This blog is about the journey of having a child with a life-limiting condition. One of the most pronounced lessons I’ve learned is that it is filled with stark emotional contradictions. I hope in this piece I can try to capture and express those feelings which are, quite frankly, tearing at me as I type this out.

Sometimes I want what I don’t want.

Yesterday, on my way driving up to Dublin from County Wexford to pick up Brendan Bjorn at LauraLynn, I decided to stop at Avoca and treat myself to breakfast out. I wanted their delicious blueberry and macadamia nut pancakes with the warm maple syrup. I wanted to be relaxed, happy, and enjoying the last moments of being alone before another long stretch (it’ll be about 3 months) of being housebound again.

It turns out I didn’t want it.
Or, I did, but not the way it was. I sat alone in a room full of families and friends all chatting away with each other at their tables, enjoying their breakfast. It turns out that is what I wanted for myself, too. I couldn’t finish eating fast enough.

A couple of days ago I spent a few hours in Wexford town to explore the shops and try to find a few bits I wanted for Declan’s confirmation the following day. I wanted to be surrounded by people also out enjoying the shops just like I would be. I wanted to feel what I used to feel when I was free to go wander wherever I chose to go back in the days I could actually do so.

It turns out I didn’t want it. 
After a few hours all I wanted to do was go home. I didn’t even want to sit in a cafe for lunch. I just wanted to go home and be alone. I think the isolation over the last couple of years is making it harder for me to even be sociable when I get the chance.

This morning, I wanted to sit down and work on the book I’ve been writing. I wanted total silence. I didn’t want to hear the PS4 excitement coming from Declan’s room. I didn’t want to hear the TV and Brendan’s feeding pump noise over the video monitor that is always with me. I just wanted peace and quiet so I could get lost in my own thoughts.

It turns out I didn’t want it. I felt terrible guilt in even thinking I wanted such peace and quiet because I know that, like many parents in my shoes who have gone before me on this journey, someday I will be the one on my knees begging to hear that feeding pump beeping just as I sit down; I have been that woman who thought I’d never be a mother after having lost so many pregnancies. And I thought, how dare I want anything but to be surrounded by my two beautiful sons. I’m sorry for even wanting such peace and quiet.

At least the pancakes were good.