Part 1 in a special series with www.victoriaclaire-beyondvision.com
Written by: Sandra Tinsley, mother of Victoria Claire
My daughter was diagnosed with Retinitis Pigmentosa when she was 19 years old and just beginning her adult life at university. How dreadful that must have been for her.
I felt absolutely devastated for her and myself. Having been such a good baby, totally happy, always laughing, nothing ever bothered her, she would tackle anything.
I cried, questioned myself asking was it something that I had done during my pregnancy, had I worked too hard? We had moved house 2 week before she was born, she was also born with the cord around her neck. You always think the worst trying to find answers.
I am a person who will try very hard to help and do anything I can to help people and friends but mostly my family. Life went on as usual, my husband continued to go to work and tended not to talk about it much, so much that I even thought that he forgot it sometimes. We went to Moorfields eye hospital and had all the tests with Vicky, her dad looked up everything he could about R.P. on the internet.
Everything got bad for a time, her fiancé decided to leave her, she decided she could not cope with university on her own.
Vicky wanted to travel and see things before she lost her sight completely, (she was told that would be at age 30), with good friends she went to America then to Italy, this of course was a worry for us all, it only turned my hair and my husbands grey!
I had some very good friends who were either what I call cryers or “that doesn’t matter, she will be ok”. They all did their best to be kind, let me chat to them about my worries and make plenty of cups of tea for me.
I remember going into our local post office and the couple who owned it asked “How are you today?” I just burst into tears and said “My daughters going blind”. I must have really shook them up. They always asked how she was for over 15 years, such a lovely couple, they really cared.
We had a burglary and the first thing I said to our neighbours was “It’s only things, not my daughter going blind!” It must always be on my mind, always there and I hadn’t noticed.
After Vicky had yet another accident out walking she decided enough was enough, she would accept cane training. A lovely lady from Guide Dogs came and took her out and she now has the confidence to go out day and night on her own with her cane. Is it still a worry? Yes, but she texts me to say she’s home and that helps.
As a mum all I can say is be there, help if you can, laugh with each other, cry with each other, try to stand back and watch and be a mum or dad or brother, sister or partner or friend.
Vicky is now married with a lovely husband who cares about her and I hope will always look after her. She has become a sculptor, Ambassador for Retina UK, mentors others with sight problems here and abroad, surfer, skateboarder and is at present writing her autobiography.
I am so proud of my daughter. Could I have coped like her?
I dont think so.
To find out more about Victoria Claire’s work and sight loss awareness involvement please visit: www.victoriaclairesculpture.com or www.victoriaclaire-beyondvision.com
LinkedIn: Victoria Claire Sculpture