Summer

I’ve got a confession to make. I’m surviving the summer holidays. Even enjoying it quite a lot of the time. But sssshhhh! Don’t tell anyone because I don’t want to jinx it. Some people might think we’re strange as we haven’t booked a proper holiday anywhere – only a couple of long weekends, and one […]

School’s out

So here we are – last day of the summer term, and Pudding has done a whole year in mainstream. This time last year I was anxiously waiting for September and wondering how things would go. There have been a lot of emotional ups and downs since then, but right now I’m facing the future […]

Not to you

Many times I have laid in bed listening to your nightly party time, and cursing you for my lack of sleep. Last night though I loved hearing your surprised little ‘oh’s and cackles of laughter, the shouts of ‘wha da?’ from your dark room. You see, just before I’d been watching TV and seen a […]

Conference

Quite a few people commented yesterday about the nice weather we’ve had this weekend. I know there was sunshine but I barely saw it as I was sat indoors in a dark room listening to presentation after presentation at a conference. Not most people’s idea of fun, but I loved it. Because this was the […]

Optimism

Two weeks ago we had a meeting in Manchester with the team that co-ordinate Pudding’s care. It was strangely relaxing in a way to drive over there outside of rush hour traffic, in beautiful sunshine, and knowing that we weren’t facing any needles or treatment that day. We gathered in a room – me, him, […]

Raining in my heart

Like many parents, I’ve seen Frozen many many times, and to misquote one of Anna’s early lines, ‘The sky’s crying, so I’m crying’. Some days everything just seems too much. Today has been one of those days. Whether it’s tiredness from the long hospital day yesterday and a night listening to Pudding shouting from his […]

Paradise

I have a neck! (How stupid does that sound? Nearly 46 years on this planet and she’s only just realised…) The truth is I’ve been walking around since Monday morning like a swan with an elegant long neck rising effortlessly out from my shoulders. I had forgotten what feeling truly relaxed is like. The norm […]

Kindness

So you may have gathered that the last few weeks haven’t been the easiest – sickness bugs, half term, surgery, virtual house arrest after surgery (and don’t even mention politics!). But I’ve been carried through by the kindness of … well, almost everyone. Of course, there will always be the exceptions, the ones who judge […]

Surgery

Surgery this evening. After finding out in March that the port that delivers Pudding’s trial medication to his brain is no longer working properly, he is having it replaced today. This morning I chased him and let him climb on my back ¬†and tickled him until we were both in helpless giggles, as I knew […]

Labels

I came to a realisation in the wee early hours this morning when Pudding was slumped next to me on the sofa snoring. (Yes, more vomiting. And yes, I’m fed up of the smell.) I was thinking about the fact that he has possibly acquired some different labels without us even being aware of it. […]