(adult, bilateral cataract)
My name is Anne I have just turned 30 years old and this is my story.
I was born, well I think I was anyway, with bilateral cataracts which were inherited from my mum who also had them as a baby. They were diagnosed when I was about 4 months old and removed when I was 7 months old.
I wore a mixture of glasses and contact lenses up until I was 10 when I had lens implants. My sight is around the 6/60 level.
My school experience was quite frankly horrible. I do not want to dishearten any new parents out there and you have to bear in mind that this was 15 years ago. My primary school time was fine. I went to a small school and of course primary school books are in big print anyway so I basically managed. When I went to middle school there was just no support at all. That whole year I basically learned nothing as the text books were just too small for me to read. I also had my lens implant surgery that year and due to an infection ended missing nearly 3 months of school.
It was our hospital optician who put my parents in touch with the team from the local authority that supported visually impaired children. There was a school in our town that had a unit to support vi children and I was due to start there the September after my surgery. Unfortunately my parents moved house that summer and I ended up at the opposite end of the country.
There was a middle school just around the corner from where I lived but the headteacher said that he did not want any vi children in his school. The education authority said they could force him but my parents decided to send me to another school. This meant a taxi ride to and from school every day.
At first things were fine but soon enough they went down hill. I remember quite clearly thinking as a 10 year old after just over a term in the new school that I was like a Christmas present. The novelty of my sight had warn off and I had been thrown away.
I used to spend my lunchtimes in the school field talking to the headteacher who I have to say was a very supportive man.
Things went from bad to worse when I went to high school. I was subjected to a lot of emotional bullying from the other girls. They used to tell everyone that I was a lesbian and that was why I did not have a boyfriend. Things got so bad that I actually invented a boyfriend who was to live near where I did as of course I still went to school by taxi. Although I do not remember this incident clearly myself my mum said that one day I asked her whether she thought I was a lesbian because of what the other girls said at school. I never dreamed of getting married or having children of my own. I can quite honestly say that at high school I only had one person who was my friend or even talked to me. I still keep in contact with her and I am sure that I would not be here to tell my story if it had not been for her friendship.
At 16 I went to a school that was just for vi children. I was really looking forward to going there as I thought at last I would be accepted and have all the friends I wanted and have a good experience at last.
Well I was wrong again. Just because someone is also visually impaired does not mean you are going to get on with everyone does it. I plunged headlong into a relationship with the first boy who showed any interest in me. I was heartbroken when he two timed me with another girl. This was a difficult time for me. I feel that at this point I had a bit of a mental breakdown. My expectations about what life would be like at the vi school were so far removed from reality I rebelled against everything at the school and to be honest was nearly suspended. In the end I had counselling outside of the school which helped me put my feelings in order.
After leaving the vi school I went to university. I had a pretty good time at university. It was difficult at times coping visually with the work as I studied law and there was a lot of reading involved but I got through with a 2:2.
After leaving university I was still living at home. I began work at a local solicitors firm as a legal secretary. My parents had moved house again while I was at university so apart from the girls I worked with I did not know anyone where I lived. As all the girls were in couples I decided to join a dating agency with the intention of just meeting people and going out. Well believe it or not I met my now husband. He is fully sighted and we have been together for almost 9 years now.
We got married nearly 6 years ago and now have two boys. So there you go the girl who though she would never get married and have children is now a wife and mother to two boys. I have done some incredible things in my life I have been skiing and white water rafting. I did a tandem sky dive as an 18th birthday present from my parents. I have been to university and have always worked since. At last I felt content with my life and able to lay the demons of my childhood to rest.
This is however not the end of my story. My youngest son who was born last September was diagnosed with bilateral cataracts at his 8 week check up with my GP. To say I was devastated is an understatement. I remember having a conversation with my midwife when I was pregnant with my first son saying that ah well I was not that bothered if my kids had cataracts as I had turned out ok. Well I now know what a foolish thought that was.
I think I have had the full range of emotions concerning my son’s cataracts. He has had 4 operations in the last 6 months. When you hold your baby in your arms as they give him the gas to make him go to sleep you feel such a mixture of concern and apprehension. I also feel the guilt of knowing for sure that his cataracts have been inherited from me. I went through the feelings that I had experienced as a teenager again and the worry about what would happen to my own son.
Through the support of my family and the other parents in the CCN I now feel I am ready to take on my son’s eye condition and of course having experienced life with childhood cataracts myself I hope that I can help him develop to his full potential. My health visitor says I am a very pro active mum as everything she suggests I do I have already done and worked out for myself. I know there are going to be bad days as well as good in our future but when I look into the smiling face of my baby I know that he is happy and that we will get through whatever the future will bring.