A typical ERT

We get to the multi-storey and park up at about 10am. (The first couple of months I set off really early to arrive at 8am in the hope that the traffic would be better. But with the mornings getting darker I’ve tried a later time and found the wall-to-wall lorries on the M62 to be […]

A walk in the woods

Yesterday we went for a walk in the woods. Just Pudding and me. Ten minutes after we arrived we were still by the gates with me holding them shut to keep him safe. He was waving at cars going past, climbing on the bars and trying to pick nettles. I could feel that familiar impatience, […]

Who’s who

The other day when on the way to yet another appointment, I got to thinking about all the individuals we’ve come into contact with since the start of this. How many people have we met? More than 10? More than 20? So I started making a list… Speech and Language – someone who did the […]

New friends

A while ago, the MPS Society put me in touch with another Hunters mum and we’ve talked on the phone a couple of times. Today, we met her and her lovely son for the first time. It is difficult to describe what this meant to us. He is a young man now, spending time at […]

Looking up

Time passes. The worst passes. Reading back some of these earlier entries, I am taken by surprise at the raw emotion – a sign that things are so much better now. Yes, I had an attack of the wobbles last week, and I can’t imagine ever truly accepting with equanimity what we are facing, but […]

Wobbly week

Whenever I think I’ve got this situation sorted and am dealing with it well, the sucker punch comes. I was so looking forward to this week – kids back at school, meaning the holy grail of child-free time again, and a nice straightforward ERT with no other appointments booked in. So of course it all […]

Never going to happen…

Every so often, just for a moment, I have the sudden crazy belief that perhaps this is all a mistake. Somebody somewhere is going to realise that there’s been a mix-up at the labs and Pudding hasn’t really got Hunters. But I know, of course, that that’s never going to happen…


Well, that I was a full-on few days… Setting off at 5.30am on Tuesday was easier than I thought seeing as I’d already woken up an hour before. Dark though, and it was tipping it down with rain so visibility was not great. Once we hit the M1 there was a traffic jam and right […]

Different perspectives

Another Manchester day, but this time, it’s Pudding’s operation so we’re setting off even earlier today. Which of course means, I’m awake way before the alarm. I’m nervous about today, but not so much about the op itself. He’s having the portacath put in, grommets in his ears, and tonsils and adenoids mostly removed to […]

Perfect behaviour

Another day in Manchester yesterday, and more tears from me. I was already teary after lying awake picturing him going under the anesthetic next week and knowing that we will have a few hours to wait and worry. Then in the morning as I walked into the hospital I happened to glance left and read […]