Every parent knows the stress and fear of caring for an ill child. But what happens when that illness lasts for years?
For our family it’s been five years, with no end in sight.
I think parenting is much the same, whatever your situation. You want your child to be happy and fulfilled, you help manage their health, you support them in every way. It’s just a bit more intense for us: the consequences of getting it wrong can be catastrophic.
Five years ago when Luke was 10 years old, he fell ill with myalgic encephalomyelitis, also known as chronic fatigue syndrome. It started with persistent, flu-like symptoms but gradually became more severe: just being upright now can send his heart racing and his blood pressure plummeting. He hasn’t left his home for nearly a year and is often bedbound for weeks at a time.
It’s like he’s running on a cheap knock-off battery. It only charges to maybe 20 per cent, and if he runs it down to zero it can mean months in bed barely able to speak until he recharges.
On good days Luke is up for a few hours in the afternoons and early evenings. He can attend to personal hygiene, do some physio to keep his growing body as strong as possible, spend some time online with friends and get through some schoolwork.
He’s a teenager, we don’t have to encourage him to get up when he feels well enough. The problem is getting him to rest when he needs it; it’s a really delicate balancing act between maintaining strength and avoiding the bad symptom flare-ups from over-exertion.
As he gets older he’s learning to spot the warning signs and manage it himself though, which is really helping to stabilise his condition. Independence for Luke as an adult is probably not going to be about moving out or pursuing a career, it’s going to be about managing his own illness and finding happiness in his life.
The biggest change to our household has been a huge shift in priorities.
Everything has to be weighed through the lens of Luke’s health. I left my job as a journalist and editor when he started to decline badly in Year 7, but for me it was a no-brainer.
Luke getting blood taken. He hasn't been able to leave the house in a year. Photo: Supplied Source: Supplied
I couldn’t do justice to work and to Luke, and there was really no option there. My career, my income, it’s just so insignificant compared to his well-being.
And for Luke, with this tiny amount of energy that’s available to him, we have to choose between something fun like socialising or gaming, or schoolwork, because he can’t usually do both. As the years have gone by we’ve come to realise that his days have to be worthwhile, there has to be meaning in his life, and studying algebra or the industrial revolution just isn’t a top priority any more.
It’s such a cliché but it’s made us so strong and close as a family. I think you have to be to cope, and to keep moving forward given the level of stress that’s always there.
The smallest joys that we used to take for granted have become incredibly important – I heard him belly-laugh with a mate online over the weekend and it was the most precious sound in the world.
