May 26th, the day Ruairí died.
It still surprises me, the sheer physicality of my grief, the way my body aches as though I have gone back in time.
London is in the middle of a blistering heatwave, it was then too. In the immediate days after, I sat in the hospice that cared for my family and I stared out at the beautiful private garden that holds a silver tree of stars with the names of children inscribed along with the age they died: I wondered how their families fared, after? We’d add Ruairí’s star the following year.
I felt separate from the world then. Time seemed not to exist, and I wanted to stay in the hospice forever, in that liminal space where my boy was dead, but still with us. Eight years into life, after, the passing of time is still irrelevant when it comes to him.
This morning, when I walked my dog before the heat gets too intense these words arrived in my mind. Now I sit in my garden, writing, listening to my older son play the piano beautifully. He’s on half term break. I like the slower pace of these days. I like that he’s home.
At Ruairí’s funeral I said I felt his presence everywhere, and that I always would. I desperately needed to believe that. I wonder now if I already knew the only way forward would be to find ways to stay connected to him and keep his presence alive?
I couldn’t have known how, but I think I did know that I’d never be able, or want to ‘move on’, despite what societal norms often state.
Last month, I had the privilege of speaking to trainee doctors from across the UK. I shared our family's story in the hope of providing a family perspective on life with a medically complex child and encouraging greater empathy and understanding. It felt good to talk as Ruairí’s Mom and to hear that my reflections provided new perspectives and alternative approaches to their work.
I miss my boy deeply, endlessly.
I can’t fix the pain, yet keeping Ruairí’s presence alive and making a difference matters, and helps me live, with an open and full heart.