Today is the 11th anniversary of Elliot's passing, a day which never gets any easier for Elliot's family. His mum Andrea has written a moving piece about how she copes 11 years on called 'My Head Knows What My Heart Will Never Accept' which you can read below.
My Head Knows What My Heart Will Never Accept
“We have to stop this now”. That was it, those 6 words said on a busy hospital corridor on Sunday 3rd March 2013 shattered my world beyond belief. That was how I was told my precious little boy who earlier that day had been dancing for his sisters’ friends and then sat on my shoulders laughing as biscuit crumbs dropped into my hair, as we stood watching his brother play football – had died.
No one used the words, Elliot has died, no one said I’m sorry we have done everything we can, no one thought to find a quiet space away from passing people to tell me the words that would forever break my heart.
Those 6 words in that hospital corridor is one of the moments I relive so often, especially coming up to Elliot's (EJ's) anniversary. You don’t want to relive it, I guess it is something that has so much emotion attached that your mind feels it somehow hasn’t made sense of it yet. Just like having to walk away that night, leaving EJ there, as a mum – leaving your son, knowing you will never ever see them again is a pain that I will never be able to describe.
I was at an event a few months ago and someone saw my Elliot's Footprint badge, enquired what it was for. I told her. She expressed how sorry she was and asked how long ago it happened. I said nearly 11 years in March – “oh that’s ok, bit of a relief, I thought you were going to say it was only a few months ago, but 11 years is a lifetime isn’t it, time heals and all that. Good to see you got over ‘it’ and are living your life.” I could have responded; I chose not to. With her living your life comment, she turned and walked away.
In the 11 years that I put EJ down for his afternoon nap from which he never woke up – it feels like my mind is still processing moments from that day and the weeks leading up to the 3rd March 2013. Like spending the half term with EJ and his big brother and sister. Going swimming and seeing EJ scale the outside of the baby slide rather than go up the steps like the rest of the toddlers. Or in the same break, seeing a Fire Engine at Yorkshire Sculpture Park and persuading the driver to let EJ sit in the back. He loved Fireman Sam and to see his little face light up with awe and excitement at being in a real truck like Fireman Sam was so special. Although his attempts to get from the back into the front seat and start pressing the buttons was a bit of a reality check that my little rascal was always looking for the next adventure. How I go from these memories just a week or so before holding him in my arms, when he was gone. My mind tries to make sense of all these moments and memories, generating a new sense of anger at what and how things happened. My mind isn’t a quiet one at the best of times, from January onwards, after the emotional impact of Christmas and my birthday which is the last family birthday EJ shared, the mental energy needed, and gymnastics that my thoughts go through intensifies as EJ’s anniversary comes slowly into view.
EJ’s cause of death was disputed. The Pathologist had one theory that was initially given as a cause of death – a virus which attacked EJ’s brain while he slept and caused pressure due to a brain tumour. A brain tumour was a shock as EJ had shown no signs of illness of any kind. This was then disputed by the Pathologists peers – without us being aware this was happening. We found out EJ’s cause of death has been challenged months later by a call out of the blue. This then led us into a 19 month wait for an inquest whilst an independent expert was found. EJ’s inquest was one opinion and then a different opinion – this one that EJ had an unknown virus that attacked his brain whilst he slept – but no brain tumour. I sat in a fog listening to both and then hearing the coroner make his ‘best guess’ conclusion as he put it. That was it, a best guess of why I put my little boy to bed, and he never woke up. This best guess was the unknown virus theory.
I expected more from the medical professionals, expected concrete answers, reasons, causes – I expected, and I needed. That and other challenges along the way are maybe part of the reason my mind replays, it needs/wants to find concrete answers, something definite to help my heart accept. I am someone who likes to know, so I can process, work it out, avoid in the future or just understand. I can’t accept a ‘best guess’. How can my healthy little boy, go to sleep and never wake up. Best guesses leave you with a lack of closure, understanding, guilt and a repeat on the processing cycle. SUDIC (Sudden, Unexpected Death In Children) is not well known or fully understood. Little research in sudden death over the age of 2 has ever been done. So, I can’t even immerse myself in any reading to try and explain what happened and crucial why it happened.
I haven’t got anywhere near the stage of accepting that I don’t know what we don’t know, and I am not sure I ever will. Nor can I just sit with what happened because although logically, I know what happened, I know the answers we don’t and can never have – my heart needs answers to understand. Or maybe that is what I tell myself because how can you make any of this ok, you can’t. There is a huge disconnect between logically understanding and knowing something – and your heart/emotions connecting to the same knowledge. We are complex human beings, and this is where it can become hard for people to understand the impact of losing a child. We get hung up on the ‘stages’ or ‘process’ of grief – however the logical process and the emotional process or stages – don’t work that way.
For my heart to accept what has happened, it means I must somehow accept I will never see or hold EJ again. Logically I know this to be true, emotionally, there is still a core piece of me that somehow, in some other version of our universe, believes that I will wake up and EJ’s chaos and love will once again surround me.
Someone once said to me that life is a like a stage. Each part of your life is a scene that plays out, different characters come and go, some stay on scene after scene, the story of your life has twists and turns, heartbreak, joy, love, hope and tragedy. As your life travels forward, new scenes are played out. All are connected to your past story and threads run throughout. I quite like the visual image this gives me. EJ is threaded through my life from the moment I was pregnant with him right up until I will see him up with the stars once more. I can look at that stage and know there has been so many scenes played out and so many more to come that are yet unwritten. I have been so lucky in the people who have shared my life stage with me, many are still precious parts of my life stage and my future story to come. There have been scenes of devastation, pain beyond belief and scenes of joy, magic, love and hope.
To the person I will probably never meet again, no time doesn’t heal and no I haven’t got over it. Coping with the death of your child does not diminish as the years go by. With the help of those with me on my life stage though I am learning to live with the loss rather than let it define me.
To my precious EJ. I will always love you more than words can say. As Springsteen sang – “I will see you in my dreams”