A few days before Christmas, I went as a parent helper with my daughter’s class to a carol service: shepherding seven-year-olds along frosty pavements, trying to keep their wiggly crocodile in line, shushing them as they waited excitedly in the pews. To be honest, it was the last thing I wanted to do when I … Continue reading Overwhelmed
At 4am this morning I was cleaning up shit. Because that's my job. (Except, as a carer it's a job I'm expected to to do for nothing. Nothing being very slightly less than the insulting carers' allowance that those who can't work alongside caring get. Which is slightly less again than the pitiful minimum wage … Continue reading Cleaning up shit
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?
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
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
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 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