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

More than carers

Last week we said goodbye to someone we will all – Benjamin especially – miss like crazy. But it didn’t start out that way. I’m a proud person – I don’t like asking for help (my husband will tell you that’s an understatement). I’m a private person – I don’t like having other people in … Continue reading More than carers

End of an era

My eldest daughter, Jackie, nuzzled her way up and latched on to my breast whilst I was still in the recovery room after her caesarean birth over six years ago, and I’ve been physically nourishing my children ever since. In fact, I’ve been either pregnant or breastfeeding (or both) for longer than I was in … Continue reading End of an era

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

Fake it ’til you make it

Someone once told me that, however bad you're feeling, simply smiling will make you feel happier. It’s to do with the physical action of moving your face muscles triggering neural pathways involved in emotion. Or something. I don't know whether it’s scientifically proven, anecdotal, or just bullshit. Anyway, I wonder if the same can be … Continue reading Fake it ’til you make it

Captain Endurance and the Imperturbable Girls

I have to admit, I’m not really up on my superheroes. I understand things have moved on a bit from Thundercats (I wasn’t allowed to watch He-Man and the Masters of the Universe because it was on ITV and therefore infra dig). I’m painfully aware of the PJ Masks, thanks to my six-year-old and YouTube, … Continue reading Captain Endurance and the Imperturbable Girls

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

Postcode Lottery

I’ve always thought of myself as fortunate. Opportunities have landed in my path. My parents bought a house in the catchment area for a good school. My teachers saw to it that I got into a good university. That good education got me a job that I love. I have three beautiful children. My husband … Continue reading Postcode Lottery

Just a cold

The males in our household have been stricken with a cold. My husband has adopted the standard attitude of shuffling around the house looking sheepish, occasionally being wracked by paroxysms of coughing that needlessly shake his entire body, and ostentatiously ironing handkerchiefs and boiling kettles for uncertain purpose. This in itself is pretty hard work … Continue reading Just a cold