Saturday, 7 November 2015


It's 2am and I can't sleep. As soon as I got into bed my head was filled with the dark and scary parts of loss. The words 'I'm sorry but your baby has died' followed by silence running around in my head, the idea of my sweet, lifeless boy in my arms, the memory of my legs buckling beneath me as I walked away from the only thing I had ever really wanted and the one thing I loved most in the world. 

I hate asking myself why him because it's such a ridiculous question. The reason he died made him who he was and who he was was magical. I will never understand why my son had Down's Syndrome. Why he had an extra chromosome that came hand in hand with a poorly heart. I didn't tick any of the boxes. Infact, I ticked a million other boxes for a million other eventualities but that was the one we got. I hate these thoughts so much, they don't mean anything. He was ours. Our perfect, beautiful boy. He was and he wasn't Down's Syndrome. He was and he wasn't a poorly baby. He was and yet he was so, so much more. He was ours. 

Today my heart aches for him. I want to go back and hold him for longer. I want to go back and memorise every inch of his beautifully pink, chubby newborn skin without the haze of raw trauma, hormones and morphine. I want to tell him again how much we love him, count his fingers and toes and trace those perfectly round ears all over again. I remember making a point of kissing his nose because I couldn't imagine a life where I never knew what kissing my baby's little nose felt like. That perfect, flat-on-the-end nose that filled my heart with love at every scan because I knew it was the same as his daddy's. 

What I wouldn't give for another hour with our boy.

I can't make myself wish I had known something was wrong sooner and wish that something would have made him arrive sooner because no matter what, he was poorly and nothing could have changed that. We would never have had long with him and at least this way he was with me. I can't make myself wish he was different because I don't ever want him to be a different baby. I don't wish for a baby with a different heart or a different set of chromosomes because I only want him.

These moments are so lonely. 

It is so lonely without him. 


  1. Oh Elena my heart aches for you and all you are going through. Nothing I can say will make it any easier so I shall just send my love and prayers and hope they are a small comfort to you. xxxx

  2. My darling I wish I could take away just some of your pain, be there in the dark lonely hours to comfort you and sit and talk with you about our beautiful little boy who was/is loved so much by so many who didn't even get to meet him. Always sending you my love and strength to help you feel just a little easier. xxxxx


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