“Yesterday someone asked me, ‘Do you work?’ And without thinking, I answered, ‘No.’
Later that night, I sat with that question, and I realized how wrong I was. I may not have a job with a title or a paycheck, but I work. And I work incredibly hard. Twenty-four hours a day. Three hundred and sixty-five days a year. No holidays. No bank holidays. No sick days. Terrible pay.
Because I have someone who depends on me every single moment of every single day.
When you become a parent, you expect that level of dependency when your child is a baby. You know they’ll need you for everything. But as children grow, they’re supposed to become more independent, little by little.
For many of us, that simply isn’t the case. Riley depends on me just as much now as he did when he was a toddler, even though he’s six years old. And it will be that way for many years to come. Riley is autistic.
Many jobs come with stress, but this comes with a kind of pressure you could never truly imagine. You’re expected to become a medical professional, a therapist, an expert in administration, and somehow learn how to survive on the bare minimum of sleep. All of this while knowing that at any moment, a new challenge or curveball could be thrown your way.
Stress takes its toll. I’ve learned that the hard way this year. It can affect your health so deeply that you become the one who needs care. But even then, you can’t truly rest, because there is still someone who needs you. The responsibility never disappears.
Meeting up with friends, weekends away, and nights out slowly become distant memories. Your world gets smaller, and your tribe becomes parents who live the same reality. Try syncing calendars, and if you’re lucky, you might both be free for an hour sometime next year.
The days can feel impossibly long. Endless, at times. Waiting for someone to come in and tap you out for five minutes so you can catch your breath. Waiting for nap time. Waiting for bedtime, so at 10 p.m. you can finally sit down and have a single quiet hour before it all begins again in the morning.
If this role were advertised, I don’t think many people would apply. But as carers, we rarely choose this job. It chooses us. And because of love—pure, unconditional love—we would never say no.
That doesn’t mean it’s easy. It doesn’t mean there aren’t days when we cry for no clear reason. Days when we ask, ‘Why?’ Days when we wonder if we can do it all again tomorrow.
But we always do.
So the next time someone asks me if I work, my answer will be different.
I do work.
And I work bloody hard.”
