I wasn’t sure quite how to express myself and my feelings without getting either upset or very angry to those close to me.

Counselling was offered to us all by GOSH. After 9 months of finding controlling my feelings and talking about our boy very very hard I realised I needed some help. I needed someone to talk to, to really open out to, someone who knew what I was on about, who knew DMD.

I have been to two sessions now, another in a weeks time. Each time I go I think ‘I’ve got nothing to say’. I then spend 90 minutes talking non stop, letting my emotions out, talking about coping, just talking/crying.

My last session gave me some conclusions on my feelings;

• It led me to believe I need an outlet for myself, a hobby. I mentioned poetry and she said maybe focus on writing about the anger you feel, not sadness! So I did, I wrote and I wrote. It helped a bit and possibly stopped me snapping at others for a while!

• Confirmed in my mind phrases to speak to other children when they don’t get that William doesn’t/can’t do something. Maybe other parents will overhear and learn what I’m trying to get across and use the same language. Maybe they’ll start to understand that every time my boy can’t do something my stomach lurches and I feel so sad inside, maybe, probably not!

• People having pity for me – I don’t want it, but I also don’t want you to think all is ok?! You can worry about me, you can ask me questions, but my answer will probably be a lie. I’m aware that I’m not 100% happy, I have a very sad lull in the pit of my stomach, which I am trying to control! I’m not sure I’ll ever be ‘me’ again and that makes me very sad.

However, I do want love.