Initiation

This project is a conversation with my daughter Sofia, who has Down syndrome. With her help, we reconstruct her arrival in my life, exchanging our roles in order to relive this initiatory journey full of emotions and rich in twists and turns.

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. There would be no questions.

Today my daughter 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. And when I tell her her story, I can't stop myself from thinking about kids with Down syndrome who were left by afraid young parents or will not be born due to neonatal medical progress. Indeed, screening policies have a major effect on this part of population. 96% of babies diagnosed with Down syndrome in France are aborted before birth.

We are often told that we have a special connection, me and my daughter. Indeed, we are ready to do a lot for each other, but Sofia will do the impossible for me. When West syndrome burst into our lives, in addition to everything else, I was ready to give up my life just to save her's. Our parental love helped keep her afloat, but she went through most of this journey thanks to her own inner strength. Sofia is a living example for me of how to achieve goals in life with kindness and sincerity. However, many families living with children with Down syndrome note their high empathy, incredible kindness and high emotional intelligence.

INITIATION project aims to help young parents who feel the earth slipping from under their feet because their baby has Trisomy 21. In this project Sofia and I exchanged our roles to talk about our personnal experience. I hope that our atypical example will help someone not to lose hope. I remember how difficult it was, and how I wanted to find such words of support in moments when the way out seemed hopelessly lost. With Sofia's help, we reconstructed her birth, as well as the first year of her life, giving you a key for understanding of our invisible connection. In order to better feel each other's emotions we exchanged roles. I honestly told Sofia 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, staging scenes as I remember them.

I also hope that my project will help viewers rethink their beliefs about people with Down syndrome and their families. Before Sofia was born, I had no idea about this parallel world, the topic of disability was so taboo. I didn’t know what to feel towards people with mental disabilities, or how to behave with their relatives. Now I am sure that people with special needs should be equal members of society, their unexplored potential is surprising and we have a lot to learn from them.