Today was Hugo’s nursery show. It was an end of term celebration of their achievements at nursery. These events are always emotional for me as they always show how ‘different’ Hugo is to other children his age.
As the children walked in, the ‘Friends’ theme tune was playing. The lyrics were very poignant for our current situation, in particular the lyric ‘so no one told you life was gonna be this way’. I certainly didn’t expect our life to be this way! Less than a month ago we had 3 perfectly healthy children. Little did we know we’d be faced with the reality of raising a disabled child. I immediately felt the tears building up! Hugo waltzed down at the back (he’s always at the back!) with a huge smile on his face, surrounded by all his little friends. It couldn’t be a more perfect song for the occasion. Or my current feelings towards his condition. Hugo glanced directly my way as ‘I’ll be there for you’ blasted out. That precise moment will stick with me forever. I will always be there for that little boy, for every single step of our Duchenne journey.
The show itself was lovely. All the children had drawn a picture of their ‘friends’ and stood up on stage one by one to say why they are friends! Cute! They all came together for a little dance at the end to ‘You’ve got a friend in me’ but Hugo had an emotional moment and cuddled up to his TA who picked him up and danced with him. The effort that other people go to with Hugo is truly touching. He couldn’t be in a more supportive school and it makes everything that little bit easier.
As I’ve said before, whilst these events are special and filled with happiness, they also come with a constant reminder of his condition. He struggled with the stairs to get onto the stage whilst all the other children walked up them without a problem. It’s things like this that always make me feel so sad. Hugo will always struggle with the things most of us take for granted. But, as usual, he didn’t give up and had the happy Hugo grin that we all know and love.
Here he is, stood on the stage looking as cute as ever! No matter what Duchenne throws at us, Hugo will always make me proud 💕