For those of you that don’t know, I am Connie’s older sister Jordan. I am three years older than Connie and I write the blog posts for our Just Connie blog. Over the past few months there have been so many changes in our home that have had a huge effect on the way that we live our lives. My life has never been like how I presume ‘normal’ people live but now it feels even further away from the norm as we delve deeper and deeper into the world of medication, seizures and the scary reality of what the future holds.
My life isn’t what I expected it to be – but I absolutely love it. I would be lost without my sister and she is fast becoming the main focus in pretty much everything that I do. But growing up with a sibling who has disabilities hasn’t been easy (I am sure all you other disability siblings will agree with me – including my younger brother Morgan!) and it is a life that no one else can understand. Yes other people, like family, friends and carers, experience how Connie can be but they only have her for a set amount of hours – no one apart from myself, my parents and my brother know what it is like to live with her 24 hours a day for 21 years. They don’t see the frustration when you are in your bedroom wanting 5 minutes peace and Connie will just not stop coming in. They don’t feel the constant struggle of trying to keep Connie occupied which often involves someone being out with her all the time when you just want to sit and chill. They don’t see the confusion on friend’s faces when you invite them around and all we can watch is CBeebies on the TV. Instead of getting ready for a night out with my 21 year old sister, I get my 21 year old sister ready for bed – dressed and washed, nappy knickers and all! As a family, we have never been to the cinema together. We have never gone to the local village fireworks show altogether. We have managed to go on the odd trips to places like the Warner Bros Studios (I am a huge Harry Potter nerd!) but Connie was on a residential trip with her school then so it doesn’t really count as a family outing does it?
Recently, the changes between my life and the lives of people I know have become more and more obvious to me. So, I thought it was about time to create a new series here on the blog all about being a sibling of someone who has a disability. Hopefully, it will give comfort to other people who are in the same situation as I am and it will give another insight into our world for all our lovely readers. I aim to post once a week about something to do with my ‘Sibling Love’ – it might be about something me and Connie have done together, or about an aspect of being a young carer. It might be about being able to do certain things without Connie or about our special sister relationship. I hope you are looking forward to reading it as much as I am looking forward to writing it!