Christmas will never be the same…

Today is a sad day, every day is a sad day, but this time three years ago we announced when William’s funeral would be. Instead of uploading hundreds of photos that all seemed to look identical, William covered in paper and sellotape, playing with the boxes that the toys came in, instead we were inviting people to his funeral.

Christmas, a time of year that over the centuries has evolved from its very religious beginnings, now a commercialised time of year, that we all use as an excuse to down tools and spend time with our loved ones. Who can blame you? No-one needs an excuse to see that joy on their little ones faces, that excitement of knowing Father Christmas is coming, writing a letter to Santa, leaving a mince-pie, carrot and a tipple for Santa on Christmas Eve, visiting any number of events laid on by local attractions for our children to sit on Santa’s knee, and finally that sound of tiny stomping feet and squeals of glee, when they discover Santa has been, a stocking brimming full of toys that will be played with once, a tree that is barely recognisable under the weight of all the gifts.

We have none of that for William. We will never have any of that, not with William. William didn’t get to learn about Father Christmas, William didn’t get to star in his first nativity, William didn’t get to write a letter to Santa, he did sit on Santa’s knee, his bear containing William’s ashes gripped tightly by Santa, but that isn’t what we imagined would be the first time William would sit on Santa’s knee. We didn’t get to track Santa’s sleigh as he visited those in the Far East before he made it to the UK, we didn’t get to buy him a personalised book from Santa. On Christmas morning we awoke to silence, no little feet stomping down the corridor, no squealing, no excited little face, no ‘mummy, daddy, he’s been’. No William.

Our floor was clear of William’s wrapping paper, we didn’t have an obstacle course of his toys littered around the house. We didn’t have a little boy to give his first brussel sprout too. We didn’t get to show him a cracker, he didn’t get to wear a party hat or a cute little outfit. We didn’t have the struggle to put him to bed, too high on the simplicity of playing with his toys. We didn’t get to pack him and 500 toys into the car to visit family and friends, where his beautiful smile would make anyone’s Christmas. No, we had nothing of William.

Two years ago we went away, we went to stay somewhere completely unfamiliar, needing to get away from the suffocation of William’s absence in our home. But, regardless of where we were, the crushing pain packed itself in our suitcase and followed us. My heart hurts, it physically hurts in my chest, it doesn’t go away when I breathe in or out, whether I lie down or stand up, whether I have a glass of wine or not. My chest is crushed, my heart aching, aching to hold my little boy on Christmas. Three years ago at Christmas William’s fragile and broken body was still with us. I held him for several hours twice on Christmas day. I cried over his beautiful presence, I held him so close, I feared I might squash him. This year, we didn’t even have that. We will never have that again.There are very few that will understand this pain.

Paul and I stayed in a beautiful hideaway in Dartmoor National Park, there were families with children there, but we spoke to lots of couples who like us were ‘hiding’. Christmas not a happy time for them either. Some vastly wealthy couples, but grief does not discriminate, a loss of both parents recently meant one couple needed to be somewhere unfamiliar. At Christmas dinner, we had William’s teddy in a high chair, the chap on the next table ordered his parents favourite wine. Simple things, that somehow bring us closer to those loved ones we so desperately pine for. We met a U.S district judge, a man with a very powerful and influential position in society, reduced to tears by William’s story. For some Christmas isn’t a time of joy or craziness, it has become a time of painful reflection. A time that you look at your watch and hope that another hour has passed.

Every painful aspect a reminder of what should be, William would have loved the Christmas trees in every room, William would have loved splashing in the muddy puddles in his wellies, William would have loved the array of treats littered around the castle to keep the kids entertained, William would have loved afternoon tea, bitesize little sandwiches, perfect for his dinky little fingers, William would have loved to have found the stocking hanging on our door on Christmas morning, William would have loved to decorate the Christmas tree in our room, William would have loved the table magician, William would have loved the owl that sat on the reception desk, William would have loved watching the hunt as the horses and hounds made their way off the estate, William would have loved to sit in front of the grand fire by the most extravagant Christmas tree waiting for Father Christmas to call his name out to go and collect his present, William would have loved to watch the ferret racing, William would have loved the playbarn, William would have loved everything, but William was robbed of all of those things and we were robbed of William. All I want for Christmas is my son. Just one second, just one cuddle, just one stroke of those chubby little cheeks, just one look at that infectious smile, just one smell, just one touch. Just William. This is a wish that will never be answered.

I have felt nothing but guilt, my whole body consumed by Williams last few hours, what must my boy have been feeling, what did he want to say but couldn’t, what sort of mother am I to listen to what I was told to do, what sort of mother am I to listen to people who had no idea what they were doing, not just one person but multiple people, not just once but multiple times. The one thing I wanted to do and prided myself on was protecting my little boy, knowing that no-one could ever protect him and love him like I do. But sepsis does not discriminate, William was not unlucky, William was let down in the most unimaginable way possible. They have taken away our Christmas, our birthdays, every day, our life, our William. No manner of apology or putting right what went wrong will change anything, nothing will bring William back. Nothing can make Christmas bearable. Nothing can take away the fear, the anxiety and the guilt that any mother would feel for not somehow saving her child.

During midnight mass in the local church, William’s teddy was wrapped in my embrace, I struggled to make it through the service, the tears came rolling down my cheeks, choking on the tears, the words the heart cannot speak. As I stood, I went to the vicar and I asked him to please pray with me. He held me and William, and he prayed that his little soul would be in peace and to bless his beautiful soul. He also prayed for me, William’s mummy, to find comfort. I am yet to find any. I know that day will come, I know that day will be when I get to join my son again. In a place where there are no hours, days or years, where it is eternity. Where there is peace from this suffering, where I know that I will never be separated from my darling little boy again. A place where the first thing I will do is find my son, and the second will be to never let him go again. On that day, and that day only I will find peace.

This year, this Christmas we are blessed with William’s brother, Arthur. Something I could never have imagined three years ago. Something, sometimes I still struggle to comprehend. How can I be so lucky, lucky to have two beautiful children, but for this to be entwined with such pain and loss. As I drink in every movement Arthur makes I am crippled by the movements that William will never make. It is like living in a parallel universe, for every simply euphoric moment with Arthur I am reminded and crushed by the moments that I will never have with William. I feel as though every moment I live I am lost and once again found.

Life doesn’t get easier. Christmas doesn’t get better, torn between love and loss. But what these last three years have taught me is that life is so unbelievably fragile. Life is not promised. We are but one breath, one heart beat from it being over. Savour every moment, every breath, be thankful when you open your eyes in the morning and hug your children close. Make your memories today. Love today. Live today. I will never take one single second with Arthur for granted.

William, wherever you are my darling little boy. For every step I take on Earth, it is one step closer to you. One day we will be forever. Until then, all of my love is being sent to you this Christmas. It is one less that we have to spend without each other.

You would be incredibly proud of your amazing little brother. And for every waking moment, everyday is Christmas day, every day brings with it your greatest gift to daddy and I, Arthur. There is no greater gift, than life itself, and mummy cannot articulate how proud she is of you for giving your life to save others. And mummy wants to say thank you. Thank you for giving me Arthur, thank you for saving my life, and thank you for making me the person that I am today. Without you, I would be a shadow. You have bought me into the light and through Arthur you have once again given me light.

I love you, x


www.justgiving.com/williamoscarmead

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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

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

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