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.
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.
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.
Sepsis account for 44,000 deaths in the UK every year. That’s more than bowel cancer, breast cancer and prostate cancer put together. This means that a 1 person dies from sepsis every 14 minutes.
I hope by fundraising we can raise awareness of Sepsis, 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.
£85 to save a life from sepsis.
£5 provides an information booklet to relatives of ten patients admitted to ITU.
£10 will allow the Sepsis Trust to distribute 200 leaflets to a GP surgery.
£50 a month will train one team of doctors and nurse on a hospital ward.
£999 will provide one hospital with a ‘sepsis pack’ to aid implementation.
So if you’d like to sponsor Paul you can do so via Williams Just Giving page below. If everyone that reads my blog donates just £1 we could raise thousands, so please dig deep xxx
After months of waiting, and what seems a lifetime, we are finally in receipt of the NHS England serious incident report into William’s death. This will go to press in the Daily Mail on Tuesday 26th January. William’s story will cover 5 pages including the front page. We have worked closely with the Daily Mail, and in collaboration with NHS England, and the paper are paying us a fee of £8,000, with my gift aid, we will be donating £10,000 entirely to the UK Sepsis Trust as part of William’s Legacy.
Paul and I are heading to London tomorrow, and on Tuesday morning from 6am until 8:30am I will be appearing on Good Morning Britain on ITV. I will be interviewed by Piers Morgan and Susanna Reid, and I’ll be sharing William’s story. We will be using this huge media platform collaboratively with the UK Sepsis Trust and NHS England to drive forward the recommendations made in William’s report, as a direct result of his death.
I know many of you follow my blog and William’s story from all around the world, but please go and buy the Daily Mail on Tuesday and if you are unable to buy a copy, please read the paper online; and tune in to me on the TV. There is no doubt that William’s story will be covered on the national news BBC and ITV. It will be confirmed tomorrow whether I will be appearing in person or via video link on the news. It is expected for me to be appearing on the radio too. So please, if you are outside the UK, please tune in online.
As a family we will be doing our utmost to educate the public and spread awareness of sepsis, so others do not have to suffer the same tragedy that we are enduring. This is William’s lasting legacy.
It costs £85 to save a life from sepsis, £10,000 will save over 100 lives, and in addition to the fund-raising we have been carrying out, this will push William’s Just Giving account to nearly £20,000. Help us raise funds for the Sepsis Trust by donating below, and please share this, buy the paper, tune in to the TV on Tuesday 26th and make sure you know what sepsis is.
N.B. The release of William’s story in the news is subject of course to world news, according that World War 3 doesn’t break out it will be fine.
I’m going to write this blog purely about you, and how you have all helped us as a family to raise nearly £10,000 for the UK Sepsis Trust for William’s birthday.
The final figure hasn’t been totalled up yet, as we still have donations coming in and payments made for auction lots that were won. But as a rough breakdown, we raised over £3,500 via William’s Just Giving page (including giftaid), for those who couldn’t attend and bought balloons and raffle tickets. The online auction raised over £950, the auction at the event raised £400. Donations on the day for raffle tickets, balloons and donations exceeded £1,000. Worldwide Financial Planning (where I work) have agreed to match fund £1,000 and we are currently waiting for Santander Bank to match fund, the amount has yet to be confirmed. A cake sale at Standard Life raised over £400 with Standard Life matching the amount raised. There was a balloon release held in Spain where my family live, this raised over €300.
There are some events still taking place, these funds will be added to William’s Just Giving page. With a target of £10,000 I think with future fund-raising we might consider a new target!!
There are so many people that we need to thank, those that donated raffle and auction prizes. Their time, their help and most of all the support. Not just from family and friends but the wider community, including all around the world. There have been balloons sent to heaven for William from the States, South Africa, all across Europe including the UK, Australia, New Zealand, and Hong Kong. I am absolutely certain that William caught every single one.
Given the awful weather conditions, lots of people turned up to help us celebrate William’s birthday, it was extremely windy and rainy, typical UK style, but nevertheless, people put their wellies, hats, gloves and coats on and mucked in to help the family through what was an extremely emotionally charged day. At one point half of the balloons blew away, when a gust of wind was determined to steal our gazebo. But that didn’t spoil anything, we blew the reserve balloons up and let them go instead. As Paul, helped by all the children, let the balloons go from a big net, the Sun broke through the clouds, a perfect, tranquil and beautiful moment, I’m sure William knew. Our little two-year old was watching over us. I would also like to say a very special thank you to a lady in Canada (I haven’t been specific with location from where they were set free to allow the students anonymity). Lydia along with her students raised and set free beautiful Monarch butterflies in William’s honor. They did this a couple of months ago, however, I thought it would be lovely to include these photos with William’s balloons. These elegant butterflies, one male and one female are currently making their way to Mexico. Their wonderful teacher explained about William and his story and when they set the butterflies free, they all said a prayer for our little boy.
We are fast approaching one whole year without William, but that is an entirely different blog altogether. I want to sincerely thank everyone who has supported us, and restored our faith in humanity. I will shortly be putting up a gallery on my blog of all the photo’s we have received, so if you have any, please send them to me. If you are able to help us reach our £10,000 target, you can by visiting William’s Just Giving page by clicking this link I’m sorry that I might not have thanked everyone personally but we love you all xxxx