Coming Home

I remember phoning my friend to say that I wouldn't be able to make it to the work Christmas Party as Monkey was coming home (can't actually belive I was contemplating going), so he must have come home early December 2004. We'd stayed at the hospital the night before in the hottest room ever where Monkey had slept with us - to check we could cope. We didn't get a lot of sleep that night - partly becuase we were so hot, excited and scared and (oh, isn't this the reality of a natural birth) I was in agony with piles! When we finally fell asleep, and then woke up, we were so worried that Monkey wasn't breathing as he was so quiet - but we had all survived the night and we were finally discharged.

We knew at this stage that it was likely he had some brain damage although the initial brain scan hadn't looked too bad - we had been prepared that it was highly likely that he might have some difficulties but had no real idea what this would mean. It's impossible to know - I realise that now - but that was a difficult concept to grasp initially.

Monkey had never mastered the feeding so was discharged with an NG tube. And we had our first professional, Belinda - a lovely, slightly batty but all the better for it, community nurse who checked up on us and showed us how to repass the tube if it came out. It did come out a couple of weeks later but we didn't repass it. We told Monkey he'd have to manage without it - and he did. It was not easy - for either of us. I often dreaded feeding time but I had nothing else to do - I was on maternity leave to be with my son and we bonded over those hour long feeds.

I can't remember the sequence of events but I remember the appointment to review Monkey's second MRI which showed the extent of the damage to all areas of his brain. The doctor seemed sadder than I think we were. I think because she knew a lot more about what was to follow than we did. We were given a diagnosis of severe spastic quadraplegia and my husband asked about life expectancy - not a question I was expecting him to ask and not something I'd given any thought to so the answer came as something of a surprise. Based on that, we thought we'd lose him in his teens. We then drove to Nottingham and bought a sofa - well what are you supposed to do?