It’s about sharing the highs and the lows, having a laugh, making friends, sharing a love story.
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
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
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
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
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
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