Christmas will never be the same…

Today is a sad day, every day is a sad day, but this time two 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 wrapping paper, we didn’t have an obstacle course of 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.

Last year 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. Two 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 tress 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 two years ago, or last year. 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 two 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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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

An open letter to Jeremy…

Do you know what it’s like, what it’s like to lose your child, the one person that is dependent on you, and for whom your existence depends on? Do you know what it feels like to wake wondering if by the end of the day the burden of emotions will weigh lighter, not just on your shoulders but on your soul? Do you know what it feels like to know that you will never feel ‘normal’ again? Do you know what it feels like to know that for every step you take, you will never again be complete? The most important piece of my jigsaw, forever missing.

Do you know how hard it is to love someone so fiercely, but to know that love can never be expressed to that person? Do you know what it’s like to be able to look at your children, see their smile, hear their laugh and sooth their tears, I don’t. Do you know what it’s like knowing your child only exists in your memory? Do you know it’s those memories that ensure I lay frozen in the same position, fear, flashbacks and nightmares making you re-live that moment, the moment you tried so hard pump life back into your child. Do you know the determination it takes after 7 hours of that nightmare to get dressed and go to work.

Do you know what it’s like to lose a child to sepsis? Do you know what it’s like to be told, your child should have survived. Do you know how hard it is to live with myself knowing that despite everything I did, I could not protect my child? Do you know what it’s like going to bed every evening knowing that there are millions of other people just like us, who also cannot protect themselves against sepsis, because they do not have the information to do so? Do you know the force it takes for me not to break during every interview? Do you know what it’s like to have to answer questions about your child in the past tense? Do you know the anguish I face to sit in front of the one person in this country that can ensure that other families do not suffer our life sentence, but have little control in the decision. I don’t know what it is like to be in that position, but what I do know is that I don’t want you, or any other parent to have lost their child, or any child to be left without a parent from sepsis.

What you do know is that sepsis affects 150,000 people annually in the UK, what you do know is that of those, 44,000 will die. Every day 120 of those are adults, leaving children behind to grow up without their mummy or daddy, and 4 children whose parents are left in incomprehensible pain. What you do know is that one-third of those deaths are preventable. What you do know is that a large majority if treated sooner, would recover with less life limiting illnesses. What you do know is that “the time has come for sepsis”.

Do you know how hard it is to know those you trusted the most, let you down in a catastrophic way? Do you know that despite this, we somehow channel our grief into a campaign so that others don’t suffer the same debilitating pain that we do? Do you know that at the end of every day we do not blame anyone else but ourselves for somehow failing to keep our child alive? Do you know how many other parents there are out there who have had to say goodbye? Do you know how many children there are growing up without a parent? Do you know what it’s like for their family to tell them that their mummy or daddy won’t be coming home? The frustration I as a parent have to live with, being so close to our end goal but fearing it is so far away. Do you know how hard it is to think that my child’s death wasn’t enough to create change, evolution and a lasting legacy? What will your achilly’s heel be? When will enough be enough? When will you realise that you hold the answers in the palm of your hand, right in front of you. How many more children have to die, how many more mothers and fathers, grandparents and friends have to die before you realise that sepsis does not discriminate. Did you know that thanks to the symptoms being televised during one of my interviews a young mother’s life was saved. Her two week old son will now grow up with his mummy. This is about everyone. Adults, children and sepsis.

This life has been thrust upon me forcibly, in one single moment that took my breath away; and from that moment on every single breath has been a fight. A constant battle against myself. Do you know that I have no strength, no courage, no bravery, nothing but love.

Choice was taken away from me by sepsis; but you still have a choice. A choice and a chance to do the right thing. Please don’t make me continue to fight when I simply don’t have the strength to do so.

You know that we were let down; you know that William was let down with the most tragic circumstances. Don’t let us down again. So many lives depend on your decision. Make it the right one. Stand by your word that “we can raise public awareness of sepsis both in children and adults.”

See you Wednesday.

Melissa

October – International Pregnancy & Infant Loss Awareness Month

William and his 1st birthday cake x

William and his 1st birthday cake x

Next month on the 27th November William will turn two, but he won’t be here to share his special day with us and celebrate like other children can. I simply cannot believe it’s ‘next month’. As time ebbs away I am hanging on to the days when I can still say ‘this day last year William was…. this time last year William took his first steps…’ soon, as we pass William’s birthday and the anniversary of his death approaches and passes, I will no longer be able to say, this time last year. A whole year. A whole year without William, and as the end of the year closes in the 31st December represents 382 days without him. I will have spent just as many days without him to those that he lived. I cannot tell you how incapacitating this is.

How can we celebrate William’s birthday without him, how can we smile, how can we do anything other than remember the beautiful first birthday we spent together. But, and it is the hardest ‘but’ I have faced. It wouldn’t be right for us not to mark William’s special day. The day that I birthed my angel. The day that sunlight came beaming into my world, the day that nothing else mattered, the day that I knew my dream had become a reality. The day that William showed me how exquisite unconditional love is.

So, as you know from my previous blog we have organised to release some biodegradable balloons so they can make their way to heaven for William to play with. We are doing this the day after William’s birthday on the 28th. On the 27th November I will be devoured by the eternal ache of spending the first birthday without him. How is it even possible that we only ever got to have one birthday with him? How is it possible that a little boy so loved, so achingly needed, and so desperately wanted could be snatched away so cruelly. I know how, but I will never understand why.

William died from sepsis, the most awful and in William’s case catastrophically fatal infection I have ever come across, and I wonder how many of you know what Sepsis is? What the symptoms of sepsis are? What causes it? Well I thought sepsis was rare, in fact in 2012 I had sepsis, caught after an operation. Well I can tell you that sepsis kills 37,000 people in the UK every year. William was one of those 37,000. A life-threatening condition that takes hold in a matter of hours. As October is International Pregnancy and Infant Loss Awareness Month I hope to be able to spread awareness of sepsis, so that no-one has to lose anyone to sepsis.

Sepsis occurs when the body’s response to an infection injures its own tissues and organs. Infection which can give rise to sepsis are common, and include lung infections, like pneumonia (this is what William was suffering with – although un-diagnosed), water infections, infections in wounds, bites or joints and problems such as burst ulcers.

Sepsis can lead to shock, multiple organ failure and in William’s case, death.

Life-saving treatment for sepsis is often relatively straightforward. Early recognition, and getting basic treatments including antibiotics and fluids into the patient within the first hour, can halt the progression of sepsis and hugely improve outcomes for patients. In the case of sepsis antibiotics are the single most important life-saving measure.

Sepsis accounts for 37,000 deaths in the UK every year. That’s more than bowel cancer, breast cancer and prostate cancer put together. This means that 1 person dies from sepsis every 14 minutes. What should you look out for?

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So, for William’s balloon release I am involving all of you, if you would like to donate to William’s Just Giving Page with all proceeds going directly to the UK Sepsis Trust, I hope by fundraising we can raise awareness of Sepsis. Whether through simply educating people, 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. So, if you would like a balloon to release for William’s second birthday and to raise money for such a worthy charity, we are asking minimum £1 donation per balloon, you can email me your address and if you are abroad, don’t worry I will get a balloon to you too.

I hope you will all help our family, to mark William’s special day with as many balloons from around the world as we can, and raise awareness of Sepsis too.

 

 

Life is a path: death is a destination

Can you imagine what it actually feels like to not be able to live with yourself. I don’t mean that figuratively but literally. All my life I have been very independent, and when I was told the chances of conceiving my own baby were slim to none, I focused on the practical side of life. Buying a house, studying for a job that wasn’t just a job but a career. I am a very black and white person, the most dominant part being logical, the part of me that has been my core survival. The emotional me has always only had a very small role in my life. That was until William was born. Wow, the intensity of love was frightening, I didn’t know love like that existed and it was all mine. There was nothing that could change it, I didn’t know how I had lived without it for so long. I had finally been born, I was finally alive.

My life it seemed had always been a journey of survival, a survival that relied upon my logical, practical side, a side that had never let me down. When William was sick, I did what I was supposed to do, I took him to the doctors. When I wasn’t satisfied I took him to another doctor, when he didn’t improve I took him back, again and again. In the hours leading up to William’s death I knew something was wrong, and I took him to those that we trust, I walked away reassured I was doing the right thing. The day before William died the niggling feeling, my mother’s instinct was telling me, he’s just not right, so I called for help and advice. Twice that day. Following advice, I was apparently doing the right thing. But it wasn’t the right thing. This I could tell you until I’m blue in the face that William’s death was out of my control, I would trade my life for his, but I still blame myself, I let myself down and I let my boy down.

With hindsight, there’s that word again, a curse word and knowing what we know now that William’s death was avoidable only reinforces that blame is warranted. I know every fine detail of the weeks, months, and those last few hours of William’s life. It doesn’t matter how many people tell me over and over that it’s not my fault, I shouldn’t feel guilty, I wasn’t to know, I did everything I could, the reasoning, but regardless the guilt remains. The guilt is born from what any mother would feel as her normal sense of responsibility for her baby, and the inherent belief that we have ultimate control over what happens to us, what happens to our loved ones and our built-in desire to protect. The despair only magnifies the deep-rooted guilt and makes me feel like a complete failure as a human being, and most importantly as a mother. Existing through each day, resisting the urge to end my life is potentially the hardest fight. A fight I know I’ll lose.

These feelings of guilt creep into every aspect of my day, every thought, intensified by my love for William, my need to close my eyes, go back to those moments and take away his suffering. This is something I have no control over, I can’t go back, I can’t change it but guilt allows me to control the situation I find myself in during every waking moment. I know that the decisions I made at the time were always in William’s best interests. The guilt I know is unfounded, feeling guilty is not the same as being guilty, this is so hard for people to understand. Guilt is all-consuming, made up of despair, regret, incompetence, failure, sadness, and these all form the worst feeling of all, blame.

I feel vulnerable, I am constantly anxious, I am worried, about what I don’t know, I no longer have anything to worry about. I have very little control over any of my feelings, the realisation of the horror that is my life is racked with guilt. My whole body aches with love, now I share my love for William with the world as my only witness. Guilt is the most painful companion to death.

William my sweetheart, you saw me take my first breath as you took yours, I saw you take your last breath, and when I take my last, we will be together. Forever.