This photograph was taken last spring, in the midst of a virus. Alice is vulnerable to sickness, and when she is ill, she becomes very ill, very quickly. She has had pneumonia twice this year, which means the whole family is consumed for the duration with anxiety over her health. Life comes to a standstill during these periods. I can spend an entire week just sitting with her, tense with worry. The moment the illness breaks, life returns to the house.
She had been sleeping on the sofa. For a very brief moment, she sat upright and looked right through me. I remember the spring light and a strand of hair against her skin; I wanted to move it, like an irritation. I felt what it must be like to be Alice in that moment.
You get a sense in this picture, I think, of Alice’s ease in making meaningful contact with other people. It is uncomfortable for most of us to be seen or witnessed by others; we can be fearful of what we think others will see in us. Alice is oblivious to that. She is free of judgment. Sometimes, it can feel like she is all-seeing.
Alice is wilful and determined, like me. She thrives on physical intimacy and is not afraid of giving or receiving it. She demands connection with people. She’s often very capable of choosing someone to connect with deeply. She usually has a strong impact on them.
When I was pregnant with her, we got a call from the hospital informing us our baby had a one in 30 chance of having Down’s syndrome. The language of risk was used as a matter of course, the underlying assumption being that we would want to have further tests; that, inevitably, we would want to terminate our pregnancy. There was not a single positive conversation with doctors or staff at the hospital, no discussion about Down’s syndrome, of how things might work out or how we might prepare.
Once Alice was delivered, the mood worsened. She was talked of as a medical condition, a diagnosis, a statistical failure of medical practice. I’ve learned since that 92% of babies with Down’s syndrome are terminated at the pre-natal screening stage. Prior to the introduction of such screenings, many children like Alice were severely marginalised, and often institutionalised, with little or limited medical care.
I no longer see Down’s syndrome. I just see Alice. I still have to manage my expectations. Having a child like Alice means I can’t assert my authority as a parent. Alice is Alice. She will develop in her own time, and if anyone wants her to be anything other than who and how she is, they will achieve nothing at all. This can feel frustrating at times, but then parenting any child has its frustrations.
Photographing Alice has helped me shine a light on why I struggled to love her, all the fear and uncertainty I felt. She has guided me to what needed to be expressed. I always knew she loved me, it was never about that. It was about me needing to fall in love with her – and I did, unconditionally.
by Sian Davey (2015)