Doctors, nurses, and specialists all become familiar

I can crush my feelings and fears

I can scream silently in the shower

I can smile while inside me continents smash apart

I sense myself becoming something other

My insides seem bigger than the shell of my body

© Juliet Robinson 2024, all rights reserved

Mind Burble

This is an excerpt from a longer piece which I wrote about my son and his congenital heart disease. I hope to do something with the complete piece in the future. It is the hardest thing I have ever written and certainly the most personal. I found that as I wrote about his journey and what we went through there were things I couldn’t say without breaking into poetic prose, so throughout the story, there are sections like the above part.

Writing about personal grief is a new thing to me. Yes, I spend a lot of time crying when I write about my son or my mother, but I feel lighter, perhaps not always better, but unburdened. It is helpful.

My hope is that my story Pandoras Box will help raise awareness of congenital heart disease. Congenital heart disease is one of the most common types of birth defect, affecting up to 9 in every 1,000 babies born in the UK. During our time in Great Ormond Street we met many other wonderful children who like my son had been born with congenital heart conditions. Their strength and bravery, and that of their families was both inspiring and humbling. Heart Warrior Children are amazing.

Today was my sons bi-annual check up at the hospital and he did amazingly. His heart is functioning brilliantly and we don’t need to go back for another two years unless things change, but touch my wooden head hopefully they wont. I am so proud of him.

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