‘FAMILIES COME IN ALL SHAPES’
Being single didn’t stop Genevieve Roberts from becoming a parent
filmed and used to teach students. The specialist overseeing my care, Derek Henderson, recorded my entire medical story in a book, which I later found out was studied by experts all over the world.
I left school without taking exams. I was offered the chance to go back, but I wanted to move on. I secured an apprenticeship with Ford and learned secretarial skills then joined a bank. It was far from the singing career I’d been too self-conscious to pursue, but at last I felt positive about the future.
STARTING A FAMILY
My ‘new’ face wasn’t perfect. My ears were still uneven and one side of my face remained larger than the other, but what I saw in the mirror was miraculous to me. I started to take pride in my appearance, having my hair cut in a fashionable long bob and experimenting with make-up. I finally found the confidence to be me instead of hiding away. I could join my friends on nights out, rather than hiding away hoping I wouldn’t be noticed.
I was 21 when I met my husband, Ian, in a nightclub. I thought he was so good looking and didn’t believe he could be interested in me. But he asked me out and, over time, it became clear he was just as keen as I was. I was self-conscious about the scars that ran from my groin to my back, where part of my hipbone had been taken to rebuild my face, but Ian made me feel beautiful and would tell me ‘I just love you for being you’. It was everything I had ever hoped for.
We pulled out all the stops for our wedding in 1985, which was one of the best days of my life. Surrounded by friends and family, I enjoyed being the centre of attention in my off-the-shoulder, full-skirted, white lace dress. I still wasn’t comfortable in front of a camera, but for the wedding photos I used clever tricks I’d learned over the years, turning side-on to the camera to be sure the photographer captured my best angle.
Our eldest son, James, was born in 1986. Even though I didn’t believe my condition was hereditary, I couldn’t help but worry that my baby would be the same as me. But he was fine and so were his younger brothers, Ashley and Mitchell. I had always wanted to get married and have a family, and I took huge pleasure in seeing my boys enjoy the kind of childhood that I’d have so loved for myself. Where I had hung back, they were in the thick of things, playing rugby and enjoying school.
My health issues never truly went away. I struggled with my hearing and decided to wear a hearing aid again.
I also learned British Sign Language and taught it in our local college. Teaching gave me a passion that I’d never felt before. Stepping back into the classroom could have brought back difficult memories, but I could barely recognise myself as the painfully shy girl who would never speak up.
Over the years, I’ve gone back to hospital annually to have my pictures taken so they can monitor any changes in my face. Three years ago, I found myself telling the hospital photographer about all the operations I’d been through and she suggested I should write a book about my experiences.
CHANGING MY OUTLOOK
I wasn’t keen at the time, but talking to her made me decide to contact Derek Henderson, who had performed many of my procedures. I did a little digging online and was sad to discover he had died. Suddenly, telling my story took on some urgency. Mr Henderson had watched me grow from a timid young girl to a survivor and been there through some of my darkest times. He was one of the few who knew what I’d been through and I wanted the world to know what he’d done to help me. Then I met those children, who looked so like me when I was their age, and the need to write the book took on new meaning.
I was invited to a conference by a doctor I’d contacted for my book. He asked me if I’d say a few words. Nervously, I agreed, without really knowing what I was getting myself into. I asked my mum, now 81, to go with me for support. What I didn’t realise was that it was a charity event supporting families affected by Goldenhar syndrome. I’d never heard of the term and looked it up to discover that it was an umbrella term for bone abnormalities affecting the face, the causes of which are mostly unknown. It also described me. Until then, I’d had no idea. I’d thought I was alone, but there are others who look, live and feel like me.
When the children applauded my story, I realised just how far I’d come. My book,
Shelley, is a thank you to everyone who has got me there, from the surgeons to my family and these children who have shown me that beauty is only skin deep. I realise that I, too, was beautiful, even before my operations. The only imperfect thing about me was the self-doubt I harboured for so many years.
Shelley Hull’s book Shelley (Hornet Books) is out on May 23. Shelley is a patron of Goldenhar UK