My worst enemy is my memory…

William would be four this year. We would be planning his transition to pre-school. Buying him his first little uniform. We would be watching him play and encourage his little brother, perhaps having a calming effect, perhaps feeding his boisterous side; we will never know. We would have to keep reminding him to be quiet, be careful not to wake your little brother. So many things that we should be doing, but we’re not.

Everyday is full of moments, where we are stuck in a time, a time where life stood still. The only way I can explain what it is like to live with losing a child is like being on a train. You can see life, almost reach out and touch it but you have to mind the step. There is something permanent between you and it. Sometimes you sit, motionless from behind a pane of glass, taking in all that is going on around you, sensitive to your surroundings, hyper-sensitive, noises, colours, movements, proving all too much. Other times you sit back and watch it whizzing by, knowing that you can’t get off, you are in transit, your world is moving, but you are stationary, perfectly stationary. I feel as though I am a ghost. I can see in, but people can’t see me.

Sometimes I’m strong enough to stand and get off at the stations. Step over the gap. Feel the rush of air in my hair. Be a part of life. I think taking part gets easier with time, I suppose more experienced with the grief. Perhaps recognising your personal cues, noticing subtle changes in your mood, your ┬ámotivation, knowing when rough times are coming, eventually you learn that your train is waiting, all you have to do is get back on it when your knees buckle. And they do buckle. Sometimes I have a bad week, and I put one in front of the other just for one solitary ‘good’ day.

Every time I sit in front of a camera and talk about William, about his death, about how much it hurts to miss him, it takes days, sometimes weeks of sitting in my carriage on that train to prepare. My eyes shut, feet firmly rooted to the floor, preparing. Preparing to relive, preparing to reignite that fear, those emotions, and go ‘there’. But it doesn’t quite compare, it doesn’t even come close to what I had to endure today.

You know when you have children and all of a sudden a switch is flicked over, it is no longer about you, but this tiny, fragile, human being you have created, and the FEAR. People try to explain the fear to you, an emotion like no other, a feeling of complete helplessness, like you are living in constant dread that something bad is going to happen to your little bundle of joy, every time the phone rings and it flashes up ‘nursery’, you fear the worst. Every time they step outside, within 3 seconds you have visualised every possible option of what could go wrong. The cars, falling debris, is there anything they could potentially trip on, eat? anything? maybe a piano might fall out of the sky and land on them? irrational, I know, but we have all been there. That feeling of not having total control over our little ones, even worse knowing they have no fear, leaping around the front room like they’re in mortal combat, but what we see is mortal danger. Now imagine all those fears being realised. That moment, when completely out of your control, their life is taken, snuffed out in one single heartbeat, not because you put them in harm’s way but because those that were supposed to relinquish the danger, increased it. Because their incompetence led to your child taking their last breath at the tender age of one. That fear is no longer a fear, but reality.

Now I know, I know what it is like to live the unimaginable, the pain that just cannot be expelled. I know what it is like to live without my child, I know what it is like to have stretch marks, but no baby to cradle in my arms. I know what it is like to go in to hospital with my baby and to walk away broken, leaving my baby behind. I know what it is like to wake every morning, knowing I will never see, hold, touch, smell, kiss or soothe my baby to sleep ever again. Ever.

Now imagine living like that and then adding another baby into the mix. All the fear that I experienced first time round with William is now tangible, it is no longer fear to me but a plausible, possible outcome. It is almost an expectation. In 52 days Arthur will be 382 days old, the age William was when he lost his life. I feel completely and fully committed to the belief that Arthur is on loan, that in 52 days he will be taken away, and it is soul-destroying. No one can convince me otherwise, no one can assure me that Arthur won’t die, no one has that power. No amount of counselling, EMDR, mindfulness, yoga, meditation, writing, talking or other form of therapy will make me feel any differently; and if Arthur reaches 383 days old I am of the belief that it is borrowed time.

Arthur is now the same size that William was, he sleeps in the same positions and like most infants is living with an insufferable cold. Par for the course when they start nursery, multiple children together is like a germ fest, but you can’t stop them living, socialising and growing up. Arthur has been suffering with a cold for nearly four weeks now. It has been worse at times and I have taken him to the doctors on several occasions. I knew that it was viral and not bacterial but I feel reassured knowing that his throat, ears and chest were clear. Towards the end of last week his little cough had become worse but during the night he became a little wheezy, and the next morning it seemed worse so we called 111. We saw a doctor and he was prescribed antibiotics. Arthur napped at lunch time but when he woke he just didn’t seem himself and he had a temperature. We called 111 and they sent a paramedic. This paramedic determined based on Arthur’s observations that an ambulance should come to take Arthur to hospital. Arthur’s temperature was 39.1c, he started to vomit and his respiratory rate was double what it should be. He was just not himself at all.

I was already panicking and experiencing flashbacks from the paramedics being in our front room. The big, bright yellow wagon parked outside, just like when William died, blocking the road; a paramedic car too. It just haunted me. The equipment, the vocabulary, the dark green uniform. I knew Arthur was not seriously unwell, I knew he was ‘safe’ to some extent, but what I wanted was for them to go and revive my other baby, who I imagined to be lying on his nursery floor, dead. it took all my might to convince myself he was not there. The mind is a dangerous and powerful entity. You may not see it on the outside but if you could just see inside you would see torment.

Every single second of being conveyed to hospital in an ambulance was agonising. Cradling my little baby, one who looks so similar to William, sat on the same trolley’s, in an ambulance that looked identical, on the same route, the same visuals, the same sounds. As I sat there cradling Arthur I closed my eyes, and I smelled his hair, the same, sweet strawberry smell as William. Knowing that Arthur was safe, I wished and prayed so hard that the tiny little poorly baby I was cradling was William, that he was alive, that what happened on the 14th December 2014 was a nightmare and I was now waking up. But it wasn’t.

I will never wake up from that nightmare, but what is certain is that everyday there are triggers; reminders that force me back there, and I don’t want to go back there, but I have no choice. You see, living the way I live isn’t a choice, it is something that I must bear, I’m fed the tools with which I must rebuild my life. It is not how I want it, nor how I planned it. It is something that changes daily and no matter how much I fight grief I cannot change it. I must embrace all the changes that each day brings. I feel safe in the knowledge that with every step I take it is one step closer to my little William.

One Step Closer…

My Impact Statement

My sleepy boy

My sleepy boy

My dreamy boy

My dreamy boy

I have written down what I want to say so many times but none of it seems right and I’m sure there’ll be things I don’t say but wish I had, the truth is, there are no words adequate enough to describe the intensity of loving William and no words sufficient enough to capture the pain that we feel. William is loved beyond words and missed beyond measure. A pain that we shouldn’t be feeling, a cruel life sentence that should never have happened, today is day 178 of that life sentence. It doesn’t get easier, time doesn’t heal but only serves to widen the gap from when we last held our dear little boy.

We cannot cope missing William, knowing that we are never going to see William again is crippling. All I want is to be with my baby again, and there is only one way that is possible. I do not feel free, I cannot escape from my thoughts, what is now my reality. The clarity of mind that keeps reminding me that William is not part of the world I exist in today. The life that I am forced to be part of, I feel stuck, trapped and suffocated. The cruel joke of the world is that we are still here and William isn’t. It just feels like we are viewing life through a window, seeing it, hearing it but not actually in it. I no longer feel I belong anywhere without William, not even in my own life.

The magnitude of William’s absence is overwhelming and felt by all, even those who did not know him. From the moment we lost William, life has been split into the forever proverbial “before” and “after” William died. I don’t want to escape from this unbearable pain, I know that to feel this much pain is to know this much love. We are exhausted, physically, emotionally, and mentally, the anxiety and flashbacks are debilitating. Losing William has destroyed us, to lose him was to lose myself. In that moment, my soul died too and what’s left behind is a broken shell. We feel like we’re stuck in purgatory, somewhere between heaven and hell. Trying desperately to find another reason to forge through this intolerable pain, an impossible task. Paralysed by our love for William.

At 8:47am on the 14th December, the paramedic turned to me and said “I’m sorry my love, but he’s gone”, I didn’t understand why they couldn’t make him better and I didn’t understand why they stopped trying. William was gone, my little boy was gone. His lifeless body laid on the floor where we had given him CPR. He looked uncomfortable, he looked vulnerable, and he was stiff, I scooped him up and cradled him so close and I begged him to wake up, I pleaded with him to wake up, but he didn’t, he was gone. I knew he was gone, the moment I opened the curtains, William’s eyes staring straight through me, they cut me in half, it was with those eyes that William loved, I ached to hear the words “mummy, I love you” but he never got the chance. William expressed his love in everything he did, but his eyes said it all. Eyes that were so trusting. William trusted me, trusted me to feed him, trusted me to love him, trusted me to put him first, trusted me to be his everything as he is mine, trusted that he was safe with his mummy. The only thing I couldn’t do was make him better, If I could have, I would. That job I had no choice but to rely on the professionals, those that are trained to do so. As William’s mum it was my job to take him to the doctors when he was poorly, and I did, multiple times. I trusted that the examination and diagnosis at each visit was correct. Like William trusted me to look after him, I trusted them. We feel William was let down in the cruelest way possible, and William has paid the ultimate price. There were multiple opportunities to treat him, but we were always assured “it’s just a cough” “it’s just a cough” how can anyone be so wrong? Within 12 hours of speaking to a doctor, our little boy was dead. We were told not to worry, assured “it’s nothing grisly”, I don’t think you can get any more profoundly grisly than sepsis, how was this allowed to manifest, that is what makes this reality so hard to believe. Every morning we get up to the realisation that William is gone. He suffered so unnecessarily, he died in his bed, on his own with his little reindeer, in the place that he should have been safe. those last precious moments he was on his own, what was he thinking, my little baby, he knows what it feels like to die, how is that even possible. I so desperately want my little boy back, I need him back, I want what I can’t have, what has been taken away and that is wholly unacceptable.

In the 382 days that we were blessed with William he made more of an impact than most would in a lifetime.

William was born on my birthday, the most precious gift. After getting used to the idea that we wouldn’t be able to have our own children, William was just meant to be. We were like any first time parents, nervous and apprehensive but it soon became obvious we had nothing to worry about. William made it easy. Our little Grumpus defined me as a person, as his mother, he defined us. He was and always will remain the foundation of our family.

William was his own little person, such a happy, secure and most of all loving little boy. I would often sit and watch him in disbelief that he was actually mine. He was perfect, I can close my eyes and feel his delicate touch, to embrace him and feel his soft skin against my own, feel the weight of him in my arms and to breathe in his beautifully sweet smell when he would bury his head into our neck. When we put William to bed we couldn’t wait to be woken by his sweet little babbling, he would be all sleepy, not quite awake and wanting to snuggle. He’d grab his little reindeer, not wanting to leave him behind, he’d pop his thumb in his mouth, nuzzle into our neck and come into our bed for cuddles. We are crushed that we will never have this again.

You see, William was a clam, patient and content little boy. To sit with William and teach him shapes and colours, to then sit back and watch him learn, to watch him think, to watch him concentrating, to watch him working things out for himself, was a pleasure. Nothing was more fulfilling than to watch his confused little face turn to joy when he mastered something new, so pleased with himself. He would immediately turn to find you, his face lit up as it met yours, the happiness reciprocated, our pride encouraging him further. His infectious smile that would never fail to make you smile right back, a smile that injected happiness into any room. We were in awe of him. These treasured moments were priceless, memories that are irreplaceable. William filled us with a sense of freedom, taught us love with no boundaries, that’s limitless and endless. He was my one constant, we never knew love like this existed. William was our future, to hear his first words, to pick him up and dust him off when he fell over, to teach him to ride a bike, to watch his first nativity, to watch him fall in love, to be whatever he wanted to be, as long as he was happy, all of this is gone, William robbed of his future and us robbed of ours.

William’s death was so needless and unnecessary, nearly 26 weeks on, almost half his lifetime, we remain a family torn apart by grief, struggling to comprehend life in William’s absence. No-one knows a child better than his parents, no-one knew William better than us, a parents instinct should be listened to, we should have been listened to. We can only hope that no other family has to suffer the unrelenting agony of losing a child in these circumstances and that changes bought about by today’s outcome can prevent further deaths and improve the practice of all GP’s, 111 and out of hours services.

There is no outcome that can ease our pain, we have to live the rest of our lives knowing William’s life was taken from him, knowing that he should be with us and knowing that he won’t be coming back. William was a blessing and we are forever thankful that we can call him our son.

William’s Inquest

Hearing from the expert paediatrician professor Peter Fleming that my darling little William could have been saved is the hardest thing I will ever hear. My little boy, gone for nothing xx

A Mother Without a Child