28th January 2016

GOSH – Our first visit

Lunch at Giraffe with some of our family – it’s my Dad (Grandpa’s 70th Birthday). Feeling very sick but trying to hide it from everyone. Am sure they all feel the same inside.

We arrive to a pretty unwelcoming lobby area (not the GOSH you see on their glossy adverts). Up in the lifts and then it really becomes a blur:-

Our little boy is poked, prodded, stripped to his pants, limbs bent in Physiotherapy.

We go to see the neuromuscular consultant, my brother offers to be a scribe for the meeting – thank goodness – I don’t remember a lot of it now but to sum it up a blur and a diagnosis that killed us inside.

I went hard faced & Matt broke down in the consultancy room.

Once out of the room the whole world just spun, I walked down the corridor and heard my little boys voice in the waiting room, I collapsed.

This cannot be happening.

Strong face again to go see my kids. I sat and fed phoebe her tea whilst Matt took William for blood tests.

Many of my family were there – we were supposed to be celebrating my Dad’s 70th birthday, some celebration hey!