Grateful beyond words…

I miss you so much right now. I have found myself more teary recently. The smallest little things just set me off. I suppose there has been so much drama over the last couple of weeks but drama is an understatement. On that Monday afternoon when your little brother suddenly became quite poorly. We had been managing his temperature at home over the weekend, but on the Monday he seemed ‘different’ when he woke up from his nap. I sat your little brother, who was 10 days away from the age that you were when you died, on the sofa. I looked at him, and he looked through me, vacant, haunting eyes. I recognised those eyes. They were your eyes.

I called for help. An ambulance was here before I’d even finished explaining the situation. Your little brother was grey, he looked, well, lifeless. His little chubby legs were becoming mottled and they were cold despite his high temperature. He was shaking, not shivering, but more like strange little twitching. The paramedics assessed him, and found he was hypoxic, his oxygen saturation levels were low and his breathing was irregular. They took your little brother off me to carry him to the ambulance. As I sat there cradling my tiny, but alive little boy in the ambulance, all I could see was you. Me cradling you in the back of ‘that’ ambulance. There was no rush, no sense of urgency, no life to save. This time was different, the lights were flashing, if for one second my mind drifted away from the present and into the morning of the 14th December 2014, it was quickly jolted back to the very vivid present. As we raced through the traffic, your little brother was not very respondent. As I held onto him tight, whilst trying to keep his oxygen mask in place, I prayed, not to God, but to you. I begged you, begged you to look after him. I could feel my breathing accelerating, my chest tight and my muscles tensing as we were rushed through to resus.

The walk from the ambulance to the resus bay was a blur but as I rounded the very straight, dark blue curtain I was there. There, right where they examined you. The very same bed that I watched you, my lifeless little boy being handled in a way that you shouldn’t ever have been. I just wanted to scoop you up and run away with you, I imagined it, I could feel the wind in my hair, I could feel the cold air making my tears feel like ice on my cheek, I looked down to you, in my arms, mine. Stood there in that resus bay with so many people around you, I felt so separated from you. So very, very helpless. There was simply nothing that I could to make it better. Now I was stood at the end of the very same bed watching history unfold right in front of my eyes. But this time was different, there was a sense of urgency, there were people reading out observations to the team, there were nurses trying to take your brothers blood, there were people comforting him, there was quite simply, life. This time there was life. As I stood there, I backed away, I felt like I was stood behind a screen, in some kind of viewing parlour, looking in, watching, observing, but removed. It was a looking-glass, I was so helpless. I could sense myself crying, I could sense myself making noise, but I couldn’t hear it, “no, no, no, no…” was coming out of my mouth on repeat, but I couldn’t hear it. It was all slow motion, desensitised to my surroundings and the situation. I couldn’t lose both of you. Then I heard it, the word I knew was coming, the word I dread to ever be used in any context other than a speech I give about you. Sepsis. We are treating Arthur for sepsis.

That awful, crippling word brought me to my knees. As someone bought me a chair, I started speaking, I could hear myself, focused solely on Arthur, my eyes fixated on his tiny fragile little being, “this is Arthur, it is not William, they are different, Arthur is not William, they are different…” over and over. Somehow, from somewhere I removed myself from the engulfing PTSD, I removed myself from the most traumatic day of my life and forced myself into the present. Arthur was placed in my arms. They carried on working around us, poking Arthur doing different tests, but all I could feel was warmth. Something that was missing from Sunday 14th December. Arthur was alive. He was going to be okay, he was going to be okay, I kept telling myself. You, William, answered my prayers. After four days in hospital, Arthur was allowed to come home. He was okay.

Today on the 14th October 2017 Arthur woke up.

An insignificant and non-important statement to most, but today Arthur is 383 days old, one day older than you ever were. A day that instead of waking up, you took residence in Heaven. Last night I constantly lay listening to Arthur breathe, the sweet sound of his snoring, for once grateful that he is slightly bunged up so I can hear him more clearly. As the minutes and hours ticked by. The light crept in to the morning, day 383 begun. Arthur was still breathing, stirring, waking. I did not have to force myself out of bed, I was not disappointed that I didn’t get a lie in. Arthur was alive. He is now older than you ever were. How can that be? You will always be older, but now in some strange parallel universe, Arthur is older than you. Today the emotional hangover kicked in. A day full of what if’s, a day full of why’s, why you? why not me? why did this happen? and a day of eternal thanks. When I plucked Arthur out of his cot this morning he placed his forehead on mine, his hands on my cheeks and cuddled my face. Somehow, in his own little way, he knew, “mummy, I’m here, I’m here, it’s okay”.

Today like most parents with small children I spent the day tidying up after Arthur, cutting food into impossibly small pieces, wiping snotty noses and little bums. And with every movement I was thankful. Thankful that I have a little boy to cut up food for, a little bum to clean, a little snotty nose to wipe, a chubby little face to kiss and an impossibly wriggly little body to cuddle. These are the things I miss about you William. What would you be doing now, would you be making a mess for me to clean, would you have a snotty nose, some things are left to the imagination. For what are milestones for Arthur are now imaginations for William.

So today as Arthur reaches a milestone that William didn’t reach and will never reach, day 383. Be grateful for the small things. When your children want that extra cuddle, give it to them. When they make a mess, remember it’s their mess. When they test your patience, remember they won’t forever. When they cry in the night, remember it’s better to be awake to a crying child than crying for a child that can no longer cry. Remember that life is for living, that tomorrow is not promised.

Today I am grateful simply for the fact that Arthur woke up.


www.justgiving.com/williamoscarmead

I just want to highlight that there is no link between William and Arthur having sepsis. It is sadly an horiffic coincidence, any can have sepsis.

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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  motivation, 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…


www.justgiving.com/williamoscarmead

PTSD and me

Today as I stepped out of bed on day 550 without you I looked out of the window for some inspiration. I didn’t find any.

There is no one day easier than another, I am yet to wake up any morning and think, well I don’t miss you as much today. My thoughts are always with you. My tears are all for you. I suspect you can see mummy from the little white fluffy cloud on which you now reside; but I know if you can see your mummy you’ll also know that she can’t help it. I have long since given up thinking that time heals, that one day I’ll come to terms with losing you. Simply, I won’t, how can I?

More than ever I can’t cope with knowing that I couldn’t save you. You didn’t deserve this. You deserved the world. You deserved to be happy. You deserved the chance to live your life how you chose. Your life so cruelly taken away from you by others. Maybe that day they went into work with something on their mind, perhaps they were tired. But you gave your life for their mistakes, there is no bigger sacrifice, and if mummy could she would give everything for you to have breath back in your broken little body.

Sweetheart, I think that some people think that after 550 days I should be functioning better, that I should be capable of getting through a day without breaking down. Or that perhaps I shouldn’t be as vulnerable and fragile as I am. I don’t think anyone will ever understand the path that I tread. It is not a path that anyone else can say they have been on, after all, only I know my pain of losing you. Daddy treads his own path, others tread different paths. But no one treads mummy’s path.

The moment that mummy heard those words ‘I’m sorry my love, but he’s gone’ my life changed irrevocably. There was no going back, no going back to the normal life we had created together. No more cosy morning snuggles, no watching you point your toes and jiggle your little feet when you are excited, no sneaking into your room in the night to stroke your silky soft hair. Mummy used to do that, you probably knew that, but you let me, because you know mummy needed to. What I would do to just hold you one more time.

Some people don’t understand that by the time I have managed to dress myself in the morning, I have already been awake crying for several hours, if I’ve been to sleep at all. Some people don’t understand that some days fast movement, lots of noise or colour gives me a sensory overload. Trying to explain to someone why I’m so hypersensitive is virtually impossible, let alone trying to explain how the flashbacks cripple me. You see people don’t understand PTSD, people think I should stop thinking about it. How can I? Could they? I don’t think so, not if they had witnessed losing you. I can’t stop thinking about it, I don’t have a choice. PTSD isn’t simply a memory recollection, something you can summon and then change to think about something completely different. When my brain decides, I will re-live the moment that I found you again. Frozen in bed, not being able to move, paralysed by fear, in my mind, you are next door, in your cot, passed away. Somehow the light, the sounds, the smells are the same. It is that morning again. I can’t remember how many hours I sat cross-legged on your floor, hands tightly gripping the bars of your cot, head pressed against the bars so hard there were two lines on my forehead, staring, my eyes pleading with the spot where you took your last breath, pleading for you to not be there, not like that, not again. I think it took 6 hours for my brain to realise that you weren’t there. For those 6 hours in my mind I had been staring at your broken little body. But of course you weren’t there. Try telling my mind that. It is like being trapped in a nightmare, not able to wake up because of course you are already awake. Being suffocated by the nightmare as you have no idea that it isn’t real or that it isn’t really happening again.

PTSD is so debilitating. I don’t get a choice, I can’t just not think about ‘it’. The trauma of losing you so vivid, mummy is forced to re-live losing you all over again, I can’t help it. It’s not just a memory, it’s not something that I can distract myself from. It is not something that I can explain to people unless of course they have experienced it. They do not understand that one minute you are seemingly ok and confident to the next minute being scared to exist in what is a co-dependent bubble. And when it strikes it is like having a wound re-opened, and left constantly open. Social situations are a no go area, draining, emotionally exhausting, overwhelming, frozen and incapable of functioning. In a nutshell PTSD is not being able to differentiate in your mind the past, the present and the future.

I wish people would be patient, I wish people would not judge. I wish I didn’t have to keep justifying how and why I feel like I’m in a sinking abyss. No one will ever understand the pain of losing you, a life sentence, one that will not be over until I take my last breath and we are together again.

You will never know sweetheart how much mummy needs you. You changed my life, mummy is so blessed that you picked me. I sit here looking at your photo’s, your captivating smile, your sparkling eyes coming alive from every photo. You probably see mummy touch your photos, hoping that she can feel you chubby soft skin once more; but I never will. I remember the last time I ever held you. I traced every inch of your little body with my finger, my eyes closed, assigning every little fold and crease to memory. Even then, twenty days after you had passed away you were still perfect. God, mummy misses you so much. People just don’t get it. It just does not get easier.

So, my message to the lovely people who I encounter every day in my life, please don’t judge, don’t criticise, be patient, be calm, be respectful and most of all, give me time. I estimate it will take a lifetime.


www.justgiving.com/williamoscarmead

The best apology is changed behaviour…

Those days after William died, the day when I kissed William’s soft skin and whispered in his ear ‘please tell them what happened my darling boy’, the days spent waiting, wondering, hoping they would find something, something that would tell us what had happened to our beautiful little boy. As I would sit staring out of the window ruminating about my little boys broken body being transported up-country on his own to be operated on in a procedure that should be reserved for adults only. Wondering if he was ok, wondering whether they would look after him, wondering how the pathologist found the strength to do that job. I was told it would take a while for the post-mortem results to come back but just five days later William was returned home, and we were given preliminary results. Something we hadn’t anticipated, after all ‘SIDS?’ had been mentioned on William’s medical record. Something I later found out. But I knew, I knew that William didn’t just die. I was right.

In those five days I had pulled my hair out strand by strand and scratched my skin until it bled, anxiety winning the most debilitating war, whilst I waited. Can you imagine being in a position where you beg God, where you hope, where you wish that your child died of something so rare that no-one could have spotted it, that the 382 glorious days we were blessed with were borrowed time, that William would have been taken anyway. Can you imagine feeling that way? Toying with the possibilities in your head and deciding on one that somehow you might find easier to live with. But no, William didn’t ‘just die’, he didn’t die from something so ultra rare that he was no longer suffering from, William died from something common, sepsis.

When the pediatrician came and sat on my sofa, my pleading eyes, begging her to tell me something I could make peace with, but she didn’t. She told me that William died from something that doctors should be looking out for. Not long after, I spoke to the pathologist himself, he told me that William’s little chest was full of viscous, purulent fluid. Why didn’t the doctor pick this up? The one who listened to William’s chest just before he died. The one who told us his chest was entirely clear.

From the moment William was taken from us, from 08:47am on the 14th December 2014, from the moment the paramedic uttered those words “I’m sorry my love, but he’s gone” the questioning began. A constant reel of questions on repeat. In my head I would answer a question, but then immediately pick apart the answer and start the process again. That hasn’t stopped, what I do know is how William died, but what I will never be able to answer is why? Why William? William was well looked after, and loved beyond comprehension. I will never know why those doctors involved in William’s care made mistakes, I will never know why we, as parents weren’t listened to.

Very soon after William died it was obvious that things had gone desperately wrong with his care. Within a few weeks it was already apparent that the process after a child dies had flaws that are simply unacceptable. We were left to approach the doctor – the same doctor who had let William down – for help. Can someone help us? Is there someone I can talk to? Appointments that required us to dress, drive miles to the doctors, and sit in the very room where William was sent home rather than being referred to the hospital, and take advice from the very doctor who had examined William. We were offered 6 sessions of counselling. SIX. Of course it wouldn’t start tomorrow it would be at the earliest, next week. As I sat down for session number one, I was reminded that this would be the first of six sessions that lasted approximately 50 minutes. At this point I knew I was on my own.

We had what is called a ‘rapid response practitioner’ someone who you can liaise with. Someone who would tell you what was happening, what would happen next and what to expect. Any bereaved parent will tell you, this is virtually impossible, the waiting is excruciating. The not knowing is equally as painful as knowing, but the parental instincts inside me told me I had to know. So the journey begun. The journey of looking at William’s death objectively.

I’m not really sure what people think, those looking in, those not immediately involved with William, or indeed following our story about what it takes, but it is not a case of filling in a complaint form and sending it off to the NHS. I’ve not written a blog for a while. Mostly because once I sit down, I just want to be left alone with my own thoughts, not because I’m feeling better, I’m not. You see, what I’ve had to endure these last 520 days are something I do not wish upon my worst enemy. I have lost count of the meetings I have attended, conference calls I’ve dialled in to, I lost count of the emails I sent at around the 600 mark, the departments I’ve had to phone, chase, follow-up, push, and persist for them to do what they are supposed to do without me asking, the doctor’s surgery, SERCO, South Western Ambulance Service CEO, the Kernow Clinical Commissioning Group MD, the Child Death Overview Panel, the Coroner’s office, the pathologist, numerous pediatrician’s, rapid response practitioner’s, NHS England South, NHS South South West and that is not an exhaustive list; and that is before the inquest even begun in June 2015.

After the inquest, when the actual investigations into Williams death started was when the real journey started. I don’t think anybody really knows exactly what it has taken, just Paul. I have read through the transcript of the telephone calls I made to the health professionals in the days leading up to William’s death, I heard his little voice in the recordings, I’ve listened to the 999 call I made when William died, I’ve read and re-read William’s medical records and the witness statements, I have lost count of the amount of times I’ve printed and annotated William’s post-mortem report, I have analysed NICE guidelines, the British Medical Journals and I won’t even list the different Royal College guidelines, I have contacted and spoken to many highly respected medical consultants in microbiology, thoracic, cardiology, infectious diseases, pediatrics, and pathologists, oh and the genetics team. I have studied case-law and how this is applied to medico-legal reports. I have studied and learned medical terminology and what it means and how it is applied. I have liaised with the NHS 111 pathways team including the director, the Director of patient Safety for hospitals at the CQC, I have seen, used and experienced the algorithms used by NHS pathways, I have had to deal with the Judicial Conduct Investigations Office, the council and of course NHS England, I won’t continue.

What is the purpose of me telling you some of what is involved? I’m telling you this because when I set out to get William the justice he deserves I wanted to do one thing, and one thing only. I wanted to make sure that those involved in William’s care understood that my son’s life, William’s life is more important than any system. That despite the fact he couldn’t talk, his voice mattered and still does, and as William’s mum it was my job to ensure that his voice was heard. After 520 days we have finally received a full written apology from NHS England on behalf of those organisations involved in William’s care. We have had apologies from each party involved, and of course from the Government. I am exhausted, I am weak, I didn’t have any strength to begin with and I certainly don’t have any now, I am physically and emotionally spent. I have fought so damn hard, and although you might think I have succeeded, I don’t win anything, there is no reward, William doesn’t come back, he is still gone, and I am still left wondering why.

“The RCA panel / team are indebted to William’s parents for their persistence in ensuring that all of the facts were understood and that lessons would be learnt, and for their understanding approach in the context of devastating circumstances for them. The parents of William do want an apology from the parties and organisations concerned. SWASFT has already issued a formal apology to them. NHS England will give an overall apology to them on behalf of all the NHS organisations involved. The OOH doctor formally recorded his apology at the inquest. One of the GP’s from the practice has communicated in writing an apology to the parents and a private meeting between this GP and mum has also taken place…a final conclusion…the panel have concluded that if William’s parents had not been involved as openly and fully…the full extent of the contributory factors and learning would not have been identified…I want to offer this as a written apology on behalf of all of the NHS organisations involved in William’s care.”

Never underestimate the power that a mother’s love has. This is all driven by love, by William, by my darling little Grumpus.


www.justgiving.com/williamoscarmead

Just imagine…

Why do some days hurt more than others, well after all, today is no different from yesterday, I woke up and William’s big smile still didn’t greet me. Mother’s Day hurt more than the day before it or the day after, because that day is a day that bereaved mother’s like me are full of imaginations not busy making memories. Paul gave me a mother’s day card, a beautiful photo of William and me on the front, lot’s of love from Pickle it reads. But William didn’t give it to me. William didn’t scribble inside. William didn’t make it. As I ate my breakfast in bed, William wasn’t there to help me eat it. William was simply not here, and he never will be.

After having a coffee in town we went into a shop to look at mother’s day charms for my bracelet, all of them lovely, but you know I felt odd, stood there choosing a charm ‘beloved mother’, ‘special mum’, when it should be William choosing it for me, but he’s not. The charms on my bracelet, all memories, a little pram, bought by William’s grandparents when he was born. A heart that breaks in two, to reveal ‘mother’ written on one half and ‘son’ on the other, bought for me by William and his daddy on our first joint birthday. Only 17 days later, William was gone. Shortly after, an angel wing, a little boy, and William’s foot and hand print charms adorned my bracelet. I didn’t buy a charm, I couldn’t. That should be William’s job.

As I sit here writing this, my chest hurts. It really hurts, when you think that you’ve cried all the tears you have, more continue to flow. I remember shortly after William died I was dehydrated, forgetting to drink, crying so much, despite this, the tears would still come. Stinging as they stream down my face, eventually they would dry hard to my cheeks. Too exhausted to cry anymore.

I’ve been quite quiet recently, many of you will have seen William and I on television, heard me on the radio and seen William’s little photo in the newspaper, but what you see is a face. Behind the camera, behind closed doors, I haven’t been well. I’m currently struggling to work, going out is a struggle, getting out of bed is a struggle. Living is a struggle. I feel totally empty. Motivation comes only in the form of continuing the battle to fight for William’s life not to have been in vain. Grief is real, trauma is real, this life sentence is real. You see as much as William lived, he died too, death is so real, and death is so very vivid, especially William’s.

It is not just something that happened, something which you can move on from, it is not something that you can accept and let go of. It is not a choice. My waking hours are spent tormented by William’s last hours, by William’s last moments in his home. No matter where I look, right there in the forefront of my mind is William’s broken little body, his little hand suspended in the air, despite the CPR, it didn’t move. William was truly being held tightly in death’s grip. I remember asking the paramedic why it wouldn’t move. He said very calmly, ‘shortly it will, rigor comes very quickly after a child’s dies, if at all, it will be gone soon’. He was right, by the time I had carried William downstairs I was able to hold his hand once more. You see I don’t get a choice, these ‘moments’ in time can take up days and months of my life, and they do. Paralysed in their grip, they are debilitating.

When you lose a grandparent or a parent, you are sad, people are sad for you, but you are able to talk about the happy life you shared together, the longevity of their life. The great world events they witnessed, like seeing man walk on the moon. Somehow it seems ‘ok’. They’ve had a life, they’ve had a chance, the natural order that we are used to is performing its duty. After all, we are all born to die. But we are not all born to die after 382 days. It is just so wrong, so very wrong, there is nothing that anyone can say, believe me they try, to bring you crumbs of comfort. God doesn’t pick the best. He’s not in a better place. The best place for William is with his mummy and his daddy. God didn’t take William, substandard care and science took William.

People are kind, compassionate and they mean well, and I never turn away from someone who so desperately wants to bring you comfort, but simply doesn’t know how and doesn’t have the words. Simply put, they just don’t know. And I’m glad they don’t know, I’m glad they don’t understand, sadly too many of us do. Sometimes people say, I know how you feel. No, you don’t. Unless you have lost a child, a child you knew, a child with whom you already had an unbreakable bond, a child who died because of others incompetence, no, you don’t know. It’s not comparable. It’s not comparable with the death of your grandparent, it’s not comparable with the death of your dog, or the dissolution of your marriage or a breakup. No, unless you have lost a child, you will never know.

You completely lose sight of the person you once were, the person you had become, the person your much-loved child allowed you to be. That person is not just gone from sight, that person is gone forever. As much as William’s birth defined me as a person, William’s death re-defined me once more. To be forced to live on despite no longer knowing who you are. I just don’t know who I am anymore, I don’t recognise myself. I loved the person that I became when William was born, but she died with William. What’s left is a shell, a shell that is forced to live in the shadow of the person I used to be.

What is every parents greatest fear, is my reality. People cannot imagine what it is like to lose a child, because there is nothing to compare it to. I know what it is like to realise your darkest fears. I know what it is like to go and wake my child in the morning, and for him to have fallen asleep forever. I know what it is like to give my child CPR, already knowing it won’t make any difference. I know what it is like to lay next to the body of my child, cheek to cheek, and beg for him to wake up, knowing he never will. I know what it is like to pick the last outfit my child will ever wear. I know what it is like to cuddle my child knowing that I will NEVER touch him again. I know what it is like to watch the curtains close around his tiny white coffin. I know what it is like to be told, that my child should have survived, had others done their jobs properly. I know what it is like to fold his little clothes away, never to be worn again. I know what it is like to miss my child so desperately, the closest I can get to him, is to smell his little teddy, and be lucky, LUCKY, if it still carries his little strawberry scent. I know what it’s like to want to go home, but knowing that place is with William. I know what it’s like to not belong. I know what the cutting pain feels like, knowing that despite everything I did, I couldn’t protect my child. I know what it’s like to sit and look into the eyes of the doctor that could have saved my child, but didn’t. I know what it’s like to hear his apology, knowing that he would be going home to his children, and I wouldn’t be. I know that HE will never understand the depth of destruction that he had a hand in. And I hope he never has too.

But I know. I really know.


www.justgiving.com/williamoscarmead