The spare child

where do we begin? . I guess we should begin from my earliest memory. as a child I grew up in a beautiful seaside town called Brixham. which is in Devon. our family home was within walking distance from our primary school and the beach . our family was well known within the community . but this wasn't for the right reasons . our family was known for having a severily disabled child . and the community took pitty on us . for as long as I can remember my brother was unwell . we made multiple trips to specialist doctors and hospitals . I was the older sister and my roll was to protect and help take care of my younger brother even though the age gap was only a few years . I was expected to miss out on school . performance shows and play dates in order to make sure my brother was getting the care he needed . as children we loved to play together . playing on scooters , water fights , dress up . we played so much but theb we would play on things like his medical bed we would pretend it was the titanic and would raise the head of the bed and pretend to hold on as the ship was sinking . we both thought this was compeltly normal . I was very popular in primary school I had allot of freinds and would go to stage coach which was like an acting school .there was no problems with my confidence at all during this time . my earliest memory that something wasn't right was when I witnessed my mother drawing liquid out of an orange with a needle you would expect to be used when getting your blood drawn . I remember her chuckling when I asked why she was doing that. I must of been only 6 at the time . " I have to practise as its similar to drawing blood which I need to do for work " I didn't understand it st the time but thought it was perfectly normal . in fact I would often see my mother making up my brothers medication and administering it . I would be terrified when I heard his screams when she would put these nasal tubes in through his nose . but this was a common practice and I was lead to believe that this is how he ingested his food . even though we would sit and have family meals together and he would eat normaly . my brothers room resembled a hospital ward . there would be oxygen tanks lined up near his bed , a heart monitor type machine and draws full of medical equipment. I would often help carry his oxygen tank up the stairs and down the stairs even though I was so young. I was often expected to be an adult when it came to my brothers care I had to grow up fast even though I didn't understand what it was all for . over time I became very protective over him and would want to attend hospital appointments with him to make sure he was okay . I ended up being put in a group called young carers and started to recieve help myself with dealing with these adult emotions. often when my brother attended appointments I would go off and see a nurse type women to talk about how I was feeling and how I was coping . which at the age of 5 or 6 is very hard to do . these appointments I had didn't last long though . unfortunately I experienced something a young child should never have to expirance. one day when my brother was recieveing physio I was taken by my usual female nurse to room within the hospital . I remember this room being very dark , the chairs where all packed away and stacked on top of each other. as we walked into the room the lady didn't turn on the lights . she crouched down to be eye level with me and said " you know how your brother is poorly. Well your brother will die at the age of ten " I remember staring at her my eyes filling up and my head beginning to hurt . she stood back up and left the room . closing the door behind her and I was left alone . I remember standing there crying wishing my mum could hear me . I left the room on my own and another nurse took me to my mum and my brother I remember my mother asking me why I was so upset and I told her there and then . I remember her being shocked but she didn't tell me it wasn't true . I don't remember her making any complaint I just remember her saying it's okay . I never saw that lady again . from that point on I was so focused on the fact my brother was going to die that I couldn't sleep at night . and I started having a nightlight on . I would often get up in the night and wander into my brothers room to check he was okay and we would just be sleeping away not a care in the world . it wasn't long untill I started falling behind at school mainly in reading and spelling which I was then later diagnosed with dyslexia . and it wasn't long before my brother passed me in spelling and reading . it wasn't allways my brother who had medical problems . from a very young age I would say around 4 I had problems with burning pains in my privates I remember my mother bringing me food whilst I stayed on the toilet all day . the doctors told her it's because I wasn't drinking enough and I was getting wee infections . the antibiotics never worked and the pains became a frequent thing but because of the seriousness of my brothers health mine was over looked and something I had to try and cope with . it wasn't long before my brother went in for an operation at great ormaond Street which is a well known children's hospital . we were supposed to go on a cruise a few days after he was discharged from hospital but the doctors advised that it wouldn't be possible . I remember the doctors leaving the room both me and my brother crying because we were looking forward to going on holiday . my mother looked at us both and said we are still going . I remember asking her how as the doctors told us it wasn't safe and she said keep crying when the doctors come in we are still going to go but to keep it quite . this was the first time we were asked to lie to medical professionals . because my brother was so unwell he was nominated for a child of courage award . this is an award that is given to seriously ill children and because of this make a wish got involved and we ended up going to a racing event and got to go and see the x factor and meet the judges Simon cowl , Sharon osboun and Lewie walsh . this was the semi finals when leona lewis was competing. so we got to see her to . me and my brother got to do things most children never get to do . but this became hard for me because the focus was allways on him . no one really paid an interest in me as a child . too continue ....