Ecliptic is a term borrowed from astronomy. This imaginary trajectory describes the Sun's path around the Earth over the course of a year. This is a point of view we easily accept beacause we see the Sun rise, move and sat. But in fact, the Sun is a stationary celestial body and the journey is made by the Earth, revolving around it.
In the same way, at first glance, this project is about Sofia, my daughter with Down synrome and her journey through the first year of life. But in reality, it is first and foremost my personal trip as a mother of a child with special needs.
When Sofia was born, I was 24 and I knew nothing about Down syndrome. Experienced obstetricians saw her diagnosis immediately at birth, and a few days later it was confirmed by a blood test. Nobody could tell me how to live with that unexpected event but they said I could go away and leave her behind in the maternity ward. There would be no questions.
Today Sofia is a beautiful young woman yet her disability will always be a part of our lives. She is now old enough to ask me what her birth was like. This project is our conversation in which I try to answer her question. With Sofia's help, we reconstructed her arrival in my life. In order to better feel each other's emotions we exchanged our roles. I honestly told her how I experienced the acceptance of her Down syndrome, and later her concomitant diseases, and she masterfully played out the situation for my camera. At the same time, I played her role, trying on her skin.
In my project I also used Sofia’s snapshots to enrich our dialogue and let you hear her own voice. They are her perfect reflection: offbeat, simple and full of life. Her inner strength and love of life helped us to overcome all the trials we faced. Sofia remembers nothing from the first year of her life, but sometimes, quite unexpectedly, she says to me: « Mum, you are the best, you saved my life». And I correct her: «No, dear, I just gave it to you. It was you who saved us both».
Ecliptic aims to help parents who feel the ground slipping away from under their feet because their baby has Down's syndrome. I believe that sharing our experience can ease their pain and reduce their fear of the unknown. It is also my way of paying tribute to Sofia. I wanted to give her the space to express herself and to show others her great empathy, her incredible kindness and her unfailing vitality. Our meeting transformed me, strengthened me and taught me to push back the limits of the system. I am sure we all should rethink our beliefs about people with Down syndrome and make our society more inclusive.