! Despite her limits, Rossella was a determined little girl, who understood everything, and who made herself understood very well. She talked through her eyes!!! To my amazement, she came to life amazing me, my little princess. But, throughout this ugly affair, in misfortune, my tiny little girl was lucky to be always next to people who surrounded her with attention and love. She was lucky to be followed by an irreproachable person, her paediatrician, who always cared for her with professionalism and affection. It was impossible not to love her. After several events, in 2007, we started cycles of physiotherapy and speech therapy. Initially, therapists were a bit sceptical, therefore they did not expect great reactions from her. I was sure that reactions and improvements would gradually come. I have always believed in my daughter and in her capacity without making false illusions. Rossella was proactive, attentive, interested in the world that surrounded her and curious, because I have always tried to prompt her, with whatever might attract her attention. Anyway, shortly after that, with love, patience and determination, carrying out a team work (qualified therapists and her mom always in the forefront!!!), to everybody’s great satisfaction, reactions and improvements began to be evident. Overall, Rossella’s rehabilitation work has been gradual, giving excellent results. These results were recognized by doctors specialized in the field, after the usual routine checks. We obtained the biggest result when, towards the half of December, 2008, a new speech therapist, Alessandra, was given the task of taking care of Rossella. Alessandra was the only therapist able to accomplish the difficult task of managing to give Rossella her baby food. The meal-time was reserved only and exclusively to the mother. In nine and a half years nobody had never made it! Children, like my little girl, are very, very special. It is true, that they need continuous assistance, care and love. But their smile fills your heart with joy. This way they thank you for the love that you have given them. When a child comes to life, there are no schools that can teach you what behaviour to adopt or what the right thing to do is. Only the instinct and love of a mother can make that happen. To give birth to a child is a tiring and infinite uphill road… an immense fatigue, that gives meaning to your day and fills your life. My little girl has really filled my life! My days no longer have any meaning without her. My Princess now is no more among us. Now she is a daughter of light, an angel who follows me from paradise. She has left a great feeling of emptiness and an unbearable sorrow. I miss her, I miss everything about Rossella. I miss our daily life. Rossella was a sunny and cheerful little girl. I always spoke to her, and, in her own way, she answered me. When I sang, she followed me with vocalizations that had the purpose of the song. I miss her hugging me, her little head resting on my shoulder, her expressions, her smiles that opened my heart. I am comforted by the thought that I have done everything for her, what was possible and what was not, and that I have given her a lot of love.

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