Category Archives: Loss

Why I’m not angry and why I will always be positive

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Is seems so cruel that this week you would have started prep school. I have found it particularly difficult to see all the happy, smiling children starting their big adventure. Without thinking last Wednesday, I returned home from dropping your little brother at nursery and I drove through the town, past the infant’s school. A herd of small children and their parents. You can tell the youngest ones, all neat, pristine and excited. That heady mix of excitement and fear of the unknown changes to normality as you advance through the years in school.

It really is that first step of freedom, independence if you like. Somewhere where you will be able to forge your own life, make friends, carve your future in to the universe. Where, I, as your mum desperately wanted to wave you off. I wanted to experience that mixture of pride and nerves, not because I don’t think you would cope, but nerves about letting you go just that little bit more.

Me and you dad had it all planned out. We had reserved your place at prep school and paid the fee when you were just a few months old. We’d poured over the prospectus, pointed at the amazing activities on offer and imagined how cute and grown up you would look in the blazer. It will always remain an imagination for us. We won’t ever get to dress you in your uniform and adorn a blazer on your shoulders, no doubt, swamping your tiny almost 5-year-old body, with an equally over-sized rucksack on your back. But it would have been perfect. I cannot imagine anything more perfect.

This past week got even harder. I had to complete a form which required me to input the number of dependants I have. Staring at the tiny white box, I could barely force myself to scrawl 1 in to the box. It just felt like those 4 solid black lines were stopping you from also being in that box, because of course I have 2 children, but I no longer have 2 children that are dependent on me. I only have 1 child that I need to buy nappies for, I only have 1 little mouth to feed, I only have 1 child to tuck in to bed each evening. Don’t get me wrong, I’m not ungrateful. I am desperately grateful, I consider myself lucky, lucky that I have a happy, healthy toddler. I consider myself lucky that you are my son, that you picked me, I consider myself blessed that I was able to carry you inside my body for 9 months, that I got to give birth to you and feel every second of it and that I got to hold you in my arms for 382 days. I would rather have had 382 days than none at all.

I quite often get asked how I cope, how I manage to be so resolute in my mission to raise awareness of sepsis. Sometimes I ask myself how I remain so positive. I have the answer to that question. It’s really very simple. The one thing more than anything in the world that you want is your life. I have mine. I will not waste it; to do so would be like undermining the fact you lost yours so needlessly. Sometimes, like this past month, it has been a struggle. But I know that by being miserable, the only person it is affecting is myself, and those around me. What sense is there in that? I could be sad and angry that you died, or I can be happy and entirely grateful that you lived. You gave me the ability to be able to view life in its entirety, simply because your entire life was limited to only 382 days. None of us know how long we get to wake up every morning. So, I am going to use my life to be just like you were, selfless, loving, and living my life with a glass half full, not empty.

In your short life you didn’t know anger, sadness, regret, or desperation. I was your mummy then, and I still am now. So, I am going to share your positivity and love with the world.

I won’t ever get to see you in your school uniform, I won’t get to collect you and listen to your ramblings about your first day, or any day, I won’t get to help you with your homework, or console you if you weren’t picked to be in the team, I won’t get to watch you grow, I won’t get to hear you say I love you. But I know you loved me, and you know how much I love you. They were the last words you ever heard me whisper. So, I may be without a lot but one thing I am is your mummy.

We will never know what you would have grown up and become but one thing you will always be is my son, my baby, my forever William.

www.justgiving.com/williamoscarmead

My way of being Williams mum

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“Parenting a child that isn’t here is infinitely harder,
 than parenting a child that is”

When William died I can remember coming home for the first time since I had carried him out of our house when he had passed away. What I came home to was silence, but that silence was so deafening, the silence pierced every thought and I wasn’t able to escape from it.

William was still wholly dependent on me when he died. He was only one. We had gone from a flurry of nappies and being late for everything to silence and having nowhere to go.

The first year after William died was pure survival, just to exist was difficult, to exist in a world that William no longer lived in. Every single second, minute, hour and day was painful. Physically painful. I had to survive to find out what had happened to William, I had to endure an inquest, I had to hear those words ‘with better care William could have and should have survived’. If it wasn’t painful enough already, that twisted the knife that was permanently lodged in my heart.

When William first passed away I lost count of the times that people used the phrase ‘time heals’. Well-meaning people, not quite knowing what to say, trying their best to help, to say something, anything. At the time my response, perhaps not out loud but definitely in my head was that nothing can ever heal the death of your child; and I still stand by that. Time doesn’t heal but it does allow you to learn how to live again and I guess in a way that is healing.

As the time passes though you feel isolated as if you are in a different life from everybody else. When William first died my whole world stopped, and so did everyone else’s around us, but although tinged with sadness, people’s lives inevitably return to normal. They had to work, had their own families to look after, whilst we were just stuck. For the first-year people will look at you with that tilted head and enquiring face, taking extra care with how they ask how you are but as time passes greetings return to normal, well the way they were before William died. They stop asking how you are, genuinely wondering about how things are to fleeting acknowledgments.

After a while I had a stock answer, “yeah I’m ok, yano” and do a little tilt of my head, the conversation quickly changes to something trivial, something that is happening in the now. I’m okay with this now. Every time that I bump in to someone I don’t want to have to say well actually, when I woke up this morning William was still dead and I’ve still got to endure another day without his cuddle, his smile, his touch, his everything.

Dead.

That word, the word that everyone is afraid to use. A cold, hard, definitive word that no one likes to use. It’s strange because when William first died, I would tell people that he was dead, but after a month or so it changed to much softer phrases such as passed away, died, fell asleep, you name it, anything to avoid that word.

People are afraid of death, people are afraid of talking about dying, death and the dead. I’m not quite sure why. Maybe its fear, maybe its ignorance of not knowing what to say in response, but whatever it is I find myself softening how I talk about William’s death so as not to make the other person feel awkward. When I talk about William’s death on a pre-planned platform, such as the recent HSJ Patient Safety Congress it gives me the arena in which to express the cold, stark nature that his loss represents. I do wonder perhaps without the sepsis campaigning where my mental health would be. For me I find that campaigning is my way of somehow being William’s mum in the present, here and now.

When he died I had no nappies to change, no bottles or food to make, the mounds of washing soon depleted. In fact I didn’t wash William’s clothes that hadn’t already been washed. There was nothing, the investigation into his death soon took up most of my time, but once this had, thankfully concluded there was a deep chasm in which I needed to ‘do’ something. This is where my campaign journey began, my desire to ensure that no other parent has to endure the indescribable pain of losing their child or a child that has to lose a parent when it could be avoided.

Campaigning has helped me, it has been my way of grieving. It has not just been a time investment for me, but every time I stand up and open up my soul, it is an emotional investment for me. The moment I say ‘thank you for listening’ the emotional hangover starts. I think to be honest the part of me that I can no longer give to William, I give to others. It helps me and I hope it helps them.

My most important job will always be mummy to two beautiful boys.

William and Arthur.

www.justgiving.com/williamoscarmead

I wasn’t there and now you’re not here

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I’ve sat here and just stared at the screen not being able to find the right words to write. The screen saver comes on, your face, I lose myself in those deep and loving brown eyes and I realise there are no right words. There are simply no words.

I’m struggling so much right now, as the sun sets on another day without you I wonder how many more sun sets I will witness before I get to hold you again. If only I knew, if only I was able to mark the days off on the calendar with a big Red Cross. Maybe God knows, Sometimes life feels like a punishment. I feel so cruel and guilty saying that, in part due to your little brother, after all, how ungrateful is it to not want to be here when your little brother is here? But it doesn’t work like that. I’m torn, irreparably torn. Forever divided between two places. Here and there.

The happier my day becomes the more sad I feel. How is it possible for these two parallel worlds to exist concurrently; how is it possible to feel happy but so sad all in one. It’s terribly confusing. As we prepare for your little brothers baptism next Sunday I just can’t help but feel laden down with your missing presence. It’s not something I want to put to one side, it’s not an emotion I wish I wasn’t feeling. In a way I want to feel it, I want to suffer, I want to hurt, I hurt for you, I hurt for all that you are missing, I hurt that you don’t get to grow, that you no longer get to witness the sun rise and set.

You would be four years old now, approaching your first year of school. I talk often about the boy that I think you would have become. Quiet, intelligent, calm and loving. A little boy with so much depth, you already had that. I would lose myself in those big brown eyes, your way of loving, when I looked in to your eyes I felt an overwhelming sense of home. I could feel the love, it was tangible. Your curious and quiet nature meant that we were able to spend many tender moments together, I will forever be grateful for these. My body aches for these moments again. I am full of questions and wonder about the little boy you would have become.

When I first found out that I was pregnant I was scared. I was scared that I wouldn’t be a good enough mummy for you, that I wouldn’t know what to do, that I wouldn’t know what your needs were. I had no need to be scared or nervous, you made being a mummy easy. After you died I spent many hours with psychiatrists, trying to fix me, trying to convince me that life was worth living. It was during these sessions that one particular psychiatrist tried to understand just why I couldn’t bear to live without you, as opposed to trying to convince me that it was possible. He understood that all of my life, like most people as we grow up we learn from those around us, society, family and friends lay expectations in your lap, as we grow into adults we feel as though we are finally getting our freedom, but we’re not. The moment that we witnessed the world around us and all the harm that it could do is when we lost our freedom, our innocence.

Growing up I was fiercely independent. I have always felt that I am my own responsibility. I have always felt that I have only ever needed to rely on myself because at least that way the only person who could let you down was you. I have always kept something back, been wary, never giving my entire being to someone, that was until you came along. When I could feel you growing inside me, when I could hear your heart beating I just knew, I knew that this is what I was waiting for. I was waiting for you. I invested physically and emotionally in you. I knew that you would be all that I ever needed, I knew that you would never let me down, I knew that you would always be with me.

Call me a cynic but I have always lived with the thought that I was only round the corner from something going wrong. Inevitably, in my life, it has. But when I had you I knew that despite all that I have been, all that I have done, I got you right. I could be everything you would ever need. Only two weeks before you died I put you in your car seat and cried, why? Nothing in particular, nothing set me off, I just couldn’t believe how lucky I was to have you, I knew that despite everything, no matter what happened, that I would always have you. It would always be me and you. Then you were gone.

I can’t help but feel, despite the failings in your care, the many apologies, that I failed you. I had one job. People joke about managing to keep their kids alive today, I couldn’t do that. I couldn’t protect you, I couldn’t save you. You closed your eyes, you slipped out of consciousness and you took your last breath, your beautiful heart stopped beating and I wasn’t there.

I wasn’t there and now you’re not here.

Today I have travelled nearly 400 miles to deliver a talk about your life, and also your death.        People often ask me how I manage to retell the moment that I found your lifeless body, how I tried in vain to pump life back in to you, how I laid, cheek to cheek and begged you to wake up, knowing full well that you never would. It is painful, it is hard, with every word that I speak I know that I am doing the right thing. The gaping hole that your life left cannot be filled, but somehow I have had no choice but to continue, and I suppose this is my way of being your mummy still, until we meet again my baby boy.

www.justgiving.com/williamoscarmead

Christmas will never be the same…

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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…

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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.