The day of dread – or not?

I shed a little tear tonight as I watched and re-watched the video of my little William ‘running’ at sports day today.

It’s really tough day in day out seeing your boy’s differences to others, seeing him struggle with some of the simplest of things in life.

He does however do it with the most infectious smile.

Everyone talks about his smile. His school report was spot on – I have no interest in his grades – they talked about his smile, growing in confidence, fun loving character, infectious giggle and how he lights up the room. To me that is what a report should be, about the whole child.

Oh, he has improved academically too!

It has been a year of emotions in regards to his schooling. The first half term was heart wrenching – his anxiety and stress was so upsetting. He wasn’t my William.

Through the hard work of myself and the school and the openness we have, we gained a way of really understanding my boy and all his complex needs. We achieved the amazing feat of getting his EHCP approved and 1-1 support by Easter.

Seriously how many teachers would happily allow you to ask about 8 professionals in to observe a pupil in one term!! That is how complex he is! You wouldn’t know on the surface, nor if you chatted to my highly intelligent boy.

I can safely say now that my boy is settled, he’s learning and he’s cared for when mummy is not around. He’s also making friends, in his own way.

Sports day is the day of dread for all Duchenne parents. I’m lucky that at the moment my boy can still walk and waddle his way across the line. There are many that aren’t that lucky anymore – and one day that will be me too.

He had an emotional wobble about a month ago and didn’t want to take part in practices, and that broke my heart. A little chat from mummy and daddy and some assistance from our lovely friends who volunteer at the school – and he was back on track! Literally!

Is it selfish that I want him to run and take part while he still can?

I relish the support he gets from his school and the wider community around. He’ll need every single one of you more and more each and every year. (And so will I).

Yes, I’m the mummy that cried today, and part of it is because of my boys visible difficulties, but part of it is just overwhelming gratitude for the love my boy gets.

Roll on the summer and making more special memories with my special family.

#stillfighting 👊




Since writing the below (Monday) William has shown me just how badly Duchenne can hit. Unfortunately, this morning he woke with a sore leg/knee and couldn’t walk on one leg. This meant wheelchair use was invaluable today – his last day of school for the summer. Time to rest my boy, enjoy summer fun days and embrace life. 💙

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