Lifelong Learning Programme

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Personal Experience

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A special girl

Language: English
Country: Italy
Typology: patients and relatives
Taking care of a sick or disabled family member is a rather complicated matter. Providing assistance for a child with more or less serious disability is a profound experience, a commitment that is totalizing, stressful and costly, both physically and psychologically. Disability is a condition of life that upsets the balance of a family that has to face the complex reality represented by the person with a disability. After a pregnancy without any problem, the moment of her birth finally comes! Rossella comes to life a night towards the end of October. She is a beautiful girl with a 9/9 APGAR score. It is a moment of immense joy and nothing makes us think that in just a few days our sad story will start. The odyssey begins after only five days. I realize my little girl does not eat enough, she is listless. I took Rossella to the paediatrician, who visited her again with accuracy and immediately hospitalized her. Once arrived in hospital, Rossella was really in a tragic situation because, in just five days, she had lost more than half her weight: I already faced the possibility of losing her. Thanks to the timely intervention of doctors with extensive clinical examinations and the insertion of a nasogastric tube, making it possible to feed her, fortunately, Rossella survived! The nasogastric tube was part of my daughter’s life for eighteen months. After that, since there was no problem with swallowing, we moved on to oral feeding. From that moment on, the moment of the meal was reserved exclusively to her mother, because my little girl did not accept anybody else. The first years were devastating, due to the numerous checks and clinical examinations made in the most famous and important centres, where Rossella experienced every sort of examination, whose results were perfect, with no value being out of standard. We have never known 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. 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, because we immediately started living closely together, in a mutual exchange of giving and receiving feelings, emotions, moods. My daughter did not speak with her mouth, she spoke using her eyes. After several events, we started cycles of physiotherapy and speech therapy. Anyway, shortly after that, carrying out a teamwork (qualified therapists and her mum always in the forefront), to everybody’s great satisfaction, reactions to therapies and improvements began to be evident. To give birth to a child is a tiring and infinite uphill road. An immense fatigue, which gives meaning to your day and fills your life. My little girl has really filled my life! Unfortunately, Rossella passed away almost two years ago, leaving a great feeling of emptiness and an unbearable sorrow. 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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