Today the boys and I spent 3 hours away from home so that Declan could take the assessment for the Center for Talented Youth program via Dublin City University. He was invited to participate because of his very high maths score on the national standardised test. So, off we went, me proud as punch of my youngest son and excited for the possibilities ahead of him.

We drove up to the beautiful centuries old buildings of the IT Carlow Wexford Campus. The first hurdle was seeing all the other parents with their children go up steps to get in the door. “Around the back of the building” I hear a man tell me. Sure enough, there was a ramp around the back. We get inside and discover hurdle number two.

Declan’s assessment is being done upstairs and there is no lift in the building. 

I give him an encouraging talk and send him alone up the stairs amongst all the other families. Declan, my sweet youngest son, is terribly shy and I knew he’d be nervous beyond words. Out of an office comes a lady who turns out to be an instructor. She kindly stood with Brendan Bjorn while I ran up the stairs to get Declan sorted and explain to the CTY team why he was up there on his own. And with that, back down the stairs I ran. The instructor had a meeting to get to.

About 30 minutes into the assessment, Brendan Bjorn began to fill the hallway with quite the pungent odor. Yep, he pooped. There was, of course, nowhere to change him.

He had to sit in a poop and pee soaked nappy for 2 hours until we got home. He deserves better.

Brendan Bjorn and I spent some of the time waiting in the canteen. At a table near us, 4 women sat chatting. They were obviously instructors at the school by the conversation being had. I sat there remembering when I used to be just like that – sitting at my place of work having an intelligent conversation with my professional peers. I nearly broke into tears. All of that was a lifetime ago.

After the assessment was done, it took a few people going upstairs to look for Declan as other kids were beginning to come out of the room. Eventually one of the assessment instructors came down and said she’d go back up to tell the other instructor to send Declan down. Definitely a group effort, but it was done!

As we drove through Wexford town on our way home, we discovered there was an ice skating rink put up on the quay. It was surrounded by Christmas lights, making it all very festive and inviting. I found myself once again having to apologise to Declan because we couldn’t stop…because of his brother. I left the last part of that sentence out. It’s standard unspoken understanding in our house now. I don’t want it to be, though.

More and more, I want to be free to take Declan on adventures, big and small and in between. 

I wanted so desperately to stop and go ice skating with him! He’s never been. In truth, there is so much he’s never had the chance to do. I wanted to hold his hand as we skated around the rink and before he’s of the age he won’t want my hand in his any more. He still does, you see, and that special time of youth is quickly passing by. With each year that screams past, I can feel my anxiety screaming internally along with those precious, fleeting years. I need to experience these things with Declan now, and I simply can’t do most of those things while his brother is with us.

And I hate myself for even thinking this way.

The fact I’ve gotten to the point of being able to say anything remotely close to this tells me just how burned out I am becoming as a carer. 

I just want respite. Strike that. I need respite. Regular, weekly, respite. I want to be able to leave the house with Declan…just the two of us…free to discover what little adventures await us without having to worry about stairs or steps or lifts or narrow doorways or rain or wind or nappies or feeding pumps or gagging or vomit or seizures or pressure sores or…

…without having to worry about anything or anyone but us.