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

Knowing better

When I was ten years old, I had a best friend. Her name was Helen. She lived ten minutes up the road on a smallholding with ponies (!) and had her own (rickety, damp-smelling) caravan, where we used to spend our afternoons hiding from our little brothers, singing Jason & Kylie songs, trying on lipstick … Continue reading Knowing better

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

Breaking the chain

Last week was a tough one. My eldest was under-the-weather and whiny. My youngest was angry, violent and loud. My husband was overworked and unwell. Benjamin’s health was up and down, as usual. No-one had enough sleep. We had problems with transport, issues with medication, missed phone calls from professionals, unnecessary arguments, and at times … Continue reading Breaking the chain

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