I PEERED THROUGH the glass panel and watched as he slipped another piece of toast into his mouth.

“Good boy.” He gently rubbed his head.  I couldn’t help but feel guilty as I watched both my sons sitting together enjoying The Simpsons.  I tapped the glass, “Two minutes.” I smiled at my twelve-year-old son, Jack. “Just going to finish these then I’ll be in.”

I held up the tea towel in my hand by way of proof. I was actually doing the dishes. He nodded, gave me the thumbs up, and continued to feed his brother.

You’d be forgiven for presuming Jack was sitting with his toddler brother. Jack is what we call “a great big little brother” to Ethan. For nine years it was just the two of them, until our toddler joined them in the latter part of 2013.

Pangs of guilt

My toddler came running out to inform me that his eldest brother had finished his juice and needed another one, “Pronto mammy, in case he has a meltdown”.  Another pang of guilt hit me.

Guilt and I are old friends; guilt never leaves me. I imagine guilt is a friend of every carer on this island of ours.

My three-year-old stood waiting while I added the thickener to Ethan’s juice. “You want to shake it?” I handed him the sippy cup.  He ran off shaking the cup. “I am coming Ethie, no need for a meltdown”, he called out as he made his way down the hallway.

I peered through the glass again. Ethan was laughing and pointing, his voice getting louder and louder. My toddler was well able to spot the signs of a possible meltdown.

Changing moods

Ethan can be happy and excited, but this can flip in an instant. His face changes as dark clouds roll in, and all the thunder he can muster erupts from his frail frame.

I too could see it coming. I left the dirty dishes and followed my toddler into the dining room where Ethan was beginning to yell while swinging his arms and legs. Jack held Ethan’s chair tightly, trying his best to keep it from moving.

Ethan can move a locked wheelchair, while being strapped into it, across the room. Ethan may look small and have a frail body but Ethan is as tough as nails, as his grandad likes to point out. The toddler ran off into the sitting room while I tried to keep the thunder at bay.

This time it worked. Never underestimate the power of distraction. Dancing, singing and clapping all work wonderfully.

Daily routine

“I hate to tell ya mam, but I think he may need a change.” Jack is often the one to pinpoint the exact moment Ethan needs to be freshened up. “I’ll get everything for ya”.

He went off to get everything I needed to ensure changing Ethan is done as fast as it can be. Jack’s job is to keep his eye on the TV so he can fast forward any adverts. Ethan does not like advertisements. We pre-record his shows daily to avoid those pesky adverts.

Ethan isn’t a fan of having to be changed either. This is only a new development. Before his latest decline, he would happily accompany me to the bathroom. Now he’s different. His understanding has declined and he isn’t as steady on his feet as he once was. We need to take breaks in between changes, making it easier to just change him where he is.

Jack tries his best to engage with Ethan while I work as fast as I can to freshen him up.
We are a team. This was never the kind of team I envisioned for me and my sons, but life as a full-time carer changes the way a family works. Lines get blurred and we all become a carer for that one person we can’t imagine life without.

As the evening rolled into the night we checked our camera to see if Jack had left some surprises for us. Recently Jack has taken to snapping pictures behind our backs and leaving us to discover his snaps on our phones or the camera long after he has gone to bed. There they were. Beautiful bright sneaky snaps of mainly Ethan and me, with a few selfies of Jack and Ethan thrown in for good measure. Jack takes pictures I know we will treasure in years to come.

Through all the heartache he seems to be able to capture that moment of calm.

It’s not easy being Ethan’s sibling

I had bookmarked a post on social media during the day to remind myself to read it. It was an article about the young carers of Ireland and attached was a competition. When I say competition, it’s not a typical competition as every single young carer is thought very highly of. But it is a way to acknowledge the all too often forgotten young carers on this island of ours.

I read, that for National Carers Week 2017, they were looking for young people who are carers, who would like to share their experiences and interpretation of caring for a family member. All creative mediums were welcomed and so I entered a handful of Jack’s photographs.

We were told last week that Jack is invited to Dublin as a guest of honour at the launch of National Carers Week as he has won the competition. I was shocked and had not mentioned to Jack what I had done with his photographs. My confession came pouring out of me when he got back from school.

Jack has ADHD, which makes it harder for him to process news. Later that evening he had many questions. Ethan was granted respite, meaning Jack will have both his parents and his younger brother with him. “So, Ethan can’t come?” Jack asked.  “No buddy, we think it might be a bit much” I smiled. “Oh. Ok. Well, we could take some pictures and show him.”  I nodded.

It’s not easy being a sibling to Ethan. Ethan’s needs are great and often take priority over his siblings needs, despite them being younger than him. They take on a caring role regardless of us trying hard to prevent that from happening. I guess it’s true. Children will see and do what they see their parents doing. My boys may not have “typical” childhoods but l hope they look back and see all the beauty in those moments that Jack has forever frozen in time.