I’m so so sorry mummy couldn’t save you

I don’t ever know where to start sweetheart. It’s been three years. Three whole years that we’ve had to live without each other. Three whole years since I last held your warm, squishy, strawberry scented little self in my arms. Three whole years since I got to whisper ‘I love you’ in your ear. Three whole years. How is that even possible, how have I managed? Simply, I don’t know.

The first year without you was complete and utter turmoil, total and complete devastation. My mind was like living inside a tornado, I was picked up and thrown around at the mercy of my thoughts. It was relentless. Last year I begun to find my feet. Sometimes I was able to put my feet on the ground and feel stable, sometimes I was able to communicate, willingly. I was learning. Learning how to live with your daddy, as two. Not three anymore. We didn’t choose that, we didn’t want that. A complete and total loss of control. I don’t like having no control. Last year I learned to go with the flow. Knowing that I was not able to swim against the riptide of grief, I had to close my eyes, turn on my back and wait for it to set me down again. This year has been strange; ‘living’ has been slightly easier, perhaps because your little brother has given us an injection of life again. He has given us hope, a future, he was one of the greatest gifts you ever gave us. But missing you has got so much harder. I find myself crying more often, I am often sad, not just for myself but for you. I often think about giving up and retreating, I think more often about the injustice of your death, your treatment and how cruelly your life was taken away. I’m struggling quite a bit at the minute, but I know that for every step I take, it is one step closer to you. I think that because the better days have become easier to bear, it makes the bad days even worse. It is like being on an awful roller-coaster that sometimes gets stuck, I have no choice but to ride it out.

I can’t remember what life was like before you were born. It seems like it was a different life. It was a life that I thought I was happy in, content with my lot. I couldn’t have imagined how wrong I was. When you were born you showed me what really mattered. I can remember watching you sleep, feeling utterly in love. A feeling that is difficult to articulate. You were part of me, I was you and you were me. You taught me a love that I didn’t know existed. You are woven into the fabric of my soul. When you died, I didn’t know what to do. How would I love again? How would I ever smile again, laugh, be happy? Life was constantly referred to as ‘before William was born’ and ‘after William died’ like our life had somehow been truncated and completely fractured.

 

Then you gave us Arthur. I was worried, more than worried. What would happen if I didn’t love him like I love you? What happened if I resented him, because he wasn’t you? But you knew. You knew I could be a mummy to two little people, you knew just what mummy needed, like your little brother, you heal my broken heart. I feel incredibly sad that I will never feel complete again, that wholesome feeling that cannot be bought.

You have taught me so much William. You have taught me complete kindness, you have taught me to be compassionate always, to be patient, to love fiercely, you have taught me that no matter where I go, you are with me always, I know that you are mine, and death cannot take that away from me. I cannot even begin to describe how proud I am of you. You graced this Earth for just 382 days, but you changed everything so profoundly. Your love feeds my determination, enables me to live, helps me to put one foot in front of the other,  gives me the strength to somehow fight to try to stop others from meeting your fate. Your love has changed so much, changed so many people, saved so many lives. I know you live on in the hearts of the many thousands of lives you have saved.

But you are not here and I just want you. I want nothing more than to hold you one last time. Forever is a long time. I know that you are just one breath away, one heartbeat, but I don’t know when I will take that breath and wake up with you. I wish I did. I wish I could put a big cross through every day, knowing that I was counting down. What I would give to make eye contact with you once more, to rub my cheek on yours, to feel you in my arms once more. My arms ache for you. They are heavy, my heart is heavy, my head is heavy. The living might get easier but the longing gets so much harder.

I remember the last time I ever held you, before I placed you in your forever bed and closed the lid, I kissed your forehead, I ran my fingers through your hair, I kissed your lips and I rubbed my cheek on yours, and I said “I’m so so sorry mummy couldn’t save you.” This hurts me, physically hurts me. I would do anything for you, and Arthur, give you both all you need, physically, emotionally and mentally, but the one thing I couldn’t do was make you better. I tried so hard to get you the help you needed, despite the apologies for your care, you’re still my responsibility and your life is in my hands. I failed you in the worst way possible. I let you down when you so desperately needed me the most. I tried so so hard.

I love you darling boy. You know. I told you always, I showed you always, they were the last words you ever heard me whisper, “Goodnight sweetheart, I love you.” You knew only love but three years on, the words that still sting me every single day “I’m so so sorry mummy couldn’t save you.”


www.justgiving.com/williamoscarmead

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What do I think about the NHS?

In the immediate aftermath of losing William before we really understood the true consequences of how and why he died, I searched everywhere for the answers. When I received William’s post-mortem report a paediatrician came to visit me to explain the content. At best this was a summary – it didn’t really tell me what I wanted to know. I wanted to know how the pneumonia had taken hold, I wanted to know how long the abscess had been in William’s lung and which lobe it was in and how this might have affected his airway. I wanted to know the thickness of the fluid that had engulfed his tiny little chest. I wanted to know the strain of bacteria found in his lungs, ears, chest and blood. I wanted to know how that strain of bacteria affected his organs. I wanted to understand. I didn’t want to be placated with answers that were formed in such a way that they caused less hurt. Tasked with a job that no one would envy, what those who were in direct contact with me didn’t realise is that there is nothing you, or any report could ever say that could ever lessen the hurt. Carefully constructed sentences, they don’t work. Summarised reports, also don’t work. They do nothing to satisfy my desire to truly understand. It is not as though I have just taken my pet to the vets and a simple explanation regarding their illness will suffice. My child died; but one thing that must be understood is that bereaved parents do not need to be spoken to in a way that you might explain something to a child. Subsequently I called and spoke to the pathologist; it was my only choice. Did I want to speak to the man who had handled my child’s body in such a cold and brutal task; no. But regardless, he had seen William, he had understood, he was the man who was able to extract all the answers I needed.

When William died at home, we were taken to hospital by ambulance. An ambulance that had blocked our one car road. Traffic was queueing, but the paramedics didn’t move their ambulance. They did not rush us. They went at our pace. They allowed me to carry my baby in my arms out of his home for what would be the last time. As we reached the road, faces of the waiting motorists said it all. A subtle head shake as they bowed their heads in respect. The paramedic sat in the ambulance and cried with me. A man, a father, a real person, how did he feel? The worst, most tragic part of his job. When we arrived at hospital they waited until I was ready to carry my baby into resus. They stayed with us until we were ready for them to go. We weren’t a ‘job’ to them. William was carefully cradled by them, and treated with the dignity he deserved. Their demeanour our only solace of feeling secure in a situation that had completely shattered our world. They allowed me the space to lay next to William on his nursery floor and scream, beg and plead with him to wake up, knowing full well that he never would. They were human. They cared and their compassion will never be forgotten.

The process, which is the only word that can be used to describe what happens after a child dies is distant, impersonal and one that does not fill you with reassurance.

Once the initial ‘buzz’ has faded and you are left with nothing but a post-mortem report that explains how your child’s world ended is the time when the most support is needed. Simply put, you don’t get it, not unless you come to the attention of the mental health team – which I did. It shouldn’t take an attempt on a life to get the help you need. Losing William isn’t a one time event that slowly gets better over time. Every day deals another blow. Another day when the sun rises but no hope comes with it. It doesn’t get better with time, in time I suppose you just somehow live with ‘it’. You don’t learn how to live with it. You just ‘do’. What other choice do I have? For me, I wasn’t satisfied. I knew that William shouldn’t have died – his post-mortem confirmed that. But I would now have to wait another 5 months before the inquest would take place. 5 months. 5 months is a long time in an average life but not in the life of someone who counts every day, hour, minute and second, each of which plays out like an eternity. I couldn’t wait, and I wouldn’t wait. So my journey of investigation started.

I started by familiarising myself with NICE guidelines, which further progressed onto the British Medical Journals – which I had to pay for. I researched studies that took me around the globe and spoke to specialists from all walks of life. But I begun by weeding out the direct contact details of the leading paediatric respiratory specialist in the UK. Everything had to be dealt with objectively; this was the hardest part – I mean how do you stop writing, talking and generally acting in a way where you’re not falling apart. I still don’t have the answer to that. Everything had to be neutral, unbiased, constructive and without blame. I wanted the truth not a played down version to somehow make me feel ‘better’, I knew I would never feel better. When the responses from the specialists started arriving in my inbox or answer phone the story became alarmingly obvious, startlingly clear and horrifyingly obvious – William should never have died. Most importantly I spoke to paediatric respiratory, microbiology and sepsis specialists. Consultants that have spent years working in one specific area. Not a generalised approach. As the inquest approached I had the facts I had sought. In the meantime the doctor’s surgery who had ‘treated’ William had opened and closed a Serious Event Audit. Which we hadn’t been informed of until we were sat in the inquest. How can the general practitioners have a meeting and close an audit when they have not even discussed William’s care and concerns with us, his parents? I would find it very interesting to see the results of their initial SEA, which was closed after no failings were found, to compare that to the NHS England report that later detailed failing after failing. When I first heard news that a SEA had taken place but I’d heard nothing about it, I really sat down to think how I would approach this. Because clearly if I rolled over and took everything at face value I would get the duty of candour but I wouldn’t have answers.

Who, what, when and where is the easiest way to explain an inquest. Who died? What did they die of? When and where did they die. To assist with answering these questions they bring in a paediatrician. Not a specialised one, a general one. So, immediately I was concerned. How can a general paediatrician who has no experience of empyema and pleural effusions confidently ascertain and answer questions in relation to William’s death. Simply put – he couldn’t. An expert in his field, but an expert in the areas that contributed to William’s death he was not. He was able to conclude that had William had different treatment to what he received it was highly likely that William would have survived. That was all we needed for an NHS England investigation to be opened. Unless you bring your own specialists at your own cost, you get what you’re given. The paediatrician that we had come to Cornwall 3/4 times a year for a day. That’s how many days they allow for inquests into baby’s deaths in Cornwall. We were allotted 2 hours for William’s inquest – it lasted 8. How the family’s waiting behind us felt I will never know.

With my knowledge about how investigations are handled I suspected it wouldn’t be an easy ride – it wasn’t. However, throughout the investigation I was involved in every step. Perhaps because I was a constructive nuisance, I was persistent, and I wouldn’t accept answers that I felt were flawed or were not relied upon with justifiable evidence. Eventually after several hundred emails, multiple drafts of the report, and numerous meetings, the report was finalised in January – a report that I was satisfied with and reflected the truth accurately. A report that highlighted multiple failings in William’s care, from each GP we spoke to, the 111 help line and out of hours doctors. Ultimately if William’s chest infection had been diagnosed appropriately and not as a viral infection – he would have received much-needed antibiotics. If that chest infection had been treated the progression of pneumonia would not have happened, leading to a pleural effusion, lung abscess and the sepsis that would take his life.

I have lost count of the number of times I have been asked to point the finger, or blame, or speak in a manner that puts the spotlight on certain people involved. I have no desire to do that. Those involved have apologised, face to face and they have been held accountable for their mistakes – after all – unless they were living in a cave during the first part of this year, it was a bit hard to miss the media. I have met face to face with the GP that last saw William for what would be the last time, the doctor that should have sent William to hospital. I have looked in his eyes and told him how Paul and I feel. I have been asked if I will take our complaint to the GMC, phrases such as “shouldn’t he be struck off?” For me, to take such action, would be to prevent him from potentially saving another life. Those that went into work each time they saw William didn’t act in a malicious way, they didn’t allow William to die on purpose. They are aware of their mistakes and the systems that allowed for those mistakes to take place are being changed. I hope that those involved in William’s care will not make those same mistakes again. Their index of suspicion has changed, their threshold for prescribing antibiotics has lowered especially when it is clinically evident they are required. Their awareness of sepsis has been refreshed in the most devastating circumstances. I do not want my life to be consumed by hate, anger, and regret. To seek revenge on those involved would not honour William’s memory in the way that he deserves; and it would not bring William back – and that is all I want.

There are faults that lie within the NHS – some of which I have encountered. Those of which I have I’m sure, I could think of a better way they could operate. I’m sure many of them could be rectified with an endless pit of money – which the NHS simply does not have. But the NHS is built on foundations of compassion by those who go to work to do good, to do their best to help a patient to feel better, make their lives easier and with dignity. There are some of course who do not, there are always bad pennies, but thankfully they are far and few between. I have had my own negative experiences with my own treatment and miss-diagnosis in the past. But if it wasn’t for the NHS I wouldn’t be here – twice my life has been saved. If it wasn’t for the NHS, William wouldn’t have been born. The NHS did not cause my son to die – decisions of specific people did.


 An eBook of 50 illustrations donated by 50 world class illustrators has been created in William’s memory. The book includes a foreword by me and Ron Daniels CEO of the UK Sepsis Trust. There is also a little game that you have to find William painting within the book. The book costs no more than £1.49 with all proceeds being donated to the UK Sepsis Trust in William’s memory. Please support us and buy your copy here.

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Williams Just Giving Page

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

Dearest William…

I hope you are ok? Mummy is missing you so much. Mummy is finding it so hard at the moment, it’s so hard to live without you. It has been 15 short months since you went to live in your new home. 15 months is longer than you lived for. 15 months isn’t very long in the context of a lifetime, well not mine at least. 15 months is long enough, what is 15 years going to feel like, or 50. I hope by then I’m with you. I hate this sweetheart I really do. I can’t remember the last time I was happy. The last time I really laughed so hard. I can’t remember the last time that I didn’t have a care in the world.

Losing you is the hardest fight that I will ever have to face, and it is a fight. The constant urge of wanting and needing to give in is prevalent. I am but one breath from being with you, but that feels like a lifetime away, well it is a lifetime. It is probably a good job that we don’t have on/off switches. I would have flicked that switch a long time ago, to end this part of my life in purgatory, and to spend the rest of my time, with you. Only with you. Well not just with you, but the two other little children, who sadly, mummy didn’t get to give birth to. See, you were so special, the little one that made it. I was honoured to share my birthday with you. You couldn’t get a more perfect gift than you.

You changed my life, you changed me as a person, you see I don’t think people realise quite how much. Before you arrived I had resigned myself to a life with no children. Growing up I was fiercely independent, I knew my mind and where I wanted to be. I grew up very quickly and left my childhood behind. Nanny and grandad worked so much, every day in fact, so I spent a lot of time with your great nanny, and auntie Joyce. But I learnt how to look after myself, I worked hard as soon as I was old enough, I did well at school, but I always did my own thing. I was the only one who really exerted control over me. When I was told at 11 years old that it was unlikely I would have my own children, I planned around it, I never grew up playing with dolls or talking about children. Even nanny and grandad didn’t think I was maternal at all, throughout my pregnancy I worried I wouldn’t be good enough, I worried that I wouldn’t know what to do, and I worried that I wouldn’t be a good mum. I remember being in labour and I said to daddy “what happens if I don’t love him, what happens if he doesn’t love me?” Daddy assured me that would never happen. Daddy was right (don’t tell him I said that), for once I have no problem standing on the tallest building and shouting, your daddy was right. My goodness I have never loved anyone or anything as much as I love you, and you loved me.

I knew how special you were, I knew then. I know now. I will always know. You were the one that allowed me to lessen the grip I held on myself, you allowed me to live with more freedom, allowing myself breathing space. You taught me there was more to life than working 24/7, you taught me that it didn’t matter if filing wasn’t done the moment the bills came through the door, you taught me that it didn’t matter if the washing didn’t get done, if the dinner wasn’t on the table at 6. I had spent the day encapsulated in our bubble of love. That is the power of love. A total force of nature. You taught me to be selfless, to be patient, to be compassionate, to love with no expectations. You taught me how to live. I owe my life to you. I owe everything to you. I gave you everything I have.

Being separated from you has ignited sheer desperation, a yearning and need that I cannot fulfill, manifesting itself as pain. The price I will pay for the rest of my life for loving you so much. That pain will only increase as the love intensifies and the ache in my arms becomes heavier. At the moment I’m not living peacefully, you probably know. You can probably see my struggle. The tears, the sleepless nights, the nightmares, flashbacks and hallucinations. You probably know that I’m not working. The visions of your broken little body now not just thoughts but tricks of my mind. I don’t like it. I can’t help it, your broken little body can appear on the windowsill as I’m sat in the office working, reflections in the mirror as I look at myself, or like the other night, I woke screaming, sweating, having had your little hand drop on mine, but not your plump, dimpled little hand that I used to hold but your stiff, cold hand, the entirely different hand that I saw after you had died. Why do I experience this, I don’t know. As much as I have experienced your waking moments, I also experienced your dying ones too. I experienced your death, and as much as your little life made the biggest impact on my life, your death did to. Your life happened, but so did your death.

What am I supposed to do without you? How am I supposed to live without you? All I want to do is come home, but I am ‘home’ but I’m not, my home is with you. We should have been making memories today, you would have been making me a card at nursery, you should have been here to see me open it, and help me eat my breakfast in bed that you and daddy made. We should have gone out and filled our day with more of those infectious smiles and laughed until our cheeks hurt, making memories. I should have heard you say ‘mummy I love you’ I should have been able to say, thank you sweetheart, I love you too. But I can’t, instead I’m sat in bed looking out of the window. I can see white smoke from the chimney across the road, make its way into the dark dusky sky, wishing I was a free spirit like the smoke, making its way into the atmosphere. I just want to be free again, but until we are together again, I know I never will be. I live everyday with the guilt, guilt that I couldn’t protect you, that somehow I didn’t do enough to save you. I hope you don’t blame mummy as much as she blames herself. The thought of letting you down, leaves me barely able to live with myself, but Daddy is doing his best to look after mummy’s broken soul.

William you allowed me to see life through different eyes, you allowed me to open my eyes and experience LIFE. William, you gave me love, a love that I didn’t know existed, you gave me love that was beyond my imagination. William, you made me a mummy, you made me your mummy, thank you. Thank you for picking me. It will always be you.

As another day draws to a close without you, another mother’s day without you, one more day closer to you. I look up to the night sky and like every other evening I say to you, goodnight sweetheart, I love you. Your mummy xxx


www.justgiving.com/williamoscarmead

 

 

 

Closure, what is that?

“Closure” – noun

  • a feeling that an emotional or traumatic experience has been resolved.

Amongst other more trivial definitions, this is the word that is commonly used when a non-bereaved person has no idea what to say to you. At least after the funeral you might get some closure, when the inquest has finished it should give you some closure, when you have received an apology from those that failed your son, you will get some closure. Erm, no. As it says above, closure refers to the resolution of an emotional or traumatic experience. Losing a child, losing William will always leave a gaping chasm in my life that can never be resolved, fixed or even emotionally explained away. The only way to resolve my profound hurt, is for William to be alive.

The last few weeks have been a real whirlwind, what you have seen in the news, the news papers, on the internet is a representation of the way my mind is bubbling all the time. It is everything that I have been hoarding in my brain for the last 14 months, and only a small proportion of it came out in one day. It was emotionally charged and overwhelming, something that I knew I had to do. A double-edged sword. I didn’t want to be there, but I did. I didn’t want to see William’s beautiful smiling face on the TV, but I did. The most unusual bittersweet sense of pride one can feel. I didn’t want to talk about what happened to William, there’s no getting round it, and having to revisit the most traumatic day and subsequent days of my life on repeat was a difficult task to endure. But it was a sacrifice. A sacrifice I made to see my pint-sized William make a difference. And what a difference he made.

As I sit here now, finally able to sit and write, the emotions that inhibit my body, from the pit of my stomach, the waves roll through my chest, my jaw clenches as the tears flow. I have barely cried these last few weeks, well, that’s not entirely the truth, I cry everyday, I cry in the morning, some days I am already crying when I wake up. I cry in the shower, in the car, at my desk whilst writing a memo. But, I haven’t cried so loud in the shower when no-one can hear me, I haven’t cried so hard I couldn’t focus and had to stop the car. I haven’t allowed my body to let go, to heave and purge the compressed tension that sits in my soul. Initially after the media frenzy I was simply so exhausted I would just sit and stare, and then I got scared, so scared that I held it in, knowing that when it came I would not be able to control it.

But today was that day, today I opened an attachment on an email, ‘re: William Oscar Mead, Deceased’, deceased. My son is deceased. My son, my only child, my everything is dead. It is so very easy to somehow objectify your actions, to travel to London, to go on the television and talk about the failings in William’s care, so easy to talk about what needs to happen, what needs to change, to educate people and help to raise awareness of sepsis. But I did that, because my little William knows what it’s like to die, my son shouldn’t know that, and no matter how much positivity you harness, how much you empower parents, and how much awareness you raise of the catastrophic condition that took our little boys life, William is still not here. We still came back to an empty home, no mess, no toys strewn on the floor, no laughter and contagious smiles. Nothing. No William.

You get to a point, and I’m at that point where people don’t approach you with caution, people no longer ask you how you are, with a sympathetic look, worried for the answer they’ll receive. No, now, there is an expectation that when people see you that you are okay. They will ask you how your weekend was, they will engage you in conversation, or as I like to put it, small talk. My tolerance levels are no better than they were six months ago. My tolerance levels are worse, I have just become a seasoned pro at wearing the mask. When you ask me how my weekend was, it was shit. Just like every other weekend. It was shit because on Friday after work I didn’t pick William up from nursery, I didn’t flop onto the sofa with a glass of wine when William had finally succumbed to sleep. It was shit because my weekend didn’t involve trips to the park, 25 loads of washing, chasing round after a cheeky two-year old, packing him into the car with ‘plans’. I will tell you it was ‘okay’, because I can no longer be bothered to explain, people no longer really want to hear it, people are busy with their own lives, people’s lives have moved on, albeit tinged with sadness but nonetheless, their lives have evolved.

My mental health has not moved on, it has not evolved. I am no longer preparing for an inquest, I am no longer bracing myself for the next version of the NHSE report, no, I know what happened to William, although I’ve known for months, however, it is not something that I felt able or inclined to speak about publicly. We’ve had every apology we can possibly have, the doctors involved in the failings in William’s care have apologised, face to face, last week. South Western Ambulance Service (111) apologised last year. NHSE have apologised, and now Jeremy Hunt, Secretary of State for Health, stood in Parliament and apologised on behalf of the NHS and the Government (see video below). But, where is William? It doesn’t bring my little boy back, it doesn’t take away the suffering he endured in those last few months, and in those last 36 hours, it doesn’t take away the guilt I feel, the blame I impose on myself, probably a form of self-harm. Control perhaps. I know it’s not my fault, I did everything I could, I sought help, I listened, I followed advice, I didn’t know what sepsis was, I didn’t know that William’s symptoms were life-threatening. But regardless it was me who took him to the people who failed my son, me. The one person that has ultimate responsibility for my son, he trusted me to protect him, trusted me to make the right decisions for him, he trusted me with his life, and as his mother I wasn’t able to do it. I was let down, let down by people and systems that are designed and are in place to help people, but until I take my last breath, the buck stops with me. No amount of changes, recommendations, lives saved, and sorry’s will ever stop me feeling that.

If you’ve ever faced a tragedy and someone tells you in any way, shape or form that your tragedy was meant to be, that it happened for a reason, that it will make you a better person, or that somehow when responsibility is taken for it, it will fix it. They are lying. Grief in all it’s forms is brutally painful. People encounter grief in many ways, when relationships fall apart, you grieve. When dreams die, you grieve. When illnesses destroy you, you grieve. These are words that I’ve uttered countless times; words that are powerful and honest they remove the foundations of anyone participating in the debasing of the grieving. Some things in life cannot be fixed. They can only be carried.

This video is the link to the apology William received in Parliament, if you would like to watch.

http://videoplayback.parliamentlive.tv/Player/Index/563715bb-a8f2-41fe-9f36-642d670ed991?in=2016-01-26T12%3A37%3A45%2B00%3A00&out=2016-01-26T13%3A15%3A00%2B00%3A00&audioOnly=False&autoStart=False&statsEnabled=True



www.justgiving.com/williamoscarmead