Ophir: A Mother's Story

Fiona Yaron-Field (UK)

Ophir was born on a very cold and snowy night. She weighed a good size but had some difficulties breathing. As she lay in the incubator I watched the snow falling outside the hospital window. Images of middle aged woman holding their ageing mother's hand in some supermarket flashed up. I felt I'd lost the ground under my feet and was floating into an unknown space.

The labour had been long and even before diagnosis I had felt very disconnected to myself and in a state of shock. I didn't recognize this baby in my arms. She didn't look like us, so fair and her features seemed to belong to another family. She was not the baby I had imagined inside me, the one I had been talking to the past nine months. I grieved for my fantasy child while I tried to feed this real plump infant in my arms. Even though she felt so alien, somehow I knew it was still my job to take care of her. My body seemed to spontaneously understand how to touch and hold her and I hoped the rest of me would catch up.

Ophir was a very sweet and patient baby. She seemed to know. She just looked me in the eye and smiled. By caring for her and really getting to know her I began to fall in love. I fell in love by living in the moment and not imaging a future or a fantasy of the past. I fell in love by truly seeing her, a gorgeous infant not blinded by a 'mask' of Down's Syndrome.

The first year was fuelled by fear. I was very manic, constantly at an appointment, encouraged by both the professionals and their literature which supports the view that early intervention is crucial to development. I imagined if I worked hard enough I could change and shape Ophir. And that constant notion of 'developing potential' led me to physiotherapists, developmental checks, a portage specialist, therapeutic playgroups, occupational therapists, speech therapists, homeopaths, cranial osteopaths, baby swimming, baby massage, baby singing, playgrounds and people I don't remember. She was never left to discover the world by herself. She was woken from naps to attend groups. I regret this. I was frightened and lacked trust in her natural ability and I believed I had control.

Ophir was a naturally bright, strong and healthy baby. Although development was slow she always got there. She learnt to sit, to crawl and then to walk. Every milestone was so significant and now I don't even remember when they happened.

We were always well supported by our family and friends. We joined the Down's Syndrome Association. From a very young age we met other families with children with Down's Syndrome. We formed an early intervention group based on the Portsmouth Down's Syndrome Trust's methods. Not only did we all share our experiences, offering support and advice, but we all became very good friends and still are.

At three we noticed Ophir's head tilting. My doctor said there was nothing to worry about! Ophir's paediatrician listened to our concerns and referred us to the Great Ormond Street Hospital for Children. They came back with a diagnosis of Atlantoaxial Instability. Within days Ophir was booked in to be operated on and fitted for Halo Traction.

For eight months Ophir lived with a halo. She underwent two eight hour operations before the graft in her neck was successful. Ophir adapted amazingly well to her condition. She still skipped and hopped about, climbed trees and played in the playground. We got quite a few 'looks' but Ophir just thought she was very cool with a halo full of stickers.

Ophir is different from the other children in school and the other children are different from each other. She has found friends of her own and although it is not as easy for her to keep up with the new fads and the sophisticated nuances of social communication she manages well. She has friends with Down's Syndrome and friends without. We have tried to keep her world integrated and balanced.

Ophir is a whole person with a complex range of emotions just like us. She can be sociable and loving and she is just as likely to be rude, moody, bored, irate, angry and jealous. She loves being physical, climbing, skipping and hanging upside down on a bar. She is more interested in people than 'things'. She loves her dance group and doesn't like the cinema. Would prefer crisps to chocolate. Loves a party, especially food (just like her mother). She reads, writes and loves drawing. Loves her sister Noa and hates her. She's learnt to lie, tell jokes and now she's learning the piano. She listens to Van Morrison, Kylie Minogue and nursery rhymes.

Teaching her how to adapt to the world is on going. Life gets more complex and it all needs explaining. But now I have less fear and more trust. I am trying to find that balance to help her develop herself but not lose herself. Not an easy job for any parent!