Losing a child is different to any other loss. My child died, and on every possible imaginable level, that is wrong. The death of a child is not something anyone is prepared for or should ever happen. As a mother, the instinct to protect your child is always there. Not being able to protect your child; or save your child from dying goes against everything that motherhood stands for. This is not the natural order of things, and goes against the normal cycle of life.
Watching my child die was the most traumatic thing I have ever encountered; it will haunt me forever. Living every day without Edward is something I must endure for the rest of my life.
The anniversaries are difficult, and to be honest, the days, weeks in the lead up to the anniversaries are difficult; and this is a different difficult to the everyday difficult.
The everyday difficult of one less place to set at the table; the fuss over whether there will be something served which would normally cause a fuss; the chaos on the school run; the chaos tearing around from club to club after school; the noise in the house; the sibling rivalry and arguments; the incessant nagging for us to do things. All gone.
There’s also the difficult times we do things as a family … conscious that one of us is permanently missing. Doing things, going to places, knowing Edward would love them, hate them; new places, familiar places; places with memories … beautiful, special memories. There are those who have told me to never go to the same place on holiday again. Let me tell you this, that there is no place on this Earth I could go to without my heart and soul screaming out for my boy to be with us still. Wondering if he’s ok. Asking if he’s ok? Shouting it out. I don’t shout it out loud, I shout it in my head, my heart aching for an answer, my soul searching for an answer.
Edward was funny, witty, clever, sporty, very mischievous, very cheeky, ever the joker, with a wicked humour and a laugh to match. He did so many things, activities, clubs … competition swimming, rookie lifeguard, triathlons, music, and he lived and breathed scouting. He was a wonderful loyal friend, super fun, he’d have your back, and would put his neck on the line for you. He was so full of life and lived life to the full.
Edward was my middle child … the age gap between his brothers is now so glaringly huge, even that is a constant reminder that Edward is no longer here with us. When I line the boys up for the photos, there’s a space for Edward … a gap. That gap … that emptiness … that void is enormous and impacts in every aspect of our lives … and the silence of Edward not being here is so overwhelmingly loud; so noisy that it becomes a presence. Watching Oliver wearing Edward’s clothes, I sometimes catch a glimpse and see Edward, and in that brief moment I’m suddenly taken to that special place in my mind to relive that beautiful memory.
I miss him. I miss every minute of every day he’s not here. But in everything I do; everywhere I go; he’s with me. In the memories, and in the thoughts of what he’d be doing, or saying, or wanting to do. He comes with me everywhere and his spirit guides me in all I do.
There are an enormous amount of people who support me, who support what I do, who understand completely what I am trying to achieve, and how I go about it. There are those who support me emotionally, practically, even financially. And there are those who drift away, leaving me to grieve their friendship on top of grieving my child. People spout advice, trying to tell me what I should do, ought to do .. and indeed what I ought not to do. Wondering why I still grieve, why I haven’t moved on, why have I not stopped pushing myself, and gone back to the same job, the same routine, the same life as before Edward died. They cannot understand that I will grieve forever. “Time will heal” they say, “You won’t always feel like this”, “The pain will ease”, “You’ll feel better after the first year … that’s always the worst”. Trying to take away my pain; trying to fix me. But you can’t take away my pain, and I don’t want you to. Professing to me about other people they know about, comparing me to others, comparing my grief to others who have lost parents, grandparents, step parents, pets. Being challenged, having my decisions and my actions questioned, putting up with insensitive and hurtful comments, which happen more frequently than people would think. Let me tell you this … that however well-intentioned your words are, or your advice is … it isn’t helpful … quite the contrary. All this tells me is that you think I’m wrong for feeling as I do, it invalidates every emotion I have, and leaves me feeling both anxious and exhausted, and it adds to the weight of the grief I already carry.
There are also those who wonder how I continue, how I smile, how I laugh, how I carry on … how can I do these things when I’ve lost my child? What choice did I have? I am lost too, and will likely be lost forever, and I will search for my child forever. He’s nowhere on Earth, and yet he’s everywhere. I sense him everywhere. At times I feel him; at times I see him; at times I smell him; and yet he’s not there. Every little thing I do in my life, every place I go, every little item I own has a memory or a thought of Edward. Either what was, or what might have been. There is no aspect of my life that Edward’s death has not touched; Edward’s death changed my life; Edward’s death changed me.
I imagine him, what he’d like, what he’d look like, what he’d be doing at school, what running, swimming, cycling he’d still be doing, what races he’d be winning. I imagine him still with us, just that I’m unable to see him.
My life was normal, but now it isn’t. Nothing feels real anymore, even the reality of my other children. I can’t fathom how life can carry on at full speed around me, when for me my time has stopped. Sometimes I carry on at life’s fast pace; sometimes I am stopped in my tracks. Sometimes I smile through the pain; sometimes I am completely overwhelmed, consumed and debilitated by it.
Have I moved on? No. Never. How can life move on? Moving to a future without my child is not something I’m interested in. But life has moved … it hasn’t stopped still … and neither have I. The truth is that I am alive. I have a life to live. I have a family. I have a home. And I live that life, with my family, with my broken heart. A heart that is full of love for my family, but with a piece missing, a piece which will never be found, a hole like an open wound which will never heal. I will never stop missing or loving Edward. Moving on is just a ridiculous suggestion. I will continue to live, because I continue to live. I will change, and grow, and experience, even if I don’t want to. But I will always love. My love will not move on. I will continue to live with this love, now and always.
I founded a charity in Edward’s name, The Edward Dee Fund (www.theedwarddeefund.org). I try and educate others by raising awareness of meningitis and sepsis, the diseases which took the life of my boy. I don’t want any other families having to go through what we had to; I want research into these diseases to continue; I want to keep Edward in the heart of the community where he would be if he were here; and I do all this with Edward by my side … and what a huge and great legacy he is leaving. For those who’d like to have known Edward, the song which the charity commissioned sums him up perfectly. Jay Stansfield wrote the music and lyrics to “A Song for Edward”, and every penny from this song being streamed or downloaded goes directly to the charity (https://thesongwritingcompany.bandcamp.com/releases). I hope that this song is played and talked about for many years, that people ask who Edward was, hear his story, and learn about meningitis and sepsis.
I have found a new hobby in writing. Not only have discovered a love of writing, but it has led me on a journey of self-discovery which I have found both liberating and cathartic. I write about all manner of topics, anything and everything which comes to mind and flows through me. My mind is full of so much stuff from trauma, sadness, and grief to all kinds of busy mum stresses and worries, as well as the mundane and the insignificant. All my thoughts and memories articulated and offloaded in my own way can be found on www.elizabethdee.me which you can also follow on Facebook at Life Chez Dee.
I haven’t moved on from Edward’s death, but I have moved with time … adjusting to a new normal, a normal where all my children are still part of my life … two physically with me, but one always by my side spiritually. I am incredibly proud of all my children, and am privileged and proud to be their mum … and so it will always be… always.
by Elizabeth Dee
www.elizabethdee.me
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[This piece was originally written for and published by My Bump To Baby; republished by Elizabeth Dee on Life Chez Dee]