Family photography: When your normal isn’t everybody else’s normal… but actually, it is.
I have so so so so been looking forward to sharing this family photoshoot with you. I visited Eva, her mum, her brother and sister and nan a few months back, way before Covid hit us, when life enabled us to be close and personal, when life enabled us to share our stories, and share a little portion of our souls, just that bit more easily. And when I left Eva’s mum and I closed her front-door behind me, I felt like I had spent a couple of hours where conversations had been as honest, as pure and as authentic as they have ever been. If I am honest, to have a connection with someone as pure as this in the space of 2 hours is what makes my job the most rewarding there is.
Eva has Batten’s disease. Batten’s is a rare, fatal disorder of the nervous system which gets worse over time and now 7 years on since her initial diagnosis, she has reached locked in syndrome where sensations are felt, but she is no longer able to interact the way she used to. And that’s all I am going to say about that. Because actually, what I want to focus on is Eva’s normal, her mum’s normal, her brother’s and sister’s normal.
Eva’s normal is having a bath, and getting sung to. Eva’s normal is having her hair done by her mum. Eva’s normal is having the TV on in the background with her little sister complaining she has a poorly tummy. Eva’s normal is communicating with her mum when she is happy or unhappy. Eva’s normal is having her brother do cartwheels one minute on the sofa, and coming to cuddle her the next.
But when you think about it… Eva’s normal sounds quite familiar, does it not? It sounds like our normal, like any teenager’s normal. And yet is isn’t. It isn’t in so many ways. The bravery and strength that Eva and her whole family show on a daily, hourly, minute-by-minute basis is something they don’t see themselves. Of course they don’t. Because this is THEIR normal.
Eva’s mum, Tamara, and I talked at length about what their normal meant to them, and also what it meant to me. Thank you Tamara for sharing these moments with me.
So here is Eva. Here is Eva, watching TV, having her hair done, getting wound up by her siblings and listening to music. This is Eva. A teenager.
