Coping is a word I’ve never really known the meaning of before – but by god that’s all we could do.

Hiding your grief for something / someone that’s not even gone, but grieving the future is unexplainable.

Is it my fault, do I carry this gene?

Why him?

Don’t tell me he was chosen because we will give him a great life – I don’t agree, my faith has gone.

Some friends are amazing, they talk to me, they treat me as normal (knowing inside I’m going through hell). Others, well, enough said.

My family are amazing, they’re there, and that’s all I need to know. I’ve never chatted to my brothers so much, its weird how the worst can bring out the best. I know they don’t know how to help – to be honest I don’t know how they can either, but its nice to hear from them and know they are there.

No one knows what to say – nor do I. But you visit, you call, you message and you try. Please don’t stop.

Final diagnosis day at GOSH in March 2016 – it’s confirmed my boy has Duchenne MD. This time the consultant’s words actually went in. I understood absolutely none of it, but I had my brother there again to scribe so one day I could read the notes. Me and Matt removed our emotions for 1 hour and asked questions.

I start to try to look forward.

Brave face …. Another stage done.