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

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Your 3rd birthday

William on his first birthday xx

William on his first birthday xx

When we found out that you were due on the 21st November we thought you might arrive on daddy’s birthday on the 24th, but you didn’t. You wanted to hang around and arrive on mummy’s birthday instead. You made your grand appearance on the 27th November at the same time your daddy was born at 12:21. I didn’t mind, I loved that we would share such a special day. Mummy has never been a person who really celebrates her birthday and when you came along I was more than happy for your to steal all the spotlight. Apart from the day you were born we only ever got to spend one birthday together, your first.

We celebrated your special day with our friends and family, you had a lovely farm animals birthday cake which you spat out, not having eaten any sweet foods before, but we enjoyed it anyway! You didn’t really understand what birthdays were all about yet. You were more interested in playing with the wrapping paper than you were the contents. Pretty standard stuff I think. On this special day daddy captured my favourite video of us together. As you sat with your presents you pushed them away, climbed into mummy’s lap and gave me a big birthday cuddle. I will never forget. I can close my eyes now and feel your little arms around mummy’s neck, the most precious jewels that will ever be around my neck. I can smell your sweet strawberry smell as you nuzzled in, getting as close as you could. Your touch is what mummy misses the most.

I can remember one very specific moment, when you were born I was overcome with a wave of emotion, no other feeling comes even close to how I felt when you were placed on my chest. But you know, when daddy drove us home for the first time, I looked at you and I could barely believe you were mine. As I carried you up the steps to your new home I couldn’t open the door, my mum, your nanny, opened the door and I was stood there in tears, sobbing as I was holding you. Nanny’s face etched with worry, ‘what’s wrong, is everything ok?’. My response, ‘I’m just so happy.’ I cannot even put in to words just how happy I was. I knew at that moment that my life was complete.

So what would you be doing today? You would understand what birthdays meant by now, I expect that you would open your presents in a hurry, the anticipation taking over. Mummy and daddy would obviously be taking lots of photos and videos, just as excited as you. I sit often and wonder when mummy comes up to heaven, will you still be one, or will you be 27 or 43 or however many years have passed before that moment. I hope that you’ll still be one, I hope that I will get to be 28 again, I hope that we can reset the clock so that I don’t miss any of your birthdays, that I can get to watch you grow up, watch you turn from a baby to a toddler and into a little boy and never miss a single moment.

Do you know that after you died mummy took such a long time to change her glasses, I was scared that when I got up to heaven with different glasses that you wouldn’t recognise me. I think the same thing now, I don’t want to cut my hair short, or change the way I look incase you don’t know who I am. After ruminating about it, I think to myself well what happens if many years have passed and you’re no longer one, will I recognise you? I could imagine what a two or a three-year old William might look like, but you were too young to imagine what a teenage William would look like. I am left with only imaginations, not memories. I like to think that whatever age you are when I arrive in heaven that I will recognise you straight away, I’ll know who my little William is, the little boy mummy desperately yearns for every single day. Of course most of these thoughts are completely irrational to a normal person but to me truth lies in there somewhere. These are not things that parents should worry about. I should be worrying about you falling over or making sure you learn how to cross the road properly, not how old you will be when I get to heaven.

How did the most special day of the year become such a sad day. Maybe in time we will ‘celebrate’ your birthday with Arthur, I should imagine as he gets older and understands a little better that he will want to celebrate your birthday and mummy’s birthday, but it’s so hard to be happy on a day that is fraught with so much sadness. I miss you every day, all the time. Somehow Arthur being here makes your missing presence even more profound. You should be here, you should be excited about your birthday, you should be helping mummy and daddy with Arthur, you should be three, you should be ALIVE.

Life sucks here without you, but I know that I have a reason to live. The little 7lb 11oz gift that you sent us gave us a purpose once again. We know that it is you saying ‘it’s ok’. But it doesn’t make missing you any easier. I’m really hoping that heaven gives you the very best party. That you will be happy. That you will be loved and that you will stop, pause, and blow a kiss to mummy here on earth. What I do know for certain though, is that heaven is a very lucky place to have you there. My darling little boy I wish you every happiness in the world on your birthday.

From your ever-loving mummy xxxxxx


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

You were only one, but….

…Your smile was the most captivating I have ever seen.
…Your smile made me smile.
…Your eyes came alive when you smiled.
…Your eyes were full of love and trust.
…Your eyes emanated the true depth of beauty.
…Your eyes made mummy’s eyes leak.
…Your little face made mummy’s heart burst under the pressure of love.
…Your presence allowed mummy to feel entirely at ease with the world.
…Mummy is entirely in love with you.
…Giving birth to you defined me.
…When you arrived my soul was purged of any hurt.
…You fixed me and were the glue that held mummy together.
…When I cuddled you, you made everything ok.
…You gave me moments I wanted to freeze in time.
…You gave me ten little fingers and ten little toes that mummy could count.
…You gave mummy a cute button nose that she could ‘beep, beep’.
…You allowed me to sit up to the wee hours and watch you sleep.
…You were that little baby my arms had longed to cradle.
…You always kept your hat and gloves on like a good boy.
…You had already decided you didn’t like broccoli.
…You knew how to be perfectly cheeky.
…You allowed mummy to act silly.
…You were the little person I could make up silly nicknames for.
…I have never giggled so much as when we were together.
…You had mummy wrapped around you chubby little finger.
…Being wrapped round your chubby little finger was the best place to be.
…We had our very own family meal (with no broccoli).
…When you learnt something new, mummy would feel nothing but accomplishment.
…You taught me how to be patient.
…You taught me that the little things are the things that matter.
…You taught mummy not to be selfish.
…You made mummy realise that she is a good mummy.
…You gave mummy the best job.
…You taught me what it is to love unconditionally.
…You showed me what pure and unguarded love is.
…You taught me a kind of love that has no boundaries, that is limitless and endless.
…Mummy knew she would never be alone.
…Mummy has never worried about anything as much as she worried about you.
…You are the beat in my heart and the pulse in my veins.
…Losing you has given me courage that I never thought I had.
…Your life and your existence taught me endurance to continue.
…Losing you has made mummy feel agonising pain and heartache.
…Losing you has made mummy very forgiving and compassionate of others.
…Losing you changed me.
…Losing you has destroyed me.
…You are the reason I love and the reason I’d die.

When mummy looked at YOU she knew that she had got one thing absolutely perfect.

Your death sparked feelings I never knew existed;
and I want YOU; not feelings about you.


www.justgiving.com/williamoscarmead

My inspiration for 2016 – William

My boy and I

My boy and I

As the evening draws in and darkness approaches, I say goodbye to 2015, but I do not welcome 2016. For I would not have cuddled my baby in 2016. This year I didn’t hold my baby alive, and next year I would not have held him at all. Although William lived for 382 days, he did not live one full calendar year.

Not only does today represent the end of a very hard and very painful year, today marks 382 days without my baby. William has been gone the same number of days today as we were blessed with him. How does that seem possible? The most exhilarating and amazing 382 days, compared to the most harrowing 382 days. I simply cannot make sense of it, I still cannot understand, accept or seemingly learn to live with it. I’m happy with that, right now, I don’t want to. Why should I? Losing William has enriched my life with the ability to see past what most people understand as a ‘good life’. To really understand the depth of love is to lose it, not until after you lose it do you realise how much you relied upon that love. How much you needed that love. How much you needed that person.

Earlier, I sat and thought to myself, ‘you’re not even 30 and you’ve outlived your child’. I sat in William’s room and looked at his tiny little clothes, thinking how small they would look next to him now had he been here. His room should not be tidy, it should be cluttered with his toys. His cot should be a bed. His changing mat replaced with a potty. Our home is stuck in a particular time. A time that stood still the moment William took his last breath. Will that change? I don’t know, not yet, I don’t want it to. William’s high chair is still in the kitchen, his cups and beakers are still in the cupboard, his cereals still stand on his shelf along with his other food bits. Well past their sell by date, but somehow to get rid of these would be like somehow getting rid of a piece of William. I am not ready for that separation yet. William’s pram is by the front door, the stones in the wheels from the last time it was used. His little coat still hangs on its peg and his toys still have pride of place in the front room. His car seat still adorns the back seat; every time I look in the rear view mirror I see it and it makes me smile. Imagining catching his eye as I drove along, his little face would burst into the biggest smile, babbling away, deep in conversation with himself after nursery. The replacement beaker still stands on my bedside table from the night he died, in case he needed another. The beaker that he last drank from in his cot is where he left it, the last thing he ever touched. I sometimes pick it up and place my fingers round the handles, knowing his chubby little fingers gripped this very handle. Knowing that his touch was once here. I still haven’t washed his handprints from the inside of my bedroom window. An ever lasting reminder that ‘William was here’. His toys are still in the bath and his toothbrush and toothpaste still in their little pot. For us, nothing has changed, our life hasn’t moved on, our life at a standstill, forever waiting, but I know we’ll be waiting a lifetime, William’s sweet giggle won’t ever resonate through our house again, his cheeky grin won’t fill my rear view mirror and his little fingers won’t ever hold that beaker again.

Some might say that we struggle to move on because we keep those things in their places, but that is not true, William was and still is a part of this household and this family. I need William’s things around me, to look at, to touch and hold, sometimes I remember a different memory and it makes me smile. Time does not heal, whoever said that was so very wrong, time may give you the ability to live a different life but it does not heal the gaping chasm that William has left. The scar tissue has not begun to form. I have no protection from falling in that pit. As time passes my flashbacks and PTSD seem to be increasingly more and more crippling. I don’t need triggers, those thoughts, visions and memories are right there, right in the forefront of my mind. This is what grief really does to you. There is no let up. It does not discriminate. It holds you firmly in its grip. Am I depressed? Yes, clinically so. Do I take medication to help me sleep, to stave away the crippling symptoms of anxiety, to help lift my mood, to help discourage suicidal ideation? Yes. Do I have a drink? Yes, just like you I have shit days, sometimes things go wrong, normal things, like the washing machine that William decided he needed in heaven on Christmas Eve. Do I struggle to get out of bed? Yes. Do I struggle to concentrate? Yes. Do I struggle to remember things? Yes. Do I struggle to go out, to be motivated? Yes. Do I care? No. I am simply a machine. I plug myself in at the end of the day, I recharge and get up and do my jobs the next day. Do I do them with conviction? No. Do I do them with care? No. Do I do them because I want to? No. Do I do them with hope? No. Am I worried? No. This is life. This is the card that I have been dealt, but goodness me, I’m in better shape than William is. His little life snuffed out because people did not do what they were supposed to do.

This year I have been well and truly submerged against my will into everyone’s worst nightmare. The terror that runs through my veins, the fear that makes my heart beat, very few people have experienced and I’m thankful for that. My eyes have been opened to a world of mental health that I only knew existed in the media. Don’t walk around with your eyes closed, make eye contact with people on the bus, the tube or walking down the street. If someone drops something, help them to pick it up. If someone elderly say hi, say hello back. Take the time to love, because you don’t know however small these little gestures are to you, to someone else they will be the highlight of their day or week. For someone else you can bring joy and comfort. Not just family and friends but strangers. Life is too short, I know this, you know this, please don’t walk around with your head down, rushing everywhere. Don’t sit on the bus on your phone, say hi. Give that homeless person a sandwich and a hot drink. Pick up the phone to your elderly relatives whom you rarely speak to, they won’t be there forever, they helped create the world that you live in today. You are their inspiration, be someone else’s. Most importantly. Look at your child and know, really know that you are their world. So make sure they know that they are yours.

My life is run on passion and love and drive and determination, my life is run simply on my resounding, unwavering love for William. He is my guiding light. He is my hope. He is what drives me, knowing I must get the answers, knowing I must fight for him, knowing that I will never settle for anything less than the truth. My life is not run on hope for the future, nor happiness but a bittersweet necessity to share my son with the world.

To be blessed with William, was to be blessed with love. My life furnished with everything it could ever possibly need and more. I cannot even begin to put in to words the sheer desperation I have to be with my son. The only hope I have is that is not too far away, hard I know, but the truth. But for now, my only wish for 2016 is that everyone will learn what really happened to William and what should have happened and in doing so educate themselves about sepsis and hope that those that made mistakes never make them again.

For now, I say goodbye to the last year that I ever held my child. Something I don’t want to do, but of course, no one can stop time. If they could I would have stopped it a long time ago. My wish for all of you in 2016 is that it brings you as much comfort as you have all brought me in 2015. That it brings you time with your loved ones that cannot be replaced. Love, learn and be inspired. William is my inspiration. My life and my love.


www.justgiving.com/williamoscarmead