“Hey buddy” he gives him a hug which is met with a smile, a laugh and these days a hug back.
“I’m just going to get out of this," he points at his school uniform in disgust, "Then grab my dinner, OK buddy?”
He pats his brother’s head as he walks past me and upstairs to rid himself of the reminders of his school day.
My phone rings. I scramble for my notepad as I know I won’t remember the details discussed over the phone. He hands me a pen, then points at the door.
I take the call outside in the kitchen, away from the hustle and bustle of the house.
“Well, who was it?” He asks as he fast forwards the adverts, while holding his brothers hand.
He’s not yet 13.
“Just the usual. Good lad, go up and do your homework”
“Is everything ok though, with Ethan” he stops short of the door.
How much is too much? He knows though, he knows me well.
“Mam, I asked is everything OK with Ethan?” His voice pitch changes and I wonder if that’s the beginning of his pending teenage years. “Did they ring back about his peg?”
“Oh yeah, yeah, I just needed the notebook to remember who was who, you know how easily I get all his doctors mixed up. His peg is fine buddy” I shrug my shoulders and flash a smile.
“Ah ok. Right. Call me if you need help” he goes off to begin his homework.
My four year old sits playing in the corner when he hears me tut or say a word I shouldn’t say.
“Do you need me mammy?” He calls from the sitting room.
Do I need him? He’s four. How can I need him?
Before I can answer he is at the doorway between our dining room and sitting room.
“Is it wipes you need, or a pull-up, or just someone to talk to Ethan for a minute?”
He’s four. I feel guilty. I feel guilty for many reasons but right in that moment the reason is because he knows exactly what I need.
“Wipes please baby” I smile at him while trying to keep Ethan from decorating the floor.
He dashes off.
“Ohh mammy, will I call J to help keep Ethan’s hands away?” He asks through a pinched nose.
“No it’s fine. Thank you buddy, you’re a great help”
And those two young boys are young carers without ever knowing it.
Without it ever being anybody’s intention to have them help care for their brother.
That knowledge comes with guilt; a lot of guilt on my part. Yes, they are great boys and yes caring for Ethan teaches them wonderful things.
But, in the dark of the night I lay awake thinking about those two young boys and what weights lay across their slender not yet fully grown shoulders.
I think about the future. I think about how they will feel, cope and live after their brother leaves us.
I don’t want my boys to be carers.
I don’t have a choice.
Sometimes I tell myself aren’t all siblings semi carers of each other?
How often do we hear a parent ask a child to keep an eye on their sibling while they make a cup of tea or go to the toilet? Every parent does that.
I do that too.
Do other parents feel guilty? I don’t know. Maybe?
I think the guilt stems from how much they know about Hunter Syndrome while other children don’t even know about disabilities.
My four year old can tell you what hunter syndrome is and what respite is and why Ethan needs help with everything, even though he is 15.
My soon to be 13 year old, is so mature when it comes to Ethan but lacks that maturity in other aspects of his life.
I often wonder is that because he feels he has no choice but to be ‘mature’ when it comes to Ethan?
Does he know how easily Ethan’s life could change in a second? And, if so, is it me who told him that without uttering a word?
He’s able to tell you what a port is for, a peg tube, AFOS, what ERT is, the list goes on...and he’s now mastered the electric wheelchair, better than me if I’m honest.
Yes, my youngest sons are indeed young carers, young carers by circumstance as many many children all over the world are.
The 25th of January is National Young Carers Awareness Day, if you know a young carer, treat them to something special, and let them know that they are awesome - that’s what I plan to do.