Emily's blog addressed disability from a siblings perspective as her youngest brother lives with Duchenne muscular dystrophy.

What I’ve always loved most about children is their brutal honesty (which is usually to the detriment of their parents!) and their innocent and naive view of the world. I think it is so sweet when kids come out with things like… babies come out of belly buttons, and the moon is made of sweeties. Wouldn’t it be amazing to just live in that world!?

For some children that innocence doesn’t last as long as it should, especially when you have a sibling with a condition such as DMD. I had to grow up fast, and my innocent view of the world was tainted a little earlier than most. This doesn’t mean to say I had an awful childhood because that is absolutely not it. But I think people, and adults mostly, forget that we have had to deal with things as children that most adults would struggle to cope with.

I remember the day that we were told us about the full extent of Joe’s condition like it was yesterday. We found out much younger than we needed to due to a nasty comment from a child that was aimed to hurt, but that comment was true. That was one of the most difficult conversations that we’ve ever had to have as a family. I was about 14 maybe older/ younger I can’t remember, and my other siblings were somewhere around 12, and 9 years old. It was in that moment that I realised that I needed to be grown up and strong for everyone else. Not because anyone told me I had to be, but because that ‘big sister syndrome’ kicked in (see my post titled ‘Big Sister Syndrome’). I remember being completely numb, I just didn’t know how to react and I almost couldn’t react how I knew I should. I just shutdown and carried on like it never happened for a lot of years, and it’s only of recent years that I have really had to deal with it head on.

The hardest part about being older beyond your years is that when your a teenager, it feels much harder to make friends and relate to teenage issues. In a lot of ways your already an adult because you have to deal with adult things at home. I was a right moody cow as a teenager, and I probably was too serious and uptight, it took me a long time to loosen up a bit and try to be a bit more my age really. It sounds backwards to have to try and not act older than you are, but unfortunately for a lot of us that is the reality. And it’s tough, because kids can also be cruel.

It’s only as an adult that I have started to realise that some of the things we dealt with as kids isn’t everyone’s ‘normal’, but it was ours. How many times Joe choked on food that was fished out of his throat while he turned blue, or had a broken leg or a split head after falling over. In a lot of ways you live in high anxiety, and fear of that sickening scream when he’d fallen over. So when I reflect as an adult, it’s not a bit of wonder that I was a bit moody, uptight and serious when I was younger. But now… well anyone who knows me well knows that I am far from any of those things. Yes, I am serious when I need to be, but I love a good banter. It keeps things light, and I am definitely just a big kid at heart.

We all deal with whatever life throws at us whatever that is, because we don’t really have a lot of choice do we? We can sit in a dark room and fall to pieces, but life is still carrying on and time is being wasted. If I could change the circumstance I would give anything, but I can’t. What life has thrown at me has shaped me into who I am as an adult, and made me a much stronger person for it. I have my moments like everyone, but that doesn’t mean that I can’t cope, in fact if I am a bit off or upset etc then that IS me coping. And on the grand scale of things I think we all do pretty well!

The whole reason I started this blog is because I wanted to help other people in the same situation. So if your a sibling of someone with DMD and reading this blog then see some of my tips below:

  • Sometimes someone’s ‘end of the world’ could be a broken nail because that it the worst thing they will ever have to deal with. And there’s nothing wrong with that. Don’t resent them for it, but try to be glad that it’s the worst thing they will deal with. This is among the best advice my mum has given me (she’s a wise old bird my mum!)

  • Allow yourself the time to have fun. Yes what we deal with is serious, it’s hard and it’s not fair. But it’s so much easier to deal with when you have a lot of fun and laughter in your life. Pick at least one thing every week that makes you laugh!

  • Take up the gym, or boxing etc. Your angry, pissed off at the world and it’s just not fair. But aim and control your anger in the right place and in the right way. This has always helped me over the years.

  • Write it down. Keep a journal, blog or whatever you prefer. Sometimes there’s things we don’t want to speak to anyone about in fear of upsetting them or getting upset ourselves. But sometimes writing it down feels like you have told someone, which can feel like a weight has been lifted.

Further reading