What do you want to be when you grow up?

Being asked that question when I was growing up my answer would always be ‘I want to be a Mummy’. It still is my one constant wish which one day I hopefully will be fulfilling when the time is right. As a result of this dream at the point of getting diagnosed my first thoughts surprisingly were not ‘How am I going to cope?’ or ‘How long till I go blind?’, instead my questions were ‘Will my children get this?’

An answer thankfully is probably not although now dealing with Ushers for as long as I have done, I now am not so worried about my children getting it as I was at first. It turns out that Mike will have to be a carrier of the gene that causes Ushers Syndrome which is apparently unlikely. At the time of trying to find out all this information there was no test to find out, although I was told that there may be by the time we start trying for a baby. Who knows, but it does raise a lot of questions and tells me a lot about myself. For instance had I found out that Mike was a carrier and we could have a high possibility of having a child with Ushers Syndrome I would have been distraught. Having the guilt of passing on this condition would haunt me and whilst it would not have stopped me trying for a baby I felt at the time I would have had an unhappy pregnancy until I knew whether my child had Ushers. Now whilst I know that the guilt would still be there I also know that it wouldn’t be so bad, after all I’m coping and now I’ve settled down to the fact that I’m actually OK I know that any children of mine would also be able to cope too.

Since then my next answer to the question would have been a plumber. Odd choice but growing up I was a bit of a tom boy and I loved the idea of doing something that was so different. I left school at 18 and went to college to train to be a plumber and qualified. I started working during the college years with a plumber and while mostly I enjoyed it I did not enjoy the early starts, late finishes and all the constant dirt! It was during this time in my life that I found out about Ushers Syndrome and I realised that I had a reason why I could not find the screws I’d dropped and it explained why when we went into lofts and under floorboards I struggled to see what I was doing in those dim sometimes black areas.

So I had a decision to make, I realised my dream of starting a business ‘Fair Lady Plumbing’ aimed at single women and old age pensioners would be impossible. Not only I wouldn’t be able to see to do the plumbing work which so often is fiddly but can be in the worse places imaginable but I wouldn’t be able to drive my purple van that I had planned to own with all my plumbing tools. I kept at it for a while but slowly it got to the point I was struggling daily but I think the hardest part was that I was being constantly reminded of my condition. Every time I couldn’t find something I dropped or needed to see where a leak was in a loft and couldn’t I would be reminded why I couldn’t find it – I was going blind.

So I packed it in and started working at the local Post Office. I enjoyed it to a point, it was great socially as I was in the hub of the village and learnt lots of gossip but I wasn’t very happy. I wasn’t doing what I wanted to do and felt that so much of my life had been wasted.

What came next was an interview for the Paediatric Audiology Department which my Mum introduced me to. Since being found to be deaf I’ve been coming to this department for my yearly checkups and new hearing aids. This turning point has turned out to be my lifeline. I got the job and found that I enjoy it far more than ever working as a plumber. Daily I speak to parents of hearing impaired people like me and even though I may not help them constantly I do know what I’m talking about.

So what do I want to be when I grow up? I’m pretty much there, I’ve got a great job, one that I’ll be able to do well into blindness and as for babies that will be happening one day too, there is a little bit of a rush I suppose in that I want to actually see my children grow up but I’m definitely on the right track!