This topic is very much an ‘each to their own’, but a one I feel very strongly about. As a sibling of someone who lives with Duchenne, it can be very overwhelming to understand about the complexities of the condition in ‘layman’s terms’. Quite often this has to be done with a degree of science behind it, but if you’re anything like me, it goes in one ear and out the other!
For young siblings, even pronouncing ‘Duchenne Muscular Dystrophy’ is a gobful to say the least. I remember being in primary school, maybe about 8/9 years old, and another classmate asking me why my brother ‘walked funny’. I had tried so many times to pronounce it with the help of mum and dad, without little success. But this day, I managed it and I was so proud of myself! I couldn’t explain what that meant, but at the time, that was the only explanation I had as to why my brother ‘walked funny’. Or a one that I could understand anyway.
As I got older, I had the science explained to me a few times (by both mum and dad and professionals) and it took me quite a while to understand it. Being completely honest, there are still parts I don’t understand. But I don’t need to. I know what I need to, but I don’t indulge in anything more complicated than that. I don’t need to because no amount of understanding every little detail of the science changes anything. I completely understand that for some people, this perhaps makes it easier for them to deal with, we’re all different after all, but I feel that some become so absorbed in the science that they’re missing out on the here and now! As a family we have chosen not to embroil ourselves with anymore of the ‘science’ than we really need to. We know what we need to, we ask questions if we have them, but beyond that. Does it really matter? It doesn’t change anything, it just further confuses an already overloaded brain!
I have always played a part in my brothers care for as long as I can remember, completely through my own choice. It’s not for everyone, but something I have always enjoyed doing. Yes at times it’s difficult, we have normal brother and sister rows like anyone else, but I’m older so I’m always right… right Joe!? I have made so many amazing memories with him over the years. We have been all over the country and had lots of funny moments, rows over the sat-nav, and questionable ‘accessible’ hotel rooms to say the least. But we have always had a laugh along the way, and those are the things that matter at the end of the day. Those are also the memories as a sibling that no-one can ever replace. I will always be dragging the poor bugger somewhere else down the country being the bossy big sister that I am!
My point is no-one knows what the future holds, life is short and it is so so important to make those memories and take lots of pictures and that goes for everyone! Science will always be waiting for us, someone will always be thinking they’ve found a cure, but the reality is that life still has to continue. Yes, of course I would love for a cure to be found like everyone else, but living on hope isn’t good for anyone. We can hope for a miracle, but sometimes you just have to live for what you have and where you’re at NOW!