The true reality of sepsis

Your last journey xx

Your last journey xx

Dear William,

844 days. Today is 844 days since you were taken and 824 since your last journey. A journey mummy and daddy took with you. Mummy wouldn’t let you go on your own so she asked for a hearse that we could travel with you. I remember sitting in your room, looking at the very spot you were last alive, and out the window I could see you coming. I shouted “William’s here”, the last time I would ever shout that, I ran down the stairs, opened the front door and watched as you were driven past. The hearse dwarfed your little coffin. Coffin’s should never be made that small. You shouldn’t be in one. Life is so unfair.

Your coffin surrounded by beautiful flowers spelling out your name, and your nickname ‘Grumpus’. There was a little pillow too, and sat proudly with you on your coffin was a little reindeer made out of flowers to match your favourite teddy and two red roses from mummy and daddy. To see your name in flowers took the breath right out of me. Your name should be in lights, not flowers. It didn’t look right, how could it ever look right? You were so small. As I stood there trying to take it all in, I couldn’t, that was you in there. My baby, My beautiful little William, gone, never to walk up the steps to the front door, never to learn how to ride a bike on this very road where I was stood. At this moment I had no recollection of anything else around me, only total awareness of you. Knowing I couldn’t touch you ever again, knowing you were in that little coffin and I couldn’t see you.

Grumpus xx

Grumpus xx

Mummy rested her hand on your coffin for the longest journey of our lives. The hand that fed you, played with your hair and soothed you when you were upset. Now all I could do was place my hand on your coffin. People were looking as we drove past. I could see the injustice written all over their faces. Their mouths forming an ‘O’ as their jaws dropped, shocked, no coffin should ever be that small, 30 inches to be exact. As we pulled up mummy climbed out and stood there, preparing to carry you for the last time. We carried you in to your own funeral to the words of Gordon Garner’s, Heaven Got Another Angel the words resonating through my body.

Mummy had asked for two seats to be placed right next to you, so that you knew we were right there, right there with you for as long as we possibly could be. Mummy placed your little photo by your coffin so I could see you, but I knew, I knew that I was inches away from you. Some of the thousands of photo’s we have of you played on a big screen. Everyone knew what a happy, gorgeous little boy you were. It was heartbreaking sitting there knowing that there would be no more moments in time making memories like in those photos. Mummy would never get to see you running, mummy would never get to take your hand and help you cross the road, mummy would never hear you speak, she would never hear the 4 words she had yearned to hear from the moment she knew you were coming, “Mummy, I love you”.

Mummy stood and read for you. As I stood there the only presence I could feel was you, only you were in that room. I have no idea how I managed to do that, but I had to, I had to do it for you. Mummy would do anything for you, it was the very least I could do, to be able to stand there and make sure you knew how much we love you. Did you hear mummy reading, I hope so.

And then it was time for the curtains to close. This was it. Mummy would never see you again. You were gone. Mummy was gone. In that moment I knew, I knew that the life had been completely sucked out of me. My heart and soul is with you Grumpus, I know it is in safe hands xxxx

I wanted to write this post because it is impossible for you unless you have had to say goodbye to your child to understand the depth of pain I am experiencing. Time doesn’t heal you know. I will never suddenly wake up one day and think ‘oh, I feel better today’. It doesn’t happen. I miss William today, I’ll miss William tomorrow and I’ll miss William until the day that I no longer wake up. Will the pain of being so far away from him lessen? no, it won’t. If I asked you which one of your children you could give up? Would you feel any better after 1 week, 1 month, 1 year, 10 years.

Society does tend to put you into a category, for the first year people look at you with sympathy. But as you advance into the second people have a certain expectation that you are ‘ok’. By and large I am ‘ok’. But what is my ‘ok’ is, and what is your ‘ok’ is, are very different. I’m aware, tolerant even, of the fact that people don’t understand, and I’m thankful that they don’t, that as days drift into weeks, months and years, we bury William every day. We are expert at wearing the mask. We can hold conversation, we can smile and laugh, and sometimes, especially with Arthur we are genuinely happy. But, William is still missing, William will always be missing. Although time gives us the ability to practice, practice being ‘normal’. Be under no illusion that there is not one single day that we don’t cry, that we don’t wake up longing for him. Simply, I miss him with every breath I take. My arms yearn to hold him, to feel the weight of his beautiful little being, to hold him close to me. To watch the gentle rise and fall of his chest as I watch him sleep. To be able to reach out and physically touch him, for real, and not just in my dreams.

Sepsis did this.

Sepsis, the ‘silent killer’. Sepsis sapped the energy from my life and plunged me into a place of silence. Sepsis may be silent when it creeps in to your life, unsuspecting, indiscriminate, and all-consuming but the silence to follow is deafening. William’s life was silenced, silenced forever. There will be no babbling, no first words, no ‘mummy, I love you’s’, no more crying or laughter. The silence that sepsis forces into your life is the most powerful scream. A guttural, earth shattering, animalistic cry that no one can hear, just you, in your head.

You see I didn’t know what sepsis was, it seems hard to look back now and believe, truly be able to tell myself that I didn’t know what sepsis was, now I seem to be equipped, chapter and verse on one of the UK’s biggest killers. How did I let my little boy down? Why didn’t I know? I should have known. But I didn’t. You can’t sugarcoat the truth that there are millions of you out there who don’t know about sepsis. You can’t sugarcoat the truth that without the knowledge you’ll be able to do anything about it. Simply put, today, there will be other families torn apart by something they didn’t know about. Families who will question their thoughts and actions for a lifetime, not being able to do anything about it, not being able to control it and forever wondering why they didn’t know. And forever feeling, despite people’s protestations, that somehow it’s their fault.

When William died, I didn’t know what to do with myself. I didn’t have a little human to pick up, to play with or cuddle. Every day I would thank God for William’s life. Every day I would hold William close and thank him for picking me to be his mummy. Thank him for giving me perspective, thank him for giving me love and thank him for giving me life. A life lived with no boundaries, that is limitless and endless. William taught me to be free. William gave me this without ever speaking a word. Sometimes there are no words for depth of feeling, emotion or reason. Sometimes life can only be conveyed with actions. When William died, I lost my window to freedom, I lost my boy, I lost a part of my life. How was I supposed to love, what was I supposed to do with this fire in my chest? Today I have the answer for that. The answer to that question is ‘this’. This is what I’m doing with that fire in my chest, the love with no place to go. I’m giving it to you.

I don’t know why or what I expected by sharing William with you. What I expected from talking so publicly about his life but also his death. It is painful, why did I do it and why do I still do it. I didn’t set out purposely to help anyone, I shared William because I needed to rescue myself, rescue myself from this silence. I needed to shout, I needed to share, and I still needed to love my little boy. I still need to be his mummy. So, very selfishly I started talking and a world opened up. A world in which I was still able to be William’s mum. I do wonder every day how many parents there are out there whose children have been silenced by sepsis, and how many children, children who’ve lost their precious mummy or daddy. How has sepsis changed their voice? Irreparably I imagine.

Did you know that this week alone a whole classroom of children will be silenced. The largest passenger plane, carrying 840 adults, will be wiped out, just this week. Knowing this really hurts, knowing that some of these people are in the position I was in on the 13th December 2014, a position of ignorance. Not knowing what nightmare is entering their lives. The UK Sepsis Trust desperately want to launch a national public awareness campaign for sepsis, and I desperately want them to as well. Did you know that with this campaign, with better knowledge 14,000 people could be saved? William could have been saved.

I have pondered over whether to show you this photo, this was taken a couple of hours after William had passed away, but he is still my little boy and this is part of our lives. This is what grief really looks like. This is what sepsis does.

The true face of grief xx

The true face of grief xx


www.justgiving.com/sepsisunited

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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

Your 3rd birthday

William on his first birthday xx

William on his first birthday xx

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

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

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

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

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

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

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

From your ever-loving mummy xxxxxx


www.justgiving.com/williamoscarmead

Your hand prints on my heart

Painting pickle xx

Painting pickle xx

After checking the paint was non-toxic, covering the floor in a plastic mat, and covering the table in brown paper, we undressed you to your nappy and put you in a t-shirt bib. We were all set. Ready to make a mess, ready to make more memories, ready to make prints of your ever-growing hands, they were slowly losing their chubbiness, and mummy wanted to capture every change as you grew from a baby to a toddler. After 30 minutes of painting and 29 minutes of wrestling with you to stop eating the sponge dabber, we finally got a lovely clear hand print. It was time to pop you in the shower, after covering yourself in little hand prints, you had done an excellent job of turning yourself into a smurf. Mummy still has this little hand print on the fridge, a constant reminder of the fun we had in the short time we were blessed with you. Little did mummy know, your next hand print would be taken after you had died.

Your hand I remember placing on mummy’s face as I held you at the hospital, to feel your touch, and to feel your skin on mine. I can still feel your little hand on my face now, and your not so chubby fingers entwined with mine. I held your hand for so long that by the time I couldn’t hold you any more, your hands were warm. I wanted so much to make you warm, to pull you so close to me that somehow my breath would warm you up, but it wouldn’t. Instead I cuddled you tight, your head resting in my neck. Mummy’s tears making their way down her face landing on yours, some would land on your eyes and it would look like you were crying. Mummy had enough tears for the both of us.

When I was pregnant I would often think how amazing mother nature was. I would marvel at your perfect toes, perfect ears, perfect everything. I tried for so long to understand how all of your little features had grown and formed exactly as they should be, how, by eating food full of nutrients and sleeping well it would in turn look after you, keeping you healthy, my body nurturing you and keeping you alive. How it could even be possible that there were two hearts beating in mummy’s body. Now your little heart wasn’t beating any more, and as I laid there, with your hand on my face and my tears falling down your cheeks, it felt like mine had stopped too.

As I lay there with you wrapped around me, I could not have felt more at peace with you in my arms. That’s where you belong, in my arms, I knew these moments were sacred. I knew these moments were limited and I knew my time holding you was running out. Nothing could prepare me for the moment that I had to place you in your coffin for the last time. It felt like I was closing the lid on my life, and the truth is, I was, you were my life and you still are now. That’s when the fear set in, knowing that I would never see you again, never kiss you again, never hear you again and never be able to hold you again. I had been the first person to hold you when you were born, I was the last person to hold you before you died, and I was the last person to hold you before the little lid was shut for the last time, the light being diminished from my life forever.

My special daddy…

Today is a day that is a day dedicated to Father’s, but daddy every day is a special day that should be dedicated to you.

I know that if I was there, I would have made you a special card, with sticky fingers and lots of mess. I would have made you ginger bread men at nursery, but the little men would have come home with no arms, because I might have eaten them on the way home. Mummy would have told me not too, but I would have done it anyway, you would have loved them without arms anyway, I just know it.

With mummy’s help I would have made you breakfast in bed, but not before having snuggles, and then I would have done some really good jumping up and down on your bed. And because you’re super lucky I would have helped you eat your toast, because that’s my favourite.

But the thing is, I’m not there. But today doesn’t feel any worse than yesterday or tomorrow, maybe slightly more poignant, because we don’t get to wake up together any day and this makes me really sad. But I don’t want you to be sad, because you’re being the best daddy that I could ever wish for. And for every day that we spend apart is one day closer to the day that we’ll be together again. But daddy, you have a really important job to do, you and mummy. I gave you a really special gift, I gave you a little baby, a little brother or sister from me, because you deserve it, you deserve to be happy, you deserve to be able to hold a little baby again and you deserve to love and be loved. Just like we did.

Daddy I really miss you, and I see how upset you are, I see mummy cry and hurt and I see how you look after her. I know how much you worry about her. I know that despite all of your own pain you make sure that she is ok and the little peanut growing inside her belly. I know there will always be something missing from our little family of four, but just know daddy that I follow you around all the time. I never leave your side. I know that your strength comes from me and as you gently put one foot in front of the other, I will hold you. I will quietly slip my little hand into yours and slowly help you forwards.

From my little white fluffy cloud I’m sending you the biggest, squeeziest of all the hugs.

I love you daddy, your little William xxxxx


www.justgiving.com/williamoscarmead