Ignorance is bliss?

On the day that our lives were turned upside-down by an emergency 38-week scan, I remember begging the neurologist to put us in touch with other families with children like our as-yet unborn child. Some part of me knew – despite the medical predictions ("Your baby will never walk, or talk. He won’t be able … Continue reading Ignorance is bliss?

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

Dear neighbour

Dear Neighbour, How are you? I hope you're having a good day. Me? I’m tired. Tired of squeezing a 25kg wheelchair into a car boot through a six-inch space. Tired of soaking the backs of my legs against the front bumper of your wet and dirty car. Tired of trying to squeeze a big car … Continue reading Dear neighbour

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