The winter dilemma

It’s that time of year again. The trees are shedding their golden leaves, the clocks have been put back, geese are flying south; the mornings are crisp and the evenings misty. Thoughts turn to Halloween, Bonfire Night, even, dare I say, Christmas … and the winter bugs have started circulating. Beautiful ... but a harbinger … Continue reading The winter dilemma

Too many futures

Why are the parents of disabled children always so tired? There are all the obvious reasons of course: so little sleep, so much paperwork; too many hospital stays, too much wine, cake, and coffee… but there’s one reason that I haven’t seen discussed so often: we spend so much time thinking about the future. How … Continue reading Too many futures

Daring to dream

For the past couple of weeks, Benjamin has been in the habit of waking in the early hours of the morning, hot, agitated, dystonic, twitchy. I’ve tried everything I can think of to relieve his discomfort: chest physio, pain relief, muscle relaxants, suctioning, repositioning. I’ve checked his heart rate, breathing rate, oxygen saturations and temperature. … Continue reading Daring to dream

Brave, bruised, and better for it

With apologies for the spoiler, I can hardly believe it went without a hitch. Back in the depths of winter, when Benjamin’s health appeared relatively stable, we rashly booked ourselves a summer holiday, more than two hours drive from our local hospital. Twelve hours drive and sixteen hours ferry away from our local hospital. Abroad! … Continue reading Brave, bruised, and better for it

Graduation Day

Since when did nursery graduations become a thing? I'm sure I never had one, but last year my eldest daughter had two, complete with ribbon-tied certificates, gowns, mortar boards (long relegated to the bottom of the dressing-up box), and the obligatory cake. Lovely as they were, I couldn't help thinking this was all a little … Continue reading Graduation Day

Torn

We are just back from weekend trip to Aberdeen. I say ‘we’. I mean my husband and I, and the two girls. Our first trip away without Benjamin. I think we pulled off a pretty good impression of a ‘normal’ family on a ‘normal’ trip. Dare I say 'minibreak'? A few bags slung into the boot … Continue reading Torn