I want to escape…

Yesterday afternoon while the kids were watching tv and I was supposed to be getting tea, I had the urge to go out the door and just keep on walking. Walking and walking. Anywhere, just to leave all this behind. It hadn’t been a good day anyway. I took Pudding to soft play with some […]


We had our first visit to Manchester yesterday and it was a long tiring day (taking Pudding on the train was always going to be a challenge!). The consultant there, Dr Simon Jones, took great care to explain really clearly what MPS is all about – not much I didn’t know but useful to hear […]

That moment

That moment. That moment when the pediatrician goes to fetch a box of tissues before sitting down to talk to you. That moment where you know this is it, this is real, this is not just a simple mistake on the screening test. I was expecting another couple of weeks before we heard anything, and […]

Still waiting

Is it good for me, all this reading? I keep looking at the Society’s website, even though I practically know it by heart now. What do I expect? Some new miracle cure to pop up? I don’t know. I guess on some level I’m thinking knowledge is power. The more I know, the more I […]

Day by day

Days go by now when I feel entirely normal. I still know what’s looming over us, but it’s like I can process it somewhere else, a part of my mind that is separated off and unemotional. Other days, like today, it threatens to overwhelm me again. Hubby is back at work today after a week […]


5.30am is becoming depressingly familiar. Though to be fair, it’s better than 2am. I come to consciousness and for a while lie there listening to the birds, being gradually aware of the sun on the curtains, and then boom, the knowledge is back with me. Or rather, the not knowing. It can be so paralysing. […]


I can’t sleep. Again. i’m tired and go to bed at a reasonable time, but then all the worries and possibilites start churning endlessly in my head, going round and round until i become dizzy with them. It could be the milder form. He’s progressing at the moment. but… And there’s the problem. In my […]

Screening test

When I got the phone message at 5.30 on a Friday afternoon I knew it was not going to be good news. ‘Hi, this is your pediatrician. Please can you call me back before six, or speak to my secretary first thing on Monday morning.’ I’ve been expecting this since the second urine sample was […]