As I was stood at the kitchen window tidying up after tea, the boys were out playing in the garden. They don’t often play nicely together so when they do its a wonderful thing to observe. I will never get bored of hearing them chase each other, giggling away. 

I stopped what I was doing to secretly watch them, and enjoy the moment. They were playing a simple game of chase, running around the garden after each other. Riley had done three laps of the garden and Jasper had done two by the time Hugo had completed his first, but he was chuckling away with a massive smile enjoying the game with his brothers. Every once in a while, probably because his muscles were getting tired, he’d climb to the top of the slide and just sit for a few minutes watching his brothers carry on. But he wasn’t sat there feeling sorry for himself or showing any kinds of sadness. He was sat there cheering his brothers on and grinning away like the happiest boy on earth. Once he’d had his rest, he got back up and carried on. He repeated this routine a few times until a little rest on the slide wasn’t doing the job any more, so he came inside to do a puzzle by himself. I couldn’t be more proud of his amazing attitude and the way he manages his condition at such a young age. 

The fact that he is slower than his brothers and can’t keep up doesn’t bother him in the slightest. It’s me who feels his sadness and his pain. Which is exactly what I am here for. I’m so relieved that his condition doesn’t bother him half as much as it does me. And I hope that will stay the same as he grows up. He is so strong and gives me the strength that I need to get us all through this. It deeply saddens me to know that one day he won’t be chasing them and resting when he’s tired, he will just have to observe like me. 

If he grows up with the attitude he has now, then he will be perfectly happy to watch his brothers get on with their games. He may get increasingly frustrated as the years go by, but something tells me that his big heart will keep that smile on his face. 


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