As a young girl, I was incredibly confident, outspoken, enthusiastic, and so fortunate that my parents never allowed my disability to suffocate that. My childhood had a fair few tumultuous years: I had operations, infections, insufficient footwear causing more infections, new parts of my condition popping up as I grew and so many other problems I can’t even remember. All of this was then exacerbated by my free-spirited attitude leading me to accidentally injure myself and then not understand why I couldn’t walk like the other kids, obviously ending in huge upset.

I don’t think I’ll ever be able to imagine how completely I could’ve been crushed by my Spina Bifida. There are children out there who are unable to live away from it, and in all honesty, for a time I was one of those kids. Aged around 7, I spent the best part of 18 months in and out of hospital and in a wheelchair and yet, my family managed to make me feel just like any other kid. They worked tirelessly to protect my personality from my disability: a feat I will probably never be able to repay them for.

It’s well-known that parents need to be supportive when their children are struggling in order for that child to feel safe, loved and happy. But having a child with a disability that you know nothing about requires a whole other level of support. To make life all the more challenging, my eldest brother has Marfan Syndrome and has his fair share of medical problems. So not only were my parents navigating raising 4 children whilst working full-time as English Literature teachers, they were working out how the hell to cater to 2 separate disabilities, whilst ALSO encouraging those children to feel equal to their non-disabled siblings and the rest of the world.

They managed it though.

I spoke a lot in my last entry about how complicated it is to live with a disability, but an important aspect of my experience is that I spent the first years of my life living as disabled with my family. I was so overwhelmingly supported that there was never any aspect of it where I was alone.

When I describe my childhood and adolescence as perfect, that isn’t to say that there weren’t points where I really struggled. For instance, I was in a wheelchair at 3 separate points in Secondary School – prime time for teenage insecurity and social paranoia. What made my early years perfect though, was the fact that everyone around me constantly made me feel normal. In the moments when I was physically or emotionally isolated from my peers at school, my parents and brothers kept me laughing and focused on a positive outlook on life.

This did then mean that at the beginning of this year, before my travels and before moving to University, I was confronted by the loneliness of moving out. I knew that I’d make friends at University, or wherever it was I went, but I now knew that my support system was about to be miles away. My family and friends who all knew my condition as well as a non-disabled person can, weren’t going to be 2 seconds away. This would mean that I would have to re-explain myself to people, bringing attention to my limitations in a way I’d never done on my own before. There would be no-one who knew me: I had this moment of realisation on the floor of my room, crying to my Dad, with an infected foot, weeks before my plane to Nepal.

It was only when I started to travel that I realised that I can do this on my own – even though it’s definitely not been easy so far. And it’s only thanks to the immense amount of love and support I had whilst living at home that I now (sort of) know how to. Thanks to my family, I’m confident in social situations and don’t shrink into myself when my disability is mentioned. Owing to my parents’ strength, I’ve learnt how to get respectfully passive aggressive with institutions or individuals when they seek to deprive me of things I need, because to some I don’t appear ‘disabled enough’ (side-note: what does that even mean?..). But most importantly, it’s thanks to all of my family’s unwavering support that I know that as lonely as disability can be, there will never ever ever be a time when I’m alone – no matter where we all are in the world.

And that, ladies and gentlemen, is how you should raise a disabled child.