Two years, life after loss

I can remember so clearly when and where we were when we found out we were expecting you. Earlier in the day I had been writhing around on my bed in agony. My first and genuine thought was that I had another tumour. Having had three ovarian tumours the pain was extremely similar. I didn’t want to believe it was another tumour, as I knew that meant I would have to go to hospital. Normally this isn’t  problem but this particular day Cornwall and most of the UK had severe weather warnings. Many places were under water from burst rivers and torrential rain. Our main road to the hospital had trees down and I knew we would have to go the long way round to even get to A&E. But alas I knew we had to go. Having lost my right ovary from tumour strangulation, and part of my left ovary for the same reason. I knew that if I didn’t catch it in time I would lose the only remaining slither of my left ovary. So your daddy packed me an over night bag and I text my boss to say I was poorly. We bundled into the car, I was in a serious amount of pain, feeling every bump in the road. What normally takes 20 minutes took over an hour but we made it.

Once inside I remember going through all the normal questions and answers. I was being investigated at the time due to an undiagnosed heart condition, so was used to being poked and prodded. After a little while the general consensus was that they would send me for a scan…but…the doctor came back to say…I don’t have a diagnosis for your pain, but you are pregnant. I was curled up in the foetal position on the bed and your daddy’s jaw dropped to the floor. After 8 years and no success we had given up believing that we could have a family and there we were, in the middle of the worst storm Cornwall has seen for years, we were being told that you existed. Wow. Just wow. From that moment it was all about you. You were the one who mattered.

As my stomach burgeoned and I traced my fingers over my belly I could feel your touch from the inside. I have never felt as good about myself than when I was pregnant with you. My body was your home. Everything I did would affect you. I had the most important job in the world. To be the best incubator for you. I was on the top of the world as I watched my body change to make room for you. Whilst I was pregnant with you I had 61 hospital appointments but you were worth every single one. You were worth all the fear and anxiety. You were loved so very dearly from the moment we knew you were there. I don’t think I really believed you were really real until you were placed in my arms.

It really upsets me to know that you will never get to meet your little brother Arthur. You will never get to hold hands, play together, squabble and grow into fine young men together. What I do know is that you share something so special. I know that both of you grew in my body, you have both heard my heart beating from the inside. I missed being pregnant when you were born, I missed having you all to myself, but I loved having you in my arms even more. From the moment I touched you, it was you who mattered. Always you.

I can remember when I woke up in the mornings and I could hear your little voice babbling away. Talking to your little reindeer. I miss that. I really miss that. I miss knowing that you are in the next room. I miss not being able to sneak in and just watch you sleep. I miss waiting until you were in a deep sleep and stroking your silky soft hair. I miss waiting in bed until you woke up, keeping our bed warm, so I could come and collect you. You would come into our bed every morning to start our day with cuddles. I miss talking to you and watching your face light up to the sound of my voice. I miss squidging your little cheeks and your bum. I miss not being able to soothe you and make things right. I just miss you.

But, I also miss what could have been, all the things we had planned but were never able to. As I’ve always said, what are milestones for other families are losses for us. I miss not being able to read you a bedtime story, and I miss your little face, excited for one more book. I miss not being able to teach you the alphabet and to count to ten. I miss not building sand castles with you and playing games. I miss not being able to take the first picture of you in your school uniform. I miss not being able to stick a plaster on your knee when you fell over for the first time. I miss hearing you say ‘mummy, I love you’. I miss you so much. I miss your life.

Today it has been two years since you have been gone. Two whole years, almost double the amount of time you spent here with us. You would be three now, you would be excited about Christmas, you would be such a wonderful little boy. People think that it gets easier to live with losing you over time, this isn’t the case, you know that as I’m sure wherever you may be you see the pain that we endure. It has been two years since I last held you, since I last cuddled you when you were poorly. It has been two years since I lost myself in your beautiful big brown eyes, and it’s been two years since I was blessed with your captivating smile.

This time two years ago I found your lifeless body. This time two years ago I tried in vain so desperately to pump air back into your body, I tried so damn hard. I heard the most devastating and world shattering words anyone can hear, “I’m sorry my love, but he’s gone”. From the moment I called the ambulance to the moment you were pronounced dead it was 7 minutes. 7 short minutes but 7 of the longest minutes one can bear. When we eventually saw the ambulance sheet, it said “life extinct”, EXTINCT. Somehow there is more finality to that word than ‘dead’. Extinct – no longer in existence. You were gone. Forever.

In one single moment, my whole world changed. The earth shattering guttural sound that came out of my body is one that I don’t think I could replicate. I felt as though my chest was being crushed by a train, the heaviest and most suffocating weight. Death is tangible. Your death is tangible. It overshadowed any other emotion I have ever felt. It reached deep into my soul and gripped it so tightly. When I lost you, I lost myself. Ever since that moment, I have had to re-build my life, not by choice, but against my will. We did not choose this. We chose you. We gave you life. We gave you everything. And you were taken away. I had to re-learn how to be myself. I had to re-discover who I was. Your daddy and I had to embark on this indescribable journey of survival as two, not three.

What is life after loss? Life after loss is the existence that is left behind when the most significant part of your soul and your self is irreparably changed in one single second. The shell of your former self, that has been forced upon you, not chosen. Until you have children you journey through life quite happily, making choices that will best suit your desires, objectives and needs, but when two become three that changes. Your needs suddenly become the lesser of the two as your life is enveloped by this little person. Overnight you assume responsibility for a person, a little person that is wholly dependent on you; and there is no better feeling.

Simply put, I write this now because of you, the little boy who died. But I am the person I am today because of you, the little boy who lived. Your life eclipses your death, and it does so, because I will always be the person I am today because I was blessed with your life and I will share your life forevermore. You will ALWAYS matter.


www.justgiving.com/williamoscarmead

Advertisements

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

Team William’s new addition 

  

    
 So, if you missed me on Good Morning Britain today you’ll have missed our special news….

William is being promoted to Big Brother.

We are so happy, overwhelmed, and also very nervous. The news is of course tinged with sadness that our little William is not here to share these special moments. BUT our little peanut will have the most amazing Big Brother and Guardian Angel. We cannot wait to tell Williams little brother or sister about their most inspirational sibling. 

Please keep us in your prayers for a healthy arrival. 

Love to you all from a family a four xxxx

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

 

 

We’re running a 5KM military obstacle course… 

This Saturday 12th March Paul, Williams daddy is running in The Major Series military obstacle course. With friends and family #teamwilliam is raising much needed funds for The UK Sepsis Trust. 

https://www.britmilfit.com/major-series/

Sepsis account for 44,000 deaths in the UK every year. That’s more than bowel cancer, breast cancer and prostate cancer put together. This means that a 1 person dies from sepsis every 14 minutes. 

I hope by fundraising we can raise awareness of Sepsis, through innovation, research and the sharing of good practice. Sepsis needs to be recognised as a medical emergency and as a clinical priority for the NHS. We need to ensure that members of the public, patients and their relatives, and health professionals work together to think Sepsis. 

£85 to save a life from sepsis.

£5 provides an information booklet to relatives of ten patients admitted to ITU.

£10 will allow the Sepsis Trust to distribute 200 leaflets to a GP surgery.

£50 a month will train one team of doctors and nurse on a hospital ward.
£999 will provide one hospital with a ‘sepsis pack’ to aid implementation.
So if you’d like to sponsor Paul you can do so via Williams Just Giving page below. If everyone that reads my blog donates just £1 we could raise thousands, so please dig deep xxx

.Www.justgiving.com/williamoscarmead