4 years on

4 years into this journey – a journey no one could ever imagine unless they walk the steps we do each and every day.

I read back on my blog that I wrote in the days leading up to William’s diagnosis, the affects of how a simple telephone call can change the world as you know it.
Then, the devastation that the diagnosis day caused me and our family. I hope to never feel the gut wrenching agony I felt on that day, to collapse in sheer emotional pain, to see my world disappear before my eyes.

My little boy, my world, what has happened to you? What does this diagnosis mean?

I’m unsure why, but I have found this ‘anniversary’ hard. Maybe that’s just normal?

Maybe I should allow myself the pain?

I don’t want sympathy. Just recognise that inside my body it is quite dark, quite sore, quite raw – it formed 4 years ago – and unfortunately won’t ever fully heal.

So many people were there for us at the beginning, but year on year this does naturally dwindle – people move on, people forget – maybe my fault for putting a smile on my face every day. The mistake is, that this smile is for my kids, not a mask!

Don’t leave someone going through a world of pain behind; confront your own awkwardness and speak to them, comfort them – believe me it makes all the difference. A simple text, a coffee, a glass of wine, a chat in the playground, acknowledging you notice them – you feel their pain no matter how well it is hidden.

We’ve had a whirlwind year with all the building and renovations. I’m so very grateful for this and for our new house. However, if I had to choose, I would take a cardboard box with no Duchenne over what we have now. No amount of materialism will take away duchenne and it’s devastation.

Why is there no cure for this vile condition? Why must us parents witness our boys deteriorate before our eyes? Why must we live every day with this one wish; please someone find the cure to keep my boy alive.

Please.

I will still fight the fight, but may have to leave it for tomorrow, today is not my day.

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