Lucy (16, HLHS)


Hi, my name is Lucy, and this is a short piece about what life is like living with a handmade heart.

There are many ways that my heart affects my everyday life. Sometimes I feel as if I’m on a see-saw, trying to balance my lifestyle just right. I am 16 years old, entering my final year of school and doing my GCSE’s, so I thought that I would reflect, and tell you about my life in school.

When I changed from primary school to secondary school, it was a big shock to the system. One difference I found was actually having to explain my heart condition to people. That was one thing I never had to do in primary school, as it was in a small village and everyone just knew. However, when I entered first year, everyone wondered about me. People noticed that I had a classroom assistant, and I stayed inside at break and lunch. I remember the first break time, a lot of other students came up to me and nervously asked why I was different. I tried to explain it the best I could, but it was something I’d never experienced. On a lighter side, I did get some funny replies. One girl picked up on the ‘half a heart’ phrase and she asked me, ‘Can you not love properly?’ You may get some shocked and confused responses, but some people do make it seem funny, and over the years your peers get used to it.

Having a classroom assistant was something I’ve had throughout all my school years, but when you change to a secondary school you have to move about a lot more, changing classrooms almost every half hour. My classroom assistant’s role changed a lot from primary to secondary school. They were with me a lot more, but my school was very good at making it as unnoticeable as possible.

My classroom assistant tries to make my school life again, as normal as possible. She sits back in class and tries to draw the least amount of attention to me as possible, but is always there if I feel unwell. I appreciate this a lot. She also helps me by carrying my school bag, as it can get very heavy with the folders and books. We get out of class 5 minutes early, so as I can take my time getting round from class to class, and so as I avoid the busy corridors with pupils pushing and shoving, etc.

I used to struggle with having a classroom assistant, as I just wanted to do my own thing. I do spend a lot of time with my classroom assistant, and forming a good bond with them has been something that has benefited me a lot. I am very close to my classroom assistant, and she gets on with all of us. I have now realised that they are only there to help, and once you form a bond and work together to balance normality with the assistance required, you will be thankful for that extra help you get.

Some people see me as so different, and expect that my school work will be affected by my condition; so I try and explain that my work will be just as good as the next, quality wise, but I may not just be able to cope with as much of it. The teachers help with this by sometimes giving me a few days extra to do my homework and will understand if I was too tired to complete one.

The school days can be very long, and on ‘tired days’ it can be tough on my system. One thing I find really helpful is just taking a 10 minute break. If I’m feeling particularly tired, myself and my classroom assistant will leave, and go to an empty classroom and just have a drink of water and relax for however long I need. It just gives me a boost that may get me through the day.

In 1st year there was no lift in my school, so my teachers changed my timetable so as I could stay on the ground floor and not have to walk up and down the stairs; however last year, which was my first year in my GCSE Studies, they installed a lift, and now it is there for me to use. It has helped me so much, especially doing my GCSE’s where I did need to get around the school more.

Last year, I began my GCSE studies. This meant that I began to do ‘proper’ exams, and this was tough for me at the start. We spoke to a specialist teacher in my school (the SENCO) and she arranged for me to get extra time on my exams and rest breaks. This meant that I had an extra time than everyone else added onto my exam time, and if I needed a rest or was getting tired, I can leave the exam and take a few minutes to calm down and rest, and then re-enter my exam. This has been SO beneficial to me, and at the end of the day, if I am tired and stressed, my concentration on my exam will not be as good, therefore affecting my final result. Taking a few minutes to ‘regroup’ helps me to bring my concentration back and enables me to achieve the best result I can.

I cannot fault my school at all. They have been more than co-operative, and have tried the very best to find a balance between what is good for my health and making my school life as normal as possible. My teachers are great and they will do anything that can make the school day easier for me. If I have any problems, I can tell one of them and they will always try their best to support me. My classroom assistant is amazing and we will continue to work together this year to help me to get the best GCSE results, with also managing my health and well-being too.

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