The Beginning

I was born on 25th December 1981 – six weeks prematurely (I think my actual due date was 8th February 1982 but I’m not sure). Obviously I don’t remember this time but from what I have been told in the past and from what I know of cp this is what happened:

Because I was born prematurely my lungs were not properly developed. This meant that I had to spend some time in a special care baby unit receiving extra treatment. My parents have told me that I was fed by a tube in my nose during this time and when I was a few days old I pulled this tube out because I didn’t like it! (a story that is told every so often as an embarrassing when she was little story). As my lungs were not properly developed I didn’t get enough oxygen to my brain to begin with meaning some brain cells died and I developed cerebral palsy.

I was born with a dislocated hip, however this was not picked up on till I was 8 months old and for a while (months, maybe longer) I had to wear a this thing of straps to hold it in place and let it heal – this is a crap description but although its in the box of my baby things its ages since I’ve seen it and I was really interested when I did see it! Rumour has it that I hated it and that it was a bugger to get it on me and get me dressed, and I think its probably quite likely considering how much I’ve hated all the other splint type things I’ve had since. I also had to go to the hospital every month to see Mr. Benson – the consultant I continued to see at least once a year until just after I turned 16. I used to love him and thought that I was really special to him because he always used to come into the room with a big smile and the words “hello sunshine how are you?” – it wasn’t until I was about 14 that I realised this was probably his way of addressing all the girls he saw so he didn’t have to remember individual names. He doesn’t specialise in cp but I continued to see him after finding out about my cp because I was already seeing him. I have to say that I am quite glad about this because I have seen other consultants (mainly the cp and childhood disability specialists for second opinions) and he is the only one who ever talked to me and asked me if I thought my walking was getting better or worse, what I wanted, let me ask questions. Yeah he’d still ask whoever was with me (he usually had to cause I couldn’t always remember) but I got my say too. This is something friends with cp who saw other consultants have told me they didn’t get until they were 16 – until it would be them signing the consent forms for treatment.

When I was 2 and a half my parents were told I had been diagnosed as having cp. Even though I am disabled I know for a fact that if I had kids and I was told that one of them was disabled I’d find it hard to accept. However, my parents are the accept things and move on type of people and so probably they were relieved in a way to know what it was and be able to look towards the future with a rough idea so what I would and wouldn’t be able to do.

At some point around this time I had my first operation. I know for definite that I had the muscle in my hip (don’t know what its called) released, but I’m not sure if I had anything else done. A release is where the muscle is lengthened to stop it getting stiff and contracting as this can cause pain and problems. I know this was around Christmas time as the story of one of my first Christmases is of me being in a plaster cast up to my waist with a bar holding my legs apart – apparently I was in a foul mood until I saw the presents and then I was so excited it took me all day to open them!!

I went to a playgroup the same as everyone else, the only difference being that I had a support worker who was there specifically for me. Joan then went on to be my support worker when I went to nursery and I was very upset when it came time for me to go to school and they already had learning support assistants (LSA’s) and so she couldn’t go with me. We’ve remained in contact ever since although I only really saw her regularly when I went on to DGS at 11 as when I went to primary school she went to DGS as a librarian.

I don’t have any specific memories of playgroup but I have a memory of nursery that can still make me laugh now and my entire family thinks is hilarious (another of the when Em was little she did this and lets all laugh at her for it stories). I could walk a very very short distance with a frame and a lot of time but I fell over lots and I couldn’t ever get up again. The children’s physio used to come out to see me at home and at nursery. I must of just learnt how to get myself up of the floor when she came out to see me at nursery and I can remember telling her that I’d learnt to pick myself up off the floor and being so excited about it that I immediately threw myself on the floor just so I could demonstrate my new skill!!!

<<< -- >>>