I’m going to make this one brief as I wasn’t planning on posting this evening. However, Riley really took me by surprise this evening and it’s made me realise that he probably knows more than what we think he does. He’s a typical 5 year old boy, he loves proper ‘boys toys’, computer games, running around pretending to be pokemon, and finds trumping hilarious. He does not like cuddles, kisses or any kind of affection. He is way to cool for that. He ‘hates’ his brothers (he doesn’t, he just never admits to liking them, he regularly asks for them to be put in the bin) and tries to maintain the fact that he’s the best boy in the universe.
But tonight he showed a different side, he showed me he cares about Hugo, and he is bothered about his little brothers condition. I picked the boys up tonight as we were walking home. The usual fighting began as soon as we walked out of the school building. Jasper was crying because he wanted to go in the pushchair. The pushchair is, of course, for Hugo, and I can’t push two on my own. I know Jasper is only young and is very tired after a long day at school but it’s only a 10 minute walk and he can manage it absolutely fine. Jasper proceeded to have a tantrum and started pulling at Hugo to get out of the pushchair because he wanted it. I had my hands full of bags and as I went to put them on the floor to deal with the fight that was building up, Riley turns around and shouts (at the top of his voice) “Jasper, Hugo has Duchenne, you do not. Hugo can not walk home, your legs are fine”. I literally froze to the spot, my mouth hit the floor and for a few moments I was absolutely speechless. I didn’t know how to react, I didn’t know what to say. We all stood there in silence just staring at each other for what seemed like ages but it was only a few seconds. Riley was visibly upset and feeling very protective of Hugo, so I gave him a hug and checked he was ok. He said “I’m fine mummy but Hugo needs the pushchair and Jasper doesn’t but he doesn’t understand and he needs to”. I could feel my heart breaking. This was a moment that filled me with absolute pride and sorrow at the same time. I was extremely proud of Riley for being so supportive towards Hugo but at the same time deeply saddened that he is having to deal with these emotions already.
Duchenne makes me so angry at times. Not only is it stealing one of my beautiful boys, but it is going to massively change the childhood that Riley and Jasper will have too. They will have to grow up with a disabled brother, they won’t be able to include him in all the things they want to do and they will have to watch him go through some really difficult things. It’s already clearly having more of an impact on Riley than I originally thought. However, Hugo will grow up with two amazing brothers who will do everything they can for him. They might fight and dislike each other the majority of the time, but I know that when it comes down to it, they will always be there for each other. Love my boys.