Back to reality

So today I went back to work. I couldn’t put it off any longer, and I think I was ready. The day went absolutely fine, I settled back into the swing of things almost straight away. I had a good day. No emotional moments, and no one made a ‘fuss’ of me yet I knew I had everyone’s support. It was exactly how I wanted it to be and it was nice to be back. 

I recieved a phone call at lunch from the consultants secretary to say I could collect the DLA form that he’d finished filling in for Hugo. When I read what he’d put, the reality of Hugo’s condition suddenly hit me again. Its a challenge to be able to read that your child is ‘wasting away’ and ‘deteriorating rapidly’ without crying. Just when I think I am coming to terms with this awful condition, another giant hurdle is thrown in my path. Nothing brings back the brutal reality of Duchenne than reading a report by his consultant stating that he will be ‘wheelchair dependent by age 10’, ‘requires permanent full time care for the rest of his life’ and ‘will only live to be 25’. I have known these facts for 3 weeks now but I don’t think I can ever accept them. It crushes me every time I read it. 

Hugo is really struggling with the stairs at home to the point where he is almost giving up. It’s so heartbreaking to watch him try, then become frustrated and angry, to end up crying for someone to carry him. He doesn’t understand why his body won’t allow him to do these things. Being strong is exhausting, I just want to wrap my arms around him and cry with him. But I can’t. There is only one way to get through this, and that’s to fight Duchenne. We will fight Duchenne and all its challenges right to the bitter end…


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