Ecliptic

When Sofia was born, I knew nothing about Down syndrome and was lost. Now, Sofia is old enough to ask about her birth, and together we reconstructed her 1st year. We swapped roles, allowing her to express her own view of the world through her photos.

The term 'Ecliptic' is borrowed from astronomy and describes the imaginary path that the Sun takes around the Earth over the course of a year. This concept is easily accepted because we observe the Sun rising, moving and setting. However, the truth is that the Sun is a stationary celestial body and it is the Earth that revolves around it. Similarly, at first glance, this project appears to focus on my daughter Sofia, who has Down's syndrome, and her journey through her first year of life. In reality, it primarily documents my personal journey as a mother of a child with special needs.

When Sofia was born, I was just 24 and knew little about Down's syndrome. Experienced obstetricians diagnosed her immediately after birth, but nobody prepared me for how to navigate this unexpected reality. I was given the option of leaving her at the maternity hospital without any questions being asked, and the only advice I received was to buy a small stool to help her in the future. Facing her illnesses, including West syndrome, I held on to that stool for support.

As the years passed, I learned to embrace the complexities of motherhood. Now that Sofia is old enough to ask about her birth, we have worked together to piece together her first year. To better understand each other’s emotions, we decided to swap roles. I told Sofia what it was like for me to accept her Down's syndrome and health issues, and she acted out my experiences in front of my camera. I took on her role, directing the scenes as I remembered them. Sofia’s drawings and snapshots — simple, quirky and full of life — add depth to our narrative, enabling her to express her unique vision of the world.

Ecliptic advocates for the inclusion of people with Down's syndrome in society. Often undervalued and marginalised, they have immense potential and can teach us a great deal. It is crucial to give them that opportunity. Our story is an act of resistance and a powerful tool for change. Capturing my daughter through photography affirms her existence; it’s a declaration that she is seen and that she sees the world around her. Our perspective is shaped by love and shared experiences. Through this journey, we celebrate not only Sofia’s life but also the strength and beauty of all individuals navigating their unique paths.