12/06/2026
Carers Week- meet Peggy.
This week was Carers Week – a week dedicated to raising awareness of unpaid carers; the people who quietly hold entire worlds together while running on caffeine, anxiety and approximately three hours of sleep.
They’re the people who give up careers, hobbies, social lives, spontaneous plans and sometimes even their own identity. They’re often under-appreciated, overworked, and on duty 24 hours a day.
For a long time, I never really thought of myself as a carer.
Yes, I care for my son. He’s disabled and profoundly autistic. But that’s just being a parent, right? That’s what parents do.
Well… yes and no.
I don’t think I truly realised how different our life was until Walt was diagnosed with autism and I was handed a 70-page form to fill out for support. Seventy pages. At that point I realised maybe this wasn’t quite the same parenting journey as everyone else’s.
Then came the diagnoses:
● Autism
● Learning disability
● Global developmental delay
● Gastro-oesophageal reflux disease
● Chronic constipation
● Multiple severe allergies
● PEG fed
● Epilepsy
And that’s just the stuff we know about.
Each diagnosis comes with appointments, therapies, medications, research, paperwork and responsibilities. Enough paperwork to single-handedly keep several printers in business.
Over the years I’ve attended courses, read everything I could get my hands on, advocated, challenged decisions, fought battles, learned medical terminology I never wanted to know and sat through more appointments than I could ever count.
We administer medication directly into Walt’s stomach. We change and care for his PEG. We know how to use emergency EpiPens. We know how to administer rescue medication for seizures. We’ve been trained in feeding, constipation management, sensory support, therapies and everything in between.
I’ve also accidentally gained qualifications in anger management, crisis negotiation, diffusing ticking time bombs, occupational therapy and the advanced art of spinning approximately 47 plates at once.
Most of which are on fire.
It took me a long time to accept that Walt is disabled and that I am, in fact, a carer.
Because part of what I do isn’t simply parenting.
For Walt’s age, there are many things I do every day to help him survive that most seven-year-olds simply wouldn’t need.
This time last year we were in hospital having a PEG fitted.
For anyone who doesn’t know, a PEG is a small tube inserted into the stomach that allows medications, nutrition and fluids to be given directly.
Walt stopped growing at around four years old. For two years his height or weight did not increase at all.
The doctors offered a PEG many times.
We said no many times.
We were terrified.
We thought he’d pull it out. We worried about the surgery. We worried about the hospital stay. We worried about how he’d cope.
Eventually we were told we had no real choice because of the concerns around his growth.
At the time, it felt awful.
Looking back now?
Hand on heart, I wish we’d done it sooner.
Before the PEG, every evening was a battle.
We had to hold Walt down to give medication he desperately needed. Every night felt like a war. Often one we didn’t win because eventually he learned how to spit it back out with Olympic-level precision.
His reflux was causing damage to his oesophagus. His constipation was out of control. His blood results were concerning.
Most evenings ended with us feeling sick with worry.
The three nights in hospital were every bit as difficult as we expected.
Being in pain, out of routine and in an unfamiliar environment was incredibly distressing for Walt. He barely slept. I barely slept. At one point I think the staff assumed I actually lived in the corridors of the RVI because I spent the entire night walking them with him.
But we got through it.
And one year later?
He’s thriving.
All of his medications and vitamins go through his PEG. His reflux is controlled. His constipation is controlled. When epilepsy arrived to join the party, adding more medication wasn’t the nightmare it once would have been.
What used to be a daily battle is now simply part of our routine.
We call his PEG “Peggy”.
Because if a tube is going to move into your family permanently, it may as well have a name.
He doesn’t particularly enjoy people lifting his shirt or touching it, but he tolerates it because he trusts us.
And honestly, considering he doesn’t fully understand the what, where or why of it all, he has adapted amazingly.
For a child facing huge sensory challenges, it’s incredible.
It has given him a quality of life he simply didn’t have before.
And for that, I will always be grateful to one particular doctor at the RVI.
She treats Walt with dignity, respect and kindness. She never allows autism to become a barrier to treatment. She sees Walt first.
That matters more than she’ll probably ever know.
Carers Week is a strange one because we’re constantly told:
“Look after yourself.”
“You can’t pour from an empty cup.”
And while that’s lovely advice, many carers are standing there holding an empty cup, a leaking kettle and three emergency contact phones.
The reality is that sometimes we do pour from empty.
Every single day.
Because when another human being relies on you completely, you don’t always get the luxury of stopping.
It’s exhausting.
It’s overwhelming.
It’s heartbreaking.
But it’s also the greatest privilege of my life.
Being a carer comes with every emotion imaginable: guilt, grief, joy, laughter, fear, anger, pride and love.
So much love.
Because at the end of the day, love is what keeps you going when you’re exhausted.
Love is what gets you out of bed.
Love is what carries you through the impossible days.
We’re only here for a short time. Tiny specks of dust floating through the universe.
And if I can spend my time on this earth helping my son have the best quality of life possible, then that’s exactly what I’ll do.
Not because he matters more than anyone else.
Because he deserves the same opportunities as everyone else.
He deserves to board the plane.
He deserves to climb the mountain.
He deserves to dance, eat the cake, go on adventures and maybe even go skinny dipping one day if that’s what he wants.
He deserves the world.
And I’ll spend my life trying to help him reach it.
So if being a parent carer means doing all of that…
Then I’m incredibly proud to call myself one.
