Sepsis and Me

I have a very strange relationship with sepsis. Ultimately it is what caused the most devastating loss in our family. It is what robbed my first-born child of his life. I didn’t even know what it was and hadn’t even heard of it before William’s death certificate was presented to me. Now I know so much about it that it seems impossible that there was ever a time when I didn’t know that it existed or that it was an integral part of my life.

You would think that because sepsis stole the life my of one-year old baby that I would never want to let the word roll off my tongue again but it is what consumes my life on an almost daily basis. It is something that I cannot let go of. It is something that I have to speak about and it is always on my mind.

I work for the UK Sepsis Trust but to me it doesn’t feel like a job. If I didn’t work for them I would campaign, I would blog, I would educate the public and health professionals about sepsis and the reality of what it can do. Sepsis is an integral part of my life that is unavoidable, perhaps not as unavoidable as William’s death. William couldn’t avoid it and neither can I.

When I talk to health professionals about William’s death, about those horrifying moments that I found my lifeless child in his cot, rigor mortis having taken over his fragile little body, the words catch in my throat. Reliving it, retelling it and recounting every single painful moment is almost like a punishment, dipping myself back in to that moment. I invest so much emotionally when I talk. But it is not something that I can escape from. I could of course choose not to talk about it. I could choose not to revisit, but these thoughts and those memories live in my mind, they are part of my make-up. As much as William’s life is made up of the most wonderful memories, William’s death happened too. It is part of my life and it is what has redefined me.

I am always asked when I arrive at a talk or conference whether I get nervous. I don’t, not really. I don’t have butterflies in my stomach, I don’t have sweaty palms and I don’t feel any sense of anxiety. After all, the subject I talk about is my life, I can’t get it wrong. It’s not a test and no one is judging me. Something that every parent wants to do is talk about their children. Their pride and joy. I cannot talk about William’s latest achievements or what he’s up to. I have finite memories that I can recall, there will be no more memories to make. So, in order to talk about William, I talk about his death, because that is also part of his life.

Sometimes I get messages from people, saying that because of a talk that I’ve delivered, or a blog I’ve written or a video I’ve shared that they heeded my advice and due to that their loved one was diagnosed and treated successfully for sepsis. This warms my heart and for every story, every child, every life it still gives me goose bumps and it still makes me cry. I cannot help but feel that I wish there had been a ‘me’ several years ago when William was poorly.

I know that whatever I do William lives on in the hearts of the lives that he’s saved. I cannot bring him back, if I could, I would. I have not accepted William’s death, how can you accept something that is unacceptable, but what I have done is made peace with myself that one day I will be with him again. I don’t know how, I don’t know when, but I know that it is but one heartbeat and one breath away.

I haven’t just seen the devastation that happens when sepsis enters one’s life, I live it, I breathe it. It is what tore my family apart, it crept in to my son’s life and it was what stopped that golden heart from beating. I will not forgive it, I will not give in to it. I have embraced it, I implore it, I share it, sepsis forms every part of my way of being William’s mum. If I can help just one family from enduring the pain that we live in, then I’ll keep sharing, I’ll keep talking, I’ll keep telling sepsis that you might have won the battle but you most certainly have not won the war.

Love prevails. Always.


www.justgiving.com/williamoscarmead

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Life after loss

I’ve not written for a very long time. I write often, in my mind, but sometimes I just can’t muster the strength to purge the words from my soul. This child loss game, I say game, it feels like one, constantly rolling the dice never knowing the outcome, day after day, roll after roll, it’s like one long game, not an enjoyable one and there are no winners. Waking each day and wondering whether today your piece will move forwards or backwards is a complete loss of control. That’s what happens when your child dies. You no longer have control.

I think after three and a half years life has a sense of ‘normality’ and we do, we do have some sense of normality. We had no choice. It was either sink or swim. At times I’ve wanted to sink and I’ve come very close. But Arthur forced me to swim, he is very much a protective factor in my life, a reason to live, hope, a future. For all the light that he brings to my life he cannot take away the turmoil that I feel inside. After this much time it is a deep inner longing, it weighs heavy and no matter what you do you cannot shake it off.

There is a common belief that anniversaries, birthdays, mothers days are the hardest; and they are hard, but they’re not the worst. It’s all the small things that grate the most. We took Arthur to the park recently, he absolutely loves the park, especially the slide. No sooner has he got all the way to the bottom he’s climbing up for another go, on repeat. The absolute joy on his face is irreplaceable, a complete freedom, innocence, joy, his laugh, infectious. It is wonderful. But with every heart stopping moment of euphoria there is a parallel deep sadness that shaves slices off my heart. William should be there helping his little brother to the top of the slide, they should be going down the slide together holding hands, squealing in delight. He should be here.

All I am left with are imaginations. When Arthur is playing in the garden what would William be doing? When Arthur goes to bed would William help me read him a bedtime story? What would they be like in the bath together? I imagine that William would have a calming effect on Arthur. I equally think that Arthur would drive William bonkers. William so calm, thoughtful, his every move a considered one. Arthur is the opposite, his zest for life oozes from everything he does, he barrels in to everything head first, head strong and determined. The two boys couldn’t be any more different, but the bond is there, the mannerisms are obvious, their likes and dislikes, and this is what hurts the most, I’ve lost my son, Paul has lost his son, but Arthur has lost his brother. He will never meet him, play with him, cuddle him, play fight with him, he will never know him. I feel desperately sad knowing this, and it will never change.

Child loss is colossal. It didn’t just happen on the 14th December 2014, it recurs every single day, it recurs every time I load only one toddler in to the car, it recurs every time I only kiss one baby goodnight. It recurs every single moment of every single day and it will last a lifetime. William will never start school, he will never graduate and fulfil his dream job, he’ll never fall in love, he’ll never get married or have children; but he’ll also never play on the slide with his brother, he’ll never read his first book, he’ll never confide in his brother, he’ll never be best man at his wedding. I won’t see him grow in to a man and I will never hear him say ‘mummy, I love you.’

Ultimately I am blessed, I am blessed with life, I am privileged to wake up every single morning, the one thing that William wants more than anything is his life, the one thing he cannot have, the one thing we gave him that was then so cruelly taken away. I cannot and will not waste mine. So can you see, every day is a tug of war. Constantly too-ing and fro-ing between here and ‘there’ wherever ‘there’ is.

These days my outlet is weekly therapy, but the sacrifice I pay for not wasting my life and living everyday as if it’s my last is that I internalise everything. The pain manifests itself wearing many different masks. Somedays I find myself very reflective, somedays I am plagued with PTSD, somedays I am frustrated, but everyday I am consumed by guilt. Every. Single. Day. I feel guilty that I couldn’t save him, I feel like I failed him because I should have done things differently, I feel stupid because I listened to people and followed advice. I feel sad for Paul, I feel sad for Arthur, I feel sad that he has no idea about all that has happened before him, I feel sad that one day he will know. I feel sad that one day he will share in our grief, that he will learn about death when he doesn’t need to. I feel sad that I will never be completely here, a part of his mummy that is always missing.

For every happy day there is a sad one, for every smile there is a tear, for every glorious memory there will always be moments that are incomplete. For every moment that I am ok, there will be moments that I am not ok.

So for all of you out there who struggle with your own demons, the only pressure you have is the pressure you put on yourself. Be gentle, go easy on yourself. Slow down, take a breath, step back and remember that tomorrow hasn’t happened yet; so don’t worry about it. And for those of you who see me smile, share in my laughter or create happy memories with me just remember that underneath I am fragile, I am still reeling, I am still trying to understand.

I am still missing him, and I always will.


www.justgiving.com/williamoscarmead

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

Grateful beyond words…

I miss you so much right now. I have found myself more teary recently. The smallest little things just set me off. I suppose there has been so much drama over the last couple of weeks but drama is an understatement. On that Monday afternoon when your little brother suddenly became quite poorly. We had been managing his temperature at home over the weekend, but on the Monday he seemed ‘different’ when he woke up from his nap. I sat your little brother, who was 10 days away from the age that you were when you died, on the sofa. I looked at him, and he looked through me, vacant, haunting eyes. I recognised those eyes. They were your eyes.

I called for help. An ambulance was here before I’d even finished explaining the situation. Your little brother was grey, he looked, well, lifeless. His little chubby legs were becoming mottled and they were cold despite his high temperature. He was shaking, not shivering, but more like strange little twitching. The paramedics assessed him, and found he was hypoxic, his oxygen saturation levels were low and his breathing was irregular. They took your little brother off me to carry him to the ambulance. As I sat there cradling my tiny, but alive little boy in the ambulance, all I could see was you. Me cradling you in the back of ‘that’ ambulance. There was no rush, no sense of urgency, no life to save. This time was different, the lights were flashing, if for one second my mind drifted away from the present and into the morning of the 14th December 2014, it was quickly jolted back to the very vivid present. As we raced through the traffic, your little brother was not very respondent. As I held onto him tight, whilst trying to keep his oxygen mask in place, I prayed, not to God, but to you. I begged you, begged you to look after him. I could feel my breathing accelerating, my chest tight and my muscles tensing as we were rushed through to resus.

The walk from the ambulance to the resus bay was a blur but as I rounded the very straight, dark blue curtain I was there. There, right where they examined you. The very same bed that I watched you, my lifeless little boy being handled in a way that you shouldn’t ever have been. I just wanted to scoop you up and run away with you, I imagined it, I could feel the wind in my hair, I could feel the cold air making my tears feel like ice on my cheek, I looked down to you, in my arms, mine. Stood there in that resus bay with so many people around you, I felt so separated from you. So very, very helpless. There was simply nothing that I could to make it better. Now I was stood at the end of the very same bed watching history unfold right in front of my eyes. But this time was different, there was a sense of urgency, there were people reading out observations to the team, there were nurses trying to take your brothers blood, there were people comforting him, there was quite simply, life. This time there was life. As I stood there, I backed away, I felt like I was stood behind a screen, in some kind of viewing parlour, looking in, watching, observing, but removed. It was a looking-glass, I was so helpless. I could sense myself crying, I could sense myself making noise, but I couldn’t hear it, “no, no, no, no…” was coming out of my mouth on repeat, but I couldn’t hear it. It was all slow motion, desensitised to my surroundings and the situation. I couldn’t lose both of you. Then I heard it, the word I knew was coming, the word I dread to ever be used in any context other than a speech I give about you. Sepsis. We are treating Arthur for sepsis.

That awful, crippling word brought me to my knees. As someone bought me a chair, I started speaking, I could hear myself, focused solely on Arthur, my eyes fixated on his tiny fragile little being, “this is Arthur, it is not William, they are different, Arthur is not William, they are different…” over and over. Somehow, from somewhere I removed myself from the engulfing PTSD, I removed myself from the most traumatic day of my life and forced myself into the present. Arthur was placed in my arms. They carried on working around us, poking Arthur doing different tests, but all I could feel was warmth. Something that was missing from Sunday 14th December. Arthur was alive. He was going to be okay, he was going to be okay, I kept telling myself. You, William, answered my prayers. After four days in hospital, Arthur was allowed to come home. He was okay.

Today on the 14th October 2017 Arthur woke up.

An insignificant and non-important statement to most, but today Arthur is 383 days old, one day older than you ever were. A day that instead of waking up, you took residence in Heaven. Last night I constantly lay listening to Arthur breathe, the sweet sound of his snoring, for once grateful that he is slightly bunged up so I can hear him more clearly. As the minutes and hours ticked by. The light crept in to the morning, day 383 begun. Arthur was still breathing, stirring, waking. I did not have to force myself out of bed, I was not disappointed that I didn’t get a lie in. Arthur was alive. He is now older than you ever were. How can that be? You will always be older, but now in some strange parallel universe, Arthur is older than you. Today the emotional hangover kicked in. A day full of what if’s, a day full of why’s, why you? why not me? why did this happen? and a day of eternal thanks. When I plucked Arthur out of his cot this morning he placed his forehead on mine, his hands on my cheeks and cuddled my face. Somehow, in his own little way, he knew, “mummy, I’m here, I’m here, it’s okay”.

Today like most parents with small children I spent the day tidying up after Arthur, cutting food into impossibly small pieces, wiping snotty noses and little bums. And with every movement I was thankful. Thankful that I have a little boy to cut up food for, a little bum to clean, a little snotty nose to wipe, a chubby little face to kiss and an impossibly wriggly little body to cuddle. These are the things I miss about you William. What would you be doing now, would you be making a mess for me to clean, would you have a snotty nose, some things are left to the imagination. For what are milestones for Arthur are now imaginations for William.

So today as Arthur reaches a milestone that William didn’t reach and will never reach, day 383. Be grateful for the small things. When your children want that extra cuddle, give it to them. When they make a mess, remember it’s their mess. When they test your patience, remember they won’t forever. When they cry in the night, remember it’s better to be awake to a crying child than crying for a child that can no longer cry. Remember that life is for living, that tomorrow is not promised.

Today I am grateful simply for the fact that Arthur woke up.


www.justgiving.com/williamoscarmead

I just want to highlight that there is no link between William and Arthur having sepsis. It is sadly an horiffic coincidence, any can have sepsis.

Dear Arthur,

Today you turn one. A day that when you were first placed in my arms I never thought we would make. With every day passing filled with so much anxiety that you are on loan, that after day 382 we will have to hand you back, like we did with your big brother William, it felt like we would never reach this milestone. I have learned from losing William that I must manage my days and hours in bitesize pieces. Never looking too far ahead. A whole year seemed impossible back then. But here we are, we did it. You did it.

You my darling boy were born out of hope in the midst of grief. An innocent little boy with absolutely no knowledge of all that has happened before you. I have tried so hard to make sure that you have never witnessed mummy crumble, I don’t want you to be scared or worried about why mummy is upset. The time will come when we tell you that you have the most beautiful big brother, a brother who lived before you, a big brother that you will never meet but a big brother who is with you with every breath that you take. You see William’s photos all around you, you’ve watched mummy on the television talking about him, the time will come, but slowly you will get to know him.

But, you are you. You are your own little person. The most independent, determined and head strong little baby I know. Some say they wonder where you get that from…I don’t want you to grow up in your brothers shadow. Despite the attention your brother receives, it is YOU who bought us light out of suffocating darkness. You have been the reason that I have put one foot in front of the other. You are the reason I get out of bed on the days when life seems impossible; because do you know my little man, YOU saved my life. Some say that your big brother has saved hundreds, if not thousands of lives because he has given me the passion to campaign, but it was YOU that gave me the life to continue. You are part of this incredible journey. You are responsible for mummy taking a completely different path.

There was a time when mummy couldn’t bear to think about the next ten minutes of being alive. There was a time when mummy tried to take her own life; at the time believing that I could never exist without William. Had it not been for your daddy, mummy wouldn’t be here. There was a time when I couldn’t move, dress, speak coherently, or even think. I remember this time so vividly. A time I don’t wish to forget about, a time that is part of this indescribable journey of survival. It is a painful reminder of how many steps I have taken since then. They say there are five stages in grief, denial, anger, bargaining, depression and acceptance. I would say I have experienced some of these things. Not necessarily in that order. But the one thing I haven’t done is accept it. I don’t think I can accept the unacceptable. But during the most insufferable days when life has felt too much of a challenge I started to realise that the one thing your brother wants is his life. Who am I to waste the one, most precious gift that was robbed of him? I never realised this before you came along, you gave me the ability to see that as much as it’s okay to not be okay, it’s also okay to be okay. As they say the past is in our heads but the future is in our hands.

You have taught me that it’s okay to miss William whilst being able to love you too. You have taught me that it is okay to pine for William whilst being happy that you are in my arms. You have taught me that it is okay to be sad that William won’t reach the milestones that you will reach. As much as your brother floored me with the most overwhelming love, you have taught me that it can continue, for him AND for you. You have taught me that it is okay to live. You my darling boy, have lived on this Earth for 365 days and you will soon be older than William was but your innocence, your total, unrivaled, uninhibited love is something that I feed off daily, something that keeps me going and something that allows me to realise that you and William share a bond that is entirely unbreakable.

You are his and he is yours. You are both mine, and I am both yours, always.

Happy birthday sweetheart xxxxx


www.justgiving.com/williamoscarmead