Yesterday was Hugo’s charity football match. It was an amazing day! So much money was raised to go towards Hugo’s fund. Hugo had a beaming smile on his face the whole day. He went up on the pitch to score his very own goal with Daddy.
Surprisingly, I managed to hold it together, even though Hugo’s little face was dotted around on posters everywhere. That was until I realised that things had hit Riley. He couldn’t understand why Hugo was having, in his words, a ‘party’. I took Riley for a chat, when he asked me why people are always doing things for Hugo and not him or Jasper. Just when I thought my heart couldn’t break any more! It’s so much for a 5 year old child to try and understand. As far as Riley is aware, Hugo is the same as he’s always been and I don’t think that it will become real for Riley until he is older. All he knows is that Hugo has poorly legs and his muscles aren’t as strong as his. I explained to Riley that people are doing things for Hugo so that we can take all 3 of them to nice places and create memories. I tried to tell him that it isn’t just for Hugo, it’s for him and Jasper too. When he asked why Hugo had his picture everywhere, I told him that one day Hugo won’t be able to bounce on the bouncy castle like him and Jasper, because of his poorly legs. He seemed to understand and was much happier after our conversation, once he understood that it wasn’t a party for Hugo. I really can’t begin to imagine what’s going through his little mind. Bless his heart.
And that’s the most heartbreaking thing about this whole situation. Hugo’s condition doesn’t just affect him. It’s changed the lives of everyone in our family. Riley and Jasper will now spend their childhoods equally as affected by Duchenne as Hugo. It will become just as much an obstacle for them growing up as it will for him. Family days out, where we live, the car we have, how we spend our time… Everything will ultimately be based around Hugo from now on. The good thing is, they are all so young so it will be ‘normal’ for them. They won’t know any different. And I’d like to think that it will help shape them into considerate and caring young men.
On a final note, the day was a huge success and hopefully it may become an annual event. Here are some photos of my little hero showing the older men how to really do it!!