Today I was at the Labour Party Conference with the incredible Hayley Charlesworth of Harry’s Pals, speaking about Every Parent’s Worst Nightmare.
This isn’t about disability.
It’s about the mental health of parents and carers who are told their child has a life-limiting condition.
No parent ever holds their newborn and imagines being told their child may die before them. Yet this is the reality for many families.
The well-known poem Welcome to Holland speaks of parenting a disabled child as an unexpected journey—different, surprising, sometimes beautiful. It isn’t Italy, where we thought we were going but it is still beautiful Holland if we pay enough attention.
But when your child’s condition is life-limiting, it isn’t just a different destination. It can feel like a wholly different world.
Last week, I stood at the funeral of a friend’s beautiful daughter in Gouda. As I landed on my own trip to Holland, I remember our first conversation on the phone so clearly. I was nervous, earnest. I was by no means an expert but I so desperately wanted to be useful, hopeful – a point of connection. Our children are so alike. My son, a couple of years her senior, and we are living stories we would not have chosen to write.
I have been to more funerals for children under 18 than for adults over 18. Where in my 20’s I went to friend’s wedding I spotted things I would like in my own, parent’s like us can observe funerals with the same curiosity. We have been told this will likely be our future too.
And yet…
✨ Is it bad? Not always.
✨ Beautiful at times? Absolutely.
✨ Full of love? Always.
For families, this isn’t an alternative holiday. It is an alternative universe—one that professionals may witness, friends may visit, but only a few of us truly live inside.
Loving a child with a life-limiting condition is many beautiful and wonderful things, including being every parent’s worst nightmare. What we need is better and more consistent support for parent carers.
Support which is triggered by our child’s diagnosis and not by our mental health crisis.
There are somethings we can’t change – but there are also some things we can. Essential funds to charities like Harry’s Pals who support parent carers when they most need it.
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